Monday, December 5, 2011

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.

Sunday, November 6, 2011

Trip #2 to Philadelphia/Shriners

November 6,2011
We arrived yesterday in Philadelphia without any problems-thank you Jesus! Smooth flights all the way. We were able to fly in this time thanks to my very dear friends Shari and John-we love you guys and you will be blessed! Anyway we were able to get a room at the Ronald McDonald House (RMH) in Camden New Jersey where we stayed last time.This time we got a boys room-we are in the farm/tracker room. Though it is not in a very safe area it is really very nice here. We have met some very special people here again this time. We will be in prayer for sweet Emma, 4 years old and diagnosed with cancer. She is from England and she and her parents and older sister are here for the next 6 months to get her the treatment she needs that isn't available in England. We met Ricky who also has arthrogryposis like Gideon and he is from Ohio, between Cincinnati and Dayton, very close to us. Anyway today was a lazy day of just hanging out and getting to know some of the people here. Tomorrow we head to Shriners for Gideon's cast change and to see Dr. VanBosse again. We hope to get a better idea of the future trips and the upcoming surgeries. Below are some pics of the last 2 days. Will post more tomorrow after our visit at Shriners.

Gideon made some fun chocolate treats

Silly Gideon

Tuesday, October 25, 2011

Making Plans for Next Philly Trip

October 25,2011

Well things are not falling into place for the next trip as I had hoped. They will not schedule any of our visits on a Friday. They say they do all serial casting on Mondays only. So our next appointment is for Monday Nov 7th-a day I am scheduled to work so I need to try to arrange a trade with someone. The other issue is I can't get a flight with Miracle Flights since it is so close=they need at least 10 business days. That means we either pay for flights or rent a car and drive-our car is not dependable. Either way it is a big expense. A friend suggested checking with a local Shriner to see if they would help in any way. It's worth a try. We will see. I am really worried about driving this by myself. I am putting it in the Lord's hands to work it all out. The visits after that will be every 2 weeks and we will be able to get on Miracle Flights for those. I can get through this next one because I can do all things with Christ who gives me strength! Also be praying for our friend Bryson. He is another sweet China treasure with arthrogryposis who is in Philly right now and will be having surgery on Thursday! Thanks to all who are following along and will be praying for our mighty warrior Gideon!

Sunday, October 23, 2011

New Doctors and New Plans!

Gideon's "Guppy Smile"

Gideon just after being casted.

We had the pink Daisy room at the Ronald McDonald House

At the RMH with Ronald

On the plane!

October 23,2011
I haven't posted in quite a while and really so much has been going on. We have brought home 2 more treasures and this time from the Ukraine-our sweet Abby and Clara. Both are 9 years old and blessed with an extra chromosome. They are adjusting beautifully. Both are in school and loving it!
Gideon recovered well from his surgery in January but his doctor in Delaware retired. We knew we needed to find another specialist but with the adoptions this summer we had put it off. Well we finally made our trip to Philadelphia this past week to see the infamous Dr. VanBosse. We had heard from many families that this was the doctor to see and that he could work miracles with our special kids with arthrogryposis. We also planned to see Dr. Z for his arms while there. Anyway we had met up with some wonderful families in August that had children with arthrogryposis and learned a lot. One grown girl with arthrogryposis was a wealth of information. Tracey also told me about Miracle Flights-southwest airlines provides free flights for children needing medical treatment- So Gideon flew for free and I only had to pay $50. We stayed at the Ronald McDonald House in Camden New Jersey, another blessing. Anyway we had our appointments on Friday. We met Dr. VanBosse whom we just loved and he really came across very knowledgeable about Gideon's diagnosis. His first plan was to cast Gideon right away to straighten out the feet-again! He then informed me that the osteotomies that were done on Gideon in January were not done high enough on the femur to give the best results so he wants to redo that as well as some other surgeries on knees and feet. He will not be able to do any surgery for about 6 months though because he is so booked up. They will let us know a date soon. Dr. Z saw Gideon for his arms and hands and he also wants to do surgery to straighten out his left arm. His left hand turns outward because the humerous bone is twisted so he wants to do that and do surgery on the hands to bring the thumbs out to a better position. He would like to do this at the same time as Dr. VanBosse so again not sure when. But right now Gideon needs to go through the serial casting=being recasted every 2 weeks-meaning a trip to Philadelphia every 2 weeks for about 5-6 times depending on how long it takes to get the feet straight. Then new AFO's (braces) for his feet. It was a lot to digest. We will make sure Gideon gets the treatment he needs no matter what. The cost will add up though. The cab from the taxi to the Ronald McDonald house(RMH) was $50 and then back again. The cab to Shriners Hosp was $30 and then each night at the RMH was $15 not to mention money for meals in the airport and hospital. I guess I will need to so some fundraising. Tim is still unemployed (since july). So things are tight but it works out that he is here with the kids when I am gone.
We thank God for leading us to these Doctors who have high hopes for Gideon. We are praying that one day soon our boy will be walking! We have been blessed in so many ways and cannot thank Our God enough. I will update with each trip to Philly and let everyone know how it is all progressing. I will post pics too!

Thursday, February 24, 2011

Cast Removal Today!

February 24, 2011
Today is the day for the casts to come off! We are all so excited but especially Gideon.! I will take pictures and post these later today. We cannot wait to see the results and to give Gideon a bath!

Thursday, January 20, 2011

Doctor's appointment cancelled!

January 20,2011

Well due to the new snowfall we cancelled our postop appointment since it was up in Mason Ohio. It is rescheduled for Monday evening and in Cincinnati so that is closer for us anyway. Gideon is doing great as far as the pain is concerned. He hasn't had any pain medication for over 3 days now and he is sleeping great. His biggest complaints are that he is hot and sweaty and itching all over. We try to keep him as clean as possible with sponge baths daily and rubbing him down as far as we can reach in the cast. Also just scratching his head feels so good for him. He is bored too. The kids are home today due to snow so he has some entertainment today. They push him all over in the wheelchair and play wii a lot. Praying for the next several weeks to go quickly and for good healing of his bones. Praying he is able to stand straighter when these casts come off and get right back into therapy. Praising God for all he has done for this precious child--he is truly a mighty warrior to me!

Tuesday, January 11, 2011

He is the Best Patient!

January 11, 2011
Gideon has had a great day. All is good. Now the long 6 weeks begins. We return to the doctor on Jan 20th. It was a snow day today so all the kids were home. Crazy day! At least he had company and friends to play wii with.

We Are Home

Feeling so much better today. The smile is back. Such a mighty warrior!

Saturday, January 8, 2011

Saturday morning

January 8
He's a little irritable this morning and does complain about pain. Using the pain pump which helps. He's trying to play Wii but it's difficult for him to control in a laying position so he is very frustrated. He ate a little bit. Will try to get him cleaned up a little and play something else like cards to distract him. Hopefully they will get the foley catheter out today. He really wants me to hold him but he has so much connected to him right now with the monitor, IV's, foley etc.. I had to lay in the bed with him last night which was fine since I let Danielle have to pull out bed-she ended up staying since the roads and traffic were so bad. Daddy is coming back tonight after work and bringing him a milk shake which he is looking forward to. Thanking God that the hardest part is over and praying for a quick 6 weeks until casts come off. Thank you Lord for this precious child and for bringing him through this rough surgery. You are an Awesome God!

Friday, January 7, 2011

Rough Night

Jan 8 2:30am. Well he came through the surgery great. Once we were to his room he was asking for Wii and telling everyone what he needed. He played Wii for several hours and only would complain that he wanted the casts off but not that they hurt. He ate jello and drank apple juice. All night his heart rate has been 150's to 170's=too fast and respirations in 40's and 50's but they are just watching that. As the night progressed to around 11 pm he began to get very upset about the casts and saying he didn't feel well. He said the casts felt squeezy. When I asked where he said around his chest. It was apparently feeling like he couldn't breathe and he panicked. They gave him some valium and this helped with a shot of pain med from the pump and he slept until about 2am. He woke in severe pain so another hit on the pain pump, some tylenol and repositioning and he is finally sleeping again. He really must have had some of the caudal medicine they gave during surgery helping out initially so we need to be sure to keep dosing him with the pain pump to keep it under control. We are using ice packs as well to get some of the swelling down. Praying for a couple hours of rest now. More in the am.

Hospital pics before surgery

Gideon and Monkey George

Pictures at the hospital before surgery

Surgery update-

Well they took him back almost an hour late. Poor little thing has no idea what he is in for. He just knows that Dr. Tamai is fixing his legs and putting casts on them. He was very happy and very talkative and everyone fell in love with him. He blew bubbles and colored and played with "monkey George", his stuffed animal he has with him. I went back with him while they put him to sleep and that is always so hard to watch. He was an angel. He is in the Lord's hands now and we are praying for Him to guide the surgeon's hands and give him the skills he needs and the endurance needed. Also for the anesthesiologist to give him just the right amount of anesthesia and that he monitors him closely. Praying for no pain for Gideon when he wakes up. No infection problems either. I should get an update every 1.5 to 2 hours. I will post again soon.

Surgery Day

Friday Jan 7
I know its been a while-along while since we have posted. But today is a big day. Gideon is having his first major surgery. He has been going to PT and OT and learning to stand in braces but he is so bent at the hips and knees that surgeries will be needed. Today is the first. They are doing a bilateral femoral wedge osteotomy. This is a long and painful surgery for Gideon. It could take up to 7 hours. He will be in a hip spica cast with the bar between his feet for 6 weeks. The end result should be that he can stand straighter and be more independent. Please be praying and I will keep you posted.