This week has been a week full of holiday fun as well as doctor visits and serious happenings for friends. First of all, let me say that my friend, Kayla had major heart surgery on a large hole in the center of her heart (called an AVSD defect) on Friday, the 29th. SHE DID FANTASTIC!!! I’m so happy to report that she is doing really, really well and is expected to be able to go home within one week of the surgery!
We also had Halloween. Mommy is happy to report we had a 600% increase in kids…that means we are actually starting to have a neighborhood and she’s very excited about this! See my earlier post for pictures of my Halloween cuteness!
I wore handmade boots this week. Mommy is a HUGE fan of boots (for both her and me)! My cousin, Leia made these FANTASTIC boots, that were Mommy’s “Good Luck Boots” while she was trying to get pregnant with me. Well…they worked…HERE I AM!!! J Here’s a picture of me wearing the boots…
This week, I got to visit two different doctors. On Saturday, Mommy and Daddy decided that enough was enough. I hadn’t had a BM in 8 days and they had tried everything (juices, fruits, prunes…) and no luck. To say I was miserable may be a small understatement. I stopped sleeping through the night. I started whining a lot after eating, my reflux was working overtime and, really, I was just MISERABLE. So, off to the doctor we went. He examined me and pronounced me…NORMAL! (Despite my crazy parents ;)) He suggested we try a tsp. of Miralax in my next bottle. That’s what Mommy used when she was in this unfortunate situation during her pregnancy with me. Well, I’m pleased to let you know that IT WORKED! No less than 3 hours later, I had a moment…a BIG moment…that Mom says may be an “old man smelling-poo”…but it definitely made me feel better! I have been able to go every day since then, even without more Miralax. But the bottom line is that it got the pipes working!
The other doctor I saw this week was Dr. Weiss at Seattle Children’s Hospital. He’s an opthamologist who specializes in lots of eye conditions. I went to see him because of my “eye jumping”, better known as nystagmus. Basically, this is a condition where my eyes “wiggle” horizontally when I’m trying to focus on things. Dr. Weiss looked at my eyes and determined that he needed to figure out how my “wiggling” occurs. He put me in my Mom’s arms and spun us around on a stool 7 times so we were moving at a constant velocity, then watched my eyes. He determined my nystagmus is most likely a result of vestibular disease, which means I may have some inner ear/balancing issues. SO…we’re going to do another study called a “movement study” in December, which will validate his findings and give a little more information. My nystagmus is not “curable”…it’s not really a curable condition. Dr. Weiss says that it should not affect my vision, but we’ll have to keep an eye on it. I compensate for it by tilting my head and focusing around things, so Mommy and Ms. Colleen will have to work to help me there. The thing Dr. Weiss is more worried about is the fact that my right eye “leaks” fluid constantly. It has since I was born. He says I have a blocked tear duct, and says that it’s common in kids with DS to have problems with this due to our larger mucous membranes than our “typical” peers. He says that 80% of the time, this will require surgery – either the insertion of tear duct tubes, or the insertion of these tubes associated with further mucosa reduction to prevent further issues. Because I’m so young, I will have to be re-evaluated for this when I’m closer to 1 year old. Then he’ll determine if surgery will be needed. The dr. is doing studies in BOTH nystagmus and tear duct blockage in kids with DS right now, so I will be a part of his studies, which should help other kids and parents in my situation in the future.
In addition to seeing the doctors this week, I also got to spend some time w/ my OT, Ms. Colleen. She continues to be impressed with how far I am able to improve every week. My sitting unsupported has improved dramatically and we are working on it every day. A lot of my improvements have to do with Ms. Audrey and my other teachers. They are so good for me! Ms. Colleen showed us exercises we can use to help me transition from laying down to sitting and vice versa. Though I’m not sitting unsupported yet, I’m well on my way there. Ms. Audrey has even ordered a special “sitting pillow” for me that will help me continue to grow in this area. Mommy and Daddy have said that they think I’m the luckiest girl to have my teachers and therapists working together to help me on my way. I think they are right!
We are going to HAWAII and I will get my first taste of sand and sea! Mommy and Daddy hope I like it. Our journal entry will be a bit delayed next week, since we’ll be gone…but I expect it will be filled with all kinds of fun facts about our trip…see you then!