Back from Texas! Be prepared to read a NOVEL

We're home - and trying to recoup after such exhausting travel. It definitely is not easy traveling with kids. Babies to be more specific. Security at the airport is ridiculous. I know all for a good reason but still - if you could have seen what we went through. We had 4 suitcases, 1 huge bag, laptop, carry-on, double stroller, infant seat and base, plus the kids. And then after we checked the luggage we had to go through security which involved everyone's shoes off, all bags including purse emptied into the bins, laptop investigation, infant carrier out of stroller, baby comes out of infant carrier, Brady comes out of stroller, stroller is searched and turned upside down along with thorough search of the infant carrier, and then we're left in a complete disarray to put ourselves back together and make it to our gate before the plane leaves. Thankfully we rented Brady's carseat when we got there. It was well worth it - there's no way we could've managed carrying that around too. So anyway - what a mess it was!!! But the kids loved flying and did quite well. Texas was amazing to see from the plane. It is sooooooo flat. And it was a nice area there too. One of the nicest big cities I've been to. Definitely better than Philidelphia. Oh gosh Philidelphia was a nasty nasty city. And the people in Texas sound just like us!!!
The convention was more than I ever imagined it would be. We learned SOOO much. We had a great time, the kids had a great time - well worth every penny we spent. We definitely are going to make it a point to attend every year. Next year it will be in Columbus, OH.
I don't exactly know where to start! The children were amazing, and the adults too for that matter! Some adults were able to walk, some were in wheelchairs, as well as the children. It really varied as to what abilities they had. Some were unable to move their arms at all, some had very minimal use of them. But no matter how much or little they had - they FOUND ways to do things. These were happy children - the sweetest you'll ever meet. One little girl does everything with her feet - even videotaping. Her arms have no function at all. Peyton will fall somewhere in between on the spectrum. He will not have full use of his arms - but he will have some use based on the movement we see now. Of course I could be wrong but from what we saw that is what we think. I think he definitely will walk. It may take time to get his legs and hips fixed but one day I'm sure he'll walk.
Ok so as far as information goes - oh my gosh - we we're almost hitting overload. Peyton is not getting near the care he needs. I'll say this - he is not going back to Dr. Madigan in Knoxville. There was not one single child there who did not have splints/leg braces, etc. There was not one child there whose hands still looked like Peyton's. A couple of those children included 4 and 5 month old infants. They had been splinted from birth and their hands looked great. So many people asked us what we were doing for his wrists and hands and we told them nothing - the doctor says he's too small for splints. All the mothers and therapists there said they had never heard of such a thing. It was almost humiliating that our child had hardly any improvements for lack of care. It was very upsetting but yet we were so grateful to be able to learn what they were doing wrong here at home. We listened to several speakers - including physical and occupational therapists from Shriner's Hospital in Houston. We learned from their presentation that Peyton is supposed to be in therapy every single day for the first 3 months at least to gain the most range of motion of his limbs. And later that was confirmed by other mothers we talked to. Peyton has only been a total of 5 times to therapy since birth (other than his hospital visits at Duke). The doctor only ordered therapy to be once a week or every two weeks and said that was sufficient. The therapists from Shriner's said it was vital for the kids to receive that intensive therapy from the beginning in order to get the best results. Well Peyton is already 3 months old and past that window of time. That made me sick. I spoke personally to those therapists after the session was over and they gave me some materials to take home outlining what kind of therapy he needs and what it is to consist of. They also said if Peyton was accepted into Shriner's and Greenville, SC location can't give him what he needs and we're not satisfied, or his therapists here at home, we can go to Houston and put him in their program and they would provide housing during the first 3 months when therapy would be twice daily (PT and OT each).
Another speaker we had was a doctor from New York University Center for Joint Diseases (I think that's the name of it) in New York City- a pediatric orthopedic surgeon, Dr. Van Bosse, specializing in lower limb deformities and has special interest in children with Arthrogryposis. He was amazing. And he even let me tell my story of having Myasthenia Gravis to cause Peyton's arthrogryposis - confirming how truly rare that was - he has never seen a person in that situation. He offers several surgical and non surgical options that we are very interested in. One of his patients attended the convention - a 12 month old boy - and he has done wonders for him. One procedure that we will definitely arrange for Peyton to have is called an Achilles Tendon Clip. It is an alternative to the usual heel cord surgery that is used to correct club feet. It requires no surgery - no anesthesia other than local numbing and the end result is better and has less of a failure rate. It is a procedure he would have right off the bat - and then followed by serial casting for 7 weeks after. Then the use of splints would maintain position. Much better option than the plaster casts non stop for the first year of his life, followed by an extensive foot surgery that doesn't alway turn out so well. Basically they just make a pin hole in the back of the heel and just snip his tendon. That releases his heel bone to come down and makes it easier to mold his foot back to a more normal position. The achilles tendon heals back - only with more slack. Then there were other surgical options that interested us but it would take me forever to explain them. I will just explain later on if the surgeries are going to be an option for him and we go through with it.
I got to speak with the doctor afterwards and asked if he was accepting patients and yes he is!
This entry is turning into a book, I know - but we just learned so so much. I want to capture it all on here before I forget it. Everyone was so wonderful and friendly. Morgan played with so many kids who had the disability and she didn't care or treat them any different. She made good friends with a boy who is 9 and has the condition quite severely - he is unable to use his arms much at all. She was trying to shovel food into her mouth using only her mouth just like he was so she could fit in! The Shriner's clowns came and made balloon animals for the kids, they painted on a huge strip of paper and Brady was covered in paint from head to toe. He made footprints all over. We even painted Peyton's feet and stamped them onto a canvas of all the arthrogryposis kids' feet prints (they have the kids do huge painting every year).
So before we left I already had my mind set - I would be making many phone calls when we got home. He went to see the occupational therapist yesterday (his name is Peter) and we told Peter what we learned and I gave him the materials I brought home. He agrees that Peyton needs those splints and that his therapy needs to increase. He is not very knowledgeable about arthrogryposis but I did give him that book which he has learned so much from and he is willing to do whatever we need. I want to give them a chance. So he said that in order to increase the therapy and do the splinting he needs a doctor's order I told him we were not going back to Dr. Madigan but I could definitely get Peyton's pediatrician to sign the order. So we're waiting on that - Dr. Makres is on vacation this week so we'll get that going next week. As far as an orthopedic surgeon goes - we're still going to Shriner's in Greenville on the 31st and then we'll see what they can offer us. If they can't fulfill all of our needs then GUESS WHAT??!! As of this morning I got a phone call from New York - - Dr. Van Bosse has Peyton scheduled to be seen on Sept. 7. That gives us plenty of time to make a decision and make arrangements between the time he's seen by Shriner's and his appointment in New York. If Shriner's can meet our needs all the way then we'll just cancel the appointment in New York for now. If not then we can use Shriner's to get what they CAN provide us with and then use Dr. Van Bosse for the rest. We don't have to choose one or the other. We can just use Shriners for as little as we want - like if he just needs medical equipment that we can't afford to pay for then we can get that from them for free. Or we can receive all services from them - orthopedic, therapy, orthotics/prosthetics, medical equipment, etc. Whatever we want. He's in their system until he's 18 and we can use them as little or as often as necessary at whatever hospital location we choose.
And by the way - the type of arthrogryposis that Peyton has is called Amyoplasia. It occurs in 1 out of every 10,000 live births for reasons unknown. Of course like I said before - myasthenia gravis causing this condition is about a 1 in a million chance.
I'll end this for now. I can't think of anything much else to say of importance. I am so glad we went - I think the Lord put it on our hearts to go to show us we were on the wrong path for Peyton and to allow us to meet other families to see that we're not alone and there are others who know how we feel. I have no regrets about the trip - just hate that it couldn't have lasted longer!!