At the first of August we went to visit Holly and the boys in Maryland. We had such a great time playing, eating and shopping! Look closely and you will see pictures from our day with three kids in IKEA!!
I started running in the spring with some girlfriends and I have found that I really love it! I ran my first 5K in August and was so pleased with my time of 26:41. I have set lofty goal of doing a half marathon in December!
(Which reminds me that I want to remind you to check out Addie's dad. Addie is an RTS sister of AnnaKate' s and Addie’s dad, is running the Milwaukee’s Lakefront Marathon 2009 to raise awareness about RTS. “26.2 miles of feet pounding pavement is a challenge, but the finish line is clear and concrete. When you get there, you are done. Families touched by Rubinstein-Taybi Syndrome have an endless course ahead of them, with no clear marker for when things might ease up. If not for the support of other families, there might not be any easing up at all.” Good luck to Michael, we are all cheering for you.)
Here are some pictures of the run and my great running buddies, the MRRC. The back of our shirts says "Run Teacher Run!"
You may remember that AnnaKate had her second sleep study last month. We went back to the doctor yesterday to discuss the results. She has significantly improved since her tonsillectomy- which is great! She is still having some sleep apnea difficulty but her biggest issue is hypoventillation. Basically she is not exhaling enough and her CO2 levels are getting too high. To help AnnaKate get better quality of sleep she will begin to use a CPAP at night. The process is very gradual. Today we got the machine and her mask. For the next few weeks we will spend time getting her used to the mask. The we will let her get used to feeling the pressure of the machine. We will go back for another sleep study on October 2 and they will monitor her as she uses the machine to sleep for the first time. This process is long and gradual so hopefully, AnnaKate will transition well to this strange apparatus. Today the home health nurse came to drop off the machine and try the mask on AnnaKate. We could not believe it but she actually wore the mask for about 15 minutes and it really did not seem to bother her. Let's keep our fingers crossed that she stays this laid back!!
I mean...really????? Isn't this ridiculous....
Our little "elephant girl"!!!
Sorry for not commenting on your blogs lately...I will be better!!
Have a super weekend!
Kelly
Billy and I married in 1998 after dating for 6 years. In 2006 we adopted AnnaKate. We were lucky enough to meet her birth mother and take her home from the hospital. At about 4 months old, AnnaKate was diagnosed with Rubinstein-Taybi Syndrome. Through all of AnnaKate's struggles and delays she surprises and delights us daily! Thanks for marking this spot and coming back often to check in on us.
11 comments:
I have been worried, but welcome back to blog world. The photo collages are nice. Love AK and I know she will adjust well to the CPAP.
I am so glad your back,I was just telling Charla that I missed not keeping up with Anna Kate!!
Good luck on the run..That's awesome. And I hope AK adjusts to the mask and all goes well. It's great to hear from you again.
Even though I talk to you on just about a daily basis, I have missed your blogs!! AK is a trooper(and so are YOU). She looks right at home with her CPAP mask. Love you all, so.
Cat
She is so sweet to keep that mask on. I hope she continues to wear it when she needs to.
I too am amazed that she tolerates the CPAP so well...but our kids continue to amaze us on so many levels.
Welcome back, and it's great to see you guys are doing so well after a much-needed break!
Kelly,
Glad that you are settling back into things. I'm so impressed that you are enjoying running so much. I honestly can only run if someone is chasing me and even then it is iffy.
I'm amazed that AK tolerated that mask, I pray that she continues to do so for everyones sake!
I've missed you my friend. I too have been busy and not blogging much but i am trying to periodically check in.
That mask doesn't look very comfortable. Who designs these things? Her tolerance level is amazing, but then again she's amazing and so are you!
I missed catching up through your blog (since we haven't walked in FOREVER! Let's walk soon!). I am glad the blog is up and running again. Way to go AnnaKate!! I bet she will wear it at night with no problem. She looks so sweet with the mask on. She is such an adorable girl!!
Cassie
She is just the CUTEST thing!
I didn't realize a CPAP was quite the piece of equipment! I hope all goes well once she is sleeping in it. Kelly F
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