Yea, I’m lame, I know…
December 1, 2008 | Updates
I’m sorry I haven’t posted for so long. It’s just been a crazy month. And I’m pretty sure next month isn’t going to be any better :(. Oh, well.
This is going to be a quick post, I hope! Since the last post, I went up to about 1.75 mL’s of Keppra twice a day and 3 mL’s of Neurontin twice a day. And guess what? Samuel was really irritable AGAIN. That seemed really strange to me that he would be irritable on a higher dose of Keppra AND on a higher dose of Neurontin. They aren’t related drugs. They shouldn’t have the same nasty side effect. So, we went a different route. It has taken me about 3 weeks, but Samuel is now on a new diet that is pretty restrictive, but gives us enough wiggle room to get him all the nutrition he needs. It was a HUGE process. I had to find a local compounding pharmacy, get all new prescriptions and then have his meds specially compounded without any artificial colors or flavors. I also had to revamp his entire diet and figure up all the nutrients and calories, etc, to make sure he was getting what he needs. And, I didn’t really end up being able to follow the introduction of the diet like I was supposed to because the diet is really restrictive at first and Samuel was turning orange again from too many carrots and loosing weight from not enough calories. So, for now, we’ve improvised the best we can.
On this new diet, Samuel is only allowed simple sugars which basically equates to honey and natural sugar in fruits and vegetables. He is also really restricted on the grains he can eat (no gluten, etc). But, the good news is that I have come clear back down on both the seizure meds and we haven’t seen any seizures in weeks. The bad news is that Samuel has been up and down the irritable roller coaster for the past few weeks also. He is certainly better than he was before. In fact, within about 3 days of taking the aritificial stuff out of his meds, he calmed back down - way back down. We even took him to school for the few days they were in session last week. But then he was horribly upset on Thanksgiving Day (crying for several hours straight). But the last 3 days, he’s pretty much been an angel. The really bad news, though, is that his smiles still haven’t come back. That one kills me. But I’m still very hopeful they will.
The only other news is we had a dental checkup and this time I sedated Samuel myself and things went very smoothly. The other kids racked up the cavities, though. Ugh! I’m thinking we’re for sure skipping Halloween next year. One kid had 1 cavity. Another had 3 cavities. And the baby - 4 cavities! Can you believe that? I’ve never had a 2 1/2 year old with cavities. Not quite sure what happened there? But I told them all that’s what they’re getting for Christmas because even with the 50% discount our dentist gives us, this is going to cost about $1,000. Good crap :(!
We also had a pump refill that went fairly well - except for the fact that Samuel is only happy for about 20 minutes in a doctor’s office and then he’s had enough. And, we’ve even been adventurous and gone to my parent’s house for a birthday celebration and then to a fun cabin for the Thanksgiving holiday. Samuel was great in the car on both trips and mostly good while we were there. It is nice to get away sometimes - even though we can barely squeeze ourselves into the Suburban when we have all of us AND our stuff. I’m not quite sure what we’re going to do when Samuel grow clear out of his sit ‘n stoll and we have to take the stroller or the wheelchair instead. We’ll have to pull a trailer, I guess. But I also must say that I am VERY thankful for lower gas prices! Paying $1.67 for gas makes me want to scream “ROAD TRIP”! At least we can actually afford to GO somewhere for awhile.
Last of all, we held a fundraiser for Samuel by selling Thanksgiving pies. Thanks so much to everyone who helped and bought pies! It was a good success and will all go towards our next ABR trip. We were supposed to go to ABR this month, but decided to cancel the trip due to bad timing, a lack of funds and the fact that we haven’t been able to log many hours with Samuel being so sick. So, we’ll go in a few months instead. Thanks again to everyone who helped out! Hope you all had a good holiday!
Love,
The Jewkes
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December 1st, 2008 at 4:28 pm, Darlene Says:
Hello Jewkes:
Just thought I would drop by and see how Samuel is doing. So glad to hear things are finally starting to look up a bit or at least better then they were. Poor kid he has been through so much these past couple of months. I wish I could help out with the funds for his upcoming ABR trip,The sad part is I have not found a replacement job since being layed off in June. Otherwise I would be more then willing to help out. So I hope you can forgive me,as all I can offer now is my prayers.Finacially I am strapped for funds. Have a blessed holiday season from my house to yours. sending my love……..Darlene
December 2nd, 2008 at 5:38 pm, Caradie & Corbin Says:
You could road trip to my house.
Give Samuel a big hug from me & Corbie
December 11th, 2008 at 3:00 pm, Natalie Says:
If you’re ever down our way, I know a GREAT dentist who I’m sure could cut ya a deal!
Love ya.