This week and next are jam-packed with appointments. Today we went to the neurosurgeon. When Lewis was in the hospital, they set his shunt to the lowest setting (0.5) in order to help his back to heal. Now that it's healed, Dr. Foody wants to start bumping up the setting. Next week we'll go back and get a baseline ultrasound of his head. Then he'll adjust the shunt to 1.0. A couple weeks after that, we'll get another ultrasound to see how he's tolerating the new settings. As long as his ventricles haven't increased in size too much, they'll probably bump it up to a 1.5. This is good news, I guess, because it means that his shunt is doing what it should and his back is healed enough to tolerate the higher pressure. But it's also nerve-wracking to be readjusting the shunt after he's been doing so well. Lewis's head circumference is in the 70th percentile... same as it was 6 weeks ago. He comes from a family of big heads, so he'll probably always have a big head!
While I was there, I asked Dr. Foody about Lewis's stridor. He wasn't aware that he had a stridor (it bothers me that this wasn't communicated in the hospital, but that's another story). Anyway, apparently swallowing can be an issue with Arnold Chiari. I told him that Lewis swallows fine, he's just loud when he eats and sleeps. Even so, Dr. Foody wants to do an MRI. He'll wait until Lewis is at least 16 weeks old because getting an MRI before 16 weeks would require Lewis to be admitted to the hospital... and we have had ENOUGH of that. I didn't really understand what they'll be looking for in the MRI but based on that, they may send him to an Ear, Nose, Throat Doctor to do a swallow study. I hope it doesn't come to that.
After that appointment, we had another appointment in Grand Rapids that was a lot more fun. We went to the Conductive Learning Center for Lewis's assessment. Lewis will be attending the Conductive Learning Center for therapy starting next week. This is very exciting for me because it is something proactive that I can do as a mom. For those of you that don't know, I'll explain a little bit about the CLC. Conductive Learning is a practice that comes from Hungary. There are only a handful of Conductive Learning places in this country and we have one in Grand Rapids (praise God!). It's kind of hard to explain and you can learn more about it here: http://conductivelearningcenter.org/ There are a few things that I really like about it. First of all, it feels very proactive instead of reactive. They talk about how there are a lot of nerves in Lewis's body that are weak and not firing strongly. They work to make use of EVERY nerve that Lewis has available. They also work on more than just getting him to walk. It's about helping him to reach his full potential. Since Lewis has a lot more movement in one leg, one of his legs is getting a little bigger than the other. They'll work with him so that when he's an adult there will only be a slight difference in his legs, as opposed to the very noticeable difference that would occur if we didn't work on it. They will work with Lewis on everything he needs to be independent, which is our ultimate goal. It's costly, but we've prayed about it, and I think it's right for Lewis, so we will find a way to make it work.
During the assessment, Lewis was smiling, laughing, and talking (loudly!). I hope he's in such a good mood every time we're there... yeah right. She said that although Lewis is only the size of a 10-week-old baby, he was interacting and playing like a 4-month-old. She also said that Lewis had good active movement in his legs. She said that she has no doubt that he'll be walking with a cane or walker. It's nice to hear that, but I try not to listen to the "This is what his ability will be" statements... good or bad. I don't think anyone can know what Lewis will achieve in his life. He may just surprise us all! And we'll do everything we can to make that happen. When I was pregnant with Lewis, all I could focus on was all the things that Lewis wouldn't be able to do. But I refuse to think that way anymore. Now I just focus on all the things Lewis can do. Which is a lot! And when he's older and he tells me he can't do something, I'll tell him to find a way. He's already had more experiences than people years older than him. He'll be a richer person for it.
The next couple weeks will bring many more appointments. Physical therapy, CLC, pediatrician, ultrasound, Dr. Foody, Orthopedics, Spina Bifida Clinic, oh and one for me too. Yuck!
So a few prayer requests we have right now:
Lewis's shunt as adjustments are made to it.
Lewis's stridor... that it would go away before they even have to do the MRI.
That the MRI would come back with good news.
That we would see improvements as Lewis starts therapy.
That we would have the financial ability to give Lewis the therapy he needs.
That Lewis would gain weight.
Our upcoming appointments.
I'll leave you with a few pictures from the weekend. Thanks to Kelli for stepping in and taking pictures of us when a disappointing change of plans left us with new outfits and no one to take pictures of us in them. I think they turned out great!
|Lewis and his cousin Rio... they weren't too happy about the picture-taking session. We didn't get a smile but we got some good faces!|