First of all----I apologize for not updating this page this month :)

We have had a very busy month.

Where to begin….let’s start with the positive!!
Zachary started to run! It isn’t a perfect run, it actually looks a little scary to watch, but it counts! He also is letting shaving cream touch his fingers without a total meltdown. He is working on putting together small puzzles. In addition he is starting to string two words together, and sometimes more.

The rest of the updates….

Dominic wanted to help Zachary out of bed one morning, and since he didn’t know how to “unhook” him he pulled his button out. The button was inflated and it is similar to pulling a grape through an opening the size of a straw. Needless to say Zach was in some pain, but I was able to put it right back in. However, two days later and a reduced amount of feeds going in we were back in the hospital. The doctors gave his feeds a rest and go through IV fluids. His body was shutting down—and it did very quickly. His blood pressure on Friday night was 41/16 and the bottom number was in the teens and twenties throughout the night. He also developed a heart murmur from being dehydrated. Yes, it can happen that quick one day without full feeds and then a fever burns up any hydration. It was a scary night and morning, but once he was re-dehydrated his blood pressure went up and his murmur went away. We were sent home on Sunday (8/30), and he is doing well.

He is still having seizures and they are at least twice a week. This week we will try a new combination of medication and see how he does.

Eating is NOT happening. He really isn’t interested in food AT ALL. He is starting to taste some items, but nothing that is substantial. He is enjoying veggie straws, applesauce, squishy baked beans, and bites of waffles. He can eat a few things on day and the next not eat anything. It is hard to deal with, but we just keep trying and hope that he will keep his oral motor skills working.

“Half Face” the doctors FINALLY think they have narrowed down his face “episodes” to Horner’s syndrome. Very interesting, but they want another MRI/CT sedated scan as soon as possible in order to rule out a tumor/abnormal brain growth which could be pressing on his nerve. However, the earliest appointment they have is November in San Francisco. I am trying to get something sooner since he is having more and more episodes and the last ones have caused him some pain and discomfort.

Other than that the other boys are doing great. Garrett and I talked about Zachary’s seizures and he has named them, “brain freezes!” Dominic is loving his school, and I think if it was up to him he would go full time. His speech was behind since he was hanging out only with Zachary, but in a few short months of three morning of pre-school he is right where he should be!

Thanks for all of your help! The thoughts, prayers, donations, meals, and babysitting come in handy with all of his therapy and our family needs. We couldn’t do it without everyone. Special thanks to Nana this month for helping out with the crazy hospital nights with the other two.