Happy New Year!
I hope you are all well and having a great start to 2012.
The PF Chang's Rock n Roll Arizona Marathon & 1/2 Marathon is now only 10 days away. I am excited and ready to do the 1/2. I'm a little bit behind on my fundraising efforts as you can see and would like to reach out to you again to ask for a donation if you can donate at this time. Every little bit helps.
A few quick Ava updates. Let's start with the good news. Ava's language continues to improve. She says things like "Hi Lila. How are you today?". "What's up, momma?" And "I'm not going pee on the potty!" - my least favorite. She is in PreK and loves it. She gets to ride the school bus and always comes home happy. She gets three therapies a week at school and one therapy at home each week. All in all she seems very well adjusted and is funny and very loving almost always although she is a 3 year old and can put up a good fight when she doesn't want to do something. Wonder where she got that from?
Now for the not-so-good news. Ava was diagnosed with Long QT Syndrome which is a heart issue on December 6. Although she has shown no signs of LQTS the signs are dizziness, fainting and sudden death. She seems to be on the minor end of the spectrum but we won't know for sure until we see the electrophysiologist on January 24 at Children's Hospital of Phila and until we get back the genetic testing which will be sometime in late February/ early March. We also just found out on New Year's Day that Ava's left kidney looks worse and that the surgery that was done on her ureter is showing some scar tissue and the urologist may need to go back in for a repair. She is going to have a sedated MR Urogram later this mont also at Children's Hospital of Phila.
No matter how many times I convince myself this is it with Ava there is always something more that seems to be wrong. So I am going to accept that as the norm and just be as prepared as possible to handle the tough news and do what we can do to help her out.
I could go on and on about how wonderful this little girl is but (1) you already know and (2) Lila is screaming for me so I must go!
Thank you as always for your love and support!
|Joy Weber||1/16/2012||$25.00||LOVE YOU|
|Terri Olshanski||1/15/2012||$200.00||Good Luck! Hope you are able to meet your goal.|
|The Blandina Family||1/12/2012||$25.00|
|Joe Bivins||1/10/2012||$100.00||Best of luck...|