Friday, August 12, 2011
Before we left for vacation Caelyn had her appointment with genetics. They basically said what we hear all the time, "We are thinking about Caelyn and thinking about a diagnosis all the time." I came prepared with a list of about 10 possible diagnoses that might apply to Caelyn and they immediately ruled out 8 of the 10. They ran tests for 2 out of the 10. We should have the answers by the end of next week. They also referred her to a developmental pediatrician to get a full developmental assessment. Also, they said that she should apply to the NIH rare undiagnosed diseases program. I checked out the program and they are not accepting applications at this time. We will keep checking and apply when we can. They only take on about 50 cases a year, but we are hoping for the best!
It has been a pretty fun week for Caelyn. We have been on vacation in Oregon, OH visiting family. Caelyn got to do lots of fun things that she doesn't normally get to do. I am also fairly sure that she enjoyed having a week off without having to see any therapists or doctors. *Miss Susie, Miss Jen, and Miss Wendy....if your reading this, I'm SURE Caelyn missed you guys!* In the midst of all the fun, Caelyn did manage to cut a molar, but the poor kiddo is still in the process of cutting 5 teeth. Since she doesn't chew on anything they seem to take forever to come in!
So we have GREAT news! While driving earlier this week I received news from Caelyn's doctors that her surgery date is August 30th! She will be getting her tracheotomy removed on August 30th! We are so beyond excited! This is such a blessing! We can finally breathe a small sigh of relief as this will remove some of the weight of my husband and I's shoulders. We are not only excited for ourselves, but for Caelyn and the whole family. Caelyn will now be able to spend the night with family and spend time with other people along with her sister. She no longer has to have us tag along with her everywhere.
Caelyn had a lot of fun going shopping and getting lots of new clothes for school. She enjoyed all the extra attention she received and liked all the longs trips in the car and riding in the stroller all day.
Caelyn also got to go swimming. She loved every minute of it! She is such a water baby! I think it is so funny though because she screams throughout her whole shower, but loves the swimming pool and water parks! That is just like Caelyn though, she has her own mind and is very stubborn. Here she is in her new swimsuit.
While we were in the area, we took the time to get together with a good friend of mine, Amy Cook. Our girls are the same age and they loved playing together! She has her own photography business and she took pictures of our girls at the beach. Caelyn was pretty grumpy throughout the entire session because her teeth were really bothering her. She refused to stand in the water at all, but she loved sitting it and splashing in it. Amy did an amazing job with our pictures! Here is a sneak peek of our pictures, be sure to "Like" Amy Cook Photography and tell her we sent you!