Tuesday Appointments

Today we went straight into the therapy department where we met with PT and OT and the upper extremity specialist - Dr. Gogola. She thinks Peyton has lots of potential too. She says she wants to splint and stretch for now to see what he's got before they look at surgeries. She said that she would want to give Peyton at least a couple of months before we schedule an elbow release surgery. Since his elbows have really not been stretched, we don't know yet if we can get any range of motion on our own without surgery. And even if we get some of the motion, but not all - it makes the surgery less extensive. Dr. Gogola says another surgery he might have to have is to remove a wedge of bone from the top of his wrists to enable them to uncurl into a more neutral position. Once again, we might possibly could achieve this without surgery so we'll see after a few months of splinting and stretching. There isn't much they can do for his fingers - other than a surgery to move his thumb out of his palm if splinting and stretching don't work. If the fingers are stiff like his are, then sometimes they loosen a little - but basically what he's got is what he'll have. I asked them what their opinion was of the severity in his case - on a scale of 1 to 10 they give him a 5. So that's good! They think he's doing wonderful right now and are definitely impressed with his head and trunk control, not to mention his leg muscles - the quads and hamstrings. They try to stretch his knee and he resists them - they really struggle to make that right knee bend because he fights them.
So we went over to the Children's Hospital to get the ultrasound of his groin area. We don't know the results yet. We'll find out tomorrow. The ultrasound tech did say she saw a lot of fluid on the right side of his scrotum. But she would not say anything further about a hernia. So we'll have to wait and see tomorrow. The Shriner that drove us to and from the Children's Hospital needs to retire his driver's license. He pulled out in front of 2 cars - nearly causing them to smash into us and then he hit and ran over top of every curb downtown. The van was all over the place. And he didn't react at all except to say that thing was worse than driving a Greyhound bus.
We went back to Shriner's for another round of therapy and they made Peyton's knee splint today. They also are going to do away with the taping of his feet by the end of the week and have him in AFO's (the ankle/foot splints that strap on). We're excited about that because we were looking at having to change out that tape every other day at home by ourselves and trust me, it is not an easy task. The taping took the therapists a good 45 minutes to accomplish so you can only imagine how long it would take us! Especially with a toddler running around trying to grab at it and rip it off I'm sure!! So anyway, tomorrow we'll also get at least one elbow splint made - we're not sure about one of his elbows because it is extended so tightly with no bend it is hard to make a splint right now for that until we get something to work with. One of his elbows will bend just a tad so they can work with that. Also they're making a strap for him to wear at night only to position his left leg correctly - knee in the front of his body.
So that's it for today. Tomorrow we report directly to orthotics first to get his AFO molds made. And then on to therapy for a couple of sessions. We don't see any doctors tomorrow other than just to get the results of the groin ultrasound.
We talked a little more today about the frequency of our visits to Houston and the therapists would like us to come back in 2 weeks. So it looks like we'd be coming here bi-weekly for now.
Also a lady from Airlift Hope America emailed me back today and said that Peyton does qualify to ride on their planes. There's an option if Angelflight doesn't work out. I think we're going to be covered as far as our airfare goes from the way it sounds - of course I could be wrong but I think they will help us. The doctor said that Peyton can ride on those small planes - she didn't see any reason why he couldn't.

1st full day in Houston

We arrived in Houston yesterday around 4pm central time. Our flight was terrible. The first plane to Memphis we had no air conditioning. You can only imagine. Peyton was wringing wet and miserable. The second flight into Houston was delayed about an hour because they decided since there was some severe weather around the Houston area they needed an extra 1,000 pounds of fuel. So they added all that and then decided it was too much weight since we had a full flight and all the luggage. Then said they would have to take some of it back off. Only the crew didn't know how to take it off once they add it on there so the pilot had to go park the plane and fire the jets to burn the excess off. By the way, this was Northwestern Airlines. We won't use them again - that's for sure.
Anyway - we found Shriner's last night and it is in a hospital complex of about 20 hospitals - no exaggeration. They have a huge downtown skyscraper section dedicated to nothing but medical facilities. And then the actual business skyscraper section is on the other side.
So let's get on with the appointments today. We arrived at Shriner's at 7:30 and his first appointment was at 8 with the therapists and physician's assistants who evaluated his overall function. You could tell these people knew what they were doing as soon as they walked in the door. They were so knowledgable and didn't miss a beat. They measured every angle of every joint and looked over every square inch of his extremities. We will see the therapists every day this week - twice a day. Then the lower extremity specialist - Dr. Barnes came in to talk to us. Peyton had x-rays that confirmed that his right hip is NOT dislocated. And then also his left hip MAY NOT be dislocated. It's inconclusive right now until his bones ossify a little more. Which means this - if we find out later (they will repeat the x-ray next month) that the left leg IS dislocated anteriorly (towards the front of the body) then they will not do surgery to put it back. If it is dislocated posteriorly (toward the back of the body) or to the side, then they will put it back in. The reason they won't if it is anteriorly dislocated is because it won't stay in. Rarely is it successful. So he will just leave it as it is. But overall, they will not do any hip surgery until he has at least a 60-90 degree bend in his knee because the cast won't stay on with a straight leg.
Then we discussed Peyton's knees. His left leg is rotated to where his knee is on the side of his body. They will not do any surgery on that unless they have to and it won't be until later on - like a couple of years. If they see that is something holding him back from walking then they'll fix it. For now they will just stretch the joint to bring it back to the front as much as possible.
As for his feet - they need to get just a little more progress before they clip his achilles tendons. So he will have lots more stretching and TAPING (they tape the feet instead of using plaster casts if possible).
We discussed a lot of things with the doctor that this email just can't contain. It really would be a novel - but I am trying to cover the most important things. Tomorrow we have to take Peyton to a different hospital to have an ultrasound of his groin area. The doctor suspects a possible inguinal hernia so he wants it checked out. It may just be a fat roll protruding but he says it is very common for arthrogryposis kids to have hernias develop.
So Dr. Barnes wants to see us back in 4 weeks. We went to lunch and then reported to therapy where the occupational therapist made Peyton's hand splints and stretched his arms and wrists. She said that she will wait on the elbow splints until the upper extremity specialist, Dr. Gogola, sees him tomorrow. One of the first surgeries Peyton will have is one to release his elbows. They will snip some tendons to make his elbows bend. They do this as early as 5-6 months old. Then the physical therapist came in and stretched his legs and feet. She began the taping process of his feet - check out our pictures - you can see his new splints and his taping. And again, they will snip his achilles tendons once they get a little more flexible (we'll probably accomplish this over the next month). He will have to wear casts for 3-4 weeks therafter and then once his tendons have healed he will go on to AFO's - ankle foot orthotics. These are more or less splints for his feet. He'll wear these for years to come. More often in the beginning and then I think it just will be night time later on. I could be wrong. He will get knee splints tomorrow. All the splints will need to be adjusted every week - so we'll probably be coming here often for a while. We will discuss the frequency of his visits either tomorrow or another day this week and I will let you all know for sure what we're looking at as far as travel. But they did give me a handout on stretching exercises to do at home and it is possible for me to do what therapy he needs myself - in addition to our therapy visits at home - and then let them follow up with us once or twice a month.
Tomorrow we see Dr. Gogola. At that time we will find out more about his upper extremeties. Thursday we see the neurologist and the geneticist. And then of course every day we'll be in therapy twice.
It was alot to take in - but we're impressed with the way they took care of us today. Everyone we saw really stressed how much they've heard about us and they've been waiting all week for this appointment today. They said Becky (the director over occupational therapy) talked about us nonstop and really wanted us here. So we're probably going to go ahead and cancel New York.
We'll give more details tomorrow if we get a chance.

Just a short note...

Today is Tues. and we fly to Houston Sun. Morgan is gone to her dad's for 12 days - they're going to the beach. She was so excited. We'll miss her being away for so long! Chad has been sick, Brady has been sick, and now I'm sick. Hopefully I will be better by Sunday. And I pray Peyton doesn't get sick. That is the absolute last thing that he needs. This weekend is another benefit yard sale for Peyton at the fire dept. Hopefully it will turn out well with our newly added airfare expense and all. Our plan is to get back home on the 4th, get the house ready for our race renters, and then as soon as they leave stick the house on the market. Shriner's is currently investigating getting our airfare and lodging expenses paid for by the local Jericho temple. The deciding factor will be if Greenville has an arthrogryposis clinic. If they do, no matter how good or bad it is, then we'll have to pay our own way to Houston. I'm waiting on an answer still but will post the info as soon as I find out. IF our travel goes unpaid, and therapy goes unpaid, we may have to move to Texas for a few years. We simply can't afford hundreds per week in therapy here at home plus airfare. We don't even know if we'll be able to afford the airfare alone for much longer. And his medical treatment is a high priority, we can't deprive him of that. But anyway, those are just thoughts right now and we won't know more until we get more answers and we get back from Houston. To be continued. . .

Another Change of Plans!!

A lot came up yesterday and I was just about to lose it. I got an email from the director of occupational therapy at Shriner's in Houston asking us to come there for Peyton's care. She also mentioned that their doctors are not at all impressed with Shriner's in Greenville program for arthrogryposis. She said they could get Peyton in to the next arthrogryposis clinic which is Aug. 2. At first I thought this was going to be the 3 month program she spoke of at the convention where they do therapy there twice daily for the first 3 months - then taper down based on the child's needs. She went on to say how experienced they are there and how she felt Peyton has a lot of potential. I was so torn!! I was very impressed with their presentation at the convention and thought that would be a good option for us as well. My thoughts instantly were what to do about the other two kids. Morgan starts back to school in a couple of weeks and I just have to be here for that - especially since it's a new school this year! I just don't think I could be away for so long. So I emailed her back and told her my fears and also about our appointment with Dr. Van Bosse in New York. Her response was that it wouldn't be for 3 months - it would just be long enough for them to get splints made and get therapy going and let the doctors evaluate him. Then they would send us home with materials for our therapists here to follow. Well that made me feel better knowing it wouldn't be for so long. I told her I would have to talk to Chad about it and we'd make a decision together. So then we get a call from TEIS (early intervention) telling us that there could be a problem with them paying for Peyton's therapy if it is going to be so frequent now. They said going everyday would cost $1000 or better each week and they have never had such a request. So please pray for that one because we still don't know what the outcome will be for that. I did call our insurance company to see if there was anything they could do as far as giving him additional visits based on his medical diagnosis. I had to leave a message though. We have a yearly cap of 90 visits. He would max what's left of those out in 2 months! And he still doesn't have TennCare. We're hoping to get SSI approved and at least just have the insurance but we're still waiting for an answer. Well Shriner's called me today begging us to come on down there. She said she spoke to their doctors and they really want us to bring Peyton to Houston. She said they want him down there before the clinic - come Mon. and leave Fri. And their whole team can evaluate him. After a lot of thought and prayer, we decided the best path for us is to cancel Greenville (Shriner's), go to Houston, and then still go see Dr. Van Bosse in New York on the 14th. We feel that would be best for him right now considering we have already wasted 3 months of precious time (I blame ourselves for not shopping around for a doctor from the start and getting 2nd opinions). We need to keep a couple of doors open and if ever we feel that all his needs can be met in one place, we'll give up the other. So we leave for Houston on Aug. 29 and will return Aug. 4. Not too bad. Airfare is going to kill us - but we don't have to pay for a place to stay when we go to Shriner's - they have a place in the hospital for us. More than likely Chad will only be going part of the time and I will be on my own a lot. We just can't afford plane tickets for both of us since obviously we'll be traveling often for many years to come. We want Peyton to have the best of care no matter what it takes.
So please remember us - we're in for a long, emotional, stressful, and expensive journey. It will be quite rewarding in the long run for Peyton though.

Appointment Change!!

Ok Dr. Van Bosse emailed me last night to check and see if we were able to schedule the appointment. But he said that the clubfoot clinic that is held weekly is where we need to start with Peyton so he can immediatly get started on his feet - that means the Achilles Tendon Clip that I want him to have! So I called the office this morning and got it changed - it is no longer Sept. 7, it's Aug. 14 now. Two weeks hopefully will be plenty of time to make our decision after Shriner's and make travel arrangements. I have a feeling we're still going to stick with the appointment because I don't think Shriner's does that procedure and that is for sure the way we want to go with his feet to reduce the trauma he'll have to go through - 7 weeks in casts is far better than 1 whole year. It would be hard for us traveling wise - but it breaks my heart to have him miserable in those casts for so long.

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!!

Here is the hotel where we are staying

This is the hotel in Texas where we're staying and where the convention will be held.
http://www.cpsuitesarlington.com/

The Casts are OFF!!

I took Peyton to have his casts removed today. Well, actually have 1 cast removed. The other actually fell off on its own this morning. I could've saved a trip to Knoxville if I could've got the other one off too!! I'd never get that lucky though. So anyway, he gets a break for a little while. His ankles have pressure sores, bruising, and his skin is cracked all over. I'd say he deserves a break. He's actually scheduled to be recasted Tuesday, a week from today but I think I will reschedule and give him a little longer. He needs it so badly. I look at his feet and I want to cry. If you barely touch them, he WAILS. But they look good otherwise, casting is doing a lot of good so far. The doctor has now decided he wants our therapist to be working on all of Peyton's joints, not just the shoulders. I tell you, I am going to lose it. If you read the last post, or maybe it was the one before that one, you'll see what the last encouter was all about. He asked me today, "so how is the stretching of his wrists coming along?" I was like, what stretching?? They said they didn't want to bite off more than we could chew so we're just doing the shoulders. He said no no no he wants ALL the joints to be worked on. I said it before and I will say it again, I CAN'T WAIT TO GO TO SHRINERS. Thankfully I do stretch his wrists a little on my own, but not anything they've shown me - Duke taught us that. I have received alot of great guidance from the other parents with the support group I joined. Their kids got the works early on AND SPLINTS. Peyton's getting the shaft because there's no doctors in this area who know enough about his condition. Just a little aggravated today I guess....
But we fly out Thursday and I can't wait. Hopefully we get lots of good info and links to resources while we're there. We'll tell you all about it when we get back. . .

New Firsts

We spend so much time updating about his progress medically that we never take time to tell of how he's doing just as a normal baby!! Peyton turned 3 months old on July 2. He can smile, laugh out loud, coo like crazy and tries to turn over. He can make it over onto his side. He follows your voice and will listen to you talk to him all day long. He sleeps all night long (with the help of cereal in his formula) and stays awake so much more through the day now. He loves lights and music and anything with bright colors. He hates shrill voices (Brady's screaming specifically) and hates a dirty diaper. He has more strength in his right arm and will actually try to lift it up when he gets excited - he even makes it a couple of inches above his body level when laying down! It seems as if he is trying to reach for stuff! He gets fussier after being held for so long, his body just can't take it. He wants to be held, but I think he gets sore. So he still cries if you lay him down. Sometimes we just have to let him cry it out =(. He slept right through the fireworks last night. We thought for sure he'd wake up but he didn't! He's getting chubby - and the hair has yet to thin out. It just keeps growing! Morgan and Brady do so well with him. They love him and it shows. Morgan is so proud of him; she'll just walk up to people and start talking about his arms and legs and what's wrong with him. I'm anxious to see her reaction when we go to convention and she meets so many other children with the same condition. He's a pretty easy going, layed back baby for the most part. The only problems we have are keeping him comfortable at times, and then when one of us is alone with the 3 kids through the day - Brady wants to play outside from the time he wakes up until he goes to bed at night. Poor Peyton can't tolerate the heat with his casts so we're in and out like mad checking on him. A lot of the time Brady just has to suffer and stay inside - we usually can only go out when Peyton is napping. Thankfully we have people to help from time to time with one or the other so the day isn't so difficult and neither child is miserable. And of course Morgan isn't responsible enough to keep an eye on him outside, she gets too involved in her own play and he could hitch hike across town before she'd take notice. So anyway- just wanted to add this to the records in case people are wondering . . .

No 3 month xrays

Peyton went to therapy again this past week and also back to be recasted. His orthopedic doctor says now that they won't do x-rays for a while since his joints are still so soft and won't show much detail. He drives us crazy telling us one thing one week and then something different the next week. But soon we'll be with Shriner's so we'll survive until then. We've heard from the therapist that Shriner's and his orthopedic doctor don't mix - he'll pretty much refuse to see Peyton once he finds out we're going. We are glad we haven't let on to him that he was accepted - we don't want him to be treated any different. The occupatioal therapist (works with upper limbs mostly) showed me some range of motion exercises to do at home and also some gentle stretching. All is going to be focused on his shoulders and shoulder blades for now. He thinks that in order to get anything significant out of Peyton's elbows, wrists, and fingers that it will take splints and surgeries. Also he says he just wants to focus on one thing at a time. His orthopedic doctor says he is too small for splints right now. But we'll see what Shriner's will do for him. I ordered a wonderful book on Arthrogryposis that the therapists are actually borrowing to read. It's the only one in print that is recent and easy to follow. It tells all about the condition and the different types, surgeries, therapy, etc. I was so happy to find it. Everything is still set for us to go to the convention on the 12th. Peyton will return to the orthopedic doctor on the 10th to have his casts removed and then no casts will be put back on for a week. His skin needs to air out and heal. It is so red and irritated. It looks like he has an awful sunburn. I feel so sorry for him. At least we won't have to worry about traveling with him having those things on down in that Texas heat. Which Tennessee has some pretty bad heat right now too. We will be so excited to give him his first real bath. He has had only sponge baths since birth - at first because of his umbilical cord stump and then he was casted for the first time before it even fell off. My plan is to let his little feet soak away in warm water and get all that gook off that they've been caking on for weeks to make his casts stick and not slide off. I tried to wash his feet and legs this past time before they recasted him but his skin was so sensitive and he was screaming. And for those who don't know, there is a guy with arthrogryposis on this season's America's Got Talent. His name is Luca aka "Lazy Legs". He is affected in his legs only. He is famous for his break dancing. I had seen his website before and it is truly phenominal what he can do. We're having a yard sale next weekend - pray we get rid of everything! We are desperate to clear out the clutter before the house is listed on the market.