An Update fom Zoey: 18 Weeks
Hi friends,
Remember me? I’m a little over four months now. I am 22 ½ inches long and just over 10 pounds. I kept rolling into the side of the bassinet at night, so Mommy puts me in my big crib to sleep now. It’s fun because I have room to turn all the way around in circles. Mom usually finds me with my feet where my head had been the night before. Since my last update I have started laughing, holding my head up, sitting with help, trying to stand, sucking my fingers, and sleeping through the night. That last one is probably the most exciting for Daddy and Mommy. I slept nine hours last night!
The results of my second round of genetics testing showed that I have an extra copy of genetic material on a small part of my third chromosome (chromosome 3q27 trisomy). There aren’t any syndromes connected with this genetic addition, so we are not sure if that is the cause of some of my problems. Mom and Dad gave some blood to be tested last week while I was in the hospital. They are testing to see if either of them has either the same extra genetic material or another mutation that might have caused the third copy to form in me. Once again we are waiting for the test results. I’m glad I didn’t have to give blood this time.
I went to the hospital on August 8th to undergo what Dad and Mom are calling the “dry run surgery”. Since I don’t have a rectum, my pediatric surgeon was going to make one. Usually Dr. Oiticica can see the sphincter muscle contractions so that he knows where to cut, but he couldn’t find mine. He didn’t want to cut in the wrong place, so instead he just widened the irregular opening that I already have. Hopefully they will be able to try again during the big surgery early next year. (I’ll tell you more about the big surgery next time.) We found out that I am okay with anesthesia, although it makes me really sleepy for about a day afterward. I also didn’t start eating very much until a few days later. While I was at the hospital, the doctor cut a little strand that was tying my tongue down to my bottom gums. I’m now drinking 20 ounces of milk every day. I’m not sure if the cutting helped me to eat better, but it definitely didn’t hurt.
We had a follow-up appointment with Dr. Oiticica last Friday so that I could take an x-ray that shows where all my food goes. We also met with Dr. O afterward. He told us that I don’t have any stool back-ups, which means that everything comes out in my diaper alright. (Mommy could have told him that without an x ray.) He also told us that part of my large intestine is situated over my liver instead of under it. Eventually we may need to fix that, but we don’t have to worry about that right now. It was such a fun day. I got to see trees, big brick buildings, elevators, and lots of other kids on the pediatric floor. We are going back on Sept 7th so that Dr. O can insert a catheter through my fistula. He thinks that my rectum is deeper than normal and he wants to see how everything is situated as clearly as he can before attempting the surgery again.
The nutritionist says I need 24 ounces of fluid every day, so that is my next goal for this month. Dr. O said my fistula is dilated enough that I will be able to have pureed food when I’m ready for it. Mom is glad that I won’t have to wait to try out some watery foods. We will also meet with a group of specialists on August 27th, which will hopefully provide some new answers for us. It’s hard when Mommy and Daddy find out something new about me almost every week, and it’s hard for them not to have answers. Please pray that they don’t go crazy with so many doctors wanting to help. They all think I’m interesting because I’m different, but Mommy and Daddy keep trying to let me be a regular baby as much as they can. It’s not always easy. I’m most happy when I get to go outside, climb on Daddy, and cuddle with Mommy. Hopefully I can do that more this month.
Lots of love,
Zoey