Abram Henry's fight against West Syndrome

Autism: the Next Frontier

2011-08-17T22:59:00.000-07:00

One more diagnosis, but the same sweet little Abram...

After Abram made three visits to Children's Autism Center for testing, Brandon and I met with Abram's Clinical Psychologist there yesterday, who confirmed that Abram does have Autistic Disorder. Since 40% of the kid's with West Syndrome develop Autism due to the seizures, Brandon and I knew that this was a big possibility, so it was not a big surprise.
For those that are not very familiar with Autism, a diagnosis of Autism is made when a child displays at least 6 of 12 symptoms across the three areas of: social interaction, communication, and behavior. According to Children's, Abram tested evenly in all three of these areas.
In addition to the diagnosis, the Psychologist at Children's spent nearly an hour talking through her recommendations for Abram, answering questions that I had, and explaining the two large resource books that she gave to Brandon and I.
In some ways, Autism seems like an easier thing to rap my head around than epilepsy. There aren't any Frankenstein size brainwaves like hypsarrhythmia that threaten to fry the brain, and the number one treatment for Autism is not also the leading cause of a high death rate (as it is for West Syndrome).
For now, the main focus is getting Abram to engage more, and learn more skills. His psychologist said that after he works on that for the next 18months, they would like to do another assessment, and check on his progress. One thing that she mentioned is that Autistic children are usually harder to motivate to learn, as they are typically incentivized by concrete things, and food (not by social motivation). It makes perfect sense that Abram's newfound freedom to eat whatever he wants has inspired a desire in him to communicate, and interact with others more.

Abram has been babbling a lot, plus he is using sounds in addition to hand-overhand communication. "Ba ba" means bath, "wa wa" for water, "mmmm" for more, etc. He still uses the few signs that he knows as well, but I have been working on getting him to try to use actual speaking to communicate too. He definitely seems to have his own unique talents, and intelligence. He notices things, and figures out things that even my older kid's have trouble with. Abram can whistle, snap his fingers, and move just about any object in order to get into mischief.

Much thanks to all of you for your support and prayers as we trek down a new road. It is much appreciated.

Lamb Henry

Fun With Food!

2011-06-16T00:26:00.001-07:00

After 3 years of being on the very restrictive Ketogenic diet, Abram has found carbohydrates to be delightfully fun. The first time I game him a cookie, he seemed a bit unsure as to what he was supposed to do with it.

Of course, his siblings have been more than happy to show their brother how to eat just about anything in the baked good department.

Abram has entered this new world of food inclusion with all of his senses ready to take it all in! He insist on making every meal, a multi-sensory experience.

Part of his scientific of discovery process is estimating the density of each food by the highly specialized process of crumbling. Yes, he really insist on it. REALLY. If I stop him from this important research process, he gets rather fussy. So, some degree of mess has become excepted.
I just hope that if "works" can get me into heaven, it will be the specific work of sweeping. It does seem to be my new hobby, and I enjoy it more than weighing food on a gram scale (that was so months ago).
When I give Abram warm food, he will often put it up to his face to feel the temperature before he tries to eat it.

So far, Abram is a huge fan of chocolate, Cheetos, yogurt, and toast. He still loves butter though. As well as many of the other things he ate on his Ketogenic diet. I have not been able to get him to eat apples since he has had more choices though. Even when it comes to homemade apple pie, the only thing he is interested in is the crust. Since apples were his primary favorite allowed carb on his medical diet, I expect that it may be a while before he is interested in them again.
On Monday, Abram had his last follow up with his neurologist. Now that my sweet little guy has been seizure free for so long, his Dr. said that it is time for Abram to move from having his neurologist be his primary physician, to it being a pediatric developmentalist. Obviously, with Abram's history of having 100 seizures a day, the main goal over the past 3 years has been getting the seizures to stop. Now, it is going to be time to focus on the impact West Syndrome has had on Abram's developmental state. His neurologist said that he wished that stopping the seizure would have made a bigger difference in Abram developmentally.
Sadly, there have not been any dramatic changes in that department. He has been making slow but steady progress in his non-verbal communication, but that is about it.
Without seizures, or a crazy diet, Abram just seems happier, more energetic, and interested in communicating with those around him. The neurologist also told me to look for Abram doing any strange repetitive actions, as an indication of a return of seizures. There is a 40% chance of the seizures returning in kid's with West Syndrome, though I don't except it. Austim is also a very common side effect of West Syndrome. On my request, Abram's neurologist sent a referral for him to be tested for that at the Austim Center.
There is a genetic test that the neurologist wants to be done there too, called CGH Array. I can't remember if that was included in the genetic testing that Abram had done about a year ago. I am just waiting to double check his medical records before scheduling more testing.
The neurologist said that he believes that Abram's seizures, West Syndrome, poor sleep, and developmental delay are all connected. With the CGH Array testing, there have been some connections between West Syndrome and Austim genetically. Though, no chromosomal abnormalities were found Abram's previous genetic testing.
Abram loves playing ball. He can throw it back and forth with his family members. Currently, he is better at throwing than catching. He thinks it is really funny to have Brandon or I throw the ball really high in the air, and he will hand it to either of us just for that purpose, with much excitement ensuring upon seeing it go high into the air.

The month of June has been rather exciting for the whole family. Isaac and Bella are just finishing up their school for the year. Normally, the kid's will do lots of reading in the summer, and I take them on weekly field trips, to keep them busy, and their brains entertained.
The whole Henry family had a great time hosting some dear friends from Texas the beginning of this month. It was great having a little part of Texas with us for a whole week, as well as an extra little one around to adore. Isaac and Bella greatly enjoying playing the part of tour guides around our area, as well as the parks and zoos there was an extra excuse to explore.

For some reason, Bella was extra excited about seeing the sharks.
As if all that were not enough fun for one month, my sister Harmony, is going to be here for a long weekend, to help me get together a pre-school plan for Abram. Harmony, is working on getting her masters in special education, while she works as a behavioral therapist, so she has been an amazing resource for me.

I am feeling really thankful that it is officially time to move from seizure control, to learning development. It will be a long and arduous battle, but with so much to gain, there are bound to be lots of victories along the way.

Lamb Henry

Happy Dance Time! The Ketogenic Diet is OVER!

2011-02-22T17:36:00.000-08:00

Sweet, sweet victory! Yes, after 3 long years, Abram is officially off of his Ketogenic diet! I received the highly anticipated email from Abram's Dietitian at Children's Hospital (below) titled "Congratulations!"

Today’s the big day!

You can discontinue the diet!

Abram is free to eat as he pleases!

Congratulations!

Thank God! Our prayers have been answered! Abram is still seizure free, medication free, and he gets to eat like a normal person again. *Sigh*
Abram had been eying some of the Valentine's treats I had made, so to celebrate his being off of his 90% high fat diet, he received his first sweet treat in years: a homemade Scottish Oatmeal Scone, with icing. He seemed VERY pleased to be handed such a baked good, but he was rather concerned that I would change my mind about letting him have it. So, you may see him trying to hide it under his arm in the first couple of photos.
After hiding it, and taking it for a few runs around the room, Abram finally took some cautious taste...
Then he commenced his happy dance...

Everyone should have a happy food dance!

Isaac and Bella enjoyed getting to see Abram have a sweet treat for the first time in many years!
When I talked to Brandon about the good news, he noted that the whole family would even be able to go to a restaurant together. I feel very blessed to be a part of a family that has been willing to sacrifice to keep Abram on the Ketogenic diet for so long. Simply going to dinner as a family as not been possible. It has been a daily challenge for sure, but it has been Abram's miracle, and worth everything!
In the words of Garfield "You know what a diet is don't you? It's "die" with a T!"
As you can see, Abram enjoyed every bite of his scone! The rest of the family and I are looking forward to Abram being able to eat food without the worry of having to rush him to the emergency room if he has too many carbs. I am sure there will be an adjustment period before Abram realizes that he his free to eat what he pleases, and I am curious to see how he is going to respond.
I expect that there will be a lot more happy dancing in the future... from both Abram, and me!

Thanks so much for all your encouragement, support, and prayers. We made it! We survived! It was worth it. Thank God!

Lamb Henry

Happy Valentine's Day!

2011-02-14T03:13:00.000-08:00

Happy Valentine's Day! This is Abram's third anniversary of being on the Ketogenic diet. Three years ago, the day before Valentine's Day, Abram was at Children's Hospital, eating a non-traditional Valentine's feast of a teaspoon worth of tuna, with a tablespoon of mayonnaise.

It feels really good to be at home this Valentine's, instead of in the hospital. I think my husband would agree that being woken up at 2:30am on Valentine's Day to have Abram's blood taken, and glucose level checked, would not get more romantic over time. Being at home for Valentine's is just one more reason to be thankful that Abram is still seizure free!

This year, Bella wanted to help with the Valentine treat making. She made the sugar cookie batter, used the cookie press all by herself, and decorated the cookies with icing and sprinkles. She even corrected my math when I added the wrong number of cookie treat bags for her co-op teachers. Bella added "Didn't you use math, mom? I used math. That's how I knew."
Abram still has a couple more weeks before he gets to have any sweet treats. For now, he is enjoying low-carb bread with butter. He loves it! I can't tell you how many times Abram has tried to steal the crust his siblings have discarded from their sandwiches. He is definitely a "eat the crust" kind of kid. Or, an eat nearly everything kind of kid.
It seems that Isaac's main excitement over the Valentine's holiday is the food. The kids were kindly invited to a friends house for a kids Valentine's party, and card exchange. There, I noticed that when Isaac received cards, he was polite, but unexcited about it. However, when he woke up to a breakfast of Scottish Oatmeal Scones with icing and hearts, he wrapped his arms around me and said "I love you. I am glad that you are good at baking."
I went to a family wedding in Texas the end of last month, which was the first time I had ever traveled more than several hours away from Abram, or been away from all my kids longer than one night. I was able to see my new niece, and my two new nephews. Getting to see Sunshine wearing outfits Bella used to fit into was adorable! My sister Dayspring was there, with her whole crew that now includes four little boys. All precious of course, and one happens to be an awesome dancer, which I did not know before the wedding. It was the first time I had my feet on Texas soil in years, and I still feel like I am on a Texas high. North of the boarder, south of heaven, there is just something about Texas. I don't miss the heat though, but it was nice to get a little sun.

I know that I am very blessed this Valentine's. Abram is seizure free. My kids are happy and healthy. My husband, whom I adore, still likes me, and he even makes me coffee in the morning. To an on going sleep-deprived mommy, that is one of the most loving actions ever! He who is love has been very good to me in the sweetheart department, and I am overwhelmed with thankfulness.

I wish you all a Very Happy Valentine's Day!

Lamb Henry

.5:1 Ratio. The Last Wean Has Started!

2011-01-18T18:59:00.000-08:00

Today, I received the excellent news that Abram can now start the last ratio wean down for his Ketogenic diet. That's right, he is down to a .5:1 ratio of fat to carbs/protein. Come next month, Abram will have been on the Ketogenic diet for 3 years. Three looonnnnggg years! Or as Brandon said when I called to tell him the good news "It feels like 15 years."

I think Abram is really looking forward to getting to eating normal food too. Last week, I had to replace the wooden baby gate that was separating the living room from the kitchen. In hopes of turning that wooden gate into an open doorway, Abram went medieval on it by using the living room couch as a battering-ram. He was successful in the destruction of the gate, but I stopped him from enjoying the plunder of his kitchen conquest. Points to him for being resourceful though.

Thankfully, now that Abram is nearly done with his medical diet, I am able to start integrating food that he has not been able to have in years. Today, he even ate potatoes for dinner! So exciting!

I hope to have more good news to report next month.

Lamb Henry

All I want for Christmas is a 1:1 ratio!

2010-12-24T20:31:00.000-08:00

Merry Christmas! Wow! it is amazing how much more enjoyable the holiday season is when it is not spent in the hospital. It was 3 years ago now that my husband and I sat at Children's Hospital, days away from Christmas, realizing that the test medication Abram had just started taking was unlikely to stop the 100 seizures he was having daily.
Brandon and I had already decided that if the test medication was less than 100% effective, the Ketogenic diet would be the next thing we wanted Abram to try. Abram's neurologist had the Dietitian in charge of the Ketogenic Diet at Children's come by Abram's room before he was discharged from the third 24hour EEG he had that December. She told me that while Abram waited the months it would take for an opening to start the diet, the Atkins diet was something that Abram could on without his having to be admitted to the hospital.
Being that most kids that do well on the Atkins diet, do even better on the Ketogenic diet, Brandon and I were hopeful that there might be some reduction in seizures on either the Atkins diet or the test medication while Abram waited his turn in line for the Ketogenic diet.
So, that Christmas 3 years ago, when Isaac and Bella were enjoying Christmas cookies and candy canes, their brother Abram was eating mostly protein and fat, with some low carb fruits and veggies thrown in.
Fast forward to today: Abram has been for seizure free 2 years, medication free for nearly 1 year, and he is currently weaning off the Ketogenic diet. On the 20th of this month, I got an early Christmas present, in the form of an email from Abram's dietitian at Children's, asking if I was ready for Abram to wean down to a 1:1 ratio. Thankfully, I was able to report that Abram was still seizure free, and I could not think of a better Christmas gift than Abram getting to wean down to a 1:1 ratio!
The difference this ratio makes in what Abram can eat is HUGE! It is the difference between getting to eat a meal of 1/4 cup of rice cereal with butter and whipping cream, or being able to eat 1/2 cup of rice cereal with whipping cream (no butter). Even one of the moms in my homeschool group mentioned that she noticed a difference in Abram being more satisfied since he started his diet wean!
Isaac and Bella have had fun thinking of all the things they want Abram to eat once he is off of his diet. They even decided that instead of celebrating Abram's 5th birthday at the end of this month, we should wait until he is off his diet, so he can eat his birthday cake! If Abram continues to be seizure free, come February, he will be able to be completely off his diet. *sigh* That means I will be able to feed him without weighing his food on a gram scale!!! It is very exciting for everyone in the family, for sure!
Isaac and Bella have been enjoying their first year at homeschool co-op. I was concerned that Abram would have a hard time at homeschool co-op, as he often has trouble with transitions, and new places. The first day, Abram mostly cried, but since then, he has done really well. Isaac and Bella have enjoyed participating in the homeschool activities there too. The gingerbread church pictured above won 2nd place in the gingerbread house contest at co-op in the family devision. They both also memorized lines for the "Festival of the Famous."
Bella went as Annie Oakley, and Isaac went as Constantine the Great. They did get lots of complements on their outfits, though I and not sure if Constantine the Great actually wore basketball shorts under his toga, or if Annie Oakley wore a felt hat from the dollar store.
Bella was also a participant in the Christmas program. At first, she planed to perform an elf balancing act, but once her brother Isaac asked "How are you going to balance a reindeer on your head while your wearing your elf hat?" She had second thoughts, and lamented that dropping her stuffed animal reindeer on stage might "Wreck her carrier", and instead she went with a singing and dancing elf act. I sewed bells onto her elf costume, and I told her I would help her sing "Jingle Bells" while she danced. When her turn came, I put Abram in his stroller close to the stage, so I could keep an eye on him during Bella's performance. While introducing Bella, I hear a little "dink, dink" sound, and Bella whispers "Mom! Abram is playing the piano!"

Sure enough, I looked over at the side of the stage, and there was Abram with his arms stretched out, playing the high keys. Thus, I added to Bella's introduction, "And Abram is going to accompany us on the piano." Which was followed my laughter from the audience. I think Bella's carrier is safe.

Though at a slow rate, Abram is still learning new skills all the time. His eye contact and interaction with others has improved greatly, and his non-verbal communication has increased as well. When he wants something to eat or drink, he will take my hand, and put my fingers to my mouth to get me to sign the words "eat" or "water." He will also pick out the meal he wants to eat when I display 2 choices to him, or if he does not like the choices, he will walk off and pout to show his displeasure until I find better options to offer him. He has his own form of verbal praise, which is a kind of high pitched sound said softly. Sometimes he just wants to fuss and have his daddy and I play a guessing game of "What do you want?" He seems to think it is delightful to have people wait on him, trying to anticipate his every whim. He does still get frustrated sometimes when his daddy and I lose the guessing game, but for the most part, Abram is a happy kid.

Often, Abram will get into a laughing mood, where he finds almost everything funny, including the word "funny." Abram has been more interested in toys as of late. He has figured out how to put the magnet train ends together, how to work the little pull back car to make it go by itself, and he can take turns rolling/throwing a ball back and forth. Food is still trumps his interest in toys though. This past week, Abram decided to seize the moment; he climbed onto Isaac's back while Isaac was opening the baby-gate to make a piggyback escape out of the living room (where the toys are), and into the kitchen (where the food is). Thankfully, Isaac was not a wiling accomplice.

It sure is nice to have Abram's siblings on the Ketogenic team. I have heard both Isaac and Bella stop their friends from taking food out of the kitchen by saying "No, you can't take food out of the kitchen, because Abram has seizures!" I am not sure if their little friends understand the significance of Abram's magical diet, but I sure am glad my little ones do. Abram's neurologist made a point of warning me before Abram started the diet, that his having older siblings could be a setback, as some older siblings have been found sneaking sweets or other food to their sibling, without their parents knowledge, making seizure control difficult.
I feel very, very thankful this holiday season. Thank you so much to all our friends and family that have been so supportive through this journey that has arrived at seizure freedom. I really felt that God impressed on me that the Ketogenic diet was the right choice. It has limited my involvement in activities that involve food in any way (as well as my families), and everyday life is more complex, but it has also been Abram's miracle. Worth every sacrifice.

May your New Year be full of the realization that your every breath is a precious gift!

Lamb Henry

The Giant Leap Ahead

2010-08-01T00:22:00.000-07:00

Ready, set, go!

The leap of all leaps is soon ahead... come August 21st, Abram will reach his goal of being seizure free for 2 years! When Abram was diagnosed with West Syndrome over 3 years ago, he was having 100 seizures a day. Now all the seizures are being controlled by the magical Ketogenic diet. Zero medication. Zero seizures.
As if it were not enough to go from such a bleak outlook to such a positive one, the news gets even better: reaching the 2 year seizure free mark on August 21st, will greatly increase Abram's chances of remaining seizure free for life.
When it comes to West Syndrome, there is a 40% chance of seizures returning at another point in life. So, Lord willing, a few more days of Abram remaining seizure free will give him a 60% chance of living the rest of his life without seizing. Wow! It feels so good to see Abram this close to such an accomplishment.
Abram has an appointment with his team at Children's Hospital the week after the 2 year mark is reached, and once he is given the "okay" to wean off his diet, that process will take 6 months. Best case scenario, Abram will be able to wean totally off the high fat diet he is on to a normal one. Some people who weaned off the Keto diet do have to stay on a modified Atkins diet long term to maintain seizure control, so your thoughts and prayers during this upcoming transition are much appreciated.

The Fence is up!

With a little help from some other strong guys, Brandon put up a fence around the front yard this summer! A fence has been on the wish list for years now, but this year it has really became a "need" due to Abram being so much more mobile than he used to be. Caulk it up to one of the benefits of his being 100% medication free! The past month, all the Henry kids have really enjoyed getting to spend wonderful days outside. Some mornings, Abram will bang on the front door, and request some outdoor playtime while the grass is still wet with the morning dew.
A couple of weeks ago, on the same day, Abram twice hurt himself on the concrete walkway in the newly fenced in front yard (nothing major, just a couple of boo boos that needed a band-aid). I happened to mentioned this to Brandon, and on his next day off, that awesome daddy was busting through the 5 inch layer of concrete, and hauling it off. Brandon filled in the area with dirt, which Abram has enjoyed playing with so much that Brandon and I have decided to wait on planting the grass seed there until the rainy season.
Like his daddy, Abram loves rocks (he is holding one in the above photo). Sometimes he will pick one up to carry around in the stroller when I take the kids for a walk around the neighborhood. So far, this summer has been very mild. Most of the days are sunny, breezy, and in the 70's. This is something I am exceedingly grateful for, because the last time Abram had breakthrough seizures, it was very hot, and he did not think the heavy whipping cream staple of his diet was very appetizing.
Don't let all the cute smiles fool you... Abram may be sweet, but he is also very mischievous!!! Since his last streaking incident at Therapy, I had him going Pajama Casual to everything for about a month. In my attempt for other non-strip clothing options, I tried to sew Abram a pair of button overalls made with a soft blue material; only to stop when I realized he was going to look like a giant blueberry the Umpa-Lumpa's should carry off. After more praying and shopping, I created some jumper outfits for Abram by sewing elastic waist pants to a button-up collared shirts. When I had Abram model my handiwork for Brandon, he said "It looks like he is going to church." So, now Abram has 2 forms of attire: Pajama Casual, and Church Dressy.
The food deviousness is on going. While at a playdate this summer, Abram seemed to be totally oblivious to a little girl enjoying a cookie a few feet away from him. Then suddenly, he whipped around, snatched the cookie away from the little girls hand, and took a bite. It only took a split second. Even though I was on my guard next to him, he still outwitted me. I took the cookie away, dug the crumbs from the single bite out of Abram's mouth, and gave the mom of the girl of the stolen goods a dollar for its replacement. Such behavior is typical for Abram when it comes to food. Though I expect it shall not be once he is able to eat the forbidden foods he wants once again.
Another long favorite mischievous activity for Abram is stealing pillows off his mom and dads bed. He always has a pile of his own, so it is not a matter of being pillow starved. While playing with Isaac and Bella in their room recently, I saw a Abram's little figure darting from my room to his. He would run quickly into my room, steal a pillow off my bed, then quickly run back into his room with it. It does not take him long to stack up a nice pillow pile for himself, and there are many nights when Brandon and I find ourselves to be pillow poor.
Even though Abram is basically non-verbal, given his smarts and determination at getting into trouble, my hope is that he will be able to use those skills toward learning. Abram has recently started to help wash himself at bath time. I have also spent the last 3 weeks working on potty training him. The most successful day, he went pee pee in the potty 4 times!

The Rest of the Family

Isaac and Bella are always excited about Abram's little gains. They often cheer him on, and tell him what a good boy he is when he listens, or accomplishes a new skill.
Bella is currently a little snaggletooth. She was especially happy to welcome a little pink into her sea of blue this June when her uncle Rheam, and aunt Kara, blessed her with a girl cousin named Sunshine. Isaac and Bella have both been enjoying their summer break from school, but they still ask me regularly when homeschool co-op starts this fall. This is the first time I am enrolling the kids in co-op. I am very thankful that the co-op is making a special accommodation to allow me to be with Abram in the nursery while the Isaac and Bella are in their classes.
With only one income in an expensive state to live in, I am always looking for fun inexpensive activities for the kids to do. This summer, the kids have had a grand time going to local garage sales. It works out nice for mom too, as everyone gets exercise by walking around, is entertained, has a great time, all for the price of a cup of good coffee.
Last weekend, Bella found something at a garage sale that has been on her wish list for months: an Easy-Bake Oven! Isaac has a sweet tooth, and is the foodie of the family, so I think he has enjoyed it as much as she has. Isaac even came up with a couple of new meal times; Lack (between lunch and snack), and Sinner (between snack and dinner).
So far, the kids have made 3 cakes and a batch of cookies. Being the little entrepreneurs that they are, Bella and Isaac are already talking about how much they want to sell their goods for at a future bake sale.
Even with parents that become more OCD every day, I am still in awe of the miracle that Abram has been able to stay true to his diet the past 2 years. Much appreciation to all of you for your thoughts and prayers during this long road to Abram's recovery.

It is such a joyous thing to be so close to this giant leap ahead!

Lamb Henry

Spring has Spring

2010-04-12T14:44:00.000-07:00

Ahhh... spring! The rainy winter season has come to a close, now the sunny days of spring are once again here in Washington. While Texas has wildflowers this time of year, in the Seattle area, there are tulips and daffodils. Beside the front door of the Henry home are flowers the kids helped me plant, some of which were particularly chosen for their ability to attract butterfly's. Of course, everything planted in this area appears to attached slugs, so this year I mulched with recycled coffee grounds to keep those at bay (which was free thanks to Starbucks).

Bella has been butterfly crazy for a couple of years now, so this year I told her she could have a nature party for her birthday. In some ways, it was a consultation prize for my decision that the kids should have their birthday parties at home again this year. They have had the pleasure of attending event parties, and Bella very much wanted one for herself. Yet, Abram and food in the same place means that he must be chased around and constantly watched by me or his daddy, and while I enjoy getting the exercise, entertaining guest and going for a jog do not mix well. I told Bella that she and Isaac can have birthday parties in another location after Abram is off the Ketogentic diet next year. Once she planted the flowers for the butterfly's, she was sold on the idea.

For the party food; Issac and Bella assisted me in crushing up dark Oreos so the gummy worms and gummy bugs would have some "dirt" to make themselves at home. I also created some garden marshmallow peeps, brownies, and cream filled yellow cake cupcakes with chocolate butter-cream frosting.
Bella said that she did not want a very big party this year, so she invited mostly family over for her birthday bash. Much to her delight, her Mawmaw was able to come up from Texas to join her for the celebration. The day of the party was nice and sunny, and the kids chased anything moving (including each other) around with their butterfly net party favors.
The kids seem to be growing before my very eyes! It is amazing the things kids say as they grow into their own mind. Bella's new thing is that she will ask me to define words for her. Thankfully, I can always Google for an elaborated definition if she is not pleased with the one I give her. She also likes to ask me if something is famous. Bella: "Mom? Is Newton famous?" Me: "Yes Bella, Newton is famous." Bella: "What about carrots? Are carrots famous?" She does stump me sometimes!

Lately, Brandon and I have been talking about putting up a good fence around the front of the yard for the kids. Last spring, Abram was not able to open up the front door by himself, but now if the bolt on the door is not secured, he will open it up, and run outside as fast as his little four year old legs with carry him! Since Abram is developmentally delayed, he has no fear of the cars driving down the street, and when I am outside with him, I literally run beside him so I can grab his hand if he tries to go play with moving vehicles.
I think of Abram as my very own personal trainer. Abram still does not understand the need to wear shoes, so I am constantly putting his shoes back on his feet. It is a wonder that he has not misplaced any pairs of shoes yet. There have been times at the grocery store where the kids and I spend about as much time looking for Abrams shoes as looking for the items on the shopping list. I have learned to either bring Abram shoes with me when I am in a hurry, or just keep checking for shoes every few seconds.

The shoe thing is less of a complication than the clothes thing. Abram does not understand the need for those either. I have been keeping him in overalls and onesies for about a year, and I am now having to put another shirt over his overalls to keep him for undressing himself in public. His physical therapist found this out the hard way recently, but she said that it was not the first time she had a kid decide to go streaking while at her therapy lesson. I apologized just the same.

Abram has been very happy lately. It is amazing how even at 4am he can run around in circles laughing so loudly that he wakes his daddy up on the upper floor. He has a special little mischievous laugh that he does when he thinks he got away with something I do not like him to do, but since he is not verbal, he will only laugh and not tell me what funny thing he did is. Yesterday, he did this and I found out afterward that his humor came from his having stolen the bedspread off of my bed, which he hid it in his room. Sometimes he will drag it onto the stairs, which is the first thing I look for when I hear his mischievous laugh.
Following the lead of the rest of the Henry household, I think Abram's favorite person in the family is his daddy. Of course, I am home with the kids all day, and I am constantly telling them how wonderful their father is, which probably does not hurt. Brandon is better than I am at getting Abram to say "momma" and "daddy" on request, and it is very cute to watch.
For Bella's birthday, Brandon got her a baseball set. After she tried it out, Brandon asked me where Bella learned to play baseball. I said I did not know, then Brandon said "For some reason, she thinks that she is supposed to take the bat with her after she hits the ball, so she can use it to defend herself from being tagged out." Apparently, Bella had given her daddy a good 3 whacks with the plastic bat, and he had a hard time convincing her that was not what the bat was actually for.
The interesting thing is, I recall my little sister thinking that the bat was to be used for the purpose of defending the base when she was little too.
It seems that there are really only 3 options that I have found for Abram sleeping: 1) He goes to bed when his siblings do and gets up at midnight and stays up till around 4am. 2) He goes to bed between midnight and 2am and wakes up around 9am. 3) I keep him up and don't let him nap so that he is very cranky and tired, and he still does about the same thing as 1 or 2.

A family friend that also homeschools gave my kids a bunch of life science books on different animals, totaling about 40 different animal stories. I told Isaac that I would take him to the Seattle Zoo when he finished reading all of them, and I am happy to report that he has finished them, and he will soon get his reward. Brandon nor I had read that many books at age 7, and I have noticed that Isaac has retained at least some of the information. When he was aiding me in planting the flowerbed, he inadvertently broke a worm in two, then said "It's a good thing worms have 4 hearts!"
Isaac has always been interested in science though. One day, I was explaining to Isaac and Bella the theory of relativity, and how it relates to time. I spent a few minutes talking about the different time zones, explaining what "relative" meant when it comes to time, and once I thought they had a clear understanding of time being relative, I asked the leading question "So, time is... ?" Isaac quickly answered, "Money!!" I told his dad how Issac answered the question, upon which Brandon wondered "Has he been reading a Donald Trump book or something?"
For Easter, Isaac and Bella went to their cousins house for lunch and egg fun. In lieu of chocolate bunnies, I made Abram some Keto Almond cookies. They may look as delicious as a peanut butter cookies, but they taste like vegetable oil and baby formula. Thankfully, Abram is not very picky, though he did seem to enjoy crumbling the cookies up even more than he did eating them.
You may even notice that Abram used his hair as a napkin in the above photo. Why deep condition in the tub? On a high fat diet, every meal is an opportunity to enhance the appearance with that "I just got an oil treatment at the salon" look.

Abram loves to look out of windows. His physical therapist said she is really glad the office she works with Abram at has lots of windows. The physical therapy play equipment is placed right next to the windows, so when Abram is trying to look out of the windows, he has to climb the stairs and benches, thus improving his balance and strength.
Abram has had an improvement in his balance since he started physical therapy a few months ago. Since it has been successful, his therapist wants to continue seeing him weekly. His speech therapist also mentioned that she has seen an improvement in Abrams ability to follow directions, which is great as well.
When Brandon mowed the front lawn this weekend, Abram followed the sight of this daddy around the living room windows, yelling, and screaming "DaddyDaddyDaddy!" He was loud enough that his daddy could hear him over the sound of the lawnmower. It was supper cute! Abram is not even verbal and he still wants to take part in the yard work.
Abram is using hand over hand to show what it is he wants more all the time. If I am sitting down, and he wants me to fix him something to eat, he will pull my hand to get me to rise, and either lead me into the kitchen, or push me into the kitchen. He does this with his daddy also. He has tried the pinching method too, where he will come up to me, and pinch me with his little fingers as a way of showing me that he wants something... but I don't encourage it.

Abram has been reaching for stuff, or anything that looks like it might be edible, on the counters since he started the Ketogenic diet. Yet, his ability to get into stuff he should not have is much improved. I have resorted to locking Abram's highchair up in the pantry during non meal times to keep him from converting it into a latter for climbing onto the counter. He tries to use the other chairs in the house for this purpose, so I am constantly moving the chairs back to their spots.

Sometimes he reaches into the sink to find a cup when he wants water, but he also delights in finding bits of food that have been discarded by those not on his diet.

One small thing that makes a HUGE difference in my life is that Abram is now washing his hands with out throwing a fit. He actually likes it! He is big enough now that he can use a stool to sand on, and wash by himself with a little direction from me. Previously, the simple task of hand washing could rise such displeasure from Abram that his poor daddy would come flying down the stairs thinking a hospital trip to the ER was in order. "No dear, I am not practicing water-boarding... just washing the little angles hands."
In all seriousness, I am exceedingly grateful that Abram has been so happy and healthy. Everyday is such a grace. When I go to bed at night (or in the wee hours of the morning), I feel so blessed to be the mommy of such darling little ones, and that I can share raising them with my favorite person in the whole world. There are many challenges to overcome, for which I much appreciate all your prayers. If Abram can make it seizure free on his medical diet until September, it will make huge difference in the lives of everyone in his family, and be his best shot at remaining seizure free long term.

Lamb Henry

Happy Valentines!

2010-02-10T18:19:00.000-08:00

I hope that all of you reading this are going to take advantage of the opportunity to express your love and appreciation of those dear to you this Valentines Day! My little sweethearts and I took some Valentines photos for your viewing pleasure, though Abram was not as excited about the idea as Isaac and Bella were, so he had to be lured into the idea with some Ketogenic approved cereal.

Abram had a physical therapy assessment last month, and he has since been going in for weekly 30 min. physical therapy sessions in hopes of his achieving better balance, and improved personal care ability (such as putting on his shoes, etc). He has been getting more used to it every time, improving on his attentiveness, though he is not always interested in following instructions, he does seem more aware of what is being asked of him, which is a start!

Sadly, the sweet gal that has been Abram's speech therapist for the past year has moved out of state. Though his new therapist is very capable, it is sad to lose a member of "Abram's team". So, right now, twice a week Abram has therapy appointments. His physical thearpist doest plan to cut down his appointments to a more monthly basis at the end of February, depending on how things go.
Abram is still communicating more all the time through action, or noises, though not in words. I think he has even invented his very own swear word, "Ackkk!" Which he normally uses when I have requested he not do the naughty thing that he really wants to continue.
This past week, I went ahead and picked up a book on sign language for babies. I had been putting off teaching Abram sign beyond "more" "food" and "all done", but Brandon and I have come to the realization that words from Abram will be coming more slowly than hoped, so I am going to work on teaching signs to all the kids as a way to get Abram to communicate more before he can do so verbally.
Bella has just started reading on her own. She has a few very basic readers that she can happily read aloud, and even Isaac has been encouraging her on her progress. I was reading her a story out of a kids magazine recently, when she exclaimed "There are a lot of verbs!" The simple statements made by child just learning to read always delight me!
Isaac is all boy, and he has a talent for busting holes in the knees of every pair of pants I buy him. I got him a pair of Levi's, which lasted about 2 weeks before the first hole, after just a few months, the pair is almost comical in the seam to seam holes on both knees. The only pairs of pants he owns now without holes or patches are a couple pairs of Carhartt jeans. He is always full of questions, many of which I have I answer for... after he learned that the reason a bull whip cracks is because it brakes the sound barrier, he wanted to know how old he has to be before he can have his own bull whip. All I could say was "I don't know."

The toughest thing I am dealing with (still) is that Abram not a very good sleeper. While his sleep is much improved from when he was on medication last year, many of my nights make waterboarding sound like a day at the spa compared to jilt I get from the sandman. Abram does not seem to understand that just because he wants to go to bed late, and gets up early, does not mean daddy will appreciate being woken before then sun has risen.

All in all, I am very pleased that the kids have been so healthy, and generally happy. Everyday, I still watch Abram intently with the expectation of seeing seizures, and everyday over the past year and a half, I have not seen a single one! What a blessing it is.

Thank you all so much for your love and support. I hope that you all have a very Happy Valentines Day!

Lamb Henry

Merry Christmas and Happy New Year!

2009-12-27T14:51:00.000-08:00

Abram is 4 years old today! One more year feels like an accomplishment, as well as a great blessing. Last year at this time, Abram was still on medication, and now he will be totally medication free for a whole year come the end of January. Now in a non-medicated state, Abram has been playing with toys more, and more.
Last year, Abram still hardly noticed toys. Now, he will carry them around, or throw the ones he wants to play with down stairs, and carry them the rest of the way to the downstairs living room.
As has been the Henry family tradition, Brandon all 3 kids and I went to a U-cut Christmas tree place to get a Christmas tree again this year. Abram seemed to enjoy it much more this year, and can be seen above giving kisses to Santa.
Lord willing, by this time next year, Abram should be totally done with his medical diet. Having Abram on the Ketogenic diet has been wonderful in keeping him seizure free, and medication free. It is a rather high maintenance endeavor, though very, very worth it.
I am thankful that no more time was waisted before putting Abram on the diet, as he is constantly attempting to eat non-approved things, and his growing size and speed are not helpful in my combat to limit his mischievousness on this matter.
Isaac and Bella have both noticed Abram's increased ability to communicate. Though he is considered non-verbal, Abram has actively been trying to communicate more all the time. Sometimes when I turn on music for the kids, Bella will try to get her little brother to dance with her by taking him by both hands, and leading him to walk around in circles. The times when all three kids are dancing in this way, lots of giggles are sure to follow.
I plan to schedule Abram a physical therapy assessment at his next weekly speech therapy session. This is one test Abram has not done yet, so I am looking forward to hearing what comes of it. Abram normally responds well to physical contact, and when I told his speech therapist that I often rub his hands and stroke his face as a calming method when Abram is with me at the grocery store, she suggested physical therapy may be a good way to get through to him.
Brandon single handedly can not only carry the family Christmas tree, but has been able to keep the whole family feed and in comfort on his occupation alone. Lately, Isaac and Bella have been saying sweet things about their daddy on their own accord. The funny thing is that much of it mirrors something I have said, as did Bella's compliment to me on choosing such a great daddy for her.

As far as Christmas goes, I think Abram enjoyed the Christmas tree part most. He was not interested in wrapped gifts, though he did play with his toys he was given once they were out. He had fun running around the Christmas tree farm, and I saw him taste a Christmas tree there, and then his own Christmas tree once his daddy got it set up. It gave him temporary Christmas tree breath, and seemed to satisfy his taste curiosity for the tree the rest of the holiday.
Other than the lights that I put up, Isaac, Bella, and Abram decorated the tree this year. Isaac and Bella did a very nice job of putting all the ornaments on, while Abram did a very naughty job of taking the ornaments off.
Once the tree was done, Abram decided he wanted Isaac to check out some of the great things decorating it. Isaac was sitting on the floor reading, and three times Abram got Isaac's attention, then he would proceed over to the tree looking back at his big brother, he would reach out and touch some of the ornaments, then look back at Isaac again as if to say "Look at this!"
Since Abram is not able to talk, he twice got Isaac's attention by pulling Isaac's hair until he stood up, but by the third time, Isaac had got the idea, and he stood up upon seeing Abram approach, so the last time Abram gently touched Isaac then turned to show his brother the tree once more.
The photo above Abram seemed to have figured out how to get gifts from Santa without having to worry about giving up his naughty ways.

Every winter Brandon takes Isaac and Bella up to the mountains to play in the snow. Being that the valley in which the Henry home resides does not usually get much snow, it is worth the little drive it takes to find some. This year, since he has been doing so well, Abram came too.
Abram was much more interested in eating the snow than playing in it. Isaac and Bella enjoyed getting to slide down Crystal Mountain, and they have been asking about when they can go back to learn how to ski.
In the little Jr. Mrs. Claws photo below, you will notice that Bella lost her very first tooth.
The little bottom tooth became loose when she bit something, and she came to me crying asking me if I could fix her "broken" tooth. She went on to tell me that it was the worst day ever... and then elaborated on her dismay. Once I explained that she was growing up, and that her very first loose tooth would mean her baby tooth would come out and make way for her first adult tooth, she then decided it was her best day ever!

She pulled it the same day it became loose all by herself, and she never cried even though she said it hurt a little bit. She also became quite delighted with the idea that she was growing up, and took it upon herself to be more helpful around the house. She cleared the table, wiped it off, picked up toys, made beds other than her own, all because she wanted to do adult stuff.
Below Isaac tries to fill a very big Santa suit. Since Thanksgiving, Isaac was busy counting down the days until Christmas. I told the kids that if Abram is all the way off of his diet next year, we can decorate the tree with candy canes.
The below photos of Brandon and me were taken before he and I went to a Christmas party together. One of Brandon's cousins that live in the area have recently teamed up with me to do a babysitting swap. So, the plan is that Brandon and I will actually be able to go on monthly dates!

It has been a very full year. Abram is still making baby steps at improving, and his family is cheering him on. Thank you all for your support. With a heart of thankfulness, and a bit of grit, I am excited about embracing the blessing of another year.

May you all have a very Merry Christmas, and a Happy New Year!

Lamb Henry

A Year Without Seizures & Counting!

2009-10-04T13:58:00.000-07:00

As of the end of August, Abram reached the one year point of being seizure free! It sure feels good to be on the other side the past year, and even with the down turned economy, the future in the Henry home is looking brighter everyday. Now, Abram has less than one more year on his magical medical diet (the ketogenic diet). When I go to sleep every night, I feel an amazing sense of accomplishment, and a holy sense of thankfulness.

Learning for Abram has been very slow. He is starting to use signs more, and in the above photo he is making he sign "more" (both hands puckered and fingers together). At one of his recent speech therapy sessions, his therapist saw him sign "more" twice, which she had never even seen him do once before.
Abram is also getting in to stuff much more like a two year old would... which is great, but physically tiring for me. He has gone from being rather apathetic when he was on meds, to being mischievous, more purposeful in his playing, and more attention seeking from me and the rest of the Henry family. I put a lock on the fridge recently, as Abram was loving his new development accomplishment of dumping out all the heavy whipping cream on the floor when his mommy turns her back.

Heavy whipping cream is the main staple of Abram's diet, and due to its high fat content, it can grease up the vinyl in the kitchen for some awesome floor sliding. If you have not tried it... Abram will be happy to help out with this adventure.
Abram still does not seem to under stand the need to keep his diaper and clothes on, so he looks like a cute brown headed version of 'Dennis the Menace' most of the time, as he can not take his overalls off by himself.
I think that most little ones think that they can run at light speed when they are in their birthday clothes, and Abram is no different. In fact, I was giving Abram a bath recently, when his brother said to me "It looks like Abram is moving in fast speed!" Sure enough, Abram's little legs seem to be running faster everyday.
The above photo is Abram's thoughtful pose. I often wonder what he is thinking. His vocabulary is limited to about 10 words, and he has also become very fond of squealing like a pig.
When he wants my attention now, he will lift his arms up to get me to hold him if I am standing, and he will just crawl up into my lap if I am sitting down. He will even take my face in his hands and turn it into his to get my eye contact, which something he was not doing at the first of the year. He does this with his daddy as well.
Thankfully, Abram has been very healthy lately, and very happy. It is amazing how different a kid is minus 100 seizures a day and no medication.

I took Isaac and Bella to the dollar store recently, where they were both able to pick out one thing. In getting ready to go I asked Bella "Do you have everything you need now?" She replied "You mean what we want?!" She ending up picking out a little lip gloss packet that included a comb and brush, and being pleased with her own choice she said "I've always wanted a makeover!" Yes, she is only 5.
There is a hazelnut on the side of the Henry yard, and Bella loves picking the nuts off of it in the fall. She can not reach the really high spots, but will grab the limbs to bring some of the hazelnuts into her reach. While I was outside to help her and play with the other little ones, she asked me to bend one of the branches down to her so she could reach it, and while doing so I broke it.
Bella was rather delighted to find out she had such a strong momma, and said "I have never seen a woman do something like that before!!!" I made her and Issac some little leaf crowns from the limbs of the broken branch, and I think she looks like Diana, the Goddess of the Hunt. She told me however, that he is just a regular princess.
Isaac will be 7 at toward the end of this month, and he is very excited about his MawMaw coming in from Texas to be here for his special day. He has lost his 4 front teeth now, and is looking ever so cute in his snaggletooth state.

For school, Isaac reads a chapter to me every school day. He read a couple of the Young India Jones books, and he is now reading one of the Starwars books. I take the kids to the library regularly, and Isaac especially enjoys having the librarians wait on him, and help him look for an array of different books (I normally spend most of my time at the library chasing Abram around).
Isaac still really likes science, and he will often get several science books on a trip to the local library. After just such a time, he kept asking me if we had any garlic oil. I told him "no" a few times, then I questioned his unusual request to find his intension was to make a stinkbomb! I of course had to go over the rule again about "No making science experiments without mom or dad."
I love this above photo of all 3 of my little darling! Isaac and Bella still ask me once in a while "Will Abram ever be a kid? Or will he always be a baby?" I have explained Abram's development delay to them, and how they are due to his seizures, so they know all of that. They mostly "wonder" as do I, what the future will hold for Abram.

Abram loves his daddy! Abram has started following his daddy around the house. In these photos he was playing peek-a-boo with daddy's hat.

When Abram wakes up early in the morning, I quietly try to get him to go down stairs to eat breakfast without waking daddy. Abram's favorite thing though is to go play in daddy's bed upon waking... so sometimes Brandon wakes up to a little 3 year old climbing over him.

Abram really loves playing peek-a-boo under the covers too. Though it has been one of his favorite games for a while, he will now stay with this one activity longer than before, which shows a progression of his development.

Brandon turned 30 in August. As the tradition, I made him his favorite, German Chocolate Cake. He decided not to have a party this year, and said he would rather just hang out with his family or go to the mountain. Isaac and Bella were disappointed, as they love having people over... but they also just like having their daddy around too.
I was teaching the kids the days of the week recently, and I asked them what day of the week they liked the best. Isaac said that he liked Saturday the most because "That is that day that dad does not have to go to work." Isaac went on to say that he likes playing dad and going to do stuff with him on that day. Bella said that she likes Mondays "Because Isaac hates that day!" Lovely, she is a true little sister. She works hard to tease her brother as much as he teases her.
Brandon and I celebrated our 8th year anniversary in September. It was a much more joyful celebration than the last, due to the better health of the youngest Henry in bunch. While listening to Dr. Laura on the radio recently, and she explained to a caller that married life is really about "Learning how to not be a jerk when hard situations come up." I think that my husband is much better at this than I am. He is ALWAYS nice to me. Which is something I greatly appreciate. I hope to be blessed with many more years of worshiping the ground he walks on.

I know it has been quite a while since I posted last, so I tried to add extra pictures this time around. Thank you so much for your love and support!

Lamb Henry

Gearing up for the School year...

2009-08-11T11:31:00.000-07:00

Rhema and Abram playing together!

It was such a treat having my brother Rhema and my sister in law Kara around again for the summer. The kids and I very much enjoyed having them stay with us, and we were all sad to see them go leave for grad school yesterday. Rhema was really good at working with Abram, and motivating him to communicate. And I know that all my sisters were jealous of my having Kara around to help out. Since I was not working full time as I did last summer, I actually got to spend more time enjoying the extra company, as well as taking advantage of the many summer activities Washington has to offer. Brandon and I even got to go on regular dates, which we shall greatly miss until next summer.

Kara and I canning jam!

Abram had his Ketogenic check up appointment yesterday, and it went well. The nurse seeing him said that Abram "Boarders on the Extraordinary" with his ability to stay seizure free on the diet alone, and Abram's tolerance for it. The dietitian gave me a Rice Krispies meal for Abram, and Abram ate it with much delight this morning. Once he ate all the Rice Krispies off of his tray, he fussed a little bit when he realized all the cereal was gone.

It is amazing to think that the summer is almost over... it has gone by really fast.

Lamb Henry

Hot in Seattle

2009-07-29T00:53:00.000-07:00

Lately it has been quite hot in Seattle. Not exactly Texas hot, but very hot for Seattle. Abram has been rather cranky in the heat, and he is my only Washington baby, so it makes since that he is not used to it. Being that it was around this time last year that Abram started having breakthrough seizures, partly due to Abram's change in what he wanted to eat/did not want to eat when it was hot out, Brandon and I have decided to go ahead and get another AC unit for the Henry home. Currently the Henry home only has one upstairs, which has left the down stairs area to be in the 80's and 90's as of late. The temperature is supposed to reach a whooping 101 degrees tomorrow, which will be the hottest on records for some cities in this State. This is not normal for this State, as it is usually in the 68-low 70's most of the summer days (please pray that I will actually be able to FIND an AC unit).

I received good news from Abram's Geneticist this past week. All of the Genetic testing came back normal, which is great!! No clues as to why Abram is having seizures Gene wise (that we know of), but I am very thankful that there were no findings of more issues for Abram to have to conquer.

Other than the heat, the kids and I have had a great time this summer with extra family around, and doing fun activities that this great State has to offer. I have been trying to read over part of the "Healthcare for All" bill that is supposed to be voted on this week (HR 3200), but I have been very disappointed at the lack of information on how exactly how the bill will effect Special Needs kids (and adults). On page 353-356 the bill talks about Restricting Special Needs enrollment. While the wording is vague, it basically says that the Secretary of Human Health and Services shall give an analysis report to Congress that includes recommendations of treatment that include cost of plans, quality of care, etc. I have not yet been able to find any good articles on the limits of special needs that are in this bill, but it seems that the government is just trying to reserve the right to deny care to those that are more expensive to care for. If anyone has more information on this, I would love to know more about it.

Oh! Speaking of 'hot', Abram said the word "hot dog" for the first time last week. Abram has been eating hot dogs regularly for about 4 months now, and while I normally say 'hot dog' a few times when I serve it to him, it was the first time he ever said it. Isaac even heard it and said "Did Abram just say hot dog?"

Abram is still improving in his communication... though he has a really long way to go. He received his 6 month report from his speech therapist, and she said that since Abram has made his goal of 10 words or signs, she wants the new goal to be 5o words or signs. It is a BIG goal for him, but I am excited to see how far he will come in another year. Brandon says that I just need to get used to the idea that Abram will be my "Buster" (a character from the show 'Arrested Development').

Thank you to all of you for your support!

Lamb Henry

Teach A Man To Fish...

2009-06-24T01:36:00.000-07:00

Isaac and Bella have been begging me to take them fishing this past year. In fact, every time I take the kids with me to Wal-Mart they want to go look at the kid fishing pole section, and they talk about the toys that they want to sell, in order to buy a fun fishing pole. Now that the weather is so nice, I looked up a local trout farm, and I told the kids about the adventure I had planed for them. To my dismay, Bella was not very happy when I got to the part about "Springbrook Trout Farm" cleaning to fish for so that I could cook them for dinner upon return from fishing. She cried for off and on for about 5 min. while I tried to explain why it was that she could not actually keep the fish she caught as a pet.

Since Abram can hardly be trusted with a full glass of water, he got to stay home with his uncle Rhema while Isaac and Bella went fishing (for the first time ever) with me and their Aunt Kara.Their two little cousins around the same age came along to fish as well, so it was quite the party! I had expected it to take about 15-20 min. for them to get a fish, but I did warn both of my new fishermen that it was possible that they would not be able to catch a fish at all. It only took about 5 min. with hooks in the water before both Isaac and Bella caught their first fish...

Once the kids proved that the fish were really biting, Isaac was appalled that I had actually suggested that one of them might not catch anything.

The trout farm provided all the fish food the kids wanted; it was made out of flour and fish food, and looked like gray colored playdough. The kids rolled the bate up into a pea side ball, and then I helped them put it on the small hook on their fishing poll, all of which was provided free of charge.

I did not know how much patience the kids would muster, as they had not gone fishing before. They enjoy flopping around the kitchen like fish when they are supposed to be SITTING down and eating, so I told them if they liked this kind of fishing, they could try the time consuming kind later on.

The small fish were supposed to be easier to catch than the big ones, so after both Isaac and Bella caught a small one, they both decided to try the pond with the larger trout in it. It seems that the big ones were not biting as much, so after giving that a go, they went for the medium size trout.

Isaac ended up getting the biggest fish of the all four kids. He was very happy about that fact, and made sure to correct his sitter if she mistakenly said the biggest one was hers.

Nets were supposed to be used with the bigger fish. And buckets where provided for the safe keeping off all the fish while the catch of the day was being made.

Above is Isaac with the biggest catch of the day!

Once Bella had caught her two fish, she seemed to think of herself as a fishing expert, and in the above photo she is helping her cousin bring in his second fish.

Bella really wanted to hold one of the fish. Once she did, and Isaac saw how fun it was, he decided he wanted to hold one too. Their cousins even followed suet.

The kids thought that it was really funny when the fish splashed water out of the bucket, even though it sometimes landed on their faces. Bella did ask the employee at the counter if it would be okay to take the fish home as a pet, but thankfully the employee response was that there were no containers for pet fish there, and all the kids seemed to be satisfied with that answer.

The kids were able to pose with their catch before the fish got cleaned. Isaac was not very happy to see blood coming out of the fish heads when they were on the little pole. This seemed to be quite a switch for Isaac and Bella, as Bella has trained Isaac to skip the word "blood" anytime he is reading a book out loud with-in ear shoot of her. She normally makes such a fuss over hearing brutal words like that in stories.

Once the fish were good and clean, the Springbrook employee kindly showed the kids the different parts of the fish while she did the gutting. She placed the fish heart on the counter above the sink and said "Here is the heart." At that point, Isaac started puffing his cheeks out, and making barfing faces. Then Bella said "Oh! It is my favorite color", and she got closer to have a better look.

The kids got a total of four fish, at a cost of only $4 each (as they were on the small side). I think that they were some of the best fish I ever tasted. I mean, it was not salmon, but for non-salmon fish, they were quite tasty, and could not have been fresher.

Brandon, the kids, and I had a couple of BBQ's that we attended for Father's day. Brandon and I had planed on taking Isaac and Bella to the mountains on Father's Day, but when that idea got rained out, I asked Brandon what he wanted to do as a plan B for his spacial day, he replied "Take a nap till Monday." If you are a parent of three kids, you understand how nice gifts like that are! And, yes, he did get a nap, though it was less than 24hours long (hey, maybe next year!).

Above is a picture of Abram will his new favorite person uncle Rhema. Abram recently had some Genetic Testing done. Since it is common for kids with West Syndrome to have other genetic defects, I thought it would be a good idea to have to test done, just in case there is anything else going on that I do not know about. The Geneticist said that there are a couple of things that she could test for that males with West Syndrome are known to have (sometimes), but visually Abram looks good, and it will be about 6 weeks before the lab results are back. I really do not expect the test to find anything unusual. I just thought it would be best to check anyway.

Above is a picture of Rhema and Kara, otherwise know as my summer angles. It has been really nice to have extra help around the house, in addition to the great company. Kara even *gasp* takes the kids out of the house for me once in a while so that I can clean it/get work done more easily.

It is my birthday this Friday! I think I have aged quite a bit over the past couple of years, as Abram so loved having mommy and baby slumber parties whenever he was on medication. Yet, I am so excited that Abram is still seizure free. I feel very blessed to have lived another year in this world with a wonderful family, a great support system of friends, and with my feet planted on the soil that my forefathers paid for with their blood so that I could live in Freedom.

I have been greatly troubled by the evil that it just around the globe in Iran. It gives me the same feeling that I had when I woke up on 9/11, just before I heard the news. To the people of Iran: I am morning for you, and I am praying for you. My heart burdened with your cries.

Lamb Henry

Henry Happenings

2009-06-19T02:52:00.000-07:00

Bella decided that she wanted to have a costume party for her birthday. She wanted to dress as a "Princess Fairy," and she said that those who attended could dress up how ever they wanted. That is a good thing, as I realize that her brothers are not as interested in princesses as she is.

She was a little worried that some of the little boys that were invited would not appreciate eating their cake on Princess Plates... so she had me make sure that there were non-princess plates available.
My kids seem to be unsure as to whether they should count themselves as another year older if their actual birth date has past when there has not yet been some great party to officiate the matter. Now that Bella had her party, she is officially 5 years old.
Bella's latest interest is catching butterflies. She had been talking about wanting to catch butterflies since the end of last summer, and now that the weather is sunny again, she has actually been able to find them. She received the above butterfly house as a birthday present, but it seems that the butterflies do not last very long once captured.
Other than the blowing out of the birthday candles, one of the most exciting moments of the party was when Bella released the 3 butterflies Isaac had helped her catch into the wilds of her room. She and her buddy had a great time catching and releasing the little yellow butterflies... and watching them fly around the room.
Isaac enjoyed the cake very much. Basically, I think Isaac will eat just about any kind of baked good that I make. He really likes frosting too. In fact, he will often ask me, "Are you going to put frosting on it?" when I have taken ANY kind of baked good out of the oven. When there are sweets around, Abram has to be watched very carefully or taken to his room to play. Isaac and Bella ask me every birthday when Abram will be able to eat birthday cake. I just tell them that he should be able to eat birthday cake for his 5th birthday. If Abram stays seizure free for just another 14 months now, he should be able to start weaning off the diet. I so look forward to that day!
As part of Bella's birthday present, I took her to a fancy tea at a Mansion in the area. Kara and Rhema arrived the day before the tea date, so Kara was able to go with Bella and me for a little afternoon girl time.
Isaac got to stay home with his dad and uncle Rhema, and they used the weekend afternoon to build a new version of the Lego Mindstrom (look at the post before this one). The new creation was a little robot dog. It looked really cool, but it did not stay together long enough for me to capture it with the camera.
The photo above is of Bella and me right before leaving for the mansion, and the one below is of Bella and her best buddy at the mansion, having tea in the fine bone china.
Below is a picture of Brandon with his dad. Mr. Henry (better known by the Henry kids as Grandpa) came to visit a couple of weeks ago, as he was here in the Seattle area for business.
Below Isaac and Bella told their grandpa about some of their butterfly adventures, and he had a few stories to tell them and other things to teach them. It had been a good year or more since they had seen their grandpa, but I think that they made up for lost time with extra play.

Abram loves to play outside, and with Seattle having been rain free now for 30 days, there have been plenty of wonderful summer days to enjoy. If you are reading this from Texas, you may want to stop here.... but the weather in this area stays in the 68-75 degrees much of the day.
It is so nice having Abram be seizure free and medication free! He has still been sleeping well through the night too. All of which has been REALLY nice.
I do not know if it is the fact that I have been getting more sleep lately or that I have not been working so much, but I have been more observant about how great Brandon is with the kids. I am constantly telling my dear little ones that I found them the best daddy in the whole world, but it has been really nice to be home more as I have been able to witness Brandon's great fathering in action.
I thought that it would be fun to get a photo of Brandon with his dad and the kids, but being that my little ones are such camera hams, had their little bellies full of German Chocolate cake, the "portraits" did not work out quite as nice as I had imagined. They had a great time with their grandpa though!

I hope that you all have someone special to thank this Father's Day weekend!

Lamb Henry

Let the Mischievousness Begin!

2009-04-28T09:57:00.000-07:00

I apologize for not posting in such a long time! Abram has been doing well, and has still been seizure free since the end of last Summer. Right now, his favorite food is hot dogs, which he eats almost everyday. Since he has been totally off his medication for a few months now, his pediatrician said that it is weaned out of his blood stream, and he should no longer have the suppressed immune system that he did when he was on it. Which is great! That is always nice to hear when there is a new coming epidemic like swine flu invading the U.S.

Abram has stepped up his mischievousness now that he is feeling his Wheaties... so, more to be thankful for! Though, to keep up with him, I did have to buy a steam cleaner and kiddie locks for the fridge/cabinets.

Bella turned 5 the end of last month. All three kids decided to get sick at around the time I had originally planed her Birthday Party (they are so good at sharing), but everyone has been good and healthy for about a week and a half now.

Everyday, I make a point of telling all 3 of my kids that I love them. I asked Bella a couple of days ago "Who does momma love?" She said in a rather disdainfully voice "Me." Then I replied "Your right! How did you know that?" She said "Mom, you tell me that everyday. You only have to tell me that one time and I will remember." I said "WHAT! I can only tell you that I love you one time? That is not enough..." Then my gracious Bella decided to negotiate with me a little bit, and said "Okay. How about only on holidays?" I said "Only on the HOLIDAYS?! What holidays... can we make today a holiday?" Bella "Hhhaaa... Like my birthday.. Don't you know what holidays are mom?" It was actually really cute.

Here is Bella's mini castle birthday cake. I plan to make her a big one this weekend at her party.

As some of you may already know, Isaac is really into planets. He found a recipe for "Cosmic Cookies", and he directed Bella and I as to how to make them. Once all the planets were created (it was similar to a peanut butter play dough recipe), the kids choose which color of sprinkles the planet would get. Then, I cut all the planets in half, and let Isaac direct me as to what order the planet went around the Sun, and they were set in the correct orbit.

Go here to find the recipe: http://www.amnh.org/ology/index.php?channel=astronomy

Isaac had been talking for months and months about creating a robot. So, Brandon helped him design the above Lego Mindstrom. It took them about 3 hours, and Brandon said that Isaac put it together by himself. It is called "a ball coaster" and the contraption moves both of the balls around and around... like a little roller coaster.

Above is Isaac admiring his handy work in his daddies home office.

For those of you that are Wall-E fans, you may be able to detect the portrait of Wall-E and Eve in the above photo. Brandon and I both enjoy being creative, and just art in general, so I am always get excited about my little ones doing artwork. It is amazing how fast the house gets messy when the kids decide to "do crafts", but I am pleased that they enjoy it.

For those of you with little ones, there is a great art computer program called "ItzaBitza." I noticed a big increase in the amount that my little ones wanted to draw after playing the computer program, as it encourages the whole "there is no wrong way to draw" concept.

In Abram's quest to be more mischievous, he has been wanting to climb EVERYTHING! I try to stand beside him when he is climbing up chairs, but I draw the line at his standing on the table.

In the photo above, he is trying to climb up the chair in front of the computer. He loves to hit on the computer keys, and play with the mouse. Actually, Abram is very interested in anything with buttons. His learning development is still very slow... but he is playing with toys on his own now, which is not something that he was doing a year ago, but nothing exceptional to report. I would really like to start him on some occupational therapy, and I hope to have a chance to pursue that this Summer.

Right now, I have been majorly decreasing the amount of Real Estate work I have been doing. I am looking to totally take a sabbatical from that soon, as I want to just go back to being a full time mom. Brandon's IT work has been going well, and due to that, I will now be able to quit working without giving up fun stuff like eating and paying the mortgage. I am really excited about that! My brother Rhema, and his wife Kara, are planing to stay with me over the Summer again. My brother is looking for a computer Internship in this area before he heads off to get his Masters degree in Computer Science, so if any of you have a hook up for that, please let me know!!

Lamb Henry

Abram did well on his EEG

2009-01-24T20:31:00.000-08:00

For Christmas, Brandon got Abram this little swing chair for his room. Like many children with special needs, Abram is very fond of swinging. In the Summer time, Abram is more than happy to spend the afternoon in and out of his swing outside. But, with the rainy season here, and the cold weather, swinging outdoors in not very fun.

Abram had his 24 hour EEG done on January 15th-16th. He did a pretty good job keeping his hands off of the leads on his head. It is always a challenge to keep a toddler in one room for a full day... but the Children's Hospital lent him some Winnie the Pooh videos, and that made things much easier on both Abram and I. Brandon likes to refer to Abrams favorite Winnie the Pooh video as "Baby Crack." Abram was very content to just sit and watch it for hours.

The EEG its self went well, also. Abram's Dr. said that the brain pattern of "hypsarrhythmia" which Abram had on his previous 4 EEG's was no longer present. This is excellent news! Hypsarrhythmia: is a very chaotic and disorganized brain wave behavior with no recognisable pattern. The reason West Syndrome is considered to be so dangerous is because the brain pattern hypsarrhythmia causes high amplitude waves.

These high voltage brain waves actually fry the brain, and cause permanent brain damage over time. In treating West Syndrome, sometimes the seizure will go away, but the hypsarrhythmia remains. Both need to be gone to prevent damage to the brain, and to give Abram a chance to catch up on his development.

The EEG show that Abram is still having abnormal brain waves. This is something his Dr. said can not be "fixed" unless he Abram was a candidate for surgery. His Dr. also said since Abram had a normal MRI, that he was not be a surgery candidate... and that no one should WANT to be a brain surgery candidate!

Neurological abnormality can in its self cause problems, his Dr. told me. Developmental delay is a common one, and there is no way to know what else could be effected by it. The abnormal EEG also puts Abram in the high risk category for having future seizures, but that is why he is still on the Ketogenic diet. The Dr. also said that it is possible that Abram will have more improvement in his EEG over time, especially if he remains seizure free.

Abram did not actually sleep through the night in the hospital. I let Brandon take over watching Abram once the time hit 12am, and Brandon took care of him until he left that morning to go get Isaac and Bella from their Aunts house (I LOVE being married!). I did let Abram take an extra nap the day of the EEG, which is something that I know makes it hard for him to sleep at night (he was rather worked up with so many nurses messing with him all day), so I am party to blame for his being up all night.

Abram finally went to sleep in the morning (Jan 16th) about 9:00am, which was 5 minutes before the nurse came in to take all of the EEG wires off of his head (he was asleep in the photo). The white squares you see on his head are all supper glued on, as not to let any of the leads come off. The white circle on the left side of the photo is the glue remover cream that the nurse used all over his head. Poor little dear, he woke up to a nasty smell of chemicals, as the glue remover was being rubbed all over his scalp.

Abram will be totally off of his test medication by the end of this month, have one more follow up visit for the study, and that will be the end of it. His Dr. said that the next step will be to have Abram remain seizure free for 2 full years, with out any lapse, then to see if he can wean off of the Ketogenic diet with out having seizures. Keeping Abram away from food that he can not have is not an easy job. I very much appreciate all of you for your support, and for keeping Abram in your prayers.

Lamb Henry

A White Christmas & Good Bye to Ganaxolone!

2009-01-16T21:01:00.000-08:00

The whole family at a Christmas party. I am sorry that it has been so long since my last blog update. Abram has remained seizure free since August, and moral at the Henry home has been much improved because of it.

Snow at the Henry home.

The diet seems to be working well, with the only complaint I made about it to Abram's dietitian at his last appointment is that Abram still seems really hungry. The dietitian said that I could start feeding Abram "Whenever he is hungry." She said this in September, and it has been much easier on Abram since then.

Abram eating his plate of snow!

The dietitian said that some kids naturally regulate there food intake to what they need, and she said that Abram seems to fit in that category, so she is going to let him eats when/as much as he wants to for the time being, put the ratio of fat to carbs and protein must remain the same (3/1).

Abram eating his plate of snow!

Of course, Abram still wants the food that is not on his magic diet. I have to be very vigilant to keep him out from eating any crumbs his siblings leave around, or from looking in the garbage for items that resemble food.

Isaac and Bella showing their edible creations!

Another blessing is that there was quite a bit of snow in this area over December, and snow is on the magic diet!! It was so nice to be able to give Abram snow as a treat, as it carb/calorie free, and he could eat his hearts content of it with out my ever having to put it on his gram scale to measure it.

Isaac, standing by his snow angel.

Actually, Isaac, Bella and Abram loved eating the snow. The kids and I put plates and bowls out to collect it when it was falling. When the snow was at its biggest height here, there were a good 6-8 inches on the ground, and when I presented Isaac and Bella a large butter tub size portion of snow to eat, they called it "A snow castle."

Isaac, making angels in the snow.

Here is WA, many of the areas were hit hard by snow and ice. Since the Henry home is in a Valley, the roads were pretty dry, but the kids and I did stay home most of the heavy snow time to avoid the craziness.

Bella

The week of Christmas, Abram's nurse that is responsible for handling the test study that Abram is in left a message to let me know that the test study on using Ganaxolone for West Syndrome was ending early, due to the early findings showing no major reduction in seizures. She said that Abram would be weaning off the test med by February, and that he would have the opportunity to have another 24 hour EEG preformed in January, if he is still seizure free. Brandon and I see this as really good news.

Abram

All along I thought that Abram's seizure free-ness was due to his diet alone, but now there is hard evidence that proves that very thing to be likely, and Abram will be able to continue by diet alone (zero meds!!). I am so happy!

Abram playing outside.

In addition to this, Brandon and I found out recently that Abram sleeps better when he does not take his night does of Ganaxolone (he is supposed to take it 3 time a day, with meals). As I have lamented on this blog before, Abram has not been sleeping through the night, and that has been going on for about a year now.

Bella making a "baby snowman."

In fact, most of this Summer he was up ALL night, the majority of the week, he would wake up around 11pm- and stay up until 8am, with zero sleep in between. Now that Abram is only taking his test med 2 times a day, he has been sleeping through the night the Majority of the time.

Isaac and Bella with the baby snowman.

The funny thing about this, is that the study found that the main side effect of the test med was SLEEPINESS! For those of you that are interested, since Ganaxolone was shown to not be very effective in children with West Syndrome, it will not be approved for them, though it looks like it will be approved for Adults, at some point.

The baby snowman.

The test mediation was found to be well tolerated, so that is also good news... since Abram has been on it for a year now, and there was not much data available when he started it. I am a little disappointed that it is not going to work for other kids, as the ACTH is the #1 thing used for West Syndrome right now, and it is the biggest reason that the death rate for the Syndrome.

Abram eating snow in the yard.

With better sleep, Abram has been in a better mood, and he more interested in doing learning games with me and his therapist. He has even been showing some signs of interest in potty training, which is HUGE.

Abram tasting more snow.

One day, he went potty on his potty chair 3 times. Most of the time now, he will just take his own diaper off if he is wet. This is the sort of thing that kids normally do around 18 months, and is a great signal. Since Abram is still not very verbal, this can create a bit of a challenge in the potty training area. I am not sure what my expectations should be in potty training him, and for those in the medical field that I have talked to, have said that there is nothing wrote for kids that with development delay should follow. It is very individual, and intuition is the gage.

Isaac and Bella on the door step.

With extra sleep, I have had more energy to do fun things with Isaac and Bella. The did help me bake some Christmas goodies, and I have been making them baked goods for breakfast more often. Though they like to be picky eaters (thank goodness Abram is the one on the Keto Diet), they will eat almost anything that I bake. It is not really the sort of thing I want to do on a hour of sleep, but they do appreciate it.

Isaac throwing a snowball at Bella.

The snow stayed through Christmas. As far as I can remember, it was my first White Christmas. I look forward to telling stories to my kids about it as the get older. I hope that Abram will be able to understand when I tell him about his seizure free White Christmas.

Lamb Henry

Abram Has A Cold

2008-09-19T02:11:00.000-07:00

I can hear my dad now "What do you mean, "has?" Don't confess it, you know that." Well, Abram is in the process of fighting off a cold right now. He had an appointment scheduled this week with his neurologist, and dietitian, but those have are going to be rescheduled for when he is feeling good and healthy again.

It is nothing bad. Just a touch of fever, runny nose, and a small cough (I say small because he is only coughing several times a day). Isaac has/is fighting off the same thing, but it seems to affect Isaac's day less than it does Abram's.

Since Abram is not feeling himself, he is not interested in eating his normal Ketogenic food. His little nose is stuffed up, and when I offer him heavy whipping cream to drink, he is NOT interested. If my other kids are sick, I give them peanut butter toast, or saltine crackers. Abram can have neither... and is supposed to stick to his Keto diet.

Thankfully, Abram's dietitian gave me a couple of special recipes for him today. One is a 'Jello Fluff' meal, which consist of sugar free jello, cream cheese, and heavy whipping cream. Abram really liked it, and he seemed to perk up after eating it today. It looked so good, I had to promise Isaac and Bella that I would make some for them to eat as well.

Abram still has not had any more seizures. I think it has been a month or so since I have seen one now. Brandon always seems to be so much happier when Abram is seizure free. Of course, Abram is happier, too. That is what I think Brandon appreciates the most, a happy kiddo.

At some point, I am going have to post some video footage of Abram laughing. It is really cute.

Lamb Henry

More of the same...

2008-09-01T08:19:00.000-07:00

Abram is still not sleeping well at night. This past week, I think there was only one day that he slept through. Most of the time, he goes to bed around 8pm, sleeps until 10-11pm, then stays awake until 5am or more. When awake, Abram will make a bunch of racket while playing, or will fuss/cry.

Diet
Abram's favorite Keotogenic meal is the one he has that includes sausage. With the resent seizure come back, I have stopped giving Abram sausage all together to see if that would make a difference (as I had commonly given him the sausage meal twice a day). The past week, I have not noticed any seizures, but I am still holding my breath.

Rhema and Kara
It was so nice having my brother and sister in law living with me over the Summer. Abram had such a good time playing with his aunt and uncle, as did Isaac and Bella. They are thinking about coming back for another internship next Summer, as well. The Summer went by so quickly with them here, and the fact that they are gone is still setting in.

Isaac and Bella
The Fall is here, and time for lots of field trips and some school. It is going to be nice having the kids do school at home again this year. In addition to the things I do at home, I had wanted to put Isaac in a homeschool co-op this year, but after further thought, I have decided to wait until things are more stable with Abram.

Abram
Abram's 0-3 therapist has been working with him on improving his eye contact, and I have already seen some improvement. Abram also started going to speech and development therapy this last month. He has only had 2 sessions so far, both of which he slept through. Yet, he is going to be doing that therapy once a week, and the therapist said that she will just take advantage of Abram's good days, when he comes to her well rested.

Thank you all for your support! It has been a very busy month.

Lamb Henry

Things Abram Has Learned Recently

2008-07-28T23:34:00.000-07:00

One thing that Abram has learned to do in the past month or so is how to climb up into the papasan chair in his room. This photo of him was taken after he had been playing in his room, and decided to climb up into this chair for a little nap. Abram has also leaned how to climb out of his portable crib, and has opened the room to his door a couple of times. These are all things that he was not done before, and though small steps, do show some kind of development progress. He even went pee pee in the potty for the first time recently. Kids with special needs do not typically have an easy time potty training, so this event gave me hope that it will be possible to potty train Abram one day.
I have not seen any more seizures since the breakthrough ones I wrote about before. Abram has a Dr. appointment with his neurologist this week, and I am looking forward to hearing what the Dr. has to say about Abram's recent seizures.
After seeing a sewing machine on my kitchen table, the therapist that has been working with Abram once a week recommending I make him a special quilt with lots of different textures on it. My sewing machine ended up breaking before I had a chance to finish the quilt, so after renting a working sewing machine, I made Abram the above texture quilt. The cover is a weird mix of all sorts of different fabrics: soft, rough, fury, bumpy, plastic, pollster, etc, all covered in a fleece back. It is supposed to help Abram with sensory input issues, and Abram seems to really like it. I cuddle him with the fleece side of it at his bed time, and I rub his hands (and sometimes the bottoms of his feet) over the different textures.

I think that Abram looks especially sweet when sleeping.

Lamb Henry

Breakthrough Seizures

2008-07-24T22:22:00.000-07:00

Hello! Thank you all so much for your continued thoughts and prayers. Abram has spent most of the Summer staying awake at night, and then trying to nap during the day. After trying everything I could think out, I talked to his Dr. about it who recommended his taking Melatonin. It seems to have finally kicked in, and the past few weeks Abram has slept more night than not.

Other than that, Abram's Dr has added more vitamins to the daily regimen to compensate for the Ketogenic diet being low in many vitamins and minerals. The diet has still been going fairly well, but Abram has had some seizures recently for the first time in a couple of months.

The Breakthrough Seizures
Brandon saw Abram have 2 seizures last Saturday, which was the first time any have been witnessed in the past 3 months. Today, Abram had 6 seizures. I saw him have one in the morning, and Brandon, saw Abram have some after that. Nothing big has really changed in Abram's routine. Abram did have his daily calorie intake go up at his Dr. appointment a month ago, but it was only an increase of 25 calories, and he has not wanted to eat his snacks very often since the increase. The one thing that can trigger breakthrough seizures is sickness. Abram has had a runny nose for the past few days, and this morning (about an hour before I saw the seizure) I saw that it was running green.

I have more photos that I would like to post, but the computer that had all of the photo files on it recently went to computer heaven, and I have to wait for my computer whiz husband to place them on the current family computer.

Isaac
As many of you know, Isaac is an avid reader. He recently got his very own library card, and he has since been placing holds on-line all by himself, then picking them off of the library shelf. I would have let him have his own library card before now, but I told him he had to be able to write his name by himself (in addition to being able to read) before getting his own card. He has quickly become a good self learner at the age of 5, with a current interest in creating his own comics. He has even been bragging to his aunt Kara, that he is going to sell his comics on EBay. Ahhh... the industrial spirit is still alive!

Bella
My sweet little Bella has recently been telling me how to mother properly. Yes, when I was giving her a bath yesterday she gave me a little list of things that SHE was going to do when she was a mommy: #1 Never make her kid take a bath
#2 Let her kid eat any time her kid wants to
#3 Let her kid have lots of stuff
#4 Let her kid do whatever the kid wants to do
She tried very hard to persuade me that following the above list would make her "the very best mommy."

Abram
Other than seizure control, the current goal is to get Abram to connect more. He does not engage in eye contact as often as he should. With eye contact being one of the things needed to be in place for speech, it is something that his therapist wants to encourage more of.

Me
I have really enjoyed having my brother and sister in-law here for the Summer. Kara has been really helpful around the house, and has been an awesome playmate for the kids. I have also found that many of the things that I need to get done are not transferable . Kara is constantly asking what else she could do to help me, but most of what I need done is paper work, and phone calls, both of which I need to deal with personally. I still plan to go away for a weekend with my husband while they are in town, but Brandon wants to wait and see how Abram is going to do (now that he has had some seizures) before deciding when to do that.

Lamb Henry

The Magical High Fat Diet!

2008-05-15T17:27:00.000-07:00

Hello! Thank you all so much for your support and prayers. It has now been over 4 weeks since I have last seen Abram have a seizure, and it is very encouraging. He has been doing well on his magical high fat Ketogenic diet. He had an appointment with his neurologist last week, and his Dr. was very pleased with Abram's progress as well. Abram has gained weight over the last month, and the past four weeks has been the longest he has gone with out being sick since December (when he started his medication). Other than the magic diet that Abram is on, I have been getting the kids out of the house more now that the rainy season is about over. I took these pictures while on a field trip to the North West Trek. The kids had a good time checking out the NW animals, and playing at the children's research center.Abram took his afternoon nap while laying on my lap during the tram ride. To keep Abram from getting sick even though he has a weak immune system, the kids and I have been using lots of hand sanitizer when away from home, and have stopped going to gatherings with lots of people. I have really missed going to church as usual, but with Abram having had the flu 2 times in one season, Brandon and I are trying to stay on the safe side for a while. I have been taken on a lighter load at work lately to focus more on Abram, but I still have 3 homes that are pending sales right now. It is nice to see the housing market picking up, and if Abram continues to do well, I plan to work at a more full time pace over the Summer.
My brother Rhema, and his wife Kara, are planing to stay with Brandon and I over the Summer. Rhema is the computer genius of the family, and he plans to work as an intern for a computer company while here. The hope is that he and Kara will like Seattle well enough to move up here when they both graduate from College next year. Brandon's work has been going well. Brandon has also been less stressed now that Abram is doing better. I come home one night recently to sound of laughter coming from upstairs. When I investigated, Abram has playing with Brandon, and was all smiles and giggles. Brandon said, for the first time since Abram was diagnosed, that he can handle Abram's having West Syndrome now that Abram is happy.

There have been some improvements in Abrams learning development, too. Nothing unbelievable, but there is progress. Abram is more responsive, listens better, is talking more often. He is also laughing at things that he thinks are funny more often. Now when he watches a video with his siblings, he laughs at the funny parts.
Abram's therapy worker requested that I start doing constructive play with Abram for at lease 10 minutes a day. Abram does not seem to like it at this point. My other kids would think it was great to have mommy to play with them... but Abram starts to whine when I bring out the learning toys. Abram will smile when he puts the shape block into the shape shorter all by himself, he just likes to complain along the way.
Abram is a sweet little guy, and having such remarkable seizure improvement is very encouraging. Thanks again all for your support, and understanding!

Lamb Henry

More illness, less seizures...

2008-04-19T20:16:00.000-07:00

Due to Abram getting the flu again, I have been unable to post for a while. Bella turned 4 years old at the end of last month, and had a princess party that she and Isaac agreed was "better than Christmas." Since Abram can not have cake, I made sure that the party took place during his nap time. Below, Bella is preforming her happy dance in her new princess dress at her birthday party.

Above, Bella is blowing out her 4 birthday candles. Below, she is sharing her castle cake with her little buddies that were encouraged to dress up for the party. I am still working with Bella to respond with the number 4, when asked how old she is. Right now, when someone ask Bella how old she is, she responds by saying "I don't know numbers."
Abram had a check up appointment at Children's shortly after Bella's party. Abram's neurologist and dietitian were pleased with how well Abram has done on the diet. Abram had lost a little bit of weight, but nothing that they were concerned about. The sad thing is that Abram got sick the day after the appointment. It started with a nose run, and progressed into a full on flu that lasted about 2 weeks. Since the test medication that Abram is on is a steroid, it is easier for Abram to get sick, and with a compromised immune system, he gets sick worse than a typical kid would.
Above, Isaac is dressed as a prince for Bella's party. Below, Bella is with her best friend who even stayed the night after the party, so Bella got to have her very first sleep over! The girls had lots of fun playing dress up.
Below, Bella is hugging on to the best daddy, and husband, the world has ever known. With all of the stuff that has gone on with Abram, I am so glad that I married someone that I actually really like. It sure makes things easier! Brandon was not very happy about Abram getting sick... again. As Abram has been sick half the time since he started the test medication in December. After talking to the dietitian at length, she recommended making some changes to help with germs in the house. From what she said, with a special needs kid, it is often necessary to bleach and sanitise the bathroom and food areas of the home on a daily basis. In addition to that, she recommended a supplement for Abram to take. Plus washing the toys, and tooth brushes, on a weekly basis. Also, I bought everyone in the family their own tooth paste (not to share), and stopped letting the kids share drinks, per her recommendation.

As any mom of 3 young kids knows, trying to do all of these things is quite an undertaking. I talked to my boss at the start of the month as Abram was getting sick, and had him lighten my work load a little bit while I catch my breath. Brandon recently got moved from "part time" to "full time" at work, with an improved salary. This was a great blessing! He is now making enough that all the bills can be paid with his salary alone. Of course, if the car broke down, or the kids grew and needed clothes, or any expense out of the ordinary... that would have to come from another source. Brandon and I were very happy about it though. The best news of the year is that Brandon and I have not seen Abram have a seizure in over a week now. This is the first time in a year that Abram has gone this long with out Brandon or I seeing one, and it is very encouraging!!!

Brandon and I are aware that Abram will have to beat the odds to even make it to age 25. But, at the moment, things are looking brighter. I have not seen any seizures for over a week, and Abram has been talking more the past few days. I heard him say "momma" three times in a row recently, and he has said "Bye, bye, dada" a couple times the past few days as well. I would like to say a big thank you to Lake Tapps Christian Church. One of the community groups there have watched the kids a few times now so that Brandon and I could go out on a date. With all the craziness, it has been really nice to have some time to just enjoy my favorite person with out interruption. Brandon and I were even able to try out a fun Indian Food place in Kent called "Punjab Sweets" http://www.punjabsweetsonline.com/ . They have amazing petifores, and their Chai was the best I had since my Chai parties days in College. Brandon and I love spicy food, and it is so rare that he and I get to sit down and enjoy some with out having to rush. Thank you so much!

Lamb Henry

More improvement

2008-03-19T21:36:00.000-07:00

Well, Abram and I both ended up getting the flu. After a couple of weeks, I am finally starting to feel like myself again. My voice sounded so bad one weekend that one of my Real Estate clients told me that I needed to go to bed! Now everyone in the Henry home is back to being pretty healthy. I realised that it has been about a year now since Abram had his first seizure. The picture below is of Abram when he was about a year old, and he is doing one of his little baby tricks.

Lately, I have seen a reduction in his seizures. In the past week and a half, I have seen 3 seizure free days, 4 days where he had 1 seizure, and 2 days where he had 2 seizures. Of course, when I was seeing 10 seizures a day, he was actually having 100 a day. So, if I see one seizure, I would assume he is having at least 10 a day. Yet, that would still be a big improvement.

Abram likes to chew on things a lot. This past weekend he destroyed one of the selves on his pajamas (which he had never done before), and I looked in his mouth and realised that his 2 year molars are coming in. Brandon was actually glad to hear that there was a reason for Abram's volume of fussiness. Yes, even with everything Abram has gone through, he is still a little two year old, and he is growing his big boy teeth.

On Sunday, Brandon played the ukulele for Abram. It was so cute! Abram laughed up a storm the whole time.

Lamb Henry

I am glad to see another month!

2008-03-03T18:18:00.001-08:00

Well, Abram is still doing pretty well on his diet. It seems that his seizures have reduced a little bit since starting it. Only time will tell as to how successful it will be, but things look good so far.
Above you can see Abram stopping around the yard. Once in a while, someone will ask me if Abram can walk (as some kids with West Syndrome do not), so yes... he can walk, stomp, run, and get into mischief.
Some days Abram acts like he is hungry, and Brandon has had a hard time not being able to give him anything to eat when Abram has already had his food quota for the day. Hey, even the Bible talks about fathers giving their children food when they ask for it! So, it can it hard for Brandon to say "No! Bread is not on your magic diet."
Here are some pictures of my other two silly little ones. They have taken turns having the flu over the past couple of weeks, and though they still have colds, they seem to be slowly recovering. Abram has not caught it yet, so Brandon and I pray that this nasty flu plague will finally pass over the Henry home.
Below, my girlie Bella is sporting some lip gloss that she received for Christmas. She thought that she looked beautiful with it on (she always looks beautiful) and asked her daddy to take this portrait.Before getting the flu, Bella went for a dental checkup. Though she is cavity free, Bella has enjoyed playing with the Monster Teeth prize she received as a prize from the dental office.

Below, Isaac and his ferocious dog are playing with the monster teeth. I love having kids! I never know what they will think up to keep themselves entertained.Here Abram has the whipping cream that is the main part of his diet on his face. I would say 90% of the meals Abram eats contain heavy whipping cream. Sometimes he drinks it, and sometimes I whip it and he eats it.One new thing that has happened recently it that Abram has been feeding himself with a spoon! I know that lots of other toddlers can do this, but since Abram is behind in his learning development due to seizures and medication, every new ability is celebrated!! I captured these images after Abram had feed himself a little cup of whipped cream.Thank you all for your wonderful support! Last month was a crazy one with the start of the Keto diet and all of the kids taking turns being sick. I hope to have well little ones this month.

Lamb Henry

Fun at Wilcox Farm

2008-02-19T23:22:00.000-08:00

I took the kids to a field trip to Wilcox Farm today. For those not in WA, Wilcox is one of the small family farms around here that produce local eggs and milk products. One of the moms in the Homeschool group that I am a part of organized the tour, and my little ones had a really good time!
Below is my little boy blue! He is so cute yawning in the hay. I am still trying to get his sleep schedule back to normal since it was rearranged during his stay at Children's last week. His Dietitian said that there will be some adjusting time for the diet for the next week or two that may make him sleepy, also.Below, Isaac is looking at the Chickens that have been producing the very eggs in the Henry fridge right now!
Below, Bella is feeding the pigs. She really wanted to wear a dress to the Farm, so I convinced her to put on her warmest one.

Below, Bella and Isaac are pumping for water the way they did in the old days.

Today was the first time I have taken Abram out of the house for an extended time since he started his Keto diet. I think he has done a good job eating his meals so far. He seems to prefer to drink water rather than Heavy Whipping Cream, so I have been feeding him Whipped Cream instead. Since starting the diet, I have noticed one seizure free day. The rest I have seen about the same number as is common for him. It will most likely be 3 months before there will be major progress seen in Abram's seizure number, but I hopeful everyday!

If anyone sees an angel anytime soon, please tell him that Brandon would like to be paid a visit. I am not sure what angel is was that Jacob wrestled to get his blessing, but Brandon said that he is willing to wrestle the feistiest angel that Heaven has if it means that Abram will get better.

Lamb Henry

Abram is Home!

2008-02-16T00:29:00.000-08:00

Abram did so well on his new diet at the Hospital, that they let his out a day early. The Ketogenic Dietitian at Children's said that Abram did "stellar." And she attributed his success to the fact that Brandon and I had put Abram on the modified Atkins diet. It is actually very common for kids to get sick and have to be given liquids by IV while started the diet. Abram stayed hydrated, and did pretty well eating the food. I never thought I would be so pound to see one of my little darlings eating plan butter, but Abram has been eating it like a little champ!
Above is one of the meals Abram had at Children's. It was one of the first meals I measured out, on Abram's second day there. The way that is worked is that they let Abram drink as much meal replacement drink as he wanted, but limited his solid food the first 3 days on the Ketogenic diet. They gave Abram 1/3 calories in solid food the first day, 2/3 in solid food the second day, and Full (1/1) of calories in solid food the third day.
Above, my sweet Abram is eating his first Ketogenic meal he had while home. Other than the cream that he drank, you are looking at the amount of food he was actually portioned.
I am tried after spending the past 3 days in the hospital, but it was nice to spend Valentines Day at home with my kids and sweetheart.

Lamb Henry

Much Worse Than Expected So Far

2008-02-13T03:58:00.001-08:00

Well, the past day, and the ones after that, look to include torture that was not expected. Abram had to wait longer than anticipated to be admitted today, so the 12 hour fast was extended a little bit. He had not been allowed to eat past 10pm on Monday, and his first meal arrived around 2:30pm today (Tuesday). The nurse put up quite a stink when dietitian and I insisted Abram eat lunch before having his first vitals done. His first meal was only about 3 bites of food!! I am glad that the dietitian backed me up on that, as Abram perked up a bit after having a little to eat. He also got to drink some Ketogenic eggnog, which he seems to like.

During the admitting process, the nurses asked me if Abram had been sick in the past few days, etc. I told them that his nose was a little congested on Sunday, and that I had heard him cough a few times, and that I thought he had a little cold. They said that he had to switch rooms, and that there was another little girl with a cold that he would share a room with. Well, she does have RSV (which is more dangerous). Given that they said they would have to put Abram on "respiratory watch" Abram is quarantined and is not allowed to leave his room.

The nurse that checked him out earlier said that he looked and sounded fine. But, now I am stuck in the hospital with an active 2 year old that has been quarantined due to a little cold. He can not leave his room, and he is sharing his room with a kid that has RSV. This is not the stay here that Brandon and I were expecting! After being woke up at 2:30 am to have Abram's glucose level/blood taken Brandon said "I thought that the stay here this time would involve less torture." I can't even let Abram walk around his room as RSV is highly contagious, and the sweet little darling carrying it is just a couple steps away from his bed.

Brandon said that he never would have agreed to start the diet if he know Abram would have to be quarantined for 4 days to do it. Tomorrow I am planing to see if I can take Abram out of the hospital for part of the day so he could at least walk around. They would let me take him out of his room if he wore a mask the whole time. But as with many kids with neurological issues, Abram does not like anything on his head.

I believe in the diet, and I think that it is the right choice. It just looks like the start of it is going to be rougher than expected. I hate to go into more detail as it is not very pleasant. Please pray that Abram does not get even sicker, increasing the stay here at Children's for illness instead of a mere diet change.

Lamb Henry

Gearing up for the New Diet

2008-01-31T20:55:00.000-08:00

Brandon and I met with the two Ketogenic Dietitian's at Children's today. They went over some of the basics of the diet with Brandon and I, as well as anther family that will have their little one admitted for the diet at the same time as Abram. It was nice to meet anther family going through the same thing, and I had even spoke to the mother before on the phone as she had been kind enough to talk to me about her experience with Ganoloxone.

At the end of the meeting, Brand0n and I got to measure out an example Ketogenic meal by gram. Brandon start laughing at as he to cut some of the hot dog to measure the exact amount required. It was less than a bite! Maybe as little as 1/4 of one bite that is required.
Bring on the Bacon!
Abram will be back at Children's to start the diet. He will have to go through a 12 hour fast, and then have lab work done, and then his first Ketogenice Meal! The meals will be a 3:1 ratio, meaning for every 3 grams of fat, he will have 1 gram of carb/protein. The protein amount that he needs for his age and weight will be calculated, and the rest of the gram he needs for a perfect 3:1 balance will be carbs. I hope all that makes sense! Mainly it is a high fat diet, and low of carbs.

Abram will be at Children's

February 12-15

He will be given Ketogenic meals, and I will be trained on how to give and administer them. Some of the training will have to be done with out Abram present as it is intense. The Dietitian said that it would only be for about 2 hours of each day there. The main thing Brandon and I are going to need is someone to watch Isaac and Bella of these days.

Brandon's New Job
Brandon will start his new job on February 4th. The employer that he will be working for made a special exception for him, and is going to provide health care benefits for the whole family (including Abram) after 90 days. The work will be a commute, but the agreement is that Brandon will only have to work 20 hours a week, yet receive about the same pay as he did at his old job. Starting out though, Brandon is going to be working longer hours to take stock of the all computer equipment. It seems to good to be true!

Thank you for your support!

Lamb Henry

Abram's Sweet Face

2008-01-27T13:28:00.000-08:00

Less Med, more Abram
Since Abram has been on a lower dose of Zonigran, he has been more himself. He has been giving more eye contact, smiling more, sleeping a little bit better, and has been getting hurt less. On the full dose of Zonigran, Abram's sense of balance was so compromised that he could not play by himself with out getting hurt every five minutes. Now, I can let him play with toys in the play room, and the only thing I am really worried about is his trying to climb on the toy box and jump off! I took all of these pictures of him in the tub this weekend, and I am sure that you can see how much more alert he looks.
The New Diet is Working
I met with the Dietitian at Children's last week, and she said that Abram will be able to start the Ketogenic diet next month. She said that it would either be the first week of February or the third week of February. That is sooner that the Dr. had thought, which is great! After looking at Abram's lab work, the Dietitian also said that the diet Abram has been on since the end of December is working. He had low blood sugar (which is desirable for the Ketogenic diet), and he had 3 ketones. After hearing everything that Abram was currently doing diet wise, she said that it all sounded good, and that she did not have any changes to recommend for the modified Atkins diet.

From Milk to Cream

I have been working on weaning Abram the past few weeks, and in place of momma milk he is drinking Heavy Whipping Cream. Heavy Cream is the main staple of the Ketogenic diet, and I am working on finding a place that sells it in bulk. I had not planed on weaning Abram quite yet, and he has not been trilled by the idea! But, Brandon and I knew it would be best to wean him now, instead of waiting until the Ketogenic diet started. The Dietitian also agreed that this was a great step to have taken in preparation of the Keto diet.
Growing Tall

The Dietitian said that even though Abram has gown in the past month, he has not gained weight. She said that it is common to see kids with neurological issues that are underweight, and the medication he has been on is known to decrease appetite. Besides all that, he had a cold for a couple of weeks in January, and he did not like the hospital food while he was at Children's in December, plus he has just been weaned. Lots of factors, but it is still hard to hear... I mean, I spend hours in the kitchen everyday! Cooking meals, cleaning up after kids, and just the food I sweep up under Abram's high chair should be enough to sustain anther person! She did say that kids that are underweight do tend to gain weight on the Ketogenic diet.

What Abram's Keto Meals Will Look Like

The Dietitian said that at best, the meals that Abram has been eating have been a fat to carb diet of 1:1. Once he starts the Ketogenic diet, he will be on a ratio of 3:1. For a typical meal, that will be 24 grams of Fat, 4 grams of Carbs, 4 grams of Protein. It is going to be quite an undertaking. Other than plan water, everything that Abram puts in his mouth will have to be measured to the milliliter!

Brandon's New Job

When Abram starts the Ketogenic diet, he will have to be in the hospital for a week, and I am going to need some help with child care for Bella and Isaac. Brandon is going to be starting a new job around that time (if Abram starts the first week of February, it will fall on Brandon's first week of work!). In the past week, Brandon has not been given any IT calls for his current job, and since he is considered a contract worker-that means no income. The good news is that he has been offered another job that pays about the same as the one he was doing before, except it would be fewer hours. His new boss even said that he would provide health benefits for the whole family (including Abram), so it seems too good to be true!

I still feel a bit overwhelmed. I seem to have pulled a muscle in my neck yesterday, as if I do not have enough to deal with. But it has been really nice to have Abram's sweet self coming back. I hope to see good results with the new diet. The Dietitian said that the small improvement seen in Abram recently could be due to the his change in diet already.

Lamb Henry

View from the Seattle Space Needle

2008-01-20T21:58:00.000-08:00

One of the Builder's in the area puts on an annual dinner at the Seattle Space Needle for Real Estate agents that have sold one of their homes in the past year. One of my pending home sales was with this builder, and Brandon and I were treated to a night out with a bunch of other Realtors. It was really fun! Brandon and I got to eat adult food while enjoying the lovely view of the city. Though I had been up in the Space Needle before, it was Brandon's first time, and I could not have been happier to have been the cause of the free event. With all the work that goes into working from home, it was nice to partake of a little perk.

One Step Forward, Two Steps Back
I have another home sale that is due to close this week, which is nice. Since the holidays have ended, Brandon's work has been very slow. He finally had to tell his boss that if he does not get more calls soon, he is going to have to work elsewhere. Brandon's IT job has been nice in that they have be pretty flexible with his schedule which has been great with all of Abram's Dr. appointments, and my work schedule. Please pray that he will either have work pick up, or have another opportunity open up. I love having such a hot husband hanging around the house whenever possible, but our electric bill was $400 last month, and the city still gives bills to its aestheticly pleasing citizens (unfortunately).

Abram's Last Dr. Appointment
Abram had a Dr. appointment on Friday, and his Dr. gave him the okay to lower the dose of Zonigran that he is on. Abram has been much happy since he has been taking less of it. In fact, even Isaac has noticed all the laughing that Abram has been doing since he has been on a lower dose. With Abram's cold, I could not get him to take much of his Zonigran a couple of times, both of these times he slept through the night great! So, for the most part, he seems like his old happy self since coming off that med a little bit. He has also become more mischievous since he has been less drudged up. Yesterday, he was all giggles as he repeatedly took the padding off of the grocery cart while I was shopping with him. He would gab it, take it off, then smile and giggle until I put it back again. He was laughing and rolling his little head around like he was the funniest baby comedian in the whole world.

The Current Seizures

Right now, Brandon and I are seeing about 4-10 seizures a day. Before starting the test med, I had been seeing Abram have 10-15 seizures a day. Abram is still waking up a lot at night, so I do not know if he his seizures have really improved since the test drug, or if he has just started having the majority of his seizures at night (which was the case in his last 24 hour EEG). The Dr. said that there would be no way of knowing with out doing another EEG. For right now, it appears that Abram has had a sight improvement.

Baby On A Diet
Abram has been on his new diet unofficially for a few weeks now. The Dr. has approved Abram for the Modified Atkins diet, and the Ketogenic Diet, but I have not heard back from the Dietitian as to when Abram can be schedule for an appointment yet. The Dr. seemed to think that the Ketogenic diet will not start up again until March at the earliest, but that is all I know for now.

Thanks so much for all of your support!

Lamb Henry

Another year!

2008-01-06T14:12:00.000-08:00

Abram turned 2 years old on December 27th. Since Abram is going to start the Ketogenic diet soon, Brandon and I started him on a modified Atkins diet for the mean time. The modified Atkins diet is similar to the Keto, but is less restrictive, and does not require a hospital stay to start it. The dietitian at Children's said that kids with West Syndrome do best on a high fat ratio of the Keto diet, and so she said that she does not know how effective the Atkins diet will be for Abram. It could still be a couple of months before Children's can get Abram in to start the Keto diet though, so Brandon and I felt it was best to start something up right now.

To stay low carb, I made Abram jello with whipping cream in place of a regular birthday cake. Well, I actually made a regular birthday cake too, but Abram did not get to eat it. I think a few of the adults at the party may have been disappointed when they learned that all the Dixie cups of jello only had jello in them. Abram got a playdoh set for his birthday, and Brandon sat down with the kids and played playdoh with them. Below Isaac is showing me that he make Earth. He also make a moon with the sparkled playdoh, and well and he and his sister making a big huge playdoh mess.
Abram had been really fussy since the weekend he came home from Children's. His neurologist recommended that I go ahead and take Abram to is regular Dr. to rule out Abram having an ear infection, or some other sickness. I took Abram in on Monday, and the Dr. said that Abram had a cold. All it seems to be is a little stuffy nose, but running a humidifier for the past week has helped Abram sleep through the night a few times since.
I have not seen a real progression of Abram's learning in the last year. Although he has acquired a few new skills, he still seems more baby than toddler. I am concerned that he may never be cognitively normal, but there is no way of knowing for sure until his seizures stop, and he has had some time to learn without all the high brain waves.
I am glad that it is a New Year. I feel like it is another fresh start. Brandon and I hope to be able to celebrate Abram's next birthday with his being seizure free. Brandon describes the past year as the hardest one he has ever been though. December especially was a hard one on me, so I am very thankful that January is here now. I am just glad I made it through last month with out having to be admitted to the hospital myself!
With all that has gone on this past year, it just makes me appreciate my husband more. I feel like there are so many things that I am required to do everyday with homeschooling, working, attempting to keep the house running, Dr appointment, and all that goes into being a stay at home mom. At the end of the day, I lay my head on my dear husbands shoulder, and I feel like everything is going to be alright. He makes me feel like trying harder to make the best of things. Being loved through hardship is one of the greatest treasures of being married to the right person. Brandon and I really appreciate all of your support. It has been wonderful. I pray that you all have a very blessed Year ahead of you.

Lamb Henry

There has been no improvment so far

2007-12-24T11:01:00.000-08:00

I just got off the phone with Abram's Dr. that is in charge of the Test Drug study, and it looks like there was no difference the 3rd EEG Abram had after being on the new med for 1 week. Apparently, Abram had the majority of his seizures when he woke up at 3 am that morning. Since Abram had been spiting some of his medication out, the hope is that if he is better at taking it, there might be some difference in his seizures.

Brandon Taking Care Of Abram
The last Thursday, Brandon was the one that actually took Abram in the get hooked up for his EEG, and Brandon continued to stay with him from 8am-5pm. I had been the one to do this the past 2 EEG's, but I had some work stuff that I really had to tend to this last week. I had some friends watching Isaac and Bella for a few hours to coordinate all of this, and then when I was done with work I brought Isaac and Bella to the hospital and swapped kids with Brandon. On the way over the Hospital with the kids, I was on the new David Boze Radio show, and that was the highlight my rough day. For those of you that have not yet heard this new local show, it is a fun one. When I got to the hospital Brandon described his day as "Pretty much the worst day of my life." I guess there had been some difficultly with Abram's blood draw, which was hard on daddy. Abram had napped most of the afternoon, and he was awake most of the night (which is the time that he had the majority of his seizures.)

How To Be Okay With A Sick Kid
Brandon and I were talking last night, and his thing is that he does not know how to "be okay" about everything that is happening to Abram. The main thing Brandon would like is for Abram to have a normal life. Until the seizures stop, there is no way of knowing if that is even going to be possible. As for me, I mainly feel tired. Abram has been up crying the past few nights, and I can not figure out what is wrong with him. I wanted to take him to the Dr. today, but the clinic in going to be closed the next 2 days due to Christmas. So, I hope he is able to actually stay asleep tonight.

Keto Time
It looks like the Ketogenic Diet is next on the try list. I do not know how long it will take to get started on it, but I image that it will be sometime next month. Since things do not look very promising with the drug Abram is on right now, Brandon and I will have a few weeks to rest up and then gear up for the Ketogenic Diet. The diet is extremely strict. If Abram swallows his toothpaste it would mess up his diet, and if he eats a cracker off the floor it would mess up his diet, etc. The general plan with the Keto Diet is that Abram would only have to be on it for 2 years, and then he would wean off. All of this is providing that the diet actually stops the seizures. Unlike a regular diet, if Abram cheats he will not gain weight---he will have seizures. It will take quite a commitment. When I talked to the lady in charge of the Ketogentic program at Children's, she said that the kids that have the most success are the ones who's mother's normally cook for them anyway, and then adapt their ordinary recipes for Keto ones. That is good, as Abram is normally a really good eater, and likes almost everything I cook for him.

Thank You So Much!
A big thank you to all of you. Brandon and I really appreciate your support. With all the work Brandon has had to take off of work, your finical contributions have been much appreciated. I closed me first home sale this month, which is great! Since I am just starting out, my take home pay is pretty minimal right now. It has been really nice to be home with Abram so much with all of this going on. I am really thankful for that.

Merry Christmas!
With 3 crazy weeks in the hospital, Brandon and I are looking forward to a taking a little brake for Christmas. The kids and I are going to be doing some Holiday baking today, and Isaac and Bella are chopping at the bit to open the gifts under the tree. A couple of days ago, I took Abram out of the tub after a bath, and he did a quick naked run out the bathroom door. I heard a strange crinkle sound, and as I walked around the corner to see what snack he had gotten into, he was standing in front of the Christmas tree inspecting one of the wrapped gifts! It was really cute.

I hope that you all have a very Merry Christmas!!

Lamb Henry

One more week to go...

2007-12-16T22:37:00.000-08:00

Well, I can not yet tell if the new med is working or not. Abram has had fewer seizures the past couple of days than he did when he was in the hospital, but he has also been sleeping better. Abram has a lot more seizures when he is not well rested, so the seizure number can vary a lot from day to day.

Abram will have one more 24 hour EEG Thursday, and then he will be sent home Friday by noon. I still do not have a plan as to what to do with Isaac and Bella this Thursday when Abram has his last day and a half of treatment. It has been really nice to be able to have Brandon come and relieve me when he is done with work on the EEG days.

It is a lot of work keeping an eye on Abram when he is having his EEG done, as I constantly have to make sure that he does not pull off or trip on the wire leads attached to his head. He also dose not sleep well while the EEG is going on, so that means I spend hours walking around with him during the day, and I am up and down with him at night.

Last time, it was about 6am when I finally told Brandon that he was going to have to take over watching Abram. So, Brandon took care of him, and got him back to sleep so that I could get a couple hours of sleep myself.

Thanks again for all your support! I am looking forward to the end of the treatment this coming Friday.

Lamb Henry

Christmas Tree Time

2007-12-15T19:07:00.000-08:00

Hello! Thank you all so much for your support. Abram spent his 2nd week at Children's this past week. Other than having lots of seizures, he is going well. His sleep schedule has been off with his hospital stay, but he slept through the night after he got home last night.So far, I have not seen a dramatic difference in his seizures since he started the Ganoloxone treatment. The pharmacist at Children's said that Abram was on the placebo the first week of treatment, and Abram only began the real drug this past Thursday. The Dr. said that he would expect it to be about a week before there is an appeared difference in this seizures.

The hope is that Abram's EEG will improve when he has his next one this coming Thursday. Brandon and I have talked about it, and plan to try the Ketogenic diet as plan B if this study drug does not work for Abram. Abram's Dr. thinks that the Ketogenic diet would be a good option for Abram, too.

Christmas tree time! Brandon and the kids and I cut down a Christmas tree from a local Christmas tree farm a couple of blocks from the Henry Home. It was really fun! The kids had a good time putting decorations on it with help from their grandmothers that have been in town the past couple of weeks to watch them while Abram is in the hospital.
I do not think that I make a very good environmentalist, as I have been looking forward to watching Brandon cut down this Christmas tree for a whole year! I think he looks so hot with the Christmas tree over his shoulder, I would marry him all over again in a heartbeat. He has been so great and supportive through the whole Abram issue... I feel very blessed to be his wife.

Thanks again to all of you for your support! It is much appreciated.

Lamb Henry

Abram's first week of Treatment

2007-12-07T20:03:00.000-08:00

Abram completed his first week of treatment at Children's today. He made it through without any major issues, which is good. It was kind of nice getting to spend so much one on one time with him. In fact, he really seemed to enjoy having his momma to himself so much over the past few days.
All of these pictures where taken while Abram was having his 24 hour EEG. For those that do not know what an EEG actually is, please count your blessings! Basically, Abram had a bunch of wires super glued to his head that record what his brain waves are doing. During the 24 hour time, Abram was also video taped, and audio taped, to add in clues as to what is happening when he has seizures. Brandon and I where also instucted to push a red button when Abram had a seizure to highlight that part of the video, and to show how often Brandon and I where actually catching Abram's seizures. The type of seizures Abram has are actually called spasms, which as really small seizures. During Abram's 24 EEG, I think I recorded Abram having around 30 spasms, and he actually had 103 spasms. Out of all of these Spasms, Abram had 12 clusters (groups of spasms), and the largest cluster contained 23 spasms with the cluster length lasting about an hour. The Dr. said that every time Abram had a seizure when I was right there with him, I was able to catch it.
You may see Brandon on the video screen above this picture. When done with work, Brandon would join Abram and I at Children's. The first night at the hospital was a long one without a lot of sleeping going on. Since Abram had a bunch of wires attached to his head, he had trouble getting comfortable. Plus, Abram's little tummy was upset after eating a greasy hospital cafeteria dinner. At about 4:30am Abram's tummy rejected that dinner, and he (and Brandon and I) where able to get a few hours of sleep. After the EEG was over, they took the wires off Abram's head, and he looked like he had fought off a flock of birds with all the extra glue left in his hair. He was given his first dose of the test drug on Wednesday, and then he had an EKG (that is the one where they put a bunch of wires on his chest to look at what is going on with his heart). The next few days he received more of the test medicine, and he had his vitals checked by the nurses as a precaution every sheft.
So far, Brandon and I have seen no difference in Abram's seizures since he has started the Ganoloxone treatment. The hope is that he is on the placebo this week, and that he will be starting the real drug next week. Since this is a blind test, there is no way to know for sure, and Brandon and I are just going to have to wait and see if there is any significant change in Abram's seizures next week.

I was able to talk to a nutritionist while at Children's this past week about the Ketogenic diet. The Dr. does think that Abram would be a good candidate for this diet, and that may become plan B if Ganoloxone does not work.

Thank you so much for all the support! Brandon and I really appreciate your thoughts and prayers.

Lamb Henry

Treatment starts on Tuesday!

2007-12-01T23:31:00.000-08:00

Hello! Thank you so much for your support. Brandon and I have felt very blessed and touched by your generosity and care.

Abram starts his Ganoloxone treatment this Tuesday. My mom will be flying in from Texas on Monday, and she will help watch Isaac and Bella while Brandon and I stay with little Abram. I am glad that Abram is finally going to be treated, but I am not really looking forward to spending days in a hospital. I have never been in a hospital over night in my life, and now I am going to spend almost 10 days in one. Of course, Children's is no ordinary hospital. They have an indoor pool, playrooms, a parent computer room, a coffee shop, and more.

The schedule
If anyone would like to come visit Abram while he is there you are welcome to.
These are the days Abram will be in the Hospital---
December 4-7
December 12-14
December 20-21

The first day of every hospital visit Abram will have a 24 hour EEG preformed. So, other than the 4th, 12th, and 20th, he will be allowed to walk around the hospital and play. He will have his own room, and you can call Children's at (206) 987-2000, and ask to be transferred to Abram Henry's room. I believe Abram will be on the Train 1 level.

I will be checking my phone for messages if you want to call my cell phone at (253)985-3443. I will also be checking my email: lamblightlinder@yahoo.com.

Remember Abram
Please keep Abram in your thoughts and prayers while he is going through treatment. I am not looking forward to the isolation of being stuck in a hospital for such a length of time. But, there are not a lot of options for West Syndrome and I am grateful to have a treatment option available that has few side effects.

While there these three weeks, I hope to have Abram's hearing tested, and to talk to a Children's nutritionist about the Ketogenic Diet.

The Hard Month Ahead
I know this month is going to be a hard one. Lots of blood taking, test, meds, and unknown results. I love my little boy, and I want him to get better so bad. I hope he can make it for the 9 days in the hospital without busting his face on the hard floor, or breaking anything. Abram is the kind of baby that makes you want to be a better person. He is so sweet and loving, and I want the world to be a better place to be more deserving of his living in it.

Lamb Henry

Abram's Teatment Schedule

2007-11-23T19:48:00.000-08:00

Hello everyone! I received the treatment schedule for Abram at Children's, and I posted it below. Basically, this is a three week study, and Abram will have a 24 hour EEG done on the first day of each weekly hospital stay, and then he will stay at the hospital after that to make sure he does well on the test med. So, if anyone wants to come pay a visit to Abram and I during this these hospital stays, it would be appreciated. The med Abram will be on will be given will be given to him around meal times, and other than that he just has to stay inside of the hospital but will be allowed to walk around and such.

My mom, and Brandon's mom will both be flying in from Texas to watch the other kids for the first two weeks that Abram will be in treatment. I assume that it will be mostly me that will be staying with Abram in the hospital, but Brandon plans to take time off from work to come stay with him as well.

Thank you so much for all of your support. Life has been crazy around here, and it is so nice to have you praying for my family, and thinking positive thoughts for Abram. It is hard to let Abram run around like he wants to do because he gets hurt so easily, and I hope that he will be able to play like a regular little toddler soon.

-----------------

Wednesday November 28, 2007 - 2:30PM for 1.5 hours at the Clinical Research Center located on the 6th floor for a Screening Visit. If you enter the Whale entrance and go straight past where you usually go to the Neuro clinic check in area and go to the end of the hallway with the glass wall, you will be at the Clinical Research Center .
After we review the consents and if you agree that you would like to have Abram participate,
Abram will have a height and weight done, blood draw, urine for the study, vital signs, Electrocardiogram a physical and neuro exam by Dr. Saneto.

Tuesday December 4 – 1st Hospital Admission Check in 8:30AM to 4th floor Whale entrance at the Greeters desk to check in to admitting. Please hold Abram’s Medications this AM. After you check in to admitting they may want to take you to the floor but we want you to come to the Clinical Research Center first. Abram will have a blood draw (for antiepileptic meds), Vital signs with height and weight and I will complete the Denver test there.
I will take you to the EEG appointment at 10 AM. From the EEG lab, Abram will be admitted to the Medical floor on the 1st floor.

Wednesday December 5th
Abram will be randomized to study drug A after the EEG is complete. He will have an Electrocardiogram about 2-3 hours after he starts study meds.

Thursday-Friday, December 6, 7
We will continue to titrate Abrams medication and he can go home on Friday probably after his 6th dose of meds around noon.

Wednesday December 12- 2nd Hospital Admission Check in 8:30AM to 4th floor Whale entrance at the Greeters desk to check in to admitting. Please hold Abram’s Medications this AM.
After you check in to admitting they may want to take you to the floor but we want you to come to the Clinical Research Center first. Abram will do blood 2 blood draws to check drug levels for the study this day and this will likely be when he goes to the Medical floor. We don’t know what time until the 5th of December when he starts his medicines. I will take you to EEG for hook up at 10 AM. From the EEG lab, Abram will be admitted to the Medical floor on the 1st floor.

Thursday December 13
Abram will start getting the second medication and continue taking the 1st medication as well

Friday and Saturday December 14, 15
We will continue to titrate Abrams medication and he can go home on Saturday probably after his 6th dose of meds around noon.

-----------
Thanksgiving
Thanksgiving is a time to be thankful for the forefathers of this great nation that went through much suffering and hardship to obtain the freedom the people of this county enjoy. In that light, what Abram is going through does not seem so bad. The hardest part is not knowing the outcome, and having to trust that if the worst comes, God will continue to carry me through it and that I will remain tender hearted and not bitter. I am so thankfull to have Abram as my little boy, and every moment with him is a blessing. When he was a newborn baby, he used to lean in to me when I kissed him. I really don't thing God could have made him any sweeter.

Abram is sleeping better
Abram has started sleeping through the night again since his current anit-seizure mendication was reduced. Not everynight, but most nights. It has been at least a month since he has done that, so it has been nice!

Lamb Henry

Date time for Brandon and I

2007-11-19T19:40:00.000-08:00

Since Abram is going to be in the hospital a lot next month, Brandon and I have gone on a couple of dates recently to get a little time together before the craziness starts. It was really nice.

The days and evenings for Brandon and I are filled with to do list that he and I both have a hard time trying to manage. But, such is life at this stage. It is always nice to have a little time away to just think about what a wonderful husband I have.

Abram had a bit of a rough day today. He had a seizure that caused him to bust his nose. It is a little swollen this evening, but other than that he is fine.

Lamb Henry

Dr. Visits and a Mud Ride

2007-11-16T23:08:00.000-08:00

Well, everything is still on for Abram to start treatment in December. After much phone tag, I finally got in touch with another mother that has her little one on the same test drug that Abram is going to be treated with. She said that her little one had a seizure reduction of about 75% since she started the treatment last June.
Isaac and Bella went with me to a few of Abram's Dr. appointments recently, and Bella is getting good at spotting Doctors. While getting out of the car at the library, Bella saw a man with a tie on getting into his car. She turned to me and said "He is a Doctor!" I said "No honey, he just has on a tie, but he is not a Doctor." The man over heard this exchange, and told me that he was actually a pediatrician!
These are some pictures of Brandon, Isaac, and Bella on a mud ride at the farm. As you can see, they had a great time!!
Thanks for all your support!

Lamb Henry

Safe Shopping

2007-11-12T08:34:00.001-08:00

Hello! Thank you all for your wonderful support! Thanks to the suggestion of a dear friends, Abram is now better protected when he goes to the store with me. I have been using padding that is normally used to protect pipes to pad the grocery cart the past couple of times Abram has gone to the store with me. The last time he went with me, he had a seizure while in the cart, and his head was protected beautifully. I can remember at least 3 times in the past that he has gotten a busted lip from banging his face on a metal cart when having a seizure, so I am more at ease taking him with me to the store now.

I talked to Abram's Dr. at Children's last week, and she agreed to reduce the dose of medication Abram is on. He has been on that same med for the past couple of months, and Brandon and I have seen no benefit of it whatsoever. The Dr. actually wanted Abram to come in and have blood drawn to check the level of medicine in his system before reducing the dose, but Brandon thought that it was unnecessary punishment to draw blood to reduce a med by one pill (he had been taking 6 a day) that has not been visible working anyway. When I told this to the Dr. she questioned weather Abram is a good candidate for a test drug, as there is going to be a lot of blood taking involved. I tried to explain that Brandon and I do not mind Abram having blood taken if it is for a cause that has a chance of working. But, I got a message on my voice mail from the nurse at Children's in charge of the test study saying that she had talked to Abram's Dr. and that the Dr. thought that Brandon and I had changed our minds about having Abram try the test drug treatment. I hope to clear up that mess today.

The good news is that Abram has slept through the night a couple of times in the past week. Since he had been on the 6 pill dose of his medication, he had not slept through the night once. Most of the time, he had been getting up 2-3 times a night. So, this is a huge improvement!

Lamb Henry

Test Drug approved at Children's

2007-10-30T18:10:00.000-07:00

Hello! Thank you all for your wonderful support. I talked to Children's yesterday, and the test drug got the approval that they had been waiting on. Abram will have a screening done on November 30th, and as long as everything looks okay (he is healthy enough, etc.) he will start the treatment process December 4th. Once admitted on Tuesday December 4th, he will have a 24 hour EEG, he will be given the drug or a placebo and watched for 24 hours, given the drug or placebo again and be monitored again, he will have other testing and blood drawn, and will be released that Friday December the 7th.

Once Abram is at home, Brandon and I will administer the drug to him that week, and there will be a nurse calling every day to see how the little guy is doing. On Wednesday of the following week, Abram will go to Children's for another stay in the hospital for three days, and then Thursday the week after that, another day and a half in the hospital. At that point, Brandon and I will get to decide if Abram should continue on the test drug or not. If Abram does stay on it, he will check in with Children's once a month after that point. The drug is only approved for one year. The hope is that the company making it will extend the time it is available. Otherwise, even if it makes all of Abram's seizures go away, he would still have to find a new treatment at the end of his year on Ganaloxone.

Brandon or I are required to be with Abram the whole time he is in the hospital (not that we would want to leave him there!). I think my mother, and Brandon's mother, will try to come up during to process to watch the other two kids.

You are welcome to visit Abram at Children's
Also, the I am used to working full time, watching three kids, and distracting my husband, and cleaning my house all day, and my being closed up in a hospital room for 4 days at a time is going to be hard for me. If anyone wants to come and pay Abram and I a visit during the process, that would be grand. I am sure Brandon will be up there too when he can.

Abram goes to see an Acupuncturist tomorrow
I talked to another mom that has a little one with West Syndrome. Her girl has had some good results with Acupuncture, and has stopped having seizures at night, has had fewer seizures, and is now sleeping through the night. For small tots, the Acupuncturist uses lights instead of needles. The main thing I would like is for Abram to start sleeping through the night again. I can not remember the last time he did not wake up at least once, and most of the time he wakes up twice, and sometime more. Abram will have his first Acupuncture treatment in the morning.

Desire to reduce the level of med Abram is on now

One thing Brandon and I would like is to have the amount of med Abram is currently on reduced. There has not been any reduction on seizures since he has been on it, and the side effects of Abram having balance issues, irritability, and sleep issues, have not been fun. I am going to try to get a hold of his Neurologist to see if the amount can at least be reduced some.

Family fun

Brandon and the kids and I went and got pumpkins from a local farm last weekend. I have some other fun pictures I would like to add, but I will wait until tomorrow.

-Lamb

THANKS THANKS THANKS!!!

2007-10-23T18:48:00.000-07:00

To everyone involved and to everyone who came to Abram's Fundraiser in Texas, we would like to humbly say thanks.

We appreciate all of you.

Brandon

Abram's new words

2007-10-21T00:00:00.000-07:00

This past week, Abram has said a couple of new words. Brandon heard Abram say the word "egg" for the first time. I heard him say the work "duck" when he was watching a Donald Duck video. So, all of that is encouraging. I have not seen any reductions in his seizures, but it is nice to hear him talking a bit more.

Going to the grocery store with West Syndrome
Most of Abram's seizures look like a sudden nodding of his head. This is a bit troubling when I take him with me to the grocery store. Earlier this week, Abram had a seizure when he was sitting in the metal grocery cart, and banged his poor little nose! Once at home, Brandon and I realized that Abram's nose was swollen. When I was at the grocery store today, I kept my hand on the handle of the cart as much as possible to help guard Abram from hurting himself again. He almost had another face bust, but his head come down on my hand instead of the hard metal. I am going to have to add some extra padding to a cart cover that I have to make things a little safer while shopping with my dear baby.

Chiropractor
I took Abram with me to get adjusted at the Chiropractor today. One of the Dr's at Bastyr said that getting a Chiropractic adjustment was a really good thing to do along with the Cranial Sacral Therapy.

Eating
I have actually been eating like a normal person for the past few days. I think not having to worry about the car situation anymore is a big load off stress wise. Since I now have a car available to me when Brandon is at work, I do not have worry about being stranded if Abram gets hurt badly due to a seizure. I am very thankful.

Where does all the time go?
I still feel like there is not enough of me to go around. Brandon and I stayed up till 5am last night just trying to get some work done. He and I laughed about the fact that it is hard to get anything done when the three little Henry's are awake and doing their best to make lots of messes. They are all expert mess makers.

Rain Rain
For those that are not in Washington State right now, it is the rainy season. I have been looking forward to it. Brandon and I both love the rain, and there has been rain everyday for... weeks now?! The only bad thing is that I still have a Texas wardrobe. So, my feet and sandals got totally soaked when I was running errands yesterday. It is water puddle galore here right now.

Thank you all for your kind support!

Lamb Henry

A busy week at the Henry home

2007-10-17T22:15:00.000-07:00

Hello! Thank you all for your wonderful support. This past week has been a busy one at the Henry home. Last week, for the first time since I became a Real Estate agent, I wrote an offer on a home for one of my clients. This has been very exciting! The offer was accepted, and the transaction has gone smoothly so far. Brandon had to miss work a couple of days this past week to watch the kids, and then he had to work over the weekend to make up the time. So, it has been a crazier than normal around here.

Castle Cake
Isaac and Bella found a recipe for Castle Cake on one of their pre-school websites, and since I have been occupied with work lately, castle cake was their consolation prize. They helped me make it, and had a great time eating the candy off of it. Abram even even had a piece.

Car news
Good news about the car issue. A kind soul generously gave me and my family a car last weekend. It is a '97 minivan, and it seems to be in good condition. It is definitely an upgrade from the '84 minivan Brandon and I had been driving! That old thing broke down on Brandon about 4 times in the last week, and it is at the end of its days now, and ready for minivan heaven. Also, Brandon has a cousin here (in WA) that got a new car recently, and is letting Brandon use his old car as long as needed. So, for the first time in 6 years, Brandon and I have 2 cars! This will make things much easier when I am scheduling Dr. appointments for Abram. Once Abram starts treatment with ganoxolone, he will have over night stays in the Hospital, and having a car to drive him there will be very helpful!

CHIP
Another thing that happened this week is that all the paper work finally went through to get Abram on the CHIP program. When I went to pick up Abram's seizure prescription today, it was totally covered by the government. So, thank you to all of you tax payers out there that made that possible. Abram's medication had been over $80 the last couple times I had payed for it out of pocket.

The test drug
Brandon and I were both able to talk to one of the nurses from Children's today about when Abram will be able to start treatment. There is still one more thing that needs to be approved before they are ready to start, and they hope to have that in order in another week. At best, Children's will be ready to start treatment the end of October. Realistically, they expect it to be the end of November. To be eligible to start treatment with ganoxolone, Abram has to be 24 months old or less. Abram's 2nd birthday is December 27th, which makes his window to try this treatment fairly small.

Reinforcements
That is about it for now. It is nice to have good news to share for a change. Brandon and I will let you know when the dates are more for sure on when treatment will start for Abram. He and I would appreciate reinforcements at that time from those of you that are interested.

Lamb Henry

I talked to Children's today

2007-10-09T11:39:00.000-07:00

Hello! I talked to a nurse at Children's today. She said that she talked to the mother of a child that is on Ganaloxone yesterday, and that the mom said that she would give me a call. Brandon and I had decided to just go ahead and gear up to try Ganaoxlone with or with out hearing from a parent that has had a kid on it. But, the nurse said that Children's is still gearing up to start Ganaloxone right now, and that is would still be another week or two before they are ready to start the treatment. So, Abram has not missed anything.

The Dr that is going to be in charge of doing the test treatment is out of town at a Epilepsy conference right now, and he will be back on Monday. The nurse said that she would know more about when treatment would start once he returns.

That is all I know for now. Yesterday was rough on Brandon as I was gone working most of the day, and Abram was cranky and falling down a lot.

Lamb Henry

Waiting to start treatment

2007-10-07T21:38:00.000-07:00

Hello! Thank you all for your kind support. It is much appreciated.

Still waiting to start treatment
Since the drug Ganaloxone is still in the test faze, stats on how effective it is at treating Abram's condition are not available, and Brandon and I would really like to talk to someone that has had a child on Ganaloxone before Abram starts treatment with it. I talked to Abram's Dr. last Monday, and she said that she would try to coordinate a phone of this nature for me, and then give me a call back on Wednesday for my decision on whether to start treatment with Ganaloxone for Abram or not. I have not heard back from Children's since then, so Brandon and I plan to give the Dr a call tomorrow.

Brandon nor I are actually excited about treating Abram with a test drug, but there are not many options, and none of the medical options look great considering their side effects. Looking that the three main treatment options for West Syndrome by their possible side effects...

1. Death
2. Blindness
3. We don't know

So, Ganaloxone with the unknown side effects does seems to be the thing to go with.

Cranial Sacral Therapy at Bastyr last Friday
Abram's session of Cranial Sacral Therapy went well last Friday. He was not too sure about letting the therapist put her hands on this head and ears, but after a couple of tries he just laid his little head back into her hands and relaxed.

The Dr at Bastyr added one more thing to Abram's list of supplements. It is an Amino Acid called: Alpha Lipoic Acid.

Thank you to everyone that has been helped me get Abram to his appointments. With only one car, Brandon either has to take the day off work, or I have to get a sitter for my other two kids that is willing to let me drive her car to Seattle. Again, thanks so much!

Handling stress
I have been having trouble eating since I got the news about Abram. I have other things to do rather than throw a pity party, so I seem to be dealing with my stress in the form of Nausea. I talked to a friend today who has a son with West Syndrome, and she acted like that was pretty normal mom response.

Lamb Henry

This week

2007-10-05T08:39:00.000-07:00

This week Bella and Isaac learned how to fight fires and save babies. So, I guess we got that out of the way. If anyone needs them for an emergency they can be reached at our home number.

Abram has been having about 5-10 seizures a day this week. He is maxed out on Zonegran right now. It doesn't seem to have made a major difference in his condition. I think we have decided to go with the new test drug Ganaloxone. We will be starting it within a week more than likely.

Fun, fun, fun.

All in all, Abram seems to be in good spirits. In between napping he will run around and play.

Does anyone in the washington crowd know where a good place to get a used car is? We've had 2 cars go bad on us in the last few months. The one we currently are driving broke down on me yesterday. I was able to patch it up, but it is dying fast.

Thanks again to everyone who is spending time raising money for Abram.

Brandon

THANK YOU TEXAS

2007-09-30T12:36:00.000-07:00

A BIG Texas sized thanks to everyone working to raise money for Abram. Abram's fund is being supported by friends, family, the First Baptist Church, and total strangers as well.

We're not sure what all of our financial aid is going to cover. The drugs he is about to start are experimental. They are not approved by the FDA. That means it might not be covered in our financial aid.

We need all the donations we can get.

I appreciate all of you.

Brandon

Cranial Sacral Therapy

2007-09-28T22:03:00.000-07:00

Abram had his first session of Cranial Sacral Therapy today at Bastyr. It seemed to go really well. The lady that performed the Therapy said that Abram was very receptive to it, and that Abram had 3 releases during the session.

This was the first time I had ever seen this sort of thing done. During the Cranial Sacral therapy, Abram sat on my lap, and had what seemed to be a very light massage. Abram appeared to know something out of the ordinary was happening. Once in a while, Abram would get really quiet, he would look at me then look at the therapist, as if he was trying to figure out what was going on.

When the Cranial Sacral Therapy was over, Abram was really calm, and after I gave him a little bit of milk, he fell right to sleep. This is really good! Most kids his age have this same response after receiving Cranial Sacral Therapy.

My hope
I am really wondering if this is something that will be helpful for Abram. Abram has always had excellent motor stills, and I think that he is a tactile learner. Abram only has one favorite book, and it is a touch and feel book! Given that he is so receptive to touch in general, I hope that the Cranial Sacral Therapy will really benefit him.

The Dr also said...
Other than that, the Dr wants to up Abram's dose of Thorne, and start Abram on B-complex. Next Friday Abram will get another Cranial Sacral Therapy session, and will continue them once a week. The Dr. also said, that he has done more research on Abram's condition, and if Abram's seizures do not improve over the next couple of weeks, there are a couple of powerful antioxidants that Abram can try.

Thanks again for all of your support!

Lamb Henry

The rest of the family

2007-09-27T11:47:00.000-07:00

Isaac spelled the words in the pictures above all by himself! There was only one word that he mixed up (kiet instead of kite) and I helped him fix it before Brandon took the pictures.

Isaac and Bella
Bella and Isaac do not really know what is going on with Abram. They know that he has been going to the Dr. a lot, and they know that he has seizures, but that is about it.

Once in a while, Bella will cry when I tell her that she can not come to the Dr. with me and Abram. Sometimes she or Isaac will come up with an ailment that they think should entitle them to go to the Dr. as well. All that is to be expected though!

Brandon
Brandon is still having nightmare's on a regular basis, and has been since Abram got the diagnosis. He does not really want to talk about it with people that are not family members, and even with family members he only wants to talk about Abram's situation on a limited basis. Talking about it just makes him feel worse. He said to me recently "You mean when you talk about it with people it actually makes you feel better?!"

Me
Since Abram has been taking medication, he has not been sleeping though the night on a regular basis, which means I have not been sleeping well either. I wish that he had heard the sermon I did last Sunday about getting a good nights sleep at least 6 days a week! I am sure all the mothers of the church would appreciate Steve taking this sermon to the nursery, as it would be nice to have a little one that follows that advice like a zealot. The past week, Abram has been waking up in the middle of the night almost every day. The past couple of nights, he has been getting up between 2am and 3am.

Abram
One good thing that my mother pointed out recently is that as young as Abram is, he will not remember any of this. Right now, all Abram knows is: love, food, play, and sleep. I pray that he will get better, and not be tainted by West Syndrome for the rest of his life. He is such a sweet little guy!

The Neurologist recommends treating Abram with Ganaxolone.

2007-09-26T17:56:00.000-07:00

Hello everyone! Thank you so much for your thoughts, prayers, and support. It is very much appreciated.

The appointment today with Abram's Neurologist
I took Abram to his Neurologist, and she said that she recommends the next step in Abram's treatment be a synthetic hormone treatment called Ganaxolone. Ganaxolone is a new drug that is still in the test phase. That means, there is no data to show how effective it is, etc.

Ganaxolone is supposed to work very similar to the Natural Hormone Treatment ACTH, but with out the major side effects of ACTH. Right now, there is a test study being conducted in LA, and all those that started the treatment, have all continued with it 6 months later. The Dr said that no Dr on earth would keep a patient on a treatment that was not being affective, so it this makes the effectiveness of Ganaxolne to appear really good.

If Brandon and I decide to try it
Children's has just been approved to administer Ganaxolone, and plans to train the nurses on how to use it this next week. Though the Dr said that there are no guarantees, it is likely that Abram would be able to start treatment with Ganaolxone the first week of October.

Treatment includes 21 days of treatment, at the end of which Abram could continue on it, or stop it and try something else. The first week of treatment Abram would be given either the drug Ganaxolone, or a placebo (sugar pill), and the second week he would be given the drug Ganaxolne, and given Ganaxlone again the third week. Abram would also have to be in the hospital for 2 days, and have 3 overnight EEG's done.

If we choose to not do the test drug
Brandon and I are going to have to be some research on this, and then decide if this is what he and I think is the best route to go. The alternative would be Vigabatrin, witch the Dr said has a 50% rate of working. The major side effect with Vigabatrin is a 25% chance of developing tunnel vision, and a seemingly temporary increase in white matter in the brain.

Blood work
Abram had blood drawn today to check the levels of Zonagran in his blood. The first time the nurse stuck Abram with the needle he missed the vain, dug around in his arm a little bit, and then had to stick Abram's other arm. Ouch! Not fun! But, if the decision is to put Abram on Vigabatrin, the blood levels have to be up to a curtain level before they can say "other medications failed."

Still on Zonagran
I had thought since this med is not working, Abram would be able to get off of it, but not so. The Dr said that even if the medication does not stop the seizures, the thought is that it is still doing something in his brain to help prevent damage. She said that Abram can not be weaned off of Zonagran until he starts on another medication.

B6
Abram did get the okay to stop taking his B6. If it would have worked to stop his seizures, it already would have. I may request that Abram have another B6 test done if/when he has a sedated EEG. I have head the most effective way to test for a B6 deficiency is to give an IV of B6 while an EEG is being done.

In other news
Brandon is looking into working away from home again. With the saving in the Bank disappearing, if he able to do some Emergency Response work again, he will. If it works out, he will be home for 2 weeks, then gone working for 2 weeks. It would be a blessing financially, but I always get the love blues when he is gone, and that is hard.

Thanks again for all the encouragement and support!

Lamb Henry

Dr visit in the moring...

2007-09-25T22:51:00.000-07:00

Hello! I am going to be taking Abram to the Neurologist in the morning. Brandon and I hope that the Dr will let Abram start treatment finally! Abram's seizures seem to be worse this past week. He has been falling down more, and bending over more when he has one.

It seems like he has been more chatty lately though. He has been talking about his "Dada" all day the past few days.

Lamb Henry

Texas Support

2007-09-21T19:26:00.001-07:00

A big thanks to all down in Texas who are working on a fundraiser for Abram. I've been in hiding lately because I've been really depressed over this whole thing.

I do appreciate all of you.

Brandon

Abram got to meet the Mayor

2007-09-19T19:16:00.000-07:00

As some of you may know, a couple of weeks before Abram got diagnosed with West Syndrome, I started a new job working as a Real Estate Agent for ZipRealty. Everyone there has been wonderfully supportive. It has been really nice being able to be at home with Abram the majority of the week. Every work at home mom knows the challenge of balancing work and home, and I am still learning the skill of work ending before the day is over.

Anyway, I had called the Mayor of Pacific (Pacific is the small City I live in), and he invited me to come talk to him about things that would benefit me and my Real Estate team. Being a working mom, my three little ones got to walk down to Pacific City Hall with me, and meet the Mayor! The meeting went well, and there were only a couple of time-outs involved. But, I figure most kids do not have the chance to meet the Mayor before the age of two, so Abram is doing petty well.

Other than that, I found that Abram will eat his meds if I mix them in chocolate ice cream. So, just a spoon full of sugar is the best route to go after all!

Abram's being fussier than normal is such a switch for him. When my mother in law first met her new grandson Abram, she called him the Stepford Baby (as in The Stepford Wives), because he was always so happy, she said that she didn't believe he was a real baby.

A big thanks to Lake Taps Christan Church for all the support, and putting Abram's cute little face, and blog link, on the newsletter. Brandon and I really appreciate it!

Lamb Henry

Naturopathic Medicine for Abram

2007-09-17T21:56:00.000-07:00

I took Abram to the Dr. at Bastyr Center of Natural Health last Friday. The beginning of the Dr. visit was started with hugs from the two students that were working that day. One of the girls said her daughter had a heart condition, and that she knew how hard it is when you have a kid that needs lots of medical care. Both of the students where very sweet, and there were also two Dr's that came in to oversee things during the visit.

Everyone in the room was in giggles when Abram decided the Dr's tie was perfect for teething! Abram just walked up to where the Dr was sitting, laid his little head down by the Dr's knee for a moment, and then took his tie and starting biting on it. I suppose there will be plenty of time for me to teach Abram proper Dr etiquette when he is seizure free...

As far as treatment goes, the Dr put Abram on four supplements:
*Fish Oil
*Liquid Calcium Magnesium
*Liquid Pediatric Multiple Vitamin-Mineral
*Taurine

Next Bystyr Visit is September 28th
Abram is supposed to take his supplements for the next two weeks, then there is another appointment scheduled with the Dr. so that he can access him again. Also at that appointment, Abram is going to start weekly Cranial Sacral Therapy.

More Trips to Children's
This Saturday, Abram is going to have his hearing checked. Abrams Neurologist is just doing this to be thorough. The next appointment Abram has with his Neurologist is September 26th.

Abram does not like taking his medication. If anyone has any good tips on how to get a baby to take medicine that taste totally nasty, please let me know! Brandon and I have been trying everything that he and I can think up. Sometimes Abram will take it, and sometimes he just spits it out. Not cool. I bought some ice cream today to see if I can hide the med taste in it.

Car issues
When I was pregnant with my oldest son Isaac, I sold my very nice, but car seat unfriendly, sports car, and Brandon and I have been a one car family ever since. With all the Dr visits, and Brandon and I still working, the car issue has been a bit tricky as of late. Brandon has an Aunt and Uncle here is Washington that had an extra car that they gave him. Which is wonderful! But, there is a spark plug that has rusted to the engine, and it will not come out (my husband is extremely strong, and if he can not get it out it seems to be near impossible) That will need to be fixed to make the car drivable. If anyone knows any tricks on this one, that would be great too!

Thank you all for your support, prayers and encouragement. It is much appreciated. It is much easier for me to deal with a fussy baby that spits out his medicine when I know that I am not alone in my wanting him to get better.

Lamb Henry

About the Dr visit yesterday...

2007-09-13T19:07:00.000-07:00

Hello! Thank you so much for your thoughts and prayers. Yesterday, Abram finally met with the Dr that is going to be handling his case at Children's. She specializes in West Syndrome, which is a wonderful blessing!

EEG

She explained Abram's EEG findings a bit more. She said that his high voltage brain waves are happening all the time (when he is not having a seizure) , this is what he first Dr had called "constant back ground noise." The EEG recorded one seizure, and during that time Abram had very slow brain wave activity. She said it is as if Abram's brain blanks out for a moment. She said that Abram is not in any pain when this happens, he just does not know what is going on.

The Next Treatment

As far as treatment goes, she said that the Zonigran that Abram is on has to reach a certain level in the blood before if can be said that it has failed. Since Brandon and I have not seen any difference in the amount of Abram's seizures so far, she said that she expects the Zonigran to fail. Due to proper procedure, Abram has to fail other treatments before vigabitrin can be proscribed. She said that she will order the vigabitrin, and have it shipped from Canada before the technical fail date, to ensure that Abram can start treatment with vigabitrin as soon as possible.

If vigabitrin will be effective in stopping Abram's seizures, I should start working with in 2 weeks. If it does not work, the alternative she spoke about were the Ketogenic diet, and a new test drug. Basically, the test drug is a synthetic hormone that has had good results, and does not come with the major side effects of the natural hormone treatment ACTH.

Development

The Dr wants Abram to start getting language therapy. She said even though he may be borderline on his being behind, she still wants him to get therapy because of the amount of kids with West Syndrome that have development issues. If the Birth to Three Center gives me any trouble when I bring Abram in for therapy, she said that she would write a letter for me, telling them to treat him.

Abram has been talking (saying momma) since he was 6 months old. So, as his mother I am surprised that his language has not taken off yet. My mother in law had two boys, and she thinks that Abram is just a normal little boy, and that his speech is not delayed at all.

The Good News

The Dr said that normally, when kids start having these seizures their development regresses. Since that did not happen in Abram's case, she said that she does think that he will regress. She said the thing she is worried about is that he will not progress.

The Bad News

Most kids that have West Syndrome develop it around 4-6 months old. The seizures themselves are more pronounced at that age, and they often get treatment with-in days of the first seizure. The common thought is that the sooner treatment is started, the better the seizures respond to treatment. Since Abram has been having them for a while, that would imply that he has less chance of treatment working.

Increasing Zonigran Again

Yesterday, Abram had his does of Zonigran increased again. He is now up to 100MG, and was up most of the night.

Financing

More good news would be that I talked to Children's today, and they said that Abram was accepted for their financing program through November. So, what the State does not pay for, Children's will cover through November. Of course, the Naturopath that Abram is going to see will be out of pocket cost, but that should not be near the expense that Abram shall incur at Children's.

In the picture here Abram is eating his cookie consolation prize for having his blood drawn.

Ways to Help:

2007-09-11T18:16:00.000-07:00

I know everyone wants to help in some way or another. I thought I'd post some ways that would provide us help. I'll let Bella lay out some ground rules.

1. Anyone is welcome to to come and stay with us to help out with the other kiddos. We have a spare room and love extra company. The Fall is coming and the NW is beautiful this time of year.

2. Grocery Store gift cards would help feed our little ones. Up here we have Safeway, Fred Meyer and Albertsons. We also have Walmart and Costco.

3. We need people who can ocassionally watch the kids for us. You can email Lamb HERE if you would like to help with this.

4. Every night when you are falling asleep, picture Abram being completely healthy. You don't have to pray or write us a note...just picture his face and think of him being healed.

5. Donations will help us pay for expenses that will come up with Abram.

Brandon

p.s. I'll add stuff as I think of it.

Hello

2007-09-11T18:02:00.000-07:00

Looks like alot of people I haven't heard from in a while are stopping by. A big howdy to all ya'll in Texas. I know its been said, but thanks for the support and the donations. It really does help.

I've been through alot of unpleasant things in my life, but this really does suck the most. I wouldn't mind if I just lost a leg or something like that, but having to see Abram sick and not knowing whether he will get better or not is worse.

We go to the neurologist again tomorrow. We'll let you know how that went.

I'm trying to stay positive. I'm just so devastated.

Brandon

Increasing Abram's Zonegran dose

2007-09-09T23:06:00.000-07:00

Thank you all for your wonderful support! It is so nice to know there are other people praying for my sweet little Abram.

I followed the request of the Dr, and increased Abram's Zonegran dose as of yesterday. I have not seen any noticeable difference in the amount of Abram's seizures yet, but they normally very in amount from day to day anyway.

The medication makes Abram sleepy and cranky. Though Abram normally goes to sleep without any trouble, the past couple of days (since his med was increased) he has had trouble getting to sleep on his own. So, today I have spent a lot of time trying different things to make him happy. Swinging outside, rocking, walking around with him, extra milk, whatever I could think of! He is also getting some new teeth, and seems to be bothered by that as well.

He also thinks it is fun to wake me up in the middle of the night. I do not know where little babies get these crazy ideas! A dear friend of mine asked if she could watch the kids so Brandon and I could go on a date. He and I ended up skipping the movie and taking a nap instead!

Yes, it is the little joys in life that are easier to appreciate when parenting small children. I am always thankful for things like getting a whole 6 hours of sleep, sitting down, eating while the food it still hot, happy children, a baby that finally gets that nap after an hour of fussing about wanting one, and things like that.

Lamb Henry

Sunny & 65

2007-09-08T15:00:00.000-07:00

Today was a beautiful day. We had a fun time playing out in the yard. One of Abram's favorite things to do is swing, so we spent about 2 hours outside swinging. He is in good spirits.

Today was a good day.

Brandon

Abram's MRI was normal!

2007-09-07T17:55:00.000-07:00

Hello everyone! I just heard from Children's this afternoon, and they said that Abram's MRI was NORMAL. That means he does not have a brain tumor, or a brain cyst, and there are no structural abnormalities about Abram's brain. This is good news!

Still at square one as to why Abram is having these seizures, but it is good to know that it is not due to anything like a major brain tumor.

There is a Dr at Bastyr Center for Natural Health that worked some Naturopathic magic for another little boy with West Syndrome, named Elijah. I just made an appointment for Abram to see this Dr next Friday. For those of you that would like to read Elijah's story, his mom said it was okay for me to share his care bridge page with you:

http://www.caringbridge.org/visit/elijah414

If you have a chance, look at the post from March 24th & August 06, 2007. That is where Elyssa talks about Elijah's seizures stopping, and his being able to get off of medication (that was not working anyway). It is a very encouraging story!

I hope all of you with little ones are kissing your babies as much as possible! Thank you all so much for your kind words and support.

Lamb Henry

MRI food rules = fussy baby

2007-09-06T22:50:00.000-07:00

Hello! Today Abram had his MRI done at Children's. The hope is to find out more about what could be causing Abram's seizures, that way the course of treatment can be better decided.

I had to get Abram up a little early this morning so he could eat his breakfast before the food cut off hour of 8am. After which, he and I where off to Children's for a special baggie that he got to wear under his diaper to get another specimen for testing, to save me from having to follow a naked baby around the house with a cup.

Back home he and I went. He took a tiny nap, and then I kept trying to get him to drink clear liquids, as the liquid cut off was 12:pm, and his MRI was not scheduled until 1:45pm. Even though I tried my best to talk him into drinking as close to 12pm as possible, he was a little cranky from only getting half a nap in the car, and would not.

About 12:15pm, Abram decided that he was ready for something to drink, and I could not give him anything! From about that time on, he just fussed and cried off and on until he was sedated for his MRI at about 2:30pm. This was the first time he had ever had any kind of anesthesia, and he did just fine.

I was not permitted in the actual MRI area, so I took advantage of the time (as every mother of three young children knows how) and started reading a book on the Ketogenic diet called "Keto Kid." Elyssa, a very sweet mother of a little boy with West Syndrome, sent me two books on the Ketogenic diet. Her son had done the ACTH treatment two times, had horrid side effects, and the results where not very good. She had been gearing up to start him on the Ketogenic diet, when all of the sudden, her sons seizures stopped due to treatment her son received from naturopathic medicine.

About 30min after Abram had been taken away for his MRI, he was wheeled back into the recovery room where I was waiting for him. After a few minutes, he opened his eyes a tiny bit, and looked at me and the room. He closed his eyes again to finish his nap, and in came the nurse to take out his IV and replace it with a band-aid. At that point, he woke up enough to protest!

Abram did a great job, and got lots of praise from his momma, and lots of juice and snacks! The Dr said that someone would get back with me about what the MRI results are with in 24 hours. At that point, the Dr said they might have a better idea about what kind of treatment would be best for Abram.

The more Brandon and I had researched that ACTH treatment, the more he and I would rather try other treatment options before having to go that route. So, your prayers are much appreciated as to what the next step will be in the treatment process. Thanks so much!

FYI: Abram has not been beating up bullies lately. The little bruise you see his cheek is from one of the EEG electrodes that had been placed there.

Lamb Henry

Tomorrow

2007-09-05T20:44:00.000-07:00

Abram gets his MRI. Not alot of new stuff to report. He had about 10 mild seizures today. He's been fussy and sleepy because of the medicine. Lamb and I are overwhelmed with everything right now. Looking forward to better days.

I am tired.

Brandon

Update

2007-09-04T14:06:00.001-07:00

Hello! Thank you all so much for your support. It is very appreciated. Saturday, Abram had a few specimen taken, and test have been started to see if any reason for his seizures can be found. Basically, as long as Abram has these seizures, there is a chance is that he will suffer brain damage. The faster that a treatment can be found that works, the better.

The Dr started Abram on a high dose of vitamin B6, and an anti seizure medicine called Zonegran. The Dr said it is a long shot that either of these will actually stop the seizures, but that one of these alone does stop them in some cases. After the Dr. looked Abram over, he said the only thing that concerned him developmentally about Abram was that he is not talking in sentences. He said this may or may not be due to his condition.

There are only two main treatment options for West Syndrome; ACTH (a hormone treatment) and Vigabatrin. ACTH is the only one prescribed in the US, and last week it went up in price astronomically (it now cost$100K-$500K for 1 treatment!). Due to this, the Dr.wants to wait and put Abram on a treatment after his MRI has been done.

This week, Brandon and I hope to convince the Dr. to get Abram started on the other treatment Vigabatrin. Vigabatrin has fewer side effects, and about the same level of success, as ACTH.

All and all, it has been a rough weekend for me and my husband. Your continued prayers and support are most appreciated. Thanks so much!

Lamb Henry

My son was just diagnosed with a serious form of epilepsy...

2007-09-02T11:59:00.000-07:00

Hello friends and family! Your thoughts of good will,and prayers would be much appreciated for my son Abram. Abram started doing a weird little nodding motion with his head when he was about a year old. At first, I thought nothing of it. It got worse over time, and then my husband said that he thought that Abram was having small seizures.

Abram is now about a year and a half, and I just took him to the Children's Hospital today for an EEG.

My husband took the call from the Dr. at Children's this evening about the results of the EEG, and they were not good. Abram's brain activity is very irregular, and he is having Epileptic Spasms. The Dr.said Abram has West Syndrome, and it is urgent that he start treatment right away.

The hormone treatment that they want to do last 2-3weeks, and has a 60-75% chance of stopping the seizures. If this treatment does not work, there is one other treatment that can be tried. If that does not work, Abram will be facing severe neurological damage and death.

Tomorrow I am taking Abram to Children's to have his immune system checked to ensure he can handle the rigorous hormone treatment. He is expected to test fine, and then proceed with treatment.

Here is a link with more information on West Syndrome: http://www.wssg.org.uk/index.htm

Basically, none of the news is good. Please keep Abram in your thoughts and prayers. Thank you so much! Abram is the kind of baby every mother hopes to have. He could not be any sweeter to his mommy, and I want to keep him around for a while.

Lamb Henry