Thursday, October 19, 2006

As you can see Noah is adjusting much better these days to our new addition. We had a tough couple of weeks where he was acting out after we brought her home but now he kisses her and touches her and wants to give her the bottle. It's really sweet.

We're still trying to adjust to life with a newborn (sleepless nights, grumpy days, a messy house, etc.) but in the meantime we've had quite a few doctor's appointments to tell you all about.

Since Jordan failed her hearing screening at the hospital we went to the Ear Nose and Throat doctor (ENT) to have her hearing re-screened/re-checked. She passed in her right ear but still failed in her left ear (the cleft-affected side). They referred us to an audiologist who will do an ABR (Auditory Brainstem Response test which puts sound into her ear and then tells us if the brain registers the sound) to find out if she has a hearing loss. Praise the Lord it will only be in one ear if there is a loss. Also, praise the Lord that I have my Master's and credential in deaf education and tons of wonderful co-workers who can help us decipher all the test results and use their contacts to help us. Who would have thought???

Plastic Surgeon - We met with Dr. Sundine who wants to release the foot and the thumb and do a procedure called a z-plasty to loosen the constriction band/ring on her leg where the foot is attached. He suggested doing it in a few weeks. He also suggested doing the lip adhesion surgery in 3-6 months.
Pediatrician - The doctor said she's gained one full pound in one week which is fantastic. She said she seems to be doing well but has a "click" in her hip that she wants the orthopedic surgeon to look at.

Orthopedic Surgeon - We met with Dr. Rosenfield today who suggested we release the foot and thumb and loosen that constriction band on the leg during her lip surgery in a few months rather than next week. He feels the risk of anasthesia outweighs the risk of the constriction rings and tied foot and thumb. He said that he will do the surgery with our craniofacial/plastic surgeon and will cast her foot afterward to help it go back to a normal position. As much as we'd love to do the surgery now to release the bands we are nervous about anasthesia so we'll probably wait. He also noticed a "cleft" in her low back which could indicate a tethering of her spinal cord. As she grows that tethered spinal cord could pull and cause permanent neurologic damage, paralysis and loss of bladder and bowel control. He suggested we monitor it by MRI to operate on it before damage occurs. We were very discouraged to hear this. It seems that every other appt we get more bad news. It seems we should be thankful that she has the hand and foot abnormalities because if she didn't we may not have found the spinal cord tethering which could have been disastrous.

We got an appointment to meet with the entire CHOC Craniofacial Team. On Halloween we'll meet with every specialist on their team including but not limited to her facial surgeon, orthopedic surgeon, audiologist, speech therapist, oral surgeon/dentist, social worker, geneticist, etc. in one long appointment. Once we leave they will sit down together to work out a plan for us.

Overall we're tired and overwhelmed with the doctor's visits but encouraged that things are starting to happen. Insurance hurdles seem to be working out and we're getting dates on the calendar for upcoming procedures. We're still getting meals from our friends and are so thankful for the extra time that leaves us for doctor's phone calls, a little housecleaning, time to rest and especially time to spend with Noah during such a transition. Thank you to everyone who has signed up to bless our family with food. We are so appreciative. We've had some very trying days where we've been at the end of ourselves but we realize that we can do all things through Christ who strengthens us - the support from our friends and family helps too. :)

If you've called us, sent us an encouraging card or email or have dropped off a gift please know that we are so grateful and that we will call you back or reply to you as soon as we can. Things are really starting to get back to normal (a new normal for us) and we are slowly but surely managing things better and will get back to you. :)
We will keep you posted on any new updates as we get them. Thanks for checking our blog!

1 comment:

gina brooks said...

Hello Gray family! Jen, thank you so much for taking the time to update Jordan's page. I know you must be so busy but it's wonderful to see pictures and hear how things are going. It helps us know what we can pray for. Jordan, you are such a beautiful gift from God. The Lord bless you!