Wednesday, September 10, 2008

Update on Jordan

First I need to let you all know that my camera is broken. :( :( :( :( I am unable to post any pictures which is killing me. It will be weeks before I find out if warranty will cover it and until then I am thinking about getting a disposable.

On to the update:
We met with Jordan's new orthopaedic surgeon yesterday. He is the head of orthopaedics at UCLA and is my new favorite person. Honestly surgeons are total brains and because of that they usually lack the social/people skills that make you truly enjoy their company even though they are really nice. Honestly I am so attached emotionally to all of our surgeons because of what they do for Jordan and for the fact that they walk through some challenging times with us being steady and sure when I'm waivering (God is obviously the one ultimately in control but he uses them in mighty ways that are beyond my understanding). You can see a photo and bio of William Oppenheim if you Google his name with UCLA. He is warm, caring, thorough, patient, he listens, he's helpful and he gets things done. He spent nearly two hours with us which is UNHEARD of in the world of HMOs where each doctor only gets paid for 13 minutes with each patient. He had a waiting room full of patients but knew we drove 2 1/2 hours to see him. Okay enough about Dr. Oppenheim here' s the scoop...
Her R foot - Jordan's right foot has a condition called Congenital Vertical Talus or Rocker Bottom Foot. Basically the bone that connects the forefoot and the hindfoot is at a weird angle pointing down toward the arch of the foot. Without surgery she would eventually not walk on it or not without great difficulty, callouses, and an open wound where the bone would wear down the skin. He x-rayed it and said the surgery is very complicated and detailed and would take 2 to three hours. He will move the bone to the correct position, pin it in place, then cut the two tendons that are stretched out and wrap them around the middle foot securing them. He will then cast her leg...for three months! Yes, she will have a cast for three months and I'm assuming the pins stay in forever. The first six weeks he'll make the cast up high in a shape that will prevent her from walking on it. After that she will have a lower walking cast with a walking boot. How cute will that be - it'll be so tiny. We are trying to schedule surgery for mid-October.
Her hips - The doctor thought Jordan had a leg length discrepency so he considered the fact that she may have hip dysplasia. He did x-rays of her hips and found that she does not. Wheew!
Bone Development - The doctor here in Orange County who looked at Jordan's foot said that her bone age is delayed and that it was probably due an underlying nero-muscular syndrome (in addition to the Amniotic Band Syndrome). I was doubtful and so was Jordan's PT. Dr. Oppenheim said that her bone age is okay so we shouldn't be concerned.
Height - I talked to him about our concerns with her height and her slow growth. She has never been on the growth chart (she's not on that percentile chart that is used to compare children to other children their age - she is to short to make it on the chart). Our geneticist was monitoring her slow growth and was concerned when Jordan was an infant but we haven't been back to see her since we've transitioned most of our care to UCLA. Dr. Oppenheim suggested we see Dr. Pinchus Cohen at UCLA's Growth Disorders Clinic. He said that he is an endocrinologist who can help us. He said that hands down he is the guy we want to see. Shan and I are very excited to finally figure out if there is an endocrine/hormone issue. We're waiting on insurance paperwork to schedule it.

Prayer Requests:
- That all paperwork and timing works out easily with little effort.
- That God's timing is what I want rather than my own.
- That I will take my thoughts captive as we approach another surgery. After our last one (see blog posts in October '07) I find myself needing God's word more and more to protect me from being fearful, that remind me of God's sovereignty. Having moments where I thought we lost her and then the shock of seeing her on a machine for a week has really impacted me more than I thought. I KNOW that I am to not be anxious about anything so I will continue to fill my mind with the truth of scripture as the surgery approaches.
- That more and more I would have opportunities to impact people for God's glory.

Someone asked me yesterday when Jordan's surgeries will be done and in telling her I was kind of shocked myself at how many she will have had by the time she is old enough to drive a car and vote for president. She has had two major surgeries so far (multiple surgeons invovled at least 6 hours the first time then 7 or 8 the second), a minor ear tube surgery, she'll have the foot surgery this Fall, another hand sugery in the Spring, then facial and tear duct surgery next Summer. The foot surgery she'll have soon will possibly need to be redone (50% chance) when she is five and we are expecting at least one more cosmetic surgery on her face during childhood. She will have at least one dental surgery but possibly (worst case) a jaw surgery, another thumb surgery (the one he'll do in the Spring will need to be redone) and probably a fine tuning of her face as a young adult after puberty. Wheew! That is potentially 12 surgeries not counting ear tubes. Weird to think of it that way. I guess that's why we are told to focus only on one day at a time. I often think of the Israelites that God led into the desert for 40 years. He only provided enough food for them for one day at a time. They couldn't store it up, they couldn't make it, they had to see one day at at time and trust in God's provision.
Nice lessson.

1 comment:

Chiara said...

Jen, I love you detailed accounts, because I can pray so specifically. We will be on our knees for you and your family--so much for which to pray and so much for which to give thanks!