Lydia's Sleep Test

I told Lydia we were going to a party at the Hospital. She got to wear her cool blue pj's, her princess sunglasses (mom's sporting them for the pic) and bring her Dora lunch box. First we had a pizza party. Dad packed us pizza and we ate it on the hospital bed...very fun.

Lydia's favorite past time...see-food.

Then we headed down to McDonald's for an "M-treat".

This picture is hard to see but there are about 50+ wires coming from that box. 25 connected to her scalp..glued and blow-dried, 10 to her face and neck...taped, and a various 10-15 on her arms, abdomen, legs and toes. There's a nice tube shoved up her nose and a wire set above her lip to monitor inhales and exhales. There are also five camereas and a sound recording. Although I pushed my bed close to Lydia's they asked me to not get close as my body would interfer with Lydia's data. It took us 1/2 hr to get everything hooked up, Lydia was traumatized, cried until she cried dry tears. This picture is about five minutes from sleep. She woke up once screaming, luckily I was able to put my hand over her and she slowly went back to sleep to "Iam a Child of God". I tried not to, but I did cry all night. I'm really trying to have a positive attitude, but all these tests are taking it's toll. Hopefully we really don't have to do anything like this again.

7am They de-cemented Lydia's hair and took off all the tape. She was such a good girl she got an apple juice. At least we left the hospital party on a good note....Lyd loves juice and she got a Dora sicker. What more could you want from a party? Later that day Lydia had another appointment at CHOP. We met with the Speech Therapist and a Therapist that deals with Clefts and Palate disorders. They highly suspect a palate disorder although it is ambiguous and almost too early to tell. We have an appointment with a Genetisist now and an appointment with the Therapist in the Palate department, she wants the Plastic Surgeon over that department to look at Lydia. This will take place in August sometime. The thing with CHOP is that you are lucky to get an appointment for anything three months from when you call. So, we are glad someone has finally jumped aboard our band-wagon. Now we just wait for June and August. In the mean-time the Dr.'s gave me some Speech Therapy lessons to work on every day. YES!!!!! This has been helping alot. Lydia now can say: "La" and "Li" and "Lo" although not in words or in a sentence.

Thanks everyone for your continued support. I truly, from the bottom of my heart, thank you. This a long post, but a short and spotty update. If I could I would spill my guts on everything we've been dealing with, but just know that we really appreciate it.