Begin at the beginning Part 1
As promised, here is the first of a series of postings on our experiences in helping my son with his hypotonia.
From the beginning of IT Boy’s life, it always seemed like there was some new crisis looming but never occurring. He was born in early September 2007 weighing in at 9lbs 11 oz and seemed to be perfect, albeit the size of a small turkey. He was placed in the neo-natal intensive care unit (NICU) at birth at birth, because he had some suspect bruising, a low grade fever and unfortunately, misplaced test results from me that would have answered some questions. I had gestational diabetes during my pregnancy, so we were prepared for the idea that he might have to be admitted there, but nothing that was happening seemed to be a result of the diabetes. He was born around 2pm, and I got to hold him around 4pm, but it wasn’t until after midnight that he was able to come into my room. We spent most of the night worried about what was happening to him in there, playing a waiting game in my room. What we didn’t know was that another child had been born with a serious heart defect and they were trying to stabilize her before airlifting her to a hospital in NYC. We thanked our lucky stars that we were not dealing with something so serious and maintained our patience as we waited to hold our son.
When we did see him, he looked bloated to within an inch of his little life, like a Jabba the Baby Hut. He spend his entire hospital stay in NICU, receiving antibiotics and the occasional treatment for hypoglycemia. There’s a picture of the two of us together that a friend framed for me. It shows me holding him and us looking at each other. He’s huge, with little squinty eyes and has his right arm wrapped up and immobilized in a brace to facilitate intravenous treatments. It’s like he’s showing it to me and telling me everything that he’s been through. “Hey mom, look what they did to me! Boy that nurse Kathy is cute!” I treasure that picture, because you can see the two of us falling in love for the first time.
After he was released from the hospital, we got a report of all the activities that had gone on during the stay. We were fully conscious about what was happening but it was interesting to see it in a progression path, as it were. It was as if something looked like it could have been something, so they did this, but then something else came up, so they added another treatment, but in the end, it amounted to little and we had a perfectly healthy little boy.
Over time, he had trouble gaining weight. Part of that was I wasn’t able to give him all the nutrition he needed by nursing, and eventually had to supplement to put the calories into him. Boy lost more than the recommended weight, and his pediatrician always said he felt (insert word of choice here) light, not sturdy, not meaty, and floppy.
It’s the last one that came to haunt us as time went on. Even when Boy started gaining weight, he had a floppy quality to him. The first sign of what was to be called hypotonia was when he had trouble meeting the milestone for holding his head up. All along, the pediatrician said that if he didn’t get stronger soon, she would recommend us getting him evaluated through early intervention. It wasn’t until we saw another older doctor in the practice (because his regular doctor was out and Boy had a fever that needed to be treated) that his concern over Boy’s “low tone” spurred us into action.
That’s not to say that his main doctor didn’t make us act. We seemed to be going in a path where even though he wasn’t doing things on time, there didn’t seem to be a need for action. But after this doctor said it, we decided the time was right to seek outside help.