Philadelphia -Always the Unexpected

7/21/2012
Gideon and I arrived in Philly on Thursday and are staying at the Ronald McDonald House in Camden New Jersey, our home away from home.  The plan was to see both Dr. Z and Dr. VanBosse on Friday establish a plan and head home on Saturday.  Well-not exactly how it turned out.  I had big concerns in 2 areas.  First his right leg- the old hardware is still in place since January of 2010.  His femur is extremely bowed and causing him some pain.  The hardware should have been removed by 1 year.  Anyway we have been on the waiting list for surgery since last October.  So after 2 trips to xray Dr. VanBosse is concerned but wants to compare these xrays immediately following the original surgery in Cincinnati.  Although I had provided them with these xrays back in October they can't find them.  So for now the plan is for surgery in november and to plan on serial casting for the feet 2 weeks prior to the surgery.  So we come 2 weeeks prior to surgery for casting then a week for surgery and another week after.  So potentially a 1 month stay in November.  Hope I can take family leave.  The other concern was the arm that we had serial casted in cincinnati.  This did not do much good.  The problem was that the OT's did the casting-and they are not very aggressive- and they did not use plaster casts-they used soft casts.  So Dr. Z wanted to cast that arm again but also cast the right arm so my poor boy is in casts on both arms.  We will stay for 10 more days and have these casts changed on Monday, Friday and the following monday.  He is pretty miserable.  He throbbed in pain most of the night and has been pretty sore all day.  It will be a long 10 day for us but also for Tim and the kids back at home. I am on vacation and we had planned on taking a  2-3 day trip with the kids, now Tim will have to do it by himself.  As I said not what we expected.  So please pray for us and for Tim and the kids.  I trust these doctors and know they are doing what is best for Gideon-He is such a mighty warrior!  There was a young man here who had spine surgery for scoliosis and isn't moving too well.  After spending time with Gideon he told me that Gideon was an inspiration to him.  He was very moved about the way Gideon takes everything in stride and always with a smile.  My little guy is an inspiration to me too!

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In Philadelphia

Merry Christmas

Christmas 2011

One very Happy Little Boy


Our whole family together for Christmas

Cousin Jacob helping Gideon decorate Jesus Birthday cake

Celebrating with some special friends

Gideon with Santa Claus

Philadelphia Trip

December 19, 2011
Another trip to Philly. I think it is number 5. Anyway we flew through Detroit this time. It is a really cool airport with a tunnel that changes colors and plays music and a cool tram to ride. We stayed at the Ronald McDonald house in Camden again and this time had the Tie Dye room. We met up again with Anna and Fu Xia and made friends with Joe from Florida. Fu Xia has arthrogryposis like Gideon and Joe was a super nice teenager who had a spinal cord injury from a dirt bike accident a few years ago. Gideon loved hanging out with these 2 guys. Anna (Fu Xia's mom) was great company for me as well. The kids were given gifts at Shriners from the local NFL team-the Eagles. Our stay was once again made nice by all the volunteers and great families at the Ronald McDonald house. Gideon was measured for his braces and had casts put on again but this time below the knee. Much nicer. His feet look so nice and straight. Next visit is January-we leave on the 7th, he will have casts removed and braces placed on the 9th. We will be staying the week because Gideon will have surgery on his arm with Dr. Zlotlow on the 13th. We hope to go to the RMH on the 14th and then travel home on the 15th. Dr. Z will be doing a rotational humerus osteotomy on the Left arm and bringing his thumb up. This will turn his hand to face the right way and give him the ability to pinch with his thumb and forefinger. He will be in a cast for 4-6 weeks. Get rid of one cast and get another!


Look at those beautiful straight feet

Tie Dye Room

Gideon and Fu Xia

Tunnel in Detroit Airport

Pictures of our Dec 5th Philly trip

December 5th, 2011
Here are some pictures from our trip. The post in detail is below the pictures. Gideon is such a good little traveler and we have a great time on our trips except for the pain at the castings! I just love this little guy!

Mommy and Gideon in front of tree at RMH

Gideon's Christmas colored Casts!

Gideon Break dancing while the casts are off.

The Cat In The Hat Room!

Philadelphia Trip, Cast #5

December 5,2011
Wow, Casts #5. Maybe only 1-2 more to go. Last week Dr. VanBosse said we weren't even 1/2 way there but this week he said maybe 1-2 more. So next trip when the casts come off Gideon will be measured for his braces and then casts put back on. He will decide then if any more casts are needed. So that was good news. The bad part was once again the long wait. We arrived at 9:30am and did not get called back to a room until 1210pm. His casts were removed and we waited until 2:15 pm for Dr. VanBosse to come in. We had not had anything to eat since 7:30 am. The casts coming off were difficult again and Gideon cried through this. He did pretty good with the casts going back on with the right foot but the left foot he cried and cried big tears. He has a big open area on his big toe that is so sore. He is doing better tonight. Hopefully he will be able to sleep tonight. A little tylenol with codeine to help with that. We had good flights here, Cincinnati to Chicago and Chicago to Philly. A moderate amount of turbulence-I just hate that. Please pray for very smooth flights home for us tomorrow. We leave at 12:10 pm and fly into Chicago. The flight leaves there at 3:15 and we arrive in Cincinnati about 5:25pm. Another long day. I will post some pictures of our time here. The Ronald McDonald house is all decorated for Christmas and we did a lot of Christmas crafts. We even got to pick out some Christmas presents to take home. So we come back on December 18th for his Dec 19th appointment and then maybe 1 or 2 more times, until we schedule his first surgery. This is all very difficult but we just know we are doing the best we can for Gideon. Dr. VanBosse and Dr. Zlotlow are the best in their field for Arthrogryposis. With them Gideon has hope of becoming more independent and possibly walking.We know that God has brought us to these doctors and we will do all we can to be sure Gideon gets the care he needs. Gideon is such a little warrior. We always pray while we are on the plane and then thank God for the safe flight afterwards. He prays so sweetly. He knows that God goes with us everywhere we go and he will just start talking to him. He leaves an impression everywhere we go. He is such a joy to everyone he meets and we are so blessed to be his family.