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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:
Tom's adventure continues...

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.
I am so glad that we already had children. Even a healthy baby comes with surprises and complete confusion, so at least we had some idea how to spot problems that were unusual - or Tom-specific.

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!
After a week or so a friend bought the baby a preemie outfit so we finally had something to put him in that didn't float on his little body. We had not anticipated Tommy as being so small, so most of the clothes we bought in advance were 12 month and 18 month sizes. I don't know how sizes range in other countries - but our oldest boy had been wearing 12 month sized clothes by three months of age, so we had anticipated these clothes as being used a LONG time ago. As I write this, Tom is 18 months old and has grown into about half of the clothing we bought for him two years ago.

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.
So despite Tom being the third of three boys - we still had to go out and provide him with a whole new wardrobe.

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 went home, called my own Doc and asked for a weeks worth of Valium and I mourned my son. Fortunately, I came out of this funk just as much in love with Tom as I had ever been.

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 normal diet.
Tom did test negative but he still is unable to eat any dairy or gluten products. I fed him a meal with a small amount of rice cereal yesterday (at 18 months) and Tom seemed to be able to digest it with little discomfort and no diarrhea - so he just may be out of the woods with this particular problem (knock on wood)!

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).
CCS also referred Tommy to a program called Sojourn.

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.
Sojourn also provides other services. A speech therapist comes to our home twice a month, working with Tom - and also instructing me on what I need to do to help him to gain new skills. Our boy also happens to be quite fond of his speech therapist which pleases us all to no end.
Respite care is also offered through this service. These folks will send out a person to babysit for 24 hours a month (not consecutively LOL). Now if your child requires an RN, that's what you get. The people at Sojourn do not go by medical records alone, they ask for a specific description of your child's needs from the parent (me)! Bottom line: You decide the care your child needs.

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.