Zachary’s energy level is getting amazing! He is all over the place. Two days ago physical therapy was here. Today, he is climbing up on the furniture. Zachary’s mickey button keeps popping out. This is the button on his tummy to attach his feeding tube. It has a balloon that goes into his tummy, then is inflated with water. We are working on doing bowless feeds every hour. We inject the formula straight in, and then he can be disconnected from his pump. A nutritionist is coming out tomorrow with a more concentrated formula, which is easy to digest. He is dragging his bag everywhere and every two minutes it goes off and has to be re-ran. Kiley is continuing to struggle with all of his attention and new success. A specialist from the school district came out to work with her again. We are having her come once a week and are trying to get more help to get her through these times of transition. She is such a smart and sweet girl, but is still having trouble with everything going on. Stacey and I have discovered mold in the downstairs bathroom. We are having a mold specialist come check it out. We can’t really afford any respiratory problems. Never a dull moment !

We have been very busy this last couple weeks. About a week ago Zachary’s PNT tube that goes into the kidney from outside started to get infected again. This tube was not being used it was capped off and connected to a internal one. A back-up in case the internal one wasn’t working out. They decided to pull the tube on Tuesday. On our way home Zachary screamed himself to sleep. They used no sedation so we thought he may be a little sore. We stopped by my parents, long enough to look at the heater on the truck(good thing to have in the winter) and eat supper. He woke up and was crying and could not be consoled. We phoned the doctors and they said bring him in. We headed back up to the hospital. They did an ultrasound that showed fluid in his tummy. They decided to admit him for further testing and monitoring. That night he spiked a fever, which indicated that there is an infection. They attempted to put a Foley catheter into his bladder which failed. Long night for all of us. The next morning he had a renal(kidney) scan to look for any leaks. He had to lay flat on a table for 42 minutes We lucked out he fell asleep after about 5 minutes and woke with one minute remaing. Everything came back fine , what a relief. The Doctors think that the exta fluid in his tummy is from the 8 surgeries and procedures that Zach has had in the last two months. Its hard on these little guys. To make a long story short we are finally home. Zachary is still hooked up to his IV antibiotics 3 times a day along with his 12 medications daily. He still has his feeding tube which they replaced with larger one. It popped out three times, because he has had it for so long. Zach is trying really hard to eat. With all that has gone on Zach is still smiling,talking and crawling all over the place. He is also pulling himself up on furniture.

Wade

Yes, Zachary has figured out the whole crawling thing. He is everywhere and trying to get into everything. I installed our gate above the stairs yesterday. Today I think drawer latches is a must. He has already pinched his fingers a couple of times. We are not sure if he has a cold or is cutting new teeth. He has had a runny nose, no fever, and has bit Stacey’s shoulder several times! Zachary has 2 IV antibiotics we hook him up to 3 times a day. These are to help with the infection he got in his kidney. I think we have 10 more days until that is done. So besides his sore bottom( result of chronic diarrhea from Iv meds) he is doing pretty awesome! He is continuing to grow hairier from the anti-rejection meds. Zachary the little cave Baby!

Wade