Tom comes home to stay
As Tom is home for good (hopefully) this page is bound to grow with time. Links to the page(s) that are to follow this topic are listed here:
We brought our son home - along with a bradicardia and apnea monitor,
several G-tubes and tons of equipment, several medications, and a large list of directions.
Tom was a quiet agreeable baby right from the start. He seemed interested in his surroundings - and it took a few days for him to adjust to the insanity of home after the quiet regularity of the hospital. His brothers (two and five years old) were so glad to have him home. They had both been quite curious about Tommy but had not had a chance to spend any time with him.
Our first real problem with bringing Tommy home was his wardrobe.
Our first two boys had weighed in at 9lbs 8oz, and 8 lbs 14oz at birth.
Tom was quite a bit smaller at 5lbs 6 oz and nothing we had would fit him!
Another problem we ran into was the boy's growth. Tom does very little
of that. When we had shopped for the older kids - we always chose inexpensive
clothing because the boys outgrew everything before they had a chance of wearing it out.
Of course Tom had to be different. I never saw a growth spurt or any change in diet
whatsoever. He just seems to creep from one size to another. The real problem
being that he is in one size for at least six months. This means that everything we buy
has to be industrial strength. Another problem I quickly discovered is that to feed an infant
with a G-tube you need something that opens easily exposing the mid-section.
The baby slowly became more healthy. After about a month at home we were able to drop the medications. Tom required soy formula, and at first we had trouble finding the right one for him. He would be fine for a week or so, and then would get diarrhea. We tried waiting it out, but he just became more and more ill. I think we tried five different formulas before using Pro-So-Bee. This last formula has never caused an irritation. After I had the right formula Tommy began to put on weight.
We noticed differences quickly. I really became aware of a cognitive difference at about 10 weeks. Tom had not yet learned to smile. We knew this was behind schedule but as Tom's start had been so difficult we attributed this to his slow development. I started to put a greater effort into teaching Tom to smile and I noticed the oddest thing. When he was sleeping or very near sleep he was able to smile with no difficulty. If he was awake, Tom would stare at me intently - sometimes seeming to quiver with intent but he simply could not smile. At three months, the connection was made and he was finally able to smile - though his sweet grins came more easily at home in a relaxed situation. It took a few more months before he began smiling happily at everyone around him.
Tom's three-month physical was unremarkable. His pediatrician had some concerns but shared our optimism; that the baby would improve with more time at home and with improved weight gain. Despite the fact that we had a pile of books on child development, and completely ignoring our two older children's progress we were in for a shock at Tom's six month check up.
Our family pediatrician was very concerned to see that Tom could not hold his head up and was in no way sitting. It was apparent that Tom was a very happy fellow, and was quite observant of his surroundings - but in no way did he resemble a normal six month old infant.
Our son's pediatrician immediately referred Tom to a neurologist, a geneticist, a gastroenterologist, and local therapy groups.
We saw the neurologist first. Tom was tested for several medical conditions. After listening to a lot of medical jargon I asked point blank what he thought was wrong. The Doctor explained that he thought Tom was severely retarded, had low muscle tone, and might be a dwarf, but exclaimed over Tom's cheerful demeanor.
Well, I had been ignoring any possibility that Tom's condition was really
serious until that appointment, and it was a complete shock.
I lot of ideas and plans went by the wayside - but I learned a lot about acceptance - found out I wasn't nearly as cool as I had always assumed I'd been and corrected the problem. I am a much happier person for it.
We next saw a gastroenterologist. Tom had shown severe allergies to rice
cereal, and our pediatrician was concerned the boy might have celiac disease.
People with celiac disease are unable to eat gluten - all flower products including rice.
Initially, the idea that Tom couldn't eat gluten products wasn't a big deal.
After a bit of thought we realized that gluten products are in darn near everything!
From gravy, rice, cookies, noodles, bread - it really removes over 50% of the
Tom was also recommended to a program called CCS. These folks offer physical therapy
and testing to determine the abilities of the children under their services free of cost - and
can also help with medical expenses if need be. We didn't require financial aid
(due to a lovely insurance policy Tom's dad carries through his work) but they
quickly ascertained that Tom did need physical therapy. Tom was set up to meet with
two different types of therapists at their
facilities three days a week for 30 minute sessions (thank heavens they are
not too far away).
Sojourn offered even more services for Tom and our family as well. The baby
was provided with in home therapy twice a week (they refer to as intervention).
This service has become invaluable to us. Tom does not like being forced to do things
he is not ready to do - and has thus far responded negatively to the CCS half-hour
program. Our Sojourn provider is able to spend several hours one on one
with Tom during each session in our home. CCS has been able to help quite a bit -
but Tom's interventionist has really made wonderful progress. I am not sure if
this works so well because Tom is at home, because his worker is able to spend
more time with him, because he is not being pushed as hard, or if it's because
the interventionist adores Tom - and he loves her too; but I suspect it is a
combination of all of these facts. In any event - this service alone has made a
huge difference for our entire family.
Tom's next specialist was a geneticist. She had some ideas of what might be wrong and ordered a huge amount of blood tests - but not a single thing came up positive.
This tale continues here.