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Thursday, September 29, 2011

Philly Trip!

I was up at 5:30 am, loaded the car and Gerri and headed off to the airport.
We checked in at 6:30 and then sat at our gate since our flight did not board till 8 am.
We boarded the flight at 8 am and at 8:30 when we were supposed to be taxi-ing the pilot came on the overhead to say that Philly had just closed the airport because of fog but he hoped we would be able to take off around oh 10:00!! So much for being really early for out 11:15 appt at Shriners!!
After last week not making it I was starting to think we were just not supposed to be going!!
I called home to let them know we were going to be late, then called Shriners to let them know we would be late.

napping on the plane :)
We did finally take off at 10:15, landing in Philly at 11:15. We got the rental car and then headed directly to Shriners. We ended up being an hour late but they were ok since we had called. When we got upstairs it was pretty quiet and we got called back at 12:45 because 2 other families were not there when their names were called :) They put a sticky note on our file to let them know we had a 6pm flight home and had to be out by 4!
One of the fellows gave Gerri a job of clicking the mouse every couple of minutes to keep the computer from going to sleep :)
 We ran up and grabbed lunch while we waited for Dr vB. By 2 I was getting worried we were not going to make our return flight home at 6. I knew we had to go to O&P and PT still :(

At 2:30 Dr vB came in and gave Gerri a huge hug! She gave him a card she had made him too. He was SO happy with her walking and her feet. We talked a bit about her hip surgery the end of November to get an idea of how much time she would be out of school. He thinks she will be in the hospital about 3 nights, then get discharged to me at the ronald mcdonald house.

If you are squeamish, skip this paragraph :
She will be having the head of her femur cut and repositioned (her surgery in UA put the head in the wrong position, 90 degrees and it should be 45 degrees) he will remove all the Ukrainian hardware and then he will cut her femur bone about half way down her thigh and insert 4 rods, 2 above the cut and 2 below. (this is her fixator) A week after surgery we will go back to see Dr vB who will show me how to manipulate the fixator. I will turn the screws to gain 1 mm of "space" every day. He thinks she needs to gain about 40mm to even out her leg length difference. She will gain a bit from having her hip fixed, but he also wants to overcorrect a bit too.  She has to heal a bit from her hip surgery before I can learn how to do the fixator so that is why we have to wait a week after surgery, then since he only has clinic on Monday and Friday we will have to hang around Philly till the Friday after, so we will be in Philly about 11 days total. Then we will have to fly back to Philly every week for follow up appts so they can check her hip healing and her fixator. Once we get the bone "space" he wants I will stop turning the screw and we wait while new bone fills in the "space". That could take anywhere from 4-6 months. When she gets out of surgery she will have to be in a wheelchair that allows her feet to be straight out in front of her while her hip heals.  The wheelchair we have does not allow that so she had to get measured for a rental one from Shriners. Dr vB says she can get up as soon as she is comfortable. Since we know she will not tell us when she is in pain, I am going to try to stay ahead of the pain as much as possible.  Since we will be in Philly for 11 days Ms V is going with us, it should help them both as they love to be together. Gerri is more worried about being in the hospital than anything else. She keeps remembering being in Kiev in the hospital by herself :(
The only think she asked was to make sure she was not going to be in a body cast again, like in Ukraine. Dr vB assured her she would not be in any kind of cast at all. So amazing!!
Since she needs to heal from the hip and fixator surgery the current plan is to not even think about her going back to school till after the first of the year. She will not be happy about it, but we have to protect her hip and femur. Gerri does not understand the fixator part or what it will do or look like. At this point we have not told her much since she is SO worried about the hip surgery part. She has seen kids with fixator's on but has not said much. When we go for our weekly visits during the "turning the screw" phase Shriners will also be shaving off the lift on her left shoe. That should help her see that her leg is getting longer :) I told her that when we are done with all this she will be able to wear any shoes just like any other kid!!
Dr vB says that by spring she will have a totally different gait. With her hip fixed and her legs the same length it will be amazing! He also said when he fixes the hip her knock knee will be much better too.

We left to head over to O&P (orthotics and prostetics) to have her AFO's adjusted to try to be able to wear her shoes again. Dr vB marked her splints and they trimmed them down in no time flat!!
We even had time to run up to PT to get measure for the wheelchair!

We were able to return the rental car early and get to the airport early!!
look at me in sneakers again!!!!!
We were actually able to get an earlier flight home, the last 2 seats!!
We did not tell anyone that we were coming home early and boy were they excited to see us and see Gerri with her sneakers on!! Victoria just about knocked Gerri off her feet!

Just the thought of what she will be going through breaks my heart! The pain, being uncomfortable, having to learn to walk again, it is SO much! I just SO hope this does not set her back too much. I think staying in Philly for the extra days will allow her to heal and relax, be entertained by Ms V. I hope to be able to really focus on keeping her pain under control too. Sometimes it seems like she has spent SO much of her 1 1/2 years with us having something done TO her. I am an adult, I understand the big picture, but she just doesn't :(
I actually brought out pictures from last summer which was before she had anything done to her feet so she could remember how she could not walk, could not stand, could not do SO much.
Pray for her heart :)

To top it off I am having my hip surgery in two weeks. I have to have a total hip replacement, I have put it off for years and just can't anymore. I told my Dr I had to have it done and over with so I could be with Gerri in Philly for her surgery. I told him if he could not do it in time for me to go to Philly then I would hold off till she was better since it is SOSOSOSO hard to get surgery scheduled with Dr vB. I am really worried that seeing me go through what I have to go through will scare the dickens out of her. I will be in the hospital for 4 long days, have to use a walker and graduate to a cane. Hopefully doing ok by the time we have to go to Philly. My Dr is pretty sure I will heal and then tell him I feel so much better I should have done this a long time ago! (I can't see it right now :) )
The kids are more worried about me being in the hospital for the 4 days, not because I will be in pain, but they are worried Daddy won't take good care of them!! :) :)

So lots of prayers for us here! It is a very very busy next couple of months!!


Julia said...

Oh My Goodness. I am at a loss for words. Hurting for both of you as you face these surgeries. I wish there was an easier way. Poor sweet little one... Our kids suffer. They suffer so much. It just seems never ending!!

Pam said...

Gerri is making such beautiful progress! -- too bad it is so painful and difficult getting there!

I enjoy reading your blog and decided to feature Gerri on my blog. I'm hoping it is OK with you. You can check out my post here.

If for any reason you would rather I not feature Gerri, or if you would like me to change something in my post, please let me know and I will change or remove it promptly!

Praying that God will be with Gerri and your family during the difficult procedures and that the results will be very good!

Tracey S. said...

Having been there done that w/ leg lengthening, I am sad Gerri has to go through it but I am SOOO excited for her at the same time! I can't wait to see how much it improves her gait! If you have any questions please don't hesitate to ask!