Archive for February, 2008
Our winter wonderland…
February 11, 2008 | Updates
We haven’t had this much snow in years! In fact, everytime I drive by the local high school, there are tractors there loading snow into dump trucks to be carried off to who knows where, but hopefully, far away from my house because when that snow melts, it’s going to make for A LOT of water! Of course, some of us enjoy it more than others. And one of my boys is a real artist, no matter what he has to work with (see icicle sculpture below)!
Today we made a trip to Salt Lake to have Samuel’s baclofen pump reduced. He is now at 135 micrograms per day. We will change the medication in his pump to a less concentrated one next month so we can continue with our decreases because at the concentration he has now, we can’t go lower than 94 micrograms per day. AND, for the first time ever, our rehab doctor agreed that it appears that he will be able to have the pump removed at some point. There are no guarantees that the baclofen isn’t helping him anymore, but I’m hoping it’s not. Sounds funny, but it would be great to get that pump out of him. Just one less thing to worry about.
On our way to Salt Lake, I decided it wouldn’t hurt Samuel to just look out the window instead of watching a movie on the DVD player. (Mostly, I just wanted to listen to music instead of a kid show I’d heard a thousand times.) Samuel was content for about an hour doing so. I can see him very clearly in my rear view mirror and probably check him every 10 seconds (mother’s porogative!) A new song came on the radio that I recognized, but didn’t know right away. As I looked in the mirror, I saw that Samuel was all kinds of smiles. And then I realized the song on the radio was the theme song to the movie Shrek. He smiled through the whole thing! It was amazing to me that he recognized the song all on his own!
The only bad news today is that I’m an idiot. No really, I am. As I was measuring up Samuel’s Keppra (seizure med) tonight, I happened to glance at the words on the bottle and noticed it said Neurontin. I brushed it off quickly thinking that must be the generic name for Keppra. But then I quickly realized I had never heard a generic name for Keppra before and Neurontin sounded so familiar…and CRAP! That’s when it hit me. I was giving him Neurontin - NOT Keppra. How in the heck? I had no idea. He hadn’t taken Neurontin for months and months now! How did I do that?! And how long had I been doing that for?! The bottle was nearly empty! Aaaaauuuuurrrrggggghhhhh!
Seizure meds are nothing to mess with. If you start too quickly on them, you can cause seizures. If you stop too quickly, you can cause seizures. If you miss a dose, you can cause seizures. If you overdose, you can cause seizures. Basically, if you don’t give them just right, instead of helping the seizures, you will make them worse. And often times - MUCH worse!
So, here’s the best I can figure it. I like to keep some of his Keppra in the car for emergencies. But I have to rotate that medication because it doesn’t stay good forever. So, somehow between cleaning out his medication drawer and his emergency pack in December, I got ahold of an old bottle of Neurontin. But the Keppra and Neurontin bottles look exactly alike. So I either mixed them together or mixed them up. Either way, somewhere around the end of the year, I started giving Samuel Neurontin instead of Keppra. And somehow when I ordered a refill, I had the Neurontin bottle in my hand and ordered that. (I just read the prescription number to the pharmacist.) And that bottle is now nearly gone. So, he has not had any Keppra for at least a month! Jeez! Neurontin is not meant to be a seizure med on its own. It is only said to work when it is given in conjunction with other seizure meds. Man, oh, man, I’m counting my blessings that we didn’t have a grand mal seizure because of this. HOW in the world did I make such a HUGE mistake?!
So, I’ll be calling the neurologist in the morning to see what he suggests now. I guess this explains the increase in seizures since the first of the year. I guess in the end, all is well that ends well. And somewhere, there must be a silver lining. But, honestly, I’m just kicking myself for assuming that just because two bottles looked alike, they contained the same thing. I have GOT to be more careful!
Well, that’s it for now. Hope you’re either in a nice, sunny place or at least less burried than we are! We need the water, but the runoff could be bad if it melts too fast. Let’s hope for all good things (with the snow, my brain and poor little Samuel’s seizures)!
Love,
The Jewkes
Ear infections…
Updates
There’s not much to write this week. Wednesday, Samuel threw up at school. Tuesday night he had a fever again, so I was wondering if maybe his cold had turned into a sinus infection or ear infection. In addition, the last 3 times I had given Nathan a bath, I had noticed him pulling at his right ear. So, I took them both to the doctor and Nathan had a bad ear infection in his right ear while Samuel’s was just a bit red and mostly hidden by ear wax. So, they are both on antibiotics for 10 days and then we go back to have their ears checked again and have the wax flushed out of Samuel’s. That should be a real treat. Samuel threw a fit just because the doctor looked in his ears. I swear, his aversion for doctors is getting worse and worse, but honestly who can blame him. I’d feel the same way.
Not much else going on. Samuel is baulking at his “anti-roll” device, but we are pushing forward with it anyway. He has such determination when he doesn’t want to do something. He cried for 45 minutes in it the other night because I simply refused to take it off until he stopped crying about it. But when I get fed up with his determination, I realize it is that determination that causes him to keep trying and trying after 2 1/2 years of trying to recover. We NEED that determination. It’s a good thing.
I’ve been showing Nathan the little 3 x 5 word cards I use with Samuel just for fun. Nathan, of course, will only spend about 5 seconds looking at them. (Samuel’s attention span is much better.) But tonight (after only a week of seeing them), he brought me a magnent off the fridge that had one of the boy’s name on it and I could tell he was asking me what it said. He knew it was a word, which is really impressive. He understood that it said something. He just didn’t know what. Pretty cool for an 18 month old.
Well, that’s about it for this week. But I realized I forgot to send notification to everyone about last week’s post, so you may not have read it yet. Keep scrolling down if you feel inclined to do so… And keep praying for our little guy.
Love,
The Jewkes
Busy & snowy, but still plodding along…
February 4, 2008 | Updates
I have a lot that I could write tonight, but I’m going to try and keep it brief since it is late and tomorrow is Monday. Since writing last, my grandmother passed away. She lived in Cedar City, so we took a very quick trip there for the funeral. There was a lot of snow and bad weather. And we left on a Monday afternoon and were back by Tuesday night. So, it was mostly driving. The funeral was very nice and we did get to spend a little time with a lot of family who we haven’t seen in a long while. So, it was VERY nice and worth the trip. I just hope, hope, hope that we can get a chance soon to see them all again for A LOT longer. And I hope that grandpa will fair well with grandma being gone. He has cared for her a lot the last few years and that kind of care seems to create a bond between people that is very deep. I know he will miss her greatly - as we all will.
The kids all did well on the trip. Samuel started coming down with a cold the second day and struggled with spitting up all day long that day. I knew something just wasn’t quite right as he just wasn’t himself and he was in a pretty grouchy mood. He ended up staying home from school the rest of the week. But he faired really well. In fact, one evening, I went to pick him up out of bed and he was so smiley and happy that I sat and talked to him for a while first. When I did pick him up, I realized he was very hot and when I took his temperature, it was 102 degrees. But the kid was happy as could be. So, all is well as he seems to be mostly over it at this point.
Since then, things have been just crazy with work, mostly. But I have been working on Samuel’s home therapy program and rearranged his room, yet again, to try and accomplish a few things - mostly crawling. I now have linoleum over the carpet in this room and I have cleared everything possible from his room to give him a lot of floor space. Then I rigged up an “anti-roll” device that will keep him on his stomach when he’s on the floor (since he tends to roll over a lot onto his back) so that he will hopefully, be able to spend a lot of time on his stomach and learn to crawl. Much of the rest of his therapy equipment remains in the garage which is good and fine except that it seems to be snowing uncontrollably here and sometimes, I seriously cannot find my suburban in the mornings. Oh, I know the moisture is a very good thing for us, but I sure wish I could have my garage back when I’m shoveling 2 feet of snow off my car :)!
We are seeing good changes in Samuel, though. I put him under an infant toy mobile the other day and he really enjoyed it and tried hard to grab at the toys. He seems to be getting more use of his hands. I put him under the same mobile a year ago and he screamed and hated it. So, just being willing to lay under it is progress. He also seems to be allowing us to do more in his mouth (though not a lot more), but anything more is definitely progress. He is still smiling a lot and he seems to be happy on his stomach on the floor a good portion of the day, which is another good change.
The only possibly bad thing I have seen lately is that he is having large seizures now and again. I hadn’t seen a large one for months and then he had one on New Year’s Day. I then saw another one early one morning in the middle of January and then this morning, he had another large one. But although these ones last 2-3 minutes and involve his entire body, they don’t seem to wear him out like the large seizures he’s had before. He is usually just tired for maybe 15-20 minutes and then he is fine again. He is also having several seizures every time he wakes up again. But we have found that he can often keep himself from having the seizures if he will concentrate on us when he feels ones coming. So, I will often watch his eyes when I know he’s having them and as soon as I see the slightest twitch in his eyes, I will grab his arms and say “Stay here with me! Stay here!” He can often focus on me when I do that and keep himself from having the seizures. But this doesn’t work with the larger ones as they are so much more involved.
Anyway, there are a million other things I have thought about and wanted to write, but I can’t think of them right now. Mostly, we are doing well, just overwhelmingly busy. But I am really working up my determination again to get him crawling and to keep working with him often despite all the other things going on in our lives. Please pray that he’ll pick it up soon and that I’ll be able to do my part despite the our crazy lives. He wants it so badly and so do I! Thanks!
Love,
The Jewkes
