When Baby J was born and when he was diagnosed with HD we were so scared. Scared that his HD would be worse than it is, scared that he would have other problems, and scared that he would not gain weight and grow as he should. Facing a rare disease, or really anything new is scary.
I am happy to report that we feel very blessed. Over the last 11 months we have watched Baby J learn and grow. He has hit his milestones within the prescribed time, though admittedly a little slower than his older siblings. Since being released from the hospital after his surgeries he hasn't had problems gaining weight. He is happy, he is healthy, he is a squishy chunk of baby.
We watch him grow and feel a mix of happy and sad. We want him to stay the squishy baby he is, but we are happy that he is doing so well. After he was diagnosed we started to look at stories from other kids with HD and found that many of them struggle with a myriad of issues including poor weight gain, lots of infections, lots of food allergies or intollerances, chronic constipation, and others. We feel so blessed that we haven't had to deal with many of these.
Yes, there are foods we avoid or haven't even tried to feed him in an effort to steer clear of some of these issues, and we are always on alert for others-- but it really is a miracle that Baby J is doing so great. He eats better than his brother, he sleeps well, he army crawls faster than some trained soldiers, and, of course, he poops well too. We celebrate every blow-out diaper, we relish each chubby roll of baby fat, and work for his bright smiles and contagious giggle. I have never met a child who loves the game Peek-a-Boo as much as he does and he hates "This Little Piggy," it makes him cry. He has taught us patience, perseverance, and the power of prayer and priesthood blessings. He is truly a gift to our family and we are grateful for him every day!
1 comment:
YAY!! But oh so sad about the piggies. Love all the pictures!
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