First Cast Day at Shriners

                                              Gideon posing with his new Wii game while he waits

                                             I'm so hungry I just want to eat!
                                    
                                            My new casts-Orange and black for Bengals and Halloween


October 26th
We arrived at Shriners at 930am.  We were greeted by everyone enthusiastically as they all love to see Gideon. He was given a Halloween treat bag and a new Wii game of his choice.  Not to bad.  Dr. Van Bosse and his staff came in and we discussed his upcoming surgery.  He will be sure to give Gideon either an epidural for pain or a small catheter that goes right to the leg that will instill medication to keep him comfortable.  Last time they couldn't get the epidural in Cincinnati and he had to depend on IV pain meds which just were not cutting it.  So that made me feel better.  I just want him as comfortable as possible.  He will go to the PICU for at least one night and then to the floor for a few days.  But first we get through the next 2 weeks of casting.  He will also plan another surgery for the knees as soon as Debbie can get us on the schedule but it may be another year for this.  The sooner the better but Dr. Van Bosse is really booked.  We will pray abouth this and leave that in the Lord's hands.  He will work it all out.  Anyway.  We finished the casting around 12 noon and went to lunch.  After lunch we caught up with Kim and Peyton.  Peyton also has arthrogryposis.  He is 5.  He is also effected in the upper and lower extremities like Gideon.  We spent some time with them.  I mentioned to Kim that I forgot my face scrub and she gave me hers so I wouldn't have to walk to a store out in the dangerous streets-ha ha.  We love spending time with friends from Shriners.  We then went to get the brake on Gideon's wheelchair fixed in the therapy department.  They will have to order a new brake for him.  Back to the RMH.  After dinner we had ice cream and a Halloween movie.    After talking with Tim and the kids we were off to bed.  This morning we went to the zoo.  I will post pictures and post on that a little later today.  We are also asking for prayer as we brace for the Hurricane which will be hitting here Sunday, Monday and Tuesday.  We are in New Jersey at the Ronald McDonald House and they are expecting it to be really bad.  Please keep us in prayer as we could lose power for quite some time.  I will keep you posted.  We are blessed and know God has us in the palm of his hands.
                           
                                              

A Day in the Park 9/23/12

                                                     A fun day in the park

What's Been Happening?

We have been very busy here at home with school and therapies and surgeries.  Gideon continues with PT and OT and is preparing for our trip back to Philly.  Abby and Clara had their dental surgeries and did great.  They are all back into the swing of school and we are keeping busy.  Gideon and I head back to Philly on October 25th and he will have 2 weeks of serial casting and then surgery on both legs on November 8th.  We should return home around the 17th of November.  Please be in prayer for Gideon.  He keeps telling me how nervous he is about the surgery.  But he has been very sad lately watching his brothers and sisters do things he can't.  He is more determined than ever to be able to walk one day.  We know that with God all things are possible!  We will be in Philly for Halloween.  The other kids will have to go out without mom for the first time.  Dad will have to walk around with them instead of passing out the candy.  We all adjust  where we need to.  I will try to update more often.  For now I will leave you with some pics of the kids in the park.

Therapy Day

July 26, 2012
Yesterday was Christmas in July.  We had a great time.  Santa came and presents were abundant.  All the kids were so excited.  The RMH really did a great job.  I posted pictures on facebook from my phone but can't get pictures on the blog from here.  I will post those after I get home.
Today we went to Shriners for Physical therapy and he did really well.Measurements showed he had regressed since we were here last time.  Tomorrow they are going to put him in the stander again.  We are still waiting for insurance to approve a stander for Gideon at home.  He will have his casts changed tomorrow too.  We will load him up with Motrin before we go so maybe this will help with the pain.
Gdeon's friend Gracyn is having surgery tomorrow.  Please be in prayer for her.   She was in a motor vehicle accident.  We plan to visit her on Monday.
Another friend-Avery had chemo today and is not feeling well.  Please say a prayer for her too.
Talked to Tim and the kids tonight and all is well at home.  They saw big brother Jordan in Fiddler on the Roof today.  I was so sad to miss it.
It's getting late and we need to get up early.  Will update again tomorrow.
We are so blessed!

Cast #2

July 23, 2012
Today Gideon got cast #2 on his arms.  He had told Dr. Z that he hated having his casts sawed off so Dr. Z said ok we will soak them in water and then unravel them.   So we started the soaking process when we got there and after a 1/2 hour of soaking and still not soft enough to unravel and Gideon having to pee we decided to go with the saw.  He did very well.  Casts off and off to the bathroom!  Casts #2 went on with a great deal of pain and tears but Dr. Z is great.  He tried to distract him and make it fun.  He wrapped a ninja wrap around his head and painted his face with plaster and put feathers in his head wrap.  Gideon was very tough looking and said "nobody will mess with Gideon!"  Gideon also had informed Dr. Z that he was unable to play his DS the way he casted his thumbs so to be sure to let his thumbs free this time and Dr. Z abliged and tonight Gideon has happily played his DS.
Gideon has made many friends here at the Ronald McDonald house and not all of them children.  We have met several families with children just like our Gideon and it is great to be able to share experiences.  Tonight one of Gideon's friends arrived back to the Ronald McDonald House.  FuXia came in and Gideon was so excited.  It made his night.  This really is like a home away from home.  We are very blessed to be surrounded by some wonderful families and staff here.
Tomorrow we are going to take a trip to Target to get some needed supplies and maybe we will take a walk.  Gideon is getting a haircut tomorrow afternoon too.
Tim say the kids are doing fine.  He is keeping them occupied, taking them to movies in the park and out for ice cream.  They are going to see Jordan's play at Kincaid-The Fiddler on the Roof, on Thursday and then some swimming friday and Saturday.   Gideon will have physical therapy Thursdayand Friday and then another cast change Friday and again Monday.   We fly home on Tuesday.
Please pray for good results with the casting and for Gideon to tolerate the pain and be able to sleep.  Pray for Tim and the kids at home too.  We just thank God for these Doctors here and Philly and the great people at the Ronald McDonald House!

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