Noah’s Arc

We weren’t supposed to see Dr. Williamson for another 2 weeks, but they had an opening for Friday, so we shuffled several things around to make the appointment earlier. Visits with Dr. Williamson are always a little depressing for me. He puts Noah through a series of tests designed to evaluate where he is developmentally - they’re all disguised as play, but we all know it’s a test. And it’s not like we don’t know Noah is delayed. It’s just quantifying how delayed that I don’t like.

We’ll have to wait until we get his official report to see exactly how much progress Noah has made, but the good news is that he has gains in all areas. In some, he’s measuring at the level of a 15 month old - not bad considering he’s 19 months corrected. Gross motor development still lags behind dramatically, though. Because of the way this is measured, Noah is going to be at roughly the 8 month level, but there is some good news in there. He doesn’t do things typically 8 month olds can do - he doesn’t get himself to a sitting position, or crawl on all fours, or make transitions that an 8 month old can make. But he can sit for an indefinite period of time once you get him in position, he pulls himself to a standing position, he walks if you hold his fingers (and will walk all over creation) and walks behind his toys as he pushes them. Those are all gross motor skills that are typical of older children (I don’t know the exact range). So, it’s good and bad. There are hurdles he hasn’t been able to get past, but he’s also skipping them and moving onto more advanced behavior. The silver lining, I guess.

Dr. Williamson discussed Noah’s overall diagnosis with us, too. We’ve never had an official diagnosis of anything to my knowledge. It’s one of the things that concerns Sami and me a little - we have a ton of specialists, but I’m not sure who has overarching responsibility - who is “in charge” of Noah’s care. It may be us, which is fine, but it’s not really our area of expertise. The neurologist, Dr. Rivera, has a diagnosis of “hypertonia” on Noah’s referral to PM&R (Physical Medicine & Rehabilitation), which we see in late March, but that’s the closest we’ve come.

Hypertonia means increased tightness of muscle tone - it’s why Noah’s legs and ankles are stiff, and why he tightens up his arms and other body parts. There’s no “cure,” but it can be treated and overcome with a lot of PT and OT, as well as possible use of muscle relaxant medication (Botox is the one we’ve heard about lately, although another medication was mentioned; I’ve just forgotten the name). For more information on hypertonia, see http://www.ninds.nih.gov/disorders/hypertonia/hypertonia.htm.

Dr. Williamson gave us a few new words as a diagnosis for Noah, and, I must admit, they weren’t words we liked to hear. The specific diagnosis he gave was “spastic diplegia” which is a form of cerebral palsy. It’s actually that second term that freaked us out moreso than the first. Saying someone has CP has come to mean something very specific to most people, Sami and me included, and it was scary. As it turns out, CP is an umbrella term for a group of chronic conditions that affect body movement and muscle coordination; spastic diplegia is the most common form of CP.

Spastic diplegia refers to muscle issues (spastic) in both legs (diplegia), which Noah definitely has. The symptoms include increased muscle tone (definitely Noah) and scissoring when walking (also Noah). The sooner the diagnosis is made and therapy begins, the better. We’re lucky in this area - Noah’s been in physical therapy for well over a year, and has been in OT for over 6 months. We also now understand why they’ve been very concerned about the size of Noah’s head - small heads often occur with CP. They also often occur when Daddy has a small head, which seems to be more of the situation here. For more information, see http://www.cerebralpalsysource.com/Types_of_CP/spastic_diplegia/index.html or http://en.wikipedia.org/wiki/Cerebral_palsy.

We’re still a little freaked out by this, but it’s getting better. No one ever wants to hear their child has anything at all wrong with him or her, much less to receive a diagnosis that packs such an emotional wallop for most people. But it hasn’t changed anything about Noah. He’s still the most awesome little boy we could ever hope to have. We already knew he had a long road ahead of him. Now we just know what to call the thing that set us on that path.