I've been waiting to write an update for a few days, until all of Max's appointments were finished and I could just write one post.
On Monday, Max had his every 90 days eye exam. Because he's on Sabril/Vigabatrin for seizures, he has to have an eye exam every 90 days, per the FDA, because there is a risk for tunnel vision with this medication. Never mind that they never needed to see the results of eye exams the 8 previous years he was on the same medication, when it came from another country. But, I digress. Every 90 days we go see Dr. E., his ophthalmologist. He looks deep into Max's eyes, while he tells us fantastic stories. He always makes me laugh, always teaches us something new, and always makes Max smile, because he sings to him while he does the exam. Not bad for the Chief of Opthalmology, who is also a General in the Army National Guard.
He spared us from dilation this time, because we had done it last time, and also because I had one doozy of a time before the visit and must have looked like a crazed mom when we finally got in there. Max had a slight wardrobe malfunction, in the way of his feeding tube coming undone at some point from the house to the hospital, and he had blended food goop all in his shirt and pants and diaper. I caught it just before it really got into his new chair, but it was like wrestling a monkey to get him undressed, cleaned, and redressed on the family restroom changing table. Once I finally got him cleaned up and in his chair, it was time for him to go back for his exam and we were running late at that point. My goal was to get out of there and heading back home before rush hour traffic hit. No such luck. All in all, for the quick 30 minute appointment, it took me four hours to get there and back. We were both pretty exhausted at the end of that day.
Yesterday was a l-a-z-y day! Max and I watched his cartoons, and played with the dogs. We stayed in our pajamas all day and just took it easy. We even watched the Rise of the Guardians movie, which was cute enough, and Max seemed to really like it.
Today, was the big weight check appointment. Back at the end of January we noticed Max was becoming a bit too skinny. We met with his dietician and found he was WAY too skinny, having lost weight he was not supposed to lose. It ended up that he had a growth spurt in height and not in weight. And so we begin the catch-up game with height and weight for Max. We pumped him full of calories all through February, and it paid off. He gained almost 5 pounds in a month! But, he also shot up from the 75% in height to the 95%. Come on, kid! So, the plan is to keep on feeding our growing boy until he stops growing so quickly. We'll still feed him at that point...just hopefully not as much! He's 59 pounds now, and 4'9". My aching back could have told you that he's grown! I think I'm going to have to listen to that husband of mine and start lifting weights to keep up!
It was a good visit all around. We got a lot accomplished, like we always do in those appointments. Max's doctors have a way of making us feel like he's the only kid they're seeing on a given day. They stop and listen, and help problem solve. It's really a great team we've got. There was even a student doctor in the room today. At one point when I was telling him all the different doctors Max sees at Children's, Dr. P. said "he sees all the heads of departments." We laughed, but it's pretty true. Max is a rare bird, and tends to get the top doctors in every department following him. But, with that, means those doctors are also professors and have students learning from them. One of his doctors once told us that it was a great service we as a family provided to these new doctors by allowing them to meet us and Max. They always ask if it's okay for the students to come into our visits, and we say yes. It's unlikely when they move on to other practices, that they'll ever see another kid with Max's set of rare disorders, and they learn a lot in those meetings. That's all part of going to a teaching hospital. Now, when we're inpatient, and the stakes are a little higher, we tend to ask the students to take a step back and learn from observation. But, in the clinic setting, it's fine for us to be a part of the teaching element of the hospital.
The rest of the week will be a lot more relaxing, enjoying Spring Break! Max will probably watch a few more movies. And we'll try to soak up some sunshine, since we've been getting so much snow recently. It's so good to take a break and just unwind from our busy schedule for a while!
Your eye visit sounds like a real nightmare -- not the actual appointment but the getting there and back! I think those things are what's the most grueling about our children -- the whole logistics of it all. I'm glad that Max is doing well in all areas -- he sure looks healthy and happy in all the photos that you post!
It was crazy! I had to laugh at the absurdity of it all...just so the dr can fill out paperwork so he can continue to get his seizure meds.
Not sure if you realize it but you can refuse the eye exams. Our sons been taking Vigabatrin for 4.5 years. We've tried to wean him twice and both times his spasms returned. They wanted to sedate him for ERG's and I said no way. He gets sedation enough as it is and we can't get him off the med even if it is damaging his peripheral vision. His neurologist agreed and filled out some paper work stating that he wouldn't be monitored. He still sees opthamology yearly as he has other vision issues but I'm glad to pass on the every 90 days business.
Thanks for that info Laura! I thought we could only refuse the ERG's. His eye doc did say that they are nearly to the point of doing away with the monitoring , so maybe we won't have too many more. Max's metabolic disease can cause eye damage as it is, so we go to see him every 6 months. It will be nice to just get the medicine without all the hoops though!
Post a Comment