The Latest
I'm just in utter awe of the generosity of our friends and family (and people we don't even personally know). Over the last month, we have collected $930 towards the $1200 we need to send Wes to camp. I can't believe it's all come together so fast. We are truly truly blessed. I have no doubt we will be able to come up with the last few hundred dollars to pay for camp. Beyond the financial support, which is amazing in and of itself, we feel like so many people are rallying behind Wesley and care immensely about him. It's a great feeling to have so many people love your child.
Amidst all this fundraising time, we've had a couple developments in his health.
We've seen an increase in seizures again since around October. Because of this, he was refered to the intractable epilepsy clinic to see an epileptologist (neurologist who focuses on epilepsy) instead of our regular neurologist (who is amazing by the way). The epileptologist had us stay at the hospital for three days to do an extended EEG in hopes we could catch one of his seizures while being monitored. Well in true Wesley style, he was seizure free for those three days and then had one in the lobby after we were discharged and 3 more within 48 hours of being discharged. Our next plan is to do another MRI combined with a PET scan to see what's really going on in his brain. Hopefully this gives us some answers and a plan for his future. A positive in this is we have been able to switch him to a higher dose of one seizure med instead of the two he was on before and have had the same level of seizure control. The one we got rid of was making him super sleepy during the day so we're happy to be done with it. The other one makes him have significant mood swings while he adjusts to the new dose so we were warned he'll probably be really moody for the next two months or so. There are definitely trade offs for every type of seizure control method.
Right after finishing his EEG, we also went and had his g-tube switched out for a g-j-tube. This one has two ports, one that goes into the stomach (g for gastric) and one that goes all the way to his small intestine (j for jejunum). We need to feed him through his tube at night for him to get enough calories to gain weight. Lately, though, this has been causing him to have horrible, painful reflux all night. While all his day time feedings have stayed the same (including some great progress eating by mouth), he is now getting fed through the j port at night. This has made him much more comfortable, so he's been sleeping better, so he's been generally much happier.
The latest development is his hips. We've noticed his hips not feeling "right" and him losing some range of motion. After some xrays, it looks like his left hip in particular is gradually coming out of socket (sublexed). This is very common in kids with cerebral palsy as the joint doesn't form right because his abnormal muscle tone pulls on it weird and he isn't spending the same amount of time weight bearing on his legs as a typical kid his age would be. We knew this would likely be a problem in the future but are pretty surprised at how quickly his hip has deteriorated. We've scheduled surgery for him at the end of July to reshape his femurs to correct this. That surgery will help him have full range of motion, use his legs and hips better, tolerate standing better and for longer periods, and prevent further damage and pain to his hip joint. That all sounds great but the reality of the surgery is pretty hard to stomach. We're looking at a major surgery. In addition to being painful for him, it will require a 4 day hospital stay, six weeks in a full spica cast, and months of therapy to get back to where he was before surgery. The orthopedist also warned us that kids who need surgery as young as Wesley is, most often will have to have this surgery repeated later on as they grow. I'm mortified thinking about this but the alternative of doing nothing is just not possible.
But amidst all of the medical stuff going on, he is still our sweet, loving, and mostly happy boy! And today when I picked him up, he wrapped his arms around my neck and squeezed giving me my first real hug. My heart just melted!
Amidst all this fundraising time, we've had a couple developments in his health.
We've seen an increase in seizures again since around October. Because of this, he was refered to the intractable epilepsy clinic to see an epileptologist (neurologist who focuses on epilepsy) instead of our regular neurologist (who is amazing by the way). The epileptologist had us stay at the hospital for three days to do an extended EEG in hopes we could catch one of his seizures while being monitored. Well in true Wesley style, he was seizure free for those three days and then had one in the lobby after we were discharged and 3 more within 48 hours of being discharged. Our next plan is to do another MRI combined with a PET scan to see what's really going on in his brain. Hopefully this gives us some answers and a plan for his future. A positive in this is we have been able to switch him to a higher dose of one seizure med instead of the two he was on before and have had the same level of seizure control. The one we got rid of was making him super sleepy during the day so we're happy to be done with it. The other one makes him have significant mood swings while he adjusts to the new dose so we were warned he'll probably be really moody for the next two months or so. There are definitely trade offs for every type of seizure control method.
Right after finishing his EEG, we also went and had his g-tube switched out for a g-j-tube. This one has two ports, one that goes into the stomach (g for gastric) and one that goes all the way to his small intestine (j for jejunum). We need to feed him through his tube at night for him to get enough calories to gain weight. Lately, though, this has been causing him to have horrible, painful reflux all night. While all his day time feedings have stayed the same (including some great progress eating by mouth), he is now getting fed through the j port at night. This has made him much more comfortable, so he's been sleeping better, so he's been generally much happier.
The latest development is his hips. We've noticed his hips not feeling "right" and him losing some range of motion. After some xrays, it looks like his left hip in particular is gradually coming out of socket (sublexed). This is very common in kids with cerebral palsy as the joint doesn't form right because his abnormal muscle tone pulls on it weird and he isn't spending the same amount of time weight bearing on his legs as a typical kid his age would be. We knew this would likely be a problem in the future but are pretty surprised at how quickly his hip has deteriorated. We've scheduled surgery for him at the end of July to reshape his femurs to correct this. That surgery will help him have full range of motion, use his legs and hips better, tolerate standing better and for longer periods, and prevent further damage and pain to his hip joint. That all sounds great but the reality of the surgery is pretty hard to stomach. We're looking at a major surgery. In addition to being painful for him, it will require a 4 day hospital stay, six weeks in a full spica cast, and months of therapy to get back to where he was before surgery. The orthopedist also warned us that kids who need surgery as young as Wesley is, most often will have to have this surgery repeated later on as they grow. I'm mortified thinking about this but the alternative of doing nothing is just not possible.
But amidst all of the medical stuff going on, he is still our sweet, loving, and mostly happy boy! And today when I picked him up, he wrapped his arms around my neck and squeezed giving me my first real hug. My heart just melted!
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