Lucas James Stisher: Appointments, Therapy & More!

Here's a quick summary of some recent appointments and our trip to New York...

We saw the Ophthalmologist on March 8, everything is status quo and the plan is still to wait a couple years for surgery to cosmetically align the eyes. He felt that his eye behavior showed improvement, noting that his nystagmus (shaking of the eyes) almost stops completely when he looks to the left (his best visual field). He also said it appears his eyes are working more together when he's looking to the left. He feels that his visual field to the right and above are showing improvements from six months ago and hopes that the nystagmus he experiences when looking in these directions will deaden over time. He still feels that surgery right now carries too much risk of making him lose vision, and wants to let the brain keep figuring things out. Surgery for him will be purely cosmetic and will have no impact on helping him with vision, so we will wait another year to a few years before correcting it.

All of Lucas' blood tests came back normal (the mono test and the initial thyroid screening). This was good news, although expected, because Lucas started to behave normally with his sleep a couple days after we did all the bloodwork. So we assume we can chalk up his excessive sleep to brain overactivity. Our PT told me about a book that a woman wrote about her experience coming back from a stroke, and how she would literally work five minutes, then sleep two hours... due to all the brain activity and exhaustion. The pediatrician said he still wants us to see an Endocronologist for more in-depth testing on his pituitary function. He called one of the specialists at NIH (which is conveniently right across the street from us and he feels they are the best), he discussed Lucas' history and recent statistics and the doctor there wants to run some additional bloodwork to be sure, and also some genetic testing. Brain injuries have a common link to the normal pituitory gland behavior. So, add one doc more to the list!! Fingers crossed that everything comes back normal!

That gets all the medical updates out of the way... on to the bigger stuff. We went to New York last weekend for 6 sessions with Marcy again. It was a good trip, although nothing major to report. It was an extremely windy, rainy weekend, so the 3 block walk twice a day was not fun! Poor Lucas had to ride in a completely covered stroller as Bran and I ran through gusts of wind and rain. Fun!

The weekend brought about some concern to have me calling Dr. Nuzzo in NJ. Although Lucas' legs are remarkably better in the hips and hamstrings, he is having spasms in the hip extensors (the muscle in the front above the quads) and Marcy noted that he seemed to be hurting in certain positions. This is something I noticed prior to going to New York, but wasn't sure if it was still due to spasms or some old behavior in the nerves untouched by the surgery. When he is on his belly, they tighten up and he's almost in small triangle at his waist. All of this was probably there before, but since his entire lower half tensed up we couldn't see it.

I called the doctor and sent him several videos to watch. He didn't feel his behavior was a result of the surgery, but that getting rid of the spastic hamstrings and hip adductors has now revealed another underlying pattern of deep spasticity. He feels that his behavior is concerning, in that it mimicks what he sees in anoxic brain injuries and spine/neck cases, or could be a result of a spinal issue. He wants us to get an MRI of his spine right away to take a closer look and wants to rule out a tethered spine. However, there is an equal chance that the behavior is just a nasty pattern that we have to work through with therapy... but at least if we get an MRI, we'll know what we're dealing with. I'm working on scheduling the MRI now with his neurologist, so hopefully we'll know by next month.

Other than this little mystery, he's doing fantastic with his new legs! He is learning to stand for a few seconds with his quads the right way, and they are getting stronger every day. He's a long way from standing on his own or walking, but we're working on stregthening and new movements right now. He is sitting better and better, and this week we saw him turn to look behind him while sitting in a long leg sit (something he's never been able to do before). We still have a major issue with balance and getting him to catch himself with his left hand (he doesn't recognize to put it down to stop himself from falling) but we continue to work. Our therapists are still seeing great changes in him from week to week, using new muscles and moving in brand new ways. Some of these changes are subtle, so it could still take some time to see any major milestones... but we'll take any baby steps we can get!

My best friend visited us last weekend and she couldn't get over the changes in him since Christmas -- both physically and with his language. She said it was like holding another child the moment she picked him up. :-) So, I still feel like we made the right decision with this surgery.

Last note, his language is really taking off with better pronunciation and starting to put two words together and pronunciation. He's even started trying to sing, which is adorable beyond words. He sings part of the alphabet song, and it reminds me of Alfalfa from the Little Rascals as he tries to hit the notes... so cute! I hope I can capture it soon on video.

Walks twice a day in this windy, rainy mess in New York!