Bubble Boys Update

Since the last bubble boys post, we've had a few more appointments and actually have some answers and some PLANS!!! All 4 boys went to the Allergy/Asthma specialist. Bubba had the least amount of allergies, just milk. The doctor decided that since he shows no outward signs of being allergic to the milk, I don't need to take it out of his diet! Actually, none of the boys need changes to their diets! We did agree to do allergy shots for Kaelam, Tiny and Ryker and those should start in another week or so. They will each get their shot once every 3/4 weeks for about 6 months. At the end of the 6 months, we will talk about whether we think the shots have made a big enough change to continue them. If not, we will stop the shots and talk about other possible treatments. Kaelam went back to the eye doctor about 2 weeks ago and had such a great check up that we now only have to go back 1x a year! He will need glasses at some point in his life but considering that almost everyone on both sides of the family wear either glasses or contacts, I doubt he will be the only one. He also SHOULDN'T need another eye surgery until he is about 13 or 14. I realized that I forgot to add something to Tiny's medical history in the last Bubble Boys post... About 18 months ago we were told we needed to take Tiny to see a pediatric geneticist due to his size, or lack there of. The pediatrician thought that Tiny may have a rare form or dwarfism called RSS due to his small size, the fact that he has almost no subcutaneous fat on his body, his forehead being large and then his face dropping to a really small, narrow point and his mouth being really small. So we took him in. They ruled out the RSS and said that they didn't want to run a bunch of invasive tests on him until it was absolutely necessary. They did ask us to get a bone scan done. A bone scan is a fancy way of saying an xray of the left arm that they use to compare to xrays of other children. Some his age and some younger. They use it to see if his bones look like the bones of someone his age. We went back to the geneticist for our scheduled follow up. They are still waiting on the official results of the bone scan but they think his bones are the size of a 2 year old, meaning that he is going to be a late bloomer and may always be pretty small. His growth has stayed consistent, even if it's only in the 25th percentile. As of right now, they don't need to see us back unless he starts falling behind developmentally. So we are ALMOST done with the majority of our specialists!!! Ryker has a BIG appt. coming up in August but I will write about that one at another time.