Wheelchair Wyatt :)

I'm sorry that I haven't kept up with the blog like I hoped. Life has kept us busy and I havent stayed on top of some things...did anyone find a small boy in that pile of laundry over there?! Our latest SRH appointment was right before spring break. Wyatt was hyper as always that morning and had fun playing with his new monkey (given to him by the hospital). He also still loves all of the beautiful fish filled tanks they have in every waiting room there. He kept telling me his bone was going to look great in the xray since his pain had been lessened recently. We got our X-rays completed and then went to wait for the doc. While waiting, we saw many children missing multiple limbs and it put it all in perspective for me! My child has something that seems daunting at times but really is only a small part of who he is and hopefully won't affect him his whole life.
The nurses, physical therapist, PA, and dr all met with Wyatt. His abduction and rotation seemed about the same as last time but his X-ray showed even less femoral head. The doctor decided the best treatment for now would be to restrict Wyatt to a wheelchair so that little to no pressure would be put on the bones. We also do exercises with him every morning and evening. A step better than a body cast, but if you know Wyatt then you know what a difficult task this has been.
Wyatt has stayed upbeat and his teacher and the kids at school have been amazing! Wyatt was worried kids would make fun of
Him, but it's been quite the opposite. Even the neighbor boys take turns pushing him around the yard in his chair. We read, play games, draw and whatever else we can come up with to do.
We will go back to Scottish rite in late June and hope to see new bone! Thank you for all the prayers and messages. We are truly blessed! Watch out for a fast chair on the street if you live in Wolfe city!

Summer Update

The last couple months have been good for Wyatt! He has had a few bad days, but for the most part felt really great :)
We go back to Scottish Rite Hospital on Monday, July 26. We will see the doctor and get xrays. We will hopefully also get him fitted for crutches. Since he starts kindergarten this year, he will need them to be able to get around at school on the days he cant put any weight on his right leg.
We went to Lake Texoma for July 4th weekend and had a guy in a camper near us that was missing both legs. We came to find out that he went to Scottish Rite for many years. He met Wyatt and talked to him for a little while and told him how great that hospital is and that wyatt is lucky to go there. It was really neat to have Wyatt talk to someone who dealt with something more severe and yet lives an exciting life!
Also, please pray that we are able to switch doctors at SRH. I have made some phone calls and are in the process of getting that changed.
We are hoping to see in the xrays this time that the bone has been finished eroding and hopefully with soon start to regrow. I will post an update soon after our appointment.
I hope everyone is having a great summer and we appreciate all of your prayers :)

The Trial

Sorry it has been a while since an update! Our lives are busy with one thing or another but we really appreciate all of the love and support we continue to receive. The last two months have been difficult for Wyatt. I knew he would get sore and limp some but I didn't know it would get this bad. He has had flair-ups where he couldn't walk for a couple days at a time. He cries over the pain every now and then and continues to limp everyday. Being in constant pain has begun to wear on him. Our happy little boy has become more agressive and sad. I think he doesn't know how to deal with his emotions at such a young age and has a lot of questions. He remains crazy and we are so proud of him for pushing through this. I know it will end one day, so we are trying our best to get through it now.
As I write this update, Josh and I are away at a cabin in Ok celebrating our fifth wedding anniversary! We are trying to continually find time to work on our marriage and it has paid off :) I am so lucky to be married to incredible husband and father.
Our Scottish Rite appointment is the day after Easter. So please pray for wisdom for the doctors and therapists. We expect to not see much bone left at the femoral head based on the last couple of months. Hopefully, the regrowth will start soon. Also, please pray for patience for us as we continue to try to slow him down and lift his spirit up.

The plan...

Once we had a diagnosis, then it was time to set up an appointment with the pediatric orthopedist. When I called, they said the first available appointment was in April! I had a son in pain who could barely walk on some days and they wanted me to wait four months! I freaked out at first, but was then calmed by a nice friend of my father. This man has a daughter with the same disease. That is quite a coincidence since this disease is only in 5 out of every 100,000 children! He and his family have been very helpful and understanding on this journey.
We called around to some other doctors and were basically told the same thing. It wasn't until a few days later that the doctors office called us after speaking with the doctor who treated us at the hospital and they set an appointment for January 7! That seemed much more reasonable.
We took Wyatt to what he called the 'leg doctor' on January 7, 2010. They took another x-ray and said there was more degeneration in just the past two weeks! He proceeded to tell us that Wyatt would not be living a 'normal' little boy lifestyle for a while. He said the best treatment for now is to keep Wyatt from running, jumping, or putting too much pressure on his right leg. Seems easy enough, but for those of you that know Wyatt, that order seems impossible! Some days are better than others, and the pain and limping come and go on different days. He wakes up at night and cries that his knee hurts a couple times a week. We give motrin as needed on the tough days.
The doctor said he would turn in the paperwork for Scottish Rite Hospital for Wyatt. The medical bills were already piling up from x-rays, MRI, doctor appointments and ER visit!
We found out on January 13 that Wyatt was accepted into their program. That was a huge answer to prayer. A huge weight was lifted from our shoulders once we knew we would be treated by the best doctors in the state and a bonus that it would all be paid for!

The disease...

Perthes is actually called Legg–Calvé–Perthes syndrome. It was named for the three doctors who discovered this disease. It is a degenerative disease of the hip joint, where growth/loss of bone mass leads to some degree of collapse of the hip joint and to deformity of the ball of the femur and the surface of the hip socket. Basically, the blood supply is cut off to the hip, so the top of the femur bone dies and the body absorbs it.
The cause of this disease is not known at this time. It is a very rare disease, so there is a lot still unknown as to the best treatments as well. One of the leading research facilities on Perthes is right here in Dallas!
The goal is to have the bone completely rebuild itself so that surgery or permanent damage does not take place. The disease usually runs its course within 2-3 years.

The beginning...

One morning back in October of 2009, Wyatt woke up and complained that his leg and knee hurt. He was limping but said he still wanted to go to preschool that day. He continued to complain about pain in the groin and knee area for the next couple of weeks. We first wrote it off to growing pains or a pulled muscle since he is such an active little guy. When the pain and limp started to worsen, then we took him in to an acute pediatric facility and they took an x-ray. They diagnosed him with toxic synovitis. That is a condition where the hip is inflamed after the child has been sick with the flu or other infection. They said to give him motrin and he should be better in a couple of weeks.
We didn't see any improvement so we followed up with our pediatrician. He ordered an MRI and again said he didn't see anything prominent. He told us to give him more motrin and watch him over the next week and we should see an improvement. When again we didn't see any improvement, we called the doctor and he said to come back in for more tests. At that point, we knew we needed to see someone else. Wyatt came to me one day and told me something was really wrong with his leg and he wanted me to fix it. I knew it was time to go to the hospital.
Josh and I took him to the ER at Childrens' Hospital in Plano. They did blood work and then a more extensive x-ray. Wyatt sat in the hospital bed watching tv and complaining that he was bored. It's hard to keep this little man contained for very long! The doctor came in and said "Wyatt has Perthes Disease".
It was bittersweet--I was so happy to have an answer for him but hoped it wouldn't be that. Don't get me wrong, we were so happy it wasn't something fatal, but please don't tell me my little boy's bone is eroding and there is nothing I can do! Wyatt listened to the doctor and then asked if we could go home now. The ER doctor said a pediatric orthopedist would call us and make an appointment.
I went home and felt relief for a diagnosis, but was also overwhelmed with the thought of trying to keep Wyatt still. Wyatt came in our room that night and told us it was okay because God would heal his leg! What an inspiration! Sometimes we need a four year old to get refocused.