Where do I start?!

I get worse and worse at this as time goes on. I never discipline myself to get on here and keep up with this like I should. I do this so people of course can keep up with everything but also so we have a "diary" for Peyton.
We went to Houston a few weeks ago and I never posted anything after that because we had just made it through Morgan's birthday, and were approaching Brady's birthday and Halloween. After that we got in over our heads with all kinds of different therapy for Peyton and it's just been hectic.
The last trip to Houston was a short trip, lasting only 2 nights. He did get his hip/leg splint which he hates, and we hate too. It is not user friendly at all. I will have to upload some pictures one of these days so you guys can see what we're talking about. I haven't put updated pictures on here in so long everyone is going to think we traded Peyton in for a different baby when they see him!
He did see the nephrologist there in Houston and basically we know nothing more now than we did before. The renal scan really wan't the right test for his needs. So all that for nothing. Except we have the peace of mind that no matter how bad his right kidney is, the left is compensating for it and he has adequate kidney function as a whole. But we still don't know the cause. The nephrologist referred us to a urologist there in Houston which we'll be seeing Dec. 5. She's going to let this doctor evaluate Peyton and order whatever testing he needs to figure this thing out. Our next trip to Houston will be Dec. 2 - 7.
Other than that, we did the normal routine with therapy and headed home.
Since we've been back I've started Peyton with massage therapy which is really supposed to be quite helpful with his muscle condition, and also started seeing a chiropractor in Johnson City who is really the pick of the litter, haha. Quite different than anyone I've ever seen. He feels like he can make a tremendous difference in Peyton's overall condition so we will try it out for a couple of weeks and see what happens. And he now has an occupational therapist coming to the house 3 evenings a week so it gives me a much needed break from the torture. She is a very nice lady, but has a different approach than the therapists in Houston. She is very gentle and doesn't overdo anything by far. Her opinion is that therapy should never hurt and they should never cry in pain or discomfort. Well she's breaking herself in because she's now seeing that's not as easily avoidable as she first thought in the beginning. At first I felt like such a bad mom when she expressed this to me but I have to think too that Peyton has come a LONG way and made HUGE progress in just a few months with what we were taught to do from the folks in Houston. Down there they believe in aggressive therapy (well they don't kill him or anything) but what they have shown us to do with them has definetely been working. But anyway, we're just glad to have someone else here helping with it and it can't hurt, that's for sure.
We had the kids' pictures made and got the proofs back. We were so excited! They're so good!! Peyton's first pictures - how bad is that? We just have not had a chance until now. We did attempt it at one point but it was a disaster so we walked out. I realize you can get good deals at places like JCPenney, Sears, Walmart, Target, wherever; but when you've got three kids and two are babies it just doesn't work out as well as getting a private photographer to actually take time with your kids.
A couple of more things before I close - we are so blessed to have had our church take up a special Thanksgiving offering to fund Chad's plane tickets. While it's not medically necessary for him to go, as a father he wants and needs to be there and so this has been a huge relief for us. It takes a large chunk of change to pay for 1 or 2 plane tickets each month!
And our massage therapist referred Peyton to the marketing director over Greystone Healthcare for a big fundraising event. They are remodling their facility and will host a big silent auction where all proceeds will go to him. Usually they donate to a charity of some sort, but they wanted to give to a child more local so they chose Peyton! We will have him on the 12:00 news with WCYB to advertise and spread awareness of his condition, and also in the paper and on the radio. Well that's their plans so far anyway. We will be going to a meeting Tuesday at the facility and will find out more details.
Tomorrow we go to Duke for myself. I meet back with my neurologist about my own condition and get re-evaluated. He will get to see Peyton so that's exciting. He filmed him after he was released from the NICU before we came back home. He was so amazed back then that the child even survived. I can't wait for him to see Peyton now.
Well I guess that's all I've got to share for the time being - I will report back as soon as I get a chance when we get more news. Keep praying for our little guy . . .

Back from Houston 3 and Renal Scan

We are a little behind on updating everyone but here is the latest news.
On Oct. 4 we took Peyton to JCMC for his renal scan which turned into a disaster. First they didn't even have the doctor's order for the procedure so I had to drive back over to Dr. Wattad's office and demand it on the spot as we were 30 minutes away from his scheduled scan.
Once we got him checked in and back to the room the first step was to try to get an IV started. They were completely unsuccessful. We couldn't get the scan because nobody in that hospital could find a vein. He was turned into a little pin cushion. After 6 hours and no luck we gave up and told them we would just let Shriner's schedule down at the children's hospital in Texas it if they would. We were so discouraged and exhausted.
I called the lady that handles outside procedures at Shriner's and she is a wonderful person. She goes totally out of her way for us every time I ask her for anything. She is always willing to help. She said it was no problem and to bring my doctor's order with us when we came down there and she would take care of it.
So we left on Sunday, flying out of Nashville, and stayed through this morning. The local Shrine temple provided tickets and they drove us to the airport and picked us up. They were very nice and it worked out well. It was just a LONG trip. We prefer Knoxville airport but the tickets were free from Southwest Airlines and they only operate out of Nashville.
We had to stay in a hotel this time, because the parent rooms were booked up. On the first day - Monday - Peyton went to therapy and orthotics and they immediately got started on new AFO's and splint adjustments. They said that Peyton is continuing to make good steady progress and looks great! We took the order for the renal scan to Laura and she was able to get the scan scheduled for Wednesday morning. Tuesday was pretty much the same routine - more therapy and Peyton is learning to use his hands to play! He will raise his arms to touch the toys you put in front of him and will even pop bubbles with his arms too! He is doing really well learning how to sit up by himself and the therapists really want us to work on that between now and the next time he comes back. He is so smart - even though he doesn't have the strength to completely raise his arms up, he will compensate by arching his back or rolling to the side and throwing his arm out and over. He also will thrust his body around in his bouncer to make his toys shake around and then will stop and watch them move until they quit and then he thrusts his body more. It truly amazes us when we think of how far he's come. The lower extremety doctor saw him that afternoon and told us he was setting up an appointment for Peyton to see a kidney doctor there in Houston from now on so we don't have to fool with it anymore. We were so relieved. He told us he wants Peyton to wear a hip splint to line his lower body up. His hips and legs kind of sway to the right and that needs to be corrected. It is something he will only wear while sleeping. He spoke to the orthotist and they took a mold Thursday of his lower body. The splint will take 3 weeks to make. The doctor also got the appointment for the kidney specialist lined up for 3 weeks from now so that we can get everything at once. So we will return to Houston on Oct. 28-30. It will be a short trip but Brady's birthday is Halloween and we just have to be back home. The doctor also told us he believes his left hip is dislocated - he is more sure now. And his right knee is internally rotated. So not only is his left knee not in the right place but his right one isn't either. We can't predict right now what they will do for that other than therapy. We just have to wait and see when the time comes for him to stand and maybe try to walk. But it's a good thing we found out about that knee because we had been told to bend it straight back like a normal knee and I thought something was wrong with that - it just didn't feel right.
So Wednesday was the renal scan which was SUCCESSFUL!They were able to get the IV started and it only took 2 sticks. They had to insert a temporary foley catheter to keep his bladder emptied during the scan. They ran saline, lasix, and a radioactive injection through the IV. One thing of concern during the procedure was that even though he had the foley cath, his bladder never emptied. The nurse had to manually draw the urine out with a syringe. His bladder was huge on the TV monitor. We don't know the results yet but the nurse did say that his right kidney retained some of the radioactive stuff so that means it is not functioning 100%. We don't know how bad it is, or if it is still within normal limits. The report should be in this upcoming week and Shriner's is supposed to call us. Basically the scan is accomplished by watching how fast the kidneys process the radioactive stuff and passes it into the bladder. It is a timed 1 hour procedure. They take pictures of the different stages thoughout and how the stuff empties from his kidneys. The injection is radioactive so that the machine detects it as it moves through his body. I don't understand nuclear medicine enough to explain it any better. But we watched a TV monitor the whole time that showed his kidneys and bladder glowing white from the radioactive stuff and then eventually his kidneys became darker and darker as the stuff was passed through and then his bladder stayed bright white and grew huge. But the right kidney never got as dark as the left. Some of the white stuff remained which means there is decreased kidney function. He did great - slept through most of it and was wore out the rest of the day.
Thursday we went back in for his hip splint mold - which was MESSY!!! He was covered in plaster - it was even in his ears. He also went for more therapy and they took measurments of his joints but we haven't compared them to last time yet. We're sure he has made tons of progress. We saw the upper extremity doctor at the end of the day and she just said to keep up what we're doing because at this point she does not see any need for surgeries until he is not making any progress at all. She is always so positive and sees so much potential in Peyton.
We also picked up his new AFO's which are significantly larger than the last pair - he is really growing!
I gave a note to the therapists to give to the pediatrician before we left. The pediatrician is handling the renal scan results when they come back in. We were still pretty concerned that his bladder wouldn't empty during that procedure and wanted to be sure that she knew about that incident. It just struck us funny because also on the MRI they did of his spine where they originally found the hydronephrosis of his kidneys, they mentioned that his bladder was markedly distended to the level of his kidneys. That means it was much larger than normal. We are thinking there is something wrong with his bladder that is causing the problem with his kidney. The specialist here at home mentioned something about a neurogenic bladder when we went for that consult a few weeks ago. He said that he didn't think that was it so we never thought anything else of it until now. After I researched it a little more - it sounds like a possible match. I won't go into detail with what that is - for those who don't know you can look it up and read about it. I have turned this blog into a novel already.
We flew home early this morning. We didn't get in from Nashville until late this evening though. We are really exhausted and so happy to see Brady! Morgan had to leave for her dad's before we got in so sadly we don't get to see her until Sunday.
As soon as we get word from the doctor at Shriner's I will post a new update.

Crash

We heard from Shriner's Thursday about Peyton's foot surgery. They had the entire board meet last week about him and they have decided they will not do any surgeries until he has a kidney operation. They will not risk losing his kidneys with the anesthesia. Dr. Barnes has said that he wants us to seek a second opinion from Duke as soon as possible because they do not agree with the doctor here just letting him go like he has - they believe he is in fragile condition. Needless to say we were pretty upset. After an entire day of phone calls, messages, and return phone calls we finally got a schedule going for this month. We were able to have Peyton's renal scan moved up to this Thursday - Oct. 4 at 1:30. Then we're going back to Houston the 7th or 8th through the 11th so we can get him some new splints. He has almost outgrown all he has. And we'll also be able to sit down with the doctors and sort this stuff out. We are hoping that tomorrow Shriner's will call the kidney specialist here and get on the same page. The kidney specialist is clearing Peyton for surgery and says there is no reason why not. So we really need for these two places to get together and see what they can come up with. Dr. Makres called me yesterday and counseled me a little bit about the whole situation which was quite helpful. He says before we take him to Duke we need to check and see if Dr. Preston Smith, a urologist in Knoxville, will see Peyton and give his opinion. He says Duke has no advantage over him unless he is just uncomfortable with Peyton's arthrogryposis. So he is going to call this doctor tomorrow and find out. Maybe we'll get this worked out! I feel like this renal scan will be the determining factor. And it could boil down to us taking Peyton somewhere else for treatment of his arthrogryposis. So of course, as always - - MORE WAITING. We will update on that again soon.
As for Morgan - she had her colonoscopy this past Wednesday and all is well. She has a perfect healthy colon and there is no sign of damage from the chronic constipation over the last several years. The child doesn't even have the first hemmorhoid which is hard to believe. It was a tough couple of days for her but she sailed right through it and is back to her normal self. We will just have to keep her on stool softeners and practice better bathroom habits. That's all we can do! Her diet is perfect so it's not that.
Just pray everything works itself out with Peyton's treatment.

A couple of more things...

I failed to mention in the last 2 blogs that Peyton got his SSI! It was definitely a BIG surprise. We thought for sure we were above and beyond what they allow but they have a strange formula they use to figure it up. We won't complain though - it is a huge blessing!
Morgan has been having some problems lately with her bowels. Last week for the first time in her life she had diarrhea for 6 days. We ended up in the ER with her Tuesday night because she was passing blood and mucous. No stool at that particular time - just blood and mucous only. They sent her home from the ER and said they could find nothing - they even did an exam on her and felt no abrasions or hemmorhoids. So anyway the diarrhea continued throughout the week along with the bleeding and we ended up at the doctor Friday morning. The doctor did another exam and he confirmed again he felt nothing. He is sending her to a specialist to have them get her in for a colonoscopy. Her initial appointment for a consult is this Thursday. Most anyone who knows Morgan knows what a tough time she's had over the last 3 years with chronic constipation. She continues to battle it and now this bleeding is just worrying us. It has stopped along with the diarrhea but we need to see what is going on . She has just been through too much for too long. So we'll let everyone know about that too when we get more info.

We have a little news...

The nurse called today with the results from Peyton's blood work. It is showing normal kidney function. She wants him to come back in the morning to do a repeat urine culture due to the bacteria that was showing up on the last one. She said it could be that the bag was contaminated but they need to be sure. So if all is well with that he is definitely clear for surgery on his feet. She did go on to say that the doctor reviewed his ultrasounds and the right kidney is definitely worse than the left (the left is only mildly affected) and they want him to have a renal scan - which they are scheduling but we don't know the date yet. They will insert an IV and run this radioactive substance through his veins to see how it flows through the kidneys. This way they can see what exactly is causing the urine to back up into the kidneys. Possibilities are a blockage, ureter narrowing, connective tissue or something cutting off the flow, etc. Whatever it is may require surgery to fix. But it is pretty certain at this point that he does have fully functioning kidneys. God is taking care of him!
Hopefully this week we'll have our next trip booked for Houston. I will post again as we get more info . . .

Peyton's Kidneys

Peyton went to see the pediatric nephrologist this past Thursday. The doctor seems to know his stuff and treated us very well. He weighs 14lbs 12 oz - so he has gained more than a pound since we were in Houston last time! They took urine and blood for testing. They had to draw the blood from his femoral artery - it took several tries. We felt so bad for him. The doctor talked with us for a while and ended up sending us to JCMC for ultrasounds of his bladder and kidneys. We could tell by the look of the ultrasounds that his right kidney is pretty bad. The ultrasound tech even agreed. It was huge and full of these black areas indicating fluid. The left kidney was not near as bad. The ultrasound tech said that in his opinion if he had to rate the severity of the left he would say mild. Based on that we are forced to believe that the condition of his right kidney is moderate to severe. The radiologist was supposed to come in and talk to us but at the last minute she said she needed to call the doctor and speak with him first and then let him talk to us. We have yet to hear anything back. We have been on edge the last couple of days. We're so worried what they're going to say. When you research hydronephrosis (the condition he has) there is a broad spectrum of situations. It ranges from a doctor just placing him on observation with or without antibiotics over the next year to see if it worsens, all the way to kidney failure. Please pray for Peyton! He just doesn't need this - he is going through so much already. We will hopefully know something Monday. I will be ringing their phones off the hook at the office if I haven't heard anything by lunchtime. The good news is that if Peyton's blood work comes back normal he is clear for surgery on his feet! They are looking for increased levels of creatin in his blood which would indicate his kidneys not functioning normally - and of course any signs of infection. They called us today about his urine and said that there were some things in his urine culture but they aren't sure if it was just contamination or something trying to start up. There was so little of it - whatever it was. And he has had no fever or anything so we will just watch it. And one praise is that he is in no pain - that is a major plus. AGAIN- PLEASE PRAY FOR HIS KIDNEYS!! I will update again when we have some answers.

Great News!!

Peyton got TennCare! We got the letter today!
Nothing else new but just wanted to share that with everyone!

Round 2 Houston

It has been a very hectic couple of weeks for us and we just haven't had a chance to update this thing! We're so sorry because we know there are some who check all the time.
We didn't have internet access this time in Houston - our modem was broken and we had to get a new one.
Our trip was quite interesting this time - it seems like there is always a story to tell. We flew Continental Airlines this time around - using the complimentary tickets they provided us. We barely made it on the plane - I mean BARELY. It was nothing but an act of God. We checked in for our flight via internet earlier in the day. Our flight was to leave Knoxville at 5:55 pm Saturday. We arrived at the airport an hour in advance ( going on what the Continental website advised for a smaller airport) to find NO ONE at the ticket counter to check our baggage. We already had our tickets - we just needed to check our bags and get through security. Chad was parking the car and I stood there with Peyton and we waited and waited. Beside us was another group of girls waiting check baggage for the same flight as well. Finally a security guard came around the corner and apologized saying it was too late, the plane had already been loaded and they have closed the cargo area up already. He said there were no more flights leaving that evening and we might have a chance at another flight the next day - but most were booked up due to the holiday. I was devastated. Chad came through the doors right at that time and I told him what was going on. The other group of girls was arguing with the security guard but he just said too bad. I walked up to him and said look - we have got to catch that plane. We told him that Continental provided those tickets to us for our medically needy infant and we have got to get to a hospital in Houston. With that being said, the security guard said well in that case let me go speak with the Continental staff. He said that we should have been there and through security at LEAST 2 hours before departure because on weekends the ticket counter staff also have to go work security and they finish up early. 2 hours in advance??!!! That is crazy. Knoxville airport isn't squat to some of the airports we've seen and there's no reason they should put people through that because they under staff their airport on the weekends (a holiday weekend to beat it all too). So anyway, within 10 minutes he was back and told us they were going to open the cargo back up and let us on. Boy were we sweatin'. Thanks to us, the other group of girls got to go ahead and board too. See - Peyton blesses the lives of others everyday - even ones he doesn't know.
Sorry for that long story but thought it was worth sharing. We got to Houston and this time we stayed in a parent room inside the hospital which was just like hotel room. We had access to everything we needed. He went through the usual routine of seeing the doctors and therapist the first weekday we were there. The doctors and therapist were so amazed at his progress over the last few weeks. He has made leaps and bounds. Some of his joints have improved as much as 40-50 degrees. It is truly amazing. They even said he was ready for the foot procedure (where they clip his achilles tendons). He had his MRI on Tuesday morning. He SAILED right through the anesthesia part with the exception of his IV access. They tortured our poor baby trying to run a line in his foot. They gave up eventually and ran it in his head. Not before infiltrating his foot with saline though. His foot was blown up twice the size it normally is and when you pushed on his skin, saline just oozed out. It scared me to death. He was all bruised up and had little holes everywhere. We have good news and bad news with his MRI results. His spine is OK, no defects - everything perfect. However, his kidneys have apparenty worsened. When I was pregnant they told me he had some kidney reflux and his kidneys were a little larger than usual. Its called hydronephrosis. But while he was in the NICU after his birth they did an ultrasound and ran some tests that confirmed it was going down and it should end up self-correcting. It actually is somewhat common in little boys and only a select few end up having surgery to correct it. We now are afraid that Peyton is going to be one of those few. We have to see a nephrologist here at home and get him checked out. Shriners will not do his foot procedure until this is rectified or the doctor clears him for surgery. We were supposed to go back on Sept. 24 to have his surgery for his feet but now his kidneys will probably set us back. We got a referral to the only specialist in the tri cities and he can't get Peyton in until Oct. 16. I will be calling daily to see if there are cancellations he can fill though. Hopefully he will be seen sooner. We will have to get back to Houston pretty quickly if his surgery is going to be delayed because he is seriously outgrowing his AFO's and they didn't have time to make new ones on this trip. They didn't want to fool with it at first because they were expecting him to have the surgery at the end of the month and it would be a waste. So they just made adjustments to them to try to get him through.
Well if I think of anything more I will post more tomorrow. It is late and one of our babies has woke up. Sorry for the sloppy grammer throughout - I was in a hurry.

Getting Ready for Another Trip

It's been a while since I've posted anything but it's been hectic around here. We're getting ready to move in with Chad's parents and getting the house ready for the race renters and ready to sell right after.
We signed Morgan up for cheerleading this year! She is so excited!! I am so glad to get her into something WITHIN the school. She was involved with dance before so we're trying something different. If it doesn't work well then we'll try sports.
We've been doing Peyton's therapy all on our own and it is working out so well! It's heartbreaking but yet we're seeing the progress from a better prospective and it's truly amazing how God is just moving things right along for him. We're getting lots more out of his elbows now. And his wrists are doing WONDERFUL. Please pray for this next trip which will determine if anything is wrong with his spine. Also we may have some surgeries set up by the time we leave. Our travel dates are Aug 25 - Aug 30.
We will definitely update the new info each day we're there if we're able. If I think of anything else new to let everyone know about I will post again tomorrow but the battery is about to die on the laptop. Check out the newest pictures!!!

Home from Texas

I have been a little busy over the last several days and missed getting to post information from Peyton's last appointments while we were in Texas. The MRI fell through last Friday. After starving Peyton from midnight until 12 noon the next day we found out they could not do the MRI without him being formally admitted into the children's hospital, put under general anesthesia, and staying overnight for monitoring. They said children with Peyton's condition are at high risk for an adverse reaction to anesthesia called Malignant Hypothermia. They want to be very careful and watch over him afterwards. The normal sedative they give to babies for MRI's is not safe for Peyton. So we will have to have the MRI done during the next trip to Houston. We were not happy about having starved poor Peyton all morning long while they dragged their feet to get this information. They said Shriners did not give them any information on Peyton or his condition - which I find that hard to believe. The hospital admissions dept. had not even called to verify insurance by the time we got there that morning and we had to sit for over an hour just for that. They had been given the information the day before. Sounds to me like the hospital was just flat out unprepared and dropped the ball.
Peyton got his new AFOs and his derotation strap for his leg on Friday too. He tolerates the AFOs really well but not the strap. And he can only handle the wrist splints for so long. We made his knee splint and it works really well too - it stretches the right knee to bend where it's stuck stiff straight.
So anyway - our next trip to Houston will be Sat. Aug. 25 through Thurs. Aug. 30. Continental Airlines is providing us with 2 free tickets for this trip - we have to leave on Sat. because there isn't a flight available for Sun. This is a program they operate for families with medically needy children having to travel out of state for treatment. You can only get 2 tickets each year so we thought we would go ahead and exhaust that before letting Shriners pick up the cost on future trips. If anyone has any questions about this program feel free to email me - it is very easy to qualify and get the tickets. I spent only two days trying to get things lined up - and our tickets are already booked.
We have decided to discontinue Peyton's therapy here at home. The therapists here are learning from us, so why not just do the therapy ourselves? We will have Shriners following along with us for support and we'll be going there frequently for follow up so I think we'll be ok. And I won't have to worry about the insurance issues anymore for the time being. They are great therapists, but they just have a huge lack of knowledge and there's no point in flushing his therapy visits down the toilet like that. We won't find anyone around here with any experience - that's just the way it is. When he gets older we might need to send him back but for now we can handle it. The therapy dept. at Shriners in Houston is fully supportive of this decision. They said there was no point in going either. I am waiting to hear back from them about how often we will need to come there now since we're discontinuing therapy here. The only crimp in the situation that will make us have to travel more often is that his splints need to be adjusted periodically - and/or new ones made. The therapists here at home wouldn't touch his splints for fear of messing them up I think. They just didn't know much about them.
Morgan started school Monday at her new school - she loves it so far. She says her teacher is very nice and she's made friends with another little girl in her class who is also new this year.
We will update again soon - this weekend I am taking the kids to my sister's in Richmond for their cousin's birthday. Chad is staying behind to work on the house - also he has to work Saturday.

Wednesday Appointment

Peyton does not have a hernia. Only some excess fluid built up around his testicle which will self correct.
He got fitted for his AFO's today - they had to take molds of his feet and legs using plaster and from that they will make the splints. They will have them made by Friday. The pair he will wear through the day will have American flags printed on them and the one he will have at night to correct his left leg rotation will be camoflauge.
Other than that he only had therapy. They modified his splints some more and did more stretching. He will be coming home with all kinds of new gadgets to wear. His wrists are doing so well - they've come around quite a bit! The doctors are shocked at how his feet have stretched out too so we'll for sure be scheduling his achilles tendon clip next visit.
Instead of coming back in 2 weeks for therapy follow up and then again two weeks after to see the doctors, they have decided to schedule us for both on the 27th. So we'll be back in 3 weeks and should only have to stay a few days.
We have news about Angelflight - we can probably go ahead and apply and get accepted fairly easily however there are a few humps we have to get over. First of all Chad won't be able to go - only one person other than Peyton can ride. Then they restrict your baggage to 50 lbs or less (we don't know if we can pull that off with everything we have to take for Peyton plus our own stuff), and then due to the huge distance they would have to arrange for 2-3 pilots/planes/locations for layovers because their pilots are restriced to 350 miles at the most. And since they can also cancel at any time for any reason - I could get stuck with Peyton somewhere with no help. I will probably talk to the hospital staff tomorrow and then make some other calls to see about any possibility of getting commercial airfare funded. We don't know - we'll have to get more information. We don't mean to try to find more and more problems but it's scary to think of getting stuck with Peyton in the middle of nowhere and me all by myself.
So anyway, tomorrow will be another busy day - much busier than today. He will see 4+ doctors (upper extremity, lower extremity, neurology, and geneticist) plus therapy twice. We're meeting up with some families from the convention who will also be at the clinic tomorrow and we're going to go out do something together after our appointments.
Peyton is hanging in there! He's had a really rough week but is doing so well. He is usually extremely exhausted when the day is over - his naps are interrupted while we're at the hospital and he crashes and burns for a while after. But he is so happy (when they're not cranking on his arms and legs)- we could just squeeze him to pieces. Yesterday we drove out the bay and today we rode around town. We try to enjoy a little bit of the city when we can, but we only have the evenings. We feel like we live at the hospital!

Correction from last blog

Oops - - Airlift Hope America IS Angelflight. I just emailed the director back to see what we do to apply. The only disqualifier I saw was a stipulation about the distance can't exceed 1,000 miles. I don't know how many miles it is from Knoxville to Houston based on the route they would fly. I mentioned that to her so we'll see what she says.
We got up super early this morning. Peyton did not sleep well at all. He woke up for good at 5:30.
We have to report for duty at 9:00 so I guess I better go give him a bath and get going.

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.

Peyton's first therapy and AMC convention

This past Tuesday was Peyton's first therapy appointment. It went pretty well. We really like the occupational therapist. He is English, and entertains Peyton so well. He had him smiling and cooing like crazy. I think he's a keeper. He has had a couple of kids before with arthrogryposis, which is more than what most others around this area have. He seems a little unsure about diving in head first with aggressive excercising and stretching until he gets a good set of x-rays to see what's going on with Peyton's joints. Which is fine with us, we totally understand that. I still get the willies trying to stretch his knees - you can't always tell exactly where his knees are. It's hard. And one knee won't give at all. But anyway, he is scheduled to go back this Tuesday and Wednesday to see PT and OT. And Tuesday he also goes to Knoxville for his cast change.
He's doing really well - he smiles and makes happy little noises all the time. And he's learned how to mock your sounds. Pretty good for 11 weeks old.
We've decided to go to an arthrogryposis convention in Arlington, TX next month. All 5 of us are going to go - I think this will be good for us. We are so anxious to meet other families dealing with this condition and also to listen to the doctors who will speak at this event. We're excited about it and hopefully all of us will benefit from it in some way. I feel like we need to keep all options open and utilize everything available to us. I think we'll gain more insight and also be able to face alot of reality. Even though we're off to a decent start and are getting things in line with his care, I still feel sometimes as if we're floating around out there with no direction.
The other two kiddos are doing well, Morgan is with her dad this week and Brady is staying with nana tonight. We went to the family reunion last week and had a good time. It was rough traveling without Chad though. He had to stay behind and work.
Check back soon for more updated pictures. I'm going to try to get them

New Update

Peyton went yesterday to have his casts changed out. This time he keeps them for 3 weeks. His feet are improving little by little but surgery will be the key when he's about a year or so old. The doctor said he might want to go ahead and get some x-rays in another month. He wants to see what is going on with his bone structure and if any joints are fused. Of course we may not be seeing him any longer if Shriner's takes over all his care We won't be sure of that until we go for the first appointment. I am sure they'll pick up where this doctor leaves off though. Maybe they'll have a better plan of action.
His therapy has been set up to begin in 2 weeks. We've been in a little bit of a bind with that until now so thankfully it has worked out.
This weekend the kids and I are headed to Kentucky for a family reunion. Hopefully there will be decent weather and it will be enjoyable. Morgan started a summer program with her old preschool/daycare and will go on fieldtrips every week. We're glad she'll have some children to interact with and not be so bored at home day in and day out.

Shriner's Appointment

We got the letter from Shriner's today and Peyton's appointment is set for July 31. It says to expect to be there for about 6 hours because many different doctors will evaluate and do whatever testing is necessary.

Answered Prayers!!!

Great News!!! Peyton was accepted into Shriner's!! I called this morning to check the application status and he was accepted. They have mailed us an appointment letter so hopefully we'll receive that soon. We are SO relieved!
Everyone is doing well - all the kids are home today and right now the babies are napping. Probably not for much longer though so I better go get what I can done.

Happy Anniversary to Us!

Officially - May 29 marked 3 years for us. We've been through alot in those 3 years. And if you think about it, exactly half the time (18mths) I've been pregnant. Chad reminds me often of how happy he is that it's over. I must have been moody or something I guess. =)
We spent a few days in Pigeon Forge, TN at this amazing bed and breakfast called Mountain Harbor Inn (check out www.mountainharborinn.com). We had a great time just to ourselves. Both sets of grandparents were kind enough to relieve us of the babies. This was the first stress-free, kid-free, enjoyable trip we've made in FOREVER. We went horseback riding, took a boat out on the lake and grilled steaks, went to Dollywood and Splash Country, and the hotel served us breakfast every morning and candlelit desert every night.
So now we're back home and getting back to the norm. Morgan is with her dad this week and Brady has been very sick. When she gets home and Brady is better we can't wait to take them to Splash Country. Our kids LOVE water!
Peyton is growing - we really noticed it when we got him home. And he smiles so much now! He is such a happy baby. Today we had a few ladies with Early Intervention Services come to the house to see him and set goals for him. We will have a teacher coming to interact with him biweekly. Also we're finally getting somewhere with his physical and occupational therapy. We now will be going to Wellmont Rehab in Kingsport. Appointment is pending but definitely will be next week. He still sees Dr. Madigan in Knoxville and gets another cast change next week; however, I have been working on getting this doctor at UVA to see him. He will be coming to Washington Co. Health Dept. this coming Tues. for a clinic he does just twice a year. I really want him to see Peyton because he specifically works with hip dysplasia in newborns. Pray hard because this clinic is full and the health dept. refused to sign him up for this one, but I called the doctor myself and begged his nurse so she is going to speak to him about Peyton this evening, gather his records, and call me back tomorrow evening. It may be that this doctor won't do anything YET with him being so small, but this sounds more promising than Dr. Madigan's treatment plan, at least until Shriner's gets underway. We still haven't heard anything. Of course it all still means more traveling . . . but we'll go to the ends of the earth if we have to! He is out of network too but we just don't have a choice if we want to find a doctor who will aggressively treat him.
On another note - we're making progress with the house. We only have the kitchen left to tile - both bathrooms are finished! Chad did a great job and it looks wonderful! We also got the front door replaced and it made a huge difference. We have someone coming to pour concrete for the walkway tomorrow. Once all that is behind us and a few little touch ups here and there, we'll have the house on the market! We are praying for enough equity to clear a decent down payment on the next house and lower our payment since I am not working. With everything we've done to this house over the last couple of years we should come out well.

Introduction of Peyton and and Last Year of Our Lives

Last summer (June) I was diagnosed with a neuromuscular autoimmune disease called Myasthenia Gravis. Its a disease where my body produces this antibody that blocks the nerve impulses to my muscles and causes weakness and muscle fatigue. It's really not a bad case of it either, my left eye muscle gets weak from time to time and my eyelid droops as a result. Lack of sleep or stress triggers it. I take medicine to correct the symptoms. In July I became pregnant with Peyton and was referred to a high risk doctor to watch the pregnancy because they thought the pregnancy would cause my symptoms to worsen. Not the case - I was perfectly fine. Just before Thanksgiving I had my 20 week level 2 ultrasound they discovered he had some severe abnormalities with his limbs. We were devastated. My doctor knew what it was and actually encouraged an abortion but still referred us out. We flew to Children's Hospital of Philadelphia a week later where he was formally diagnosed with Arthrogryposis Multiplex Congentia. It was caused from the Myasthenia Gravis I have. The antibodies were going to his bloodstream and blocking his nerve impulses. This is called transient myasthenia gravis. Only a handful of cases have ever been documented and most babies died. The arthrogryposis itself is uncommon, but what makes the difference is the disease I have causing it. The weakness and lack of movement in the fetus would usually cause abnormal lung development and respiratory insufficiency was the cause of death. The doctors at CHOP suggested the only hope for him was plasmapheresis. I would have to have it every week until delivery to filter the bad antibodies that were attacking him from my blood. Basically they take all my blood out, and replace my plasma with a synthetic. This would be the first time this would ever be performed on a pregnant woman from the time of diagnosis until the delivery. The doctors here at home weren't experienced with doing this so we traveled to Duke every week for me to have this done. It took approximatley 5 hours to do the procedure and do the NST monitoring/ultrasounds afterwards. Oh it was awful. At 32 weeks we had to temporarily move to Duke until after the delivery. There were almost instant improvement with Peyton's overall condition. The damage to his limbs was already done and nothing could really be done about that, be he started thrusting his trunk and moving his head around more - the weakness was subsiding. He was delivered at 39 weeks via classical c-section, (they cut straight up and down to lift him out of me with out damaging his stiff limbs); weighing 7lbs 2 oz and 19 in long; and spent 12 days in the NICU. In the beginning he had a lot of trouble breathing and was almost placed on a respirator but after the first week he stabilized all on his own with only the help of an oxygen tent/nasal canula. He had a feeding tube until he learned to eat on his own and then after that he was sent home and we got to return to Tennessee. No doctor at Duke predicted he would live, much less have such a short stay in the hospital. He's still doing great and packing on the pounds. Peyton has a very severe case of arthrogryposis. He is unable to move his toes, fingers, feet (they are both clubbed), hands (which are clubbed as well), wrists, and his elbows and knees will not bend. The movement at the shoulders and hips is minimal. Both hips are dislocated. His limbs are shorter than they should be and he has abnormal muscle development, some muscles are missing. He will require many reconstructive surgeries but usage of his limbs will depend on what muscles he lacks. If there is no muscle then he will never be able get full function from his limbs. We don't know how much he will be able to do for himself, or if he'll ever walk. But God is clearly working in his life and we remain positive. We're trying to get set up with Shriner's. Until then we travel to Knoxville biweekly to see the pediatric orthopedist. They currently are treating his clubbed feet with casting that has to be changed out every time we go. He will be in casts for the first year of his life. He will soon be seeing physical and occupational therapists weekly, and the doctors at Duke are going to follow his progress. He will be in many medical journals to come and ETSU has already done a case study on his condition. My tubes were tied and he is the end of the road for us. The recurrance rate is very high and likely another baby would end up the same as Peyton. We have 3 babies though, our cups runneth over. We run our tails off day after day and our house looks like a daycare center.
SO anyway, we'll continue to report the progress - some of you know that we're on a hunt for the right doctor for Peyton. We want someone a little more aggressive about treatment than what his current doctor is.