Yummy!

Here is a couple of pictures of Rileigh enjoying a popsicle. I think I have created a monster because when I took it away from her, she started crying and stomping her feet. Temper, temper!

Genetics Appointment

We went to visit Rileigh's Great Grandma on Monday and had breakfast with her. We had a nice visit and Rileigh had a good time playing. She even spent a little time talking with her dad while we were there.

Today we had the appointment with the genetics doctor. We did find out that Rileigh has Oculocutaneous Albinism, meaning it effects both her vision and her skin and hair. The doctor was very nice and informative. We received a lot of information today and it is a whole lot to process. We had blood work done on Rileigh today to see if she has Hermansky-Pudlak Syndrome, which is another form of Albinism. With her reflux problems, digestive problems and her "strawberry" patch on her back, the doctor thought we should check for this. Rileigh will also be having an ultrasound of her belly tomorrow, and I have to set up a hearing test and echocardiogram for her. Apparently the lack of pigmentation in the body can lead to hearing problems as well. The echo is being done mostly because of my heart problems and the doctor wants to make sure Rileigh does not have any of the same issues. The last thing we found out today is that Rileigh's soft spot on her head is closing up early. She also has ridges in the front of her head which could mean her skull is closing up faster than it is supposed to, which will lead to her brain not being able to grow. We had a complete bone scan done on her today and we should have results in 4-6 weeks on this and the blood test. If the scans show that her skull is beginning to close, we will then have to go see a cranial doctor for further testing and evaluation. I just pray this isn't the case and there is nothing to worry about. We were at the doctor for about 3 hours and Rileigh did very well. She was pitiful when they had to draw her blood. Unfortunately she has inherited her mother's rolling veins! The xray session went okay. She did well at first, but after about the third one, she was over it. When we got home, I gave her some popsicle and she was a happy little girl!

Finally!

Well, it's been a super long time since I last posted anything. I promise that I will try to do better at staying on top of things. Not too much is new in our lives. I got a promotion at work, which is a big plus. I am now a supervisor which is a goal I have been working very hard at accomplishing over the last couple years. Rob has been doing a lot of traveling for work to go to different schools. It's crappy that he has to be gone, but it's nice because it will help him out when he gets out of the Navy!

Rileigh is growing so quickly! When we had her four month check up she was 15lbs 8oz and 25 1/4 inches long. She did very well with her shots this time too. She ran a little fever the next day, but it was nothing too bad. I had her at the doctor this past Friday and she was up to 16lbs 14oz! She started solids about a month ago and she loves her food. I think her weight shows that. :-) As you can see, she is starting to sit up on her own some. It is only for a minute or so, but it's a start. She is also standing some when she can hold onto something. Rileigh has been also on the move. She is rolling to get where ever she wants to go. She is also starting to crawl backwards. There is no more leaving her unattended...not even for a second. I swear she changes overnight!

We finally get to go see the genetics doctor on May 29th. I am really anxious to find out about what type of Albinism Rileigh has. The good news is that she has shown some huge improvements in her vision. Her eyes don't move nearly as much and she has started focusing on things. If you hold her bottle in front of her, she grabs it and brings it to her mouth. We go back to the Ophthalmologist on June 11, so it will be interesting to get his perspective on her eye sight. I am pretty sure she will still need to get glasses, but I am so thankful that she is doing better.