Wednesday, November 08, 2006

Thanks for checking in again - we have a couple updates.
Craniofacial Team:
We met with only the preliminary part of the CHOC Craniofacial Team on Halloween.
The nurse answered any questions, gave me a breakdown of the surgeries and procedures and also showed me pictures of a boy with nearly the exact same size cleft before and after. It was amazing and so encouraging. I really can't imagine Jordan with her lip together so it's hard to believe it's going to actually work, even after seeing that boy's pictures. The nurse said she'd guess we'd have the surgery late December or January. I think that's being too hopeful. My guess is more like January/February, maybe even early March.
The genetic counselor took our family history and risk factor info then explained what the geneticist will be looking at. God was so gracious yet again for giving us this counselor. I spent 20 minutes or so with her and didn't even notice until she was on her way out the door that her hand was deformed. She only had her thumb and her pinky yet I didn't even notice! I was so shocked I didn't even ask her how it happened. It looked like it was birth defect and therefore made me think of Jordan's hand and the possibility that it isn't going to be the first thing people notice about her when she's older (or the second or third thing they notice - after her lip and her foot :) ). How encouraging!
The geneticist looked at Jordan, asked questions, looked at reports and measured various parts of her body (eg. space between her eyes, position of her ears, size of jaw, etc.) and determined that all of Jordan's issues appear to be purely physical and obviously caused only by the tears in the amniotic sac! Praise God again! We were worried about a syndrome that could affect her cognitive development.
When I first got to CHOC I was really sad. I couldn't believe that I am now a mom taking my child to a children's hospital. As I was walking in I saw kids without hair, in wheelchairs, etc. and I realized it was Halloween. While I was there the inpatient kids who were able, dressed up in their costumes and the staff had them in a parade through the hospital. I saw kids in costumes being pushed in wagons, and wheelchairs, parents dragging IV bags and oxygen tanks behind their kids and I realized that I have nothing to complain about. God has been so gracious to us! Our children are not dying and they are not sick. What a blessing!!! We should all be so thankful!

Speech and Hearing:
Today we had the big hearing test for little Jordan Joy. It was a very stressful day trying to keep her awake all morning then on the drive to Orange (she needed to sleep through the two hour test or else we'd have to go back). We actually made it and she slept the entire testing time. We were really nervous but found, once again, that God continues to be so merciful. She passed the hearing tests in her right ear and showed a hearing loss in her left ear. However...the hearing loss appears to be fluid from the cleft palate and should be corrected when they put tubes in her ear during the first surgery (these tubes are very common and so many kids even without cleft palate need them to drain the fluid).

Thank you all for your prayers and your support. Most of all thanks for bearing with me while I continue to catch up on thank you cards, phone calls and emails (I have 50 unread emails in my inbox at the moment if that gives you an indication of how busy I've been). We are so thankful for all of you and will continue to update you.

Our next appointment is with the entire team (the last one was supposed to be with everyone but they changed it). It's on November 29th. They'll give us the okay for surgery that day and the following week we should get our surgery date.

We should be meeting someone from Regional Center of Orange County in the next few weeks too. They'll come to our house to make an IFSP (Individualized Family Service Plan) which identifies our needs and then how they can help us. It's free and offers tons of resources for us until Jordan is three years old.

Here are some photos that may give you a better idea of what the bands are in utero. They're pictures of a newborn that still has bands attached that the doctors needed to cut.
Cut and past it into your address bar.

Thank you again everyone!!!!
Love, Jen