Possible growth hormone injections…Finding the right answers in the grey area

Hi everyone! Well, Gavy is up to 14 lbs which is a bit alarming and has hit a stand still on his growth(they’re talking growth hormone, daily injection-ugh, I hate needles!). He’s fallen off the growth chart, which for lack of better words, sucks. We have had a lot of stuff going on lately and it all seems so overwhelming. We met with UW Health in Madison because they are in the top 20% in the nation for transplant and have one of the best surgeons in the nation there, and they suggest putting a feeding tube in. I know its vain, but right now without the external signs, its easy to convince myself that he is fine. Even the dialysis and medicine seem normal now, but the feeding tube reminds me of the dark days in the NICU when we didn’t know if he would survive. Which, I guess we still don’t really know for sure, but its a lot easier to pretend normal right now. Its a short term solution to get us to our ultimate goal, since dialysis isn’t making him better, its just sustaining him, we need to weigh all the options, and do whats best for him. This has been even more difficult since Children’s dr’s are giving a different opinion. I just wish the there were right answers, or promises. You do this and you get this…its just hard trying to figure out whats best when there is so much grey area.

Anyway, enough with the medical stuff…since Gavs is a little top heavy with little legs, he still isn’t bearing a whole lot of weight on them now, but he can finally touch the exersaucer floor (we call the exersaucer his “office”) so hes in there when I’m pumping (or pumparamadingadong like Lauren likes to call it) and is diggin the mirror action (who wouldn’t if you were that cute) He is doing well with his head holding and is working hard on rolling, but has a hard time thanks to his stoma diaper. He is liking sitting down and is just starting to tripod a little but is a little wobbly still.

Thats about it for now, I’m sorry this isn’t updated that often, but its hard to find time, but please sign his guest book, its nice to see who visits my son, who thinks of them, I know that we don’t get out much to see our friends and family, but we think of you often, and its comforting to read the notes to him. Plus, we can print this out give it to him when he gets bigger. Stranger or friend, all words, all the support, means the world! Hopes this finds you well! G’night, Jill

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