Last Day

Photos:
Chloe getting an echo cardiogram
Sharing Sasha with strangers
Chloe & Dr. Potocki
Chloe & Dianne
Ready to go home
On the airplane
"It's over..."

Our final day in Texas was just as busy as the rest. The best news of the day was that we received all good news & not a bit of bad news.

Chloe had her blood drawn first thing in the morning. It only took 4 of us to do that. For someone with low muscle tone, she is a strong little girl. All of her blood work came back normal :). Interesting tid bit - Joe, his mom, my mom, my dad & I all have high cholesterol. In the area that is duplicated on chromosome 17, in addition to the genes that give her PTLS & CMT, she also received 3 copies of the gene that controls cholesterol. Her cholesterol looked great!

After the blood work she had to have an echo cardiogram. This is an ultrasound of the heart - every chamber & every vessel. Over 50% of the kids with PTLS have heart defects, some of them very severe. They thought they might have to sedate Chloe - this would have met extending our stay. But...much to everyone's surprise, she laid there like a very good girl. We did have to get a little creative. Baby Einstein was playing on the TV above her - that was okay for about 3 of the 20 or so minutes. Once she realized that the ultrasound gel was gooey & fun to smoosh through her fingers - she didn't care at all about Baby Einstein. She wanted ultrasound gel & we couldn't get it to her fast enough. She loved it and I bet no one at Texas Children's Hospital has ever used more gel for one ultrasound. Oh yeah - her heart is perfect!!! What a blessing to know this is the case. I have included a picture from the echo waiting room - Chloe sharing Sasha with a couple total strangers.

After the testing, I finished packing up while Chloe roamed the halls & repeatedly had the nurses hold Sasha, look at Sasha, etc. Dr. Potocki came up & reviewed all available test results. More good news - I may have told you some of it but good news is worth repeating. Her kidneys looked great, her hearing was perfect, & she doesn't fit anywhere on the autism spectrum! The report was very clear & it was done by the chief of the department. She said that the only criteria Chloe met was age of onset. Since she was being evaluated at the age most kids start having signs of autism, she fit that criteria. What a relief!

All in all, this was a good week - emotional but good. Joe and I are holding out hope through prayer & perseverance. We feel confident that Chloe will be the 2nd child that is not considered mentally retarded (developmentally disabled is the term used among therapists) at age 7 (when they can test her IQ). All of the things that typically cause problems for kids with PTLS (heart, kidneys, spine, etc.) checked out just right - who is to say that her brain won't do the same. That said, it will take close to a miracle (hint, hint - please pray for Chloe forever).

I enjoyed getting to know my little girl a lot better. It must be hard to be a second child - she has spent very little time alone with us because she has had a brother her whole life. We really enjoyed being with each other and she was such a great roomie :). I look forward to our next trip together.

After our good-byes we took a cab to the airport where we had a 2 hour wait. Chloe was wonderful and she was great on the plane too. She stayed in her seat the entire time & no one would have known she was on the flight. She eventually passed out & so did mommy!!!

Thank you for your emails & prayers. I felt inspired every morning when I read your messages.