Long Time, No Action :)

We've just been plugging away here! Mac has been busy working hard at therapy, and we have a bunch of appointments coming up!

Last week, we had an evaluation done to see if Mac would benefit from a cranial molding helmet, to make his head shape more normal. Basically, if Mac didn't have hydrocephalus and wasn't shunted, he would benefit from a helmet for sure. However, hydrocephalus is one of the contraindications in treating with a helmet, so we are proceeding very cautiously. Because having even one shunt makes it difficult to fit a helmet correctly, and Mac has two, we are unsure if it would even work. And, because Mac has such a complex history, the orthotist is unsure about monkeying with his melon...which I understand and appreciate! So, we already talked with the ophthalmologist, and will also be having a discussion with our pediatrician and neurosurgeon before deciding what to do. In the scheme of things, we absolutely realize that the shape of Mac's head really isn't a huge issue. However, we feel like he will have so many other things in his life that will make him "different" that we will fight to make as many things as "normal" as possible for him that we can. The question just remains if this is something that is worth the risk to fix.

Mac also had an appointment with the ophthalmologist last week. I have been anxiously awaiting this appointment, and am so glad to have some answers! We have noticed something "off" with Mac's eyes for a long while, but it was fairly subtle (like most eye issues are), and so I was nervous that we were just going to get another wait and see, and no real help. I have felt for quite awhile that Mac's eyesight could be hindering a lot of his progress, and so wait and see really wasn't something I wanted to hear. Luckily, she had some great answers for us. Mac has "gaze palsy" in his left eye. Basically, the nerve that controls the muscle that pulls the eye out (towards his ear) was damaged along the way. So, he is unable to control the movement of that eye very well, it drifts in towards his nose quite often, and twitches a lot. He doesn't track much to that side at all. So, right now we are patching his good eye (to encourage him to use his bad eye) for an hour and a half a day, and will see her again in 3 months. This will be a long term issue...nerve damage is never a quick fix! She did say that his vision seems to be acceptable (we will know more when she dilates his eyes at his next appointment), but that its all more than likely coming from his right eye, that he just really isn't doing much with his bad (left) eye at all. We are SO relieved to be doing something to help him with this, but also sad that its one more thing stacked against him. Vision is such a key issue in normal development, and what with the brain damage and all, he really didn't need anything else to trip him up ;)

Therapy-wise, Mac has made some great progress :) He is holding his head up more often now, and has been playing with his toes :) We've started feeding him baby cereal (which isn't going super well, but that's okay...some of our other kids took a while to take off on solids, too). He got a fancy new chair called a Tumble Form chair (see below), to help his head and trunk control, and a Rifton table (which I can't seem to find a picture of) to put in front of it to help encourage him to grab at toys. We also started doing some exercises on Miles' hippity hop (rather than a yoga ball, because it was just too huge for our tiny guy!), which are fun for me...Mac isn't too sure though :) Basically, our entire living room has been overtaken by Mac's gear, and we love it! We are SO grateful for Mac's therapist. He has three people who see him on a regular basis, and they are all just wonderful with Mac, the other kids, and us. They are the ones who always have answers for things that come up on a daily basis, they have tons of creative ideas for having fun with him. They, and our pediatrician, do such a wonderful job of seeing Mac as a baby with special needs, instead of just a special needs baby....they really KNOW him....and as a mom, who doesn't want their child's sweet little self to be known?





Next week is just as busy for Mac as last week was! On top of the usual, he has a follow up with Dr. Gruber, a full hearing screen, and an appointment with the pediatrician!