An Update and Upcoming Peoria Visit!

Well, I tried to post some pictures tonight and I keep getting an error message from blogger.com that says photo uploading is having some problems and their engineers are working on it! So, as soon as I'm able to post some current photos of Alayna I will!

The last time I posted I wrote how I was planning on taking Alayna into the doctor last Friday, Oct 12th to get her ears checked. I just kind of had a hunch that something was up and I wanted to make sure I didn't pass her on to the Kelting family sick. Well, she had another ear infection in the right ear this time. Unfortunately, this has been her 4th one in about 4 months. UGH! She wasn't even off of her last antibiotic a week and had another one. It went from the left ear to the right ear. So, we are taking another round of antibiotics and we go see Dr. Neptune on Monday afternoon. I'm going to push the idea of getting tubes. It seems like most kids with 1p36 have them and occasionally a new set or two may be necessary, but I think it's worth a try! I know she has little ears and little ear canals and she is extremely waxy, but I'm getting sick of visiting the doctor for ear infections and dosing out antibiotics. I would think that eventually she would become immune to the antibiotic.

We head to Peoria on Monday morning and meet with the plastic surgeon regarding her head. I'm very concerned about it's flatness. I've been doing some research on this and it is actually more common than you may think. Even with normal developing kids. There looks to be two options; a band or a helmet. I found a really good website on them and it displayed before and after pictures that were amazing. I really do think they work in a very short amount of time. I do have a few questions if Alayna does end up getting one. I'm wondering if it has to be worn all of the time. I also know that getting it to fit properly may require quite a few office visits to see if it is rubbing her head or irritating certain places on her head. I will know a lot more on Monday, so I'll post what we find out then.

I'm so excited about our 1p35 Yahoo.group trip to Jacksonville! We leave in less than two weeks. There are a definite 27 families coming and most are bringing their children with them. I'll admit that I'm a bit nervous too. The exchange of information will be priceless.

One other thing that I plan on mentioning to Alayna's pediatrician on Monday is that research has been done regarding 1p36 kids and immunizations. A family that is a member of the Yahoo site lost their little girl 3 years ago because of some problems with her immune system. The Children's Hospital in Philadelphia has been researching this since her death. They believe very strongly that there is something in the 1st chromosome that effects immunizations and with kids having a deletion, this important part has a possibility of being missing. Sometimes then these kids could have a lower immune system and child immunizations may not "take." Some of the other mothers have posted how they are really interested in this and there is a way of testing if immunizations are working or not. It's worth mentioning that's for sure.

A little change that has seemed to happen lately is that Alayna is waking up once in the middle of the night. She usually is just up for a short time, but the other night it turned into 1 1/2 hours! Ya, we were awake from 12:30 am - 2:00 am. I hadn't had to do this for awhile and I was sleepy the next day. Anyway, I never knew that the 10:00 pm news was on at 1:30 am! At least I got caught up on the latest news and weather with Terry Swails. That night I tried 5 things...a bottle (didn't want it), Tylenol, prevacid, did a nebulizer treatment, and baby orajel. She finally fell asleep in the bouncy seat and her and it went into the crib! Most of the time her pacifier and lighted mobile do the trick. Unfortunately for us, it sounds like restless sleep is somewhat common for kids with 1p36. Nobody knows exactly why, but maybe it's just the unawareness of time or their brain activity. I pray Alayna remains a decent sleeper because I know I love my sleep!

Alayna is growing and time is flying by so fast as it does with all little ones. She will be 9 months old on October 29th. I always say that she is such a blessing. Our family loves her so much. We have a new challenge to face on Monday, but we remain positive. I'm so thankful that there are such dedicated, intelligent, committed doctors out there. Alayna has brought out a strength in me that I didn't even realize I possessed. She's awesome....:)