Archive for December, 2008

Santa, Shopping, Christmas, a Broken Wrist and Something Funky…

December 31, 2008 | Updates

Wow, the last three weeks just flew by.  I’m pretty sure it was because they were filled with work, shopping, outings, shopping, parties and, well, shopping.  You know, even if you only bought like 3 presents for each person in our immediate family plus Christmas pajamas, you’d be up to like 28 presents and just coming up with ideas for that many presents is torture, much less actually going out and buying them all…and then there’s the extended family and friends and, well, I was pretty much Scrooge this year and still…SO MUCH SHOPPING!

BUT, it all worked out and we had a nice Christmas.  (Well, except for the fact that the kids are out of school for 2 weeks, which I should love, but I don’t, because they all argue with each other 24/7 unless they’re playing video games, which isn’t good for them, and I’m really in a whinning while writing run-on-sentences mood, so I’ll just stop there.)

Samuel was a HAPPY boy for Christmas!  That’s the best gift we could have gotten.  Over the past 3 weeks, his smiles have increased a little each day and the past week or so, he has been so stinkin’ happy, I worry he might swallow himself with those big smiles.  Santa was good to him, but even more so, our family was.  Many in our family decided that this year instead of doing extended family gifts, they would donate that money to Samuel.  We were really touched by it…REALLY touched.  It seems that the less people have, the more generous they are.  It’s certainly a tribute to the human spirit.  And we are so grateful to have such wonderful people in our family.  Thanks, guys!  And to top it off, Nana, Papa, Grandma and Kaylee spoiled the heck out of him as well.  Their visit was like Santa all over again!

(Here’s Samuel & Nathan a few days before Christmas watching TV together in matching PJ’s in Samuel bed.)

(And here he is opening presents the day after Christmas with Grandma.)

Santa had a good time teasing Ben this year (who thought for sure he was getting a lump of coal) by wrapping up a log with a note that said, “Ben, I have bad news about your gift this year. Because of the way you’ve been acting…” Of course there was an inside to the note, but Ben didn’t see it at first. When he did, the note concluded with, “your present was way too big to fit in the house and I had to leave it in the garage…bet you thought you were getting coal, huh?” Ben’s new bright orange bike was sitting in the garage - much to Ben’s relief.

So, there’s only a few other pieces of news. Tanner broke his wrist snowmobiling on Christmas Eve Day. He was in a cast for a week and now has a heavy duty 24/7 splint for the next 5 weeks. He broke a bone that doesn’t always heal very well, so he’s having to be really careful not to use it.

And, true to form, Nathan gave the cold he’s had for the last week to Samuel a few days ago. So, Samuel’s got a stuffy head and a cough. He’s still been happy, though, you can just tell he doesn’t feel quite right. He fell asleep in the tub this afternoon and I didn’t dare move him for an hour because he was so peaceful. But after an hour of watching him sleep in the bathtub, I finally got him out and got him dressed and he slept through all that as well. Hopefully, he’ll get better quick.

Last of all, there’s something funky going on with the catheter from Samuel’s baclofen pump. I noticed it 2 days ago and we’ll go to get x-rays of it next week sometime. But the site underneath his incision is swollen.

You can see the large bump on his back right on his spinal column. Right behind that is a raised curve that is the catheter from his pump underneath his skin. That catheter then feeds into his spinal column. And it is at that point where the raised bump is. Not sure what that means, but his doctor isn’t concerned as long as he is feeling well and we get it x-rayed next week. But here’s my theory…(and you have to realize this is the kind of stuff I obsess about because I can’t ask Samuel how he feels or what is bothering him - EVER - so realize I could be completely wrong in my hairbrained idea here. But I hope I’m right.)

So, what if, the catheter has come loose or is broken. Then that would mean Samuel isn’t getting his baclofen anymore. But that would mean he would be horribly upset and going through withdrawals and he is completely happy, right? And then I would have to refer you to the last stinkin’ 3 months where I have wanted to shoot myself (not really, but kind of) because he has been so HORRIBLY miserable. Could those have been withdrawals? He doesn’t get much of the medication each day - 90 teeny, tiny micrograms. That would equate to like 8 milligrams in the last 3 months. There are 30 milligrams in an ounce. So we’re talking like 1/4 of an ounce is all that would have leaked out over the past 3 months of living hell difficulty we’ve gone through. And that would be enough to make that little bump on his back.

Wow! Wouldn’t it be great if he was totally off the baclofen and we could just pull that pump out? (I’m not getting my hopes up, really, I’m not.) And I can only say “wouldn’t that be great”  - NOW - that the withdrawals are over. But man, I would sure be happy if all that we went through ended up being for something good, ya know?

So, that’s it for now. It’s New Year’s Eve and we’re having a few friends over. Should be fun. I hope you all have a great time - especially you, mom! You know why!

Love you all,

The Jewkes

Doing Better…

December 10, 2008 | Updates

I’m doing better at posting - only a little over a week since the last post.  Honestly, I have so much to do I can’t think straight (not that I can normally think straight), but you get the idea.  Christmas always comes so fast each year and I’m never prepared for it.  Luckily this year, there will be a little less shopping.  We told the kids even Santa’s feeling the crunch, so there will be less presents this year.  Actually, I’m looking forward to it.  It’ll feel more like Christmas should - more time together and less commercialism.

Samuel is doing a little better.  He has been to school most everyday since my last post.  He didn’t go today because when I picked him up to take him to the car he made the saddest little face and the tears started streaming.  When I asked him if he wanted to go to school, I got the sad face again and more tears and being the hard nosed mom I am, I told him he could stay home.  I just can’t fight those tears.  I just can’t.  I don’t think it had anything to do with school though.  I think he likes it there.  I just think he wasn’t feeling quite right today.  Maybe tomorrow…

We’ve seen a few smiles, though, and that’s been nice.  And he’s been more calm some days.  We did take a trip to Salt Lake today to see the Follow-Up Nutrition Clinic.  They confirmed that he is way too skinny.  I explained to them that he lost all the weight while he was sick and has gained back about 3 pounds in the last few weeks.  They gave me a few ideas to get more calories into him and we’ll be watching him closely for the next little while.  They also did a bunch of blood draws just to make sure nothing strange is going on.  But basically, he should weigh between 36 and 40 lbs and he only weighs 32.  We’ll get it back up there, though.

My favorite part of the day was this short conversation with the nutritionist:

Nutritionist:  “If he drops below 80% of what he should weigh, then we’ll have to take more drastic measures - like tube feedings.”

Me:  Dead silence and a blank stare as my mind tries to figure out what the crap she just said.  Tube feedings…tube feedings?  Isn’t that what we already do with him?  Is there some other procedure that is called the same thing?  Doesn’t she know he has a tube?  Maybe she means IV nutrition?

Awkward silence as my brain is too slow to figure out what to even say in response…

Nutritionist:  Realization hits her…”Um, I mean more tube feedings than he’s already getting.”

Me:  “Uh, ok.”  As I try to figure out exactly how that is a more drastic measure…but, whatever.

So, that’s it for now.  I’ll leave you with a cute picture of Samuel.  He had a blow out diaper last night.  Well, I guess it really wasn’t a blow out.  It was more of a “the diaper came off before he went and no one noticed until he’d been wiggling around in it for 15 minutes” diaper.  The only way I can describe the mess is it was something NO ONE and I mean NO ONE should EVER and I mean EVER have to see, smell or clean up.  It was WRONG.  Really.  It was.  But after hauling Samuel to the tub, spraying him down and then filling the tub with bubbles and water to make sure every inch of him was sanitized, I got this cute picture.  And it reminded me of a little angel…

Hope your holidays are shaping up to be great!

Love,

The Jewkes

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