Thursday Appointments

Peyton got to see all kinds of people today!! The first half of the day went really well for him - the doctors just talked to us and drilled us with questions but didn't mess with him much so he got some extra nap time in! Basically the upper and lower extremity doctors just looked him over one last time and said he was doing great so far - and said they could tell a difference with all the stretching he's had this week. Then the neurologist and geneticist came in for a while. The neurologist poked at him a little and got the whole story of my pregnancy and his birth. Then he brought in another neurologist because they were so amazed with the story. Really - you should have seen the looks on their faces. It was a sight. The geneticist put us through this big questionare that they give all the patients - they are compiling all kinds of information to study more in depth the possible causes of arthrogryposis. Of course in our case, we already know. She too was quite amazed. The neurologist is sending Peyton for an MRI tomorrow of his spine. They found out that while he was in the hospital at Duke they only did an MRI of his brain and didn't get his spine. Since spinal defects are common with this condition they want to make sure everything is ok. Also he found a dimple in the sacral region on one side only and then also that little rat tail he has in the crack of his butt are markers for a tethered spinal cord - or some spinal cord defect. Hopefully that is not the case and it is just coincidence. Please pray for him tomorrow because we have to be at the Children's Hospital at 8am for the MRI and he can't have anything to eat after midnight. Also they will sedate him heavily for it. We won't know the results until next week sometime.
After he was seen by the doctors in the clinic we had lunch - we met up with Chandra, Kendra, and baby Emma - a family from the convention - who were also there for clinic today. Then we went back up for therapy afterwards where he was filmed by this public broadcasting contractor who is doing a piece about the Houston Shriners. So he will be on TV at some point. We don't know when or any other details but maybe we can find out.
Also we have an answered prayer - Jericho Shrine Temple is going to fund our plane tickets to fly commercial - so we won't have to use Angelflight for now. They will only pay for 1 ticket each time so if Chad wants to go we'll have to pay for his but that is fine - he won't always need to be there. And then we'll probably stay at the hospital in their parent room next trip. Jericho can't fund a hotel on top of the airfare. But what really helped was that Jericho contacted Greenville SC Shriners and they confirmed that they generally do not see arthrogryposis kids. It is just meant to be for him to come here. Also I got a response from a lady with Continental Airlines who coordinates the free airline tickets for families needing to travel out of state for medical care for a child. They award 2 free tickets each year to each family in need requesting assistance. All she needs are the dates, the airport locations, and a fax from Shriner's confirming the appointment and she can get us the tickets. So there's another resource for us to use. And I also left a message with American Airlines - they do a similar program.
This evening we took a drive with Chandra, Kendra, and Emma out to the huge mall downtown and we had dinner. Their mall is amazing. Of course we can't afford anything in there - we went to one children's store where there wasn't a single shirt under $60. Most items were between $60 and $100 and their shoes are $150 a pair, and a diaper bag was $195. Probably the cutest stuff I have ever seen (especially the little girls stuff) but we'd have to take out a loan just to buy 1 outfit!
So tomorrow after the MRI, Peyton gets his AFO's and goes to therapy to have his stretching and his splints adjusted - they'll redesign his knee splint. Also they'll remeasure all his joints to check the progress. He definitely has made plenty this week!

Something About Myself

I don't get on here and say much about myself. . . but tonight I was frustrated and wanted to share a problem or two (ok the term is GRIPE) while taking a break from packing.
Only very few know I recently have had 2 surgeries. Won't go into detail as to what they consisted of however now I am looking at a 3rd. It's like if there is the smallest, slightest, itty bittiest chance that something bad can happen....it's going to happen with me every time. Can't win the lottery though - go figure(well I guess you can't win if you don't play). And thats really all I have to say about that.....
And we are battling over Peyton's power chair - which was somewhat expected. I just want to drive him down to Cigna's office and say hey....look at my baby and I want to see you deny that to him to his face! My baby can't walk, crawl, roll, scoot, or anything... we just want to give him some feeling of independence and this is something he knows how to use! My goodness this child has been through enough and deserves to reap some benefit from this cruel world....
I will get off my soap box now.... Yes God is good and He will bless, I just had to blow some steam in the meantime. . .sorry. Please continue to pray for our little Peyton. He and his daddy are in Philly as we speak. Very first trip ever that we haven't gone together. They are safe and all is well. Peyton will get new casts tomorrow and after they will be on a flight to Columbus where we will be together again for the 2008 AMC CONFERENCE!!! After that it's off to my brothers' for a couple of days, back to Philly again for a night, and then we're off to Disney for a week. We will be in touch soon . . . .

Philadelphia

We found a WINNER!! They are doing a great job in Philly with Peyton. We are on trip 2 here with him. The first trip they did a repeat heel cord release like last minute arrangements, and immediately began serial casting. So we will be going through that again for the next couple of months - which means weekly trips to change casts out. They are casting him all the way up to the tops of his thighs and also bending his legs as much as they'll go each time so we are gaining some flexion rapidly. We are seeing some awesome results in just 2 trips. We are here now, were supposed to come home today however they decided to do another cast change Friday so we are just staying until Saturday.
Here is what they've said in a nut shell : Towards the end of serial casting on his feet in 2-3 months they will operate and put his left hip back in and also at that time the upper extremity specialist will release his right elbow, do his right wrist , and z-plasty on this thumb all in one surgery. So basically he will get his hip put in place and have more of a functional right arm/hand - and his right arm is the dominant one so this will be great and will open up a huge world to him.
Also quick note - Peyton had an awesome article in the Kingsport Times last week along with a great news interview - all for a fundraiser hosted by the Kingsport Mets at Hunter Wright Stadium on July 5 where they raised over 1200.00 for Peyton's medical/travel expenses. It was awesome! Morgan also threw the first pitch in the ballgame that night and did an excellent job. Can't wait to get pictures posted!!!
Say a prayer for us as this has not been an easy trip for us this go-around. It has been very stressful - hopefully things will even out in the future.

Power Chair on the Way!

Peyton made it through his trial and evaluation with a power chair and his very own is on order. . . should have it within a month or two. Insurance will take the longest. It will even have a function to where he can lower his seat all the way to the floor. It is amazing to see that our baby knows how to make one of those things go! Now he doesn't have the direction down pat yet but he definitely knows how to turn it on and go. We will just have to pray about the van situation. We don't know how much space we will have to get a ramp or lift and since it's just a mini-van and we have 2 other kids this could be challenging. We may be looking at a 12 passenger, ha ha. Also we now have him scheduled with Dr. Van Bosse in Philidelphia instead of the other doctor. He is officially on board there so we were able to get Peyton an appointment the same day his appointment was with the other doctor. We leave on Wednesday this coming week. We also heard they have an upper extremity specialist who will also be at convention this year. For those who don't know what I am talking about - July 17 - 20 is the Arthrogryposis Convention in Dublin, Ohio - just outside of Columbus. We attended last year's held in Dallas and will be attending again this year. We are getting so excited! Peyton was approved for a $500 grant to cover some of the travel expenses for this event so that's a huge praise! We have more news! Peyton will have surgery on July 7. This will be to circumcise and bring down his undescended testicle and possibly at that time they will correct the hydronephrosis of his left kidney. It will be outpatient at Knoxville Children's by Dr. Preston Smith so thankfully we are not travelling very far at all. We should be able to bring him home the same day. Peyton also got his elbow braces - finally! They work well -he only wears them a few times a day for about 30 min. each time and already has shown good progress. They are not too complicated to put on and he tolerates them well. BRADY IS FINALLY POTTY TRAINED!! One last thing, the end of July Chad and I are taking Morgan and maybe cousin Haley to Disney World - we are tickled to death! Morgan has been through so much - taking a back seat to the boys for so long in many situations and we want to finally do something big just for her. She's a great big sister and she deserves it. Brady's and Peyton's treat is going to be going to see Bob the Builder live at Tweetsie Railroad next weekend. We are thinking of going to the coast for a couple of nights to take Brady and Peyton but just can't find a time slot. We will be ambushed with plans from now until school starts. And then too I will be going back to work in August. We just can't make it on one income forever. Peyton will lose his SSI benefits (not the medicaid) but it just hasn't been enough to make up for me not working. So anyway.... we will report back soon with news after the trip to Philidelphia.

No to Lexington

Peyton had his consult with Lexington last month and it did not go that great. We were not impressed at all- it's a long story but just overall we were not happy and will not be going back. It was very disappointing but we know ultimately God will lead us where Peyton will benefit most. Our next trip is lined up already - we will be going to Philadelphia June 26 to the Shriner's Hospital. I'm feeling pretty confident this place will meet his needs given that Dr. Van Bosse from New York will be joining in with them as of next month. His initial consult is with another doctor but we had to get our foot in the door until Dr. Van Bosse is officially in the system.
Peyton got new AFO's with tread for weight bearing. They still slide off like the others did but work better overall and definitely look better. A local orthotics place is taking care of his splinting needs for now and they're doing a great job. He gets elbow splints Thursday to help with getting some flexion. And tomorrow a rep from Permobil is coming to talk to us and lend a pediatric power chair for him to test out for a few weeks. Sounds crazy, but they actually are proving the younger the better for teaching how to maneuver one of these things. We're really excited to see how this goes. If he learns anything about using one, and we can prove it to be beneficial, the insurance will pay for him to have one of his own.
He's doing great on his weight-bearing. We have him in a jumperoo, exersaucer, stander, and walker as much as he will tolerate and it gives his feet a good stretch. He's actively playing so much more now and doing amazing things. He interacts with Morgan and Brady so well and they just adore him. He's finally eating baby food very well now, and eating some table foods pretty well too. As soon as we can get him to take some kind of juice, water, or milk by sippy cup we're going to cut out the bottle but he won't take anything by cup yet. I don't want to make the mistake of putting whatever in a bottle and letting him think he can always just have what he wants from a bottle. We'll get there soon I guess..... not too worried about it. There's just so much to tell about him. He is developing his own little personality and it's just the best. SOOO HAPPY all the time. Loves to ride in his new forward facing carseat. He looks like a big boy!!! Lots of teeth coming in and he's still a little chunk!
We'll be posting again soon to update about everything coming up.....
Please pray for Chad's mom and dad. Larry is having some major medical issues right now and they need answers and treatment.

A few things....

A few things . . . .

Peyton’s first appointment in Lexington will be April 24. We have ended Houston and will hopefully get off to a good start with the Lexington KY location.
He is doing great since his surgery. His feet are flat on the ground with braces and he is beginning to weight bear - assisted of course. He is getting new braces because the ones he has constantly slide off. Plus we can’t find any shoes wide enough for them to fit down into.
Peyton’s occupational therapist is working on getting him his first POWER WHEELCHAIR. They actually say he can manipulate a joystick enough at this age and can learn to mobilize himself in it. They are saying now the younger the better (well within reason of course but as soon as they get to learn that cause-effect concept they can catch on a little). So we are very excited about that - - what a sight that will be! Our little baby in a power chair! He’ll be able to give Brady a run for his money finally!
And one more thing - last but certainly not least! Peyton’s first birthday celebration will be on April 11 from 6-8 at Blountville Christian Church. We are in full swing of planning and hopefully will have invitations mailed out soon . . .

No Elbow Surgery!!

Well I meant to get on here sooner but didn't ... Peyton will not be having his elbow surgery right now. We are finished with Houston after this next trip. The procedure just got too complicated for them when we had to factor in that he now needs a picc line for IV access since he's such a hard stick. Well that's an understatement, he is an IMPOSSIBLE stick. So they don't want to have to fool with it right now.
So anyway Peyton's massage therapist and I (yay!) are going down Sunday the 24th through Wednesday the 27th for his cast removal and to get his new AFO's. I am really excited that she's going this time to see what they do with him there and to hopefully rub on his little legs and feet when they come out of the casts since they will be so stiff I'm sure. Chad is staying behind this time to work since nothing major is happening. Once we get back he will be transferring to Lexington KY Shriner's and then we hopefully look to plan for a trip to New York City this spring/summer to see that other lower extremity specialist that we considered in the beginning. So nothing else new - we'll see how well his feet have fared after we get the casts off. We are really hoping for some excellent results!
He is sitting up all by himself, and now attempting to pick up toys between his legs! He is doing awesome!
As soon as we get back from Houston he will begin having physical therapy in the home three times a week - on top of his occupational therapy which is already three times a week - on top of going for massage therapy twice a week!
Morgan had her first modelling debut at her dad's this past weekend at Hotel Roanoke for a wedding show. I will have to post the pictures on here when I get a chance.

Peyton is Out of Surgery!!

Peyton is out of surgery. He went in at 8:45 central time and got out at 10:15. Half of that time was spent trying to get IV access, they never did get an IV established. They told us that they need an IV the other procedured they have lined up, so we are working on that now. But this is just a short update Kim should update this in full here a little later on. Anyways thanks for the prayers they we're really appreciated and felt. Alright guess i'll get off of here. Thanks again!!
Love ya'll,
Chad and Kim

NO KIDNEY OPERATION!!!

The last trip to Houston was the best yet. NO KIDNEY OPERATION!! At least for now. They will follow up with him every 6 months. He has grade 4 hydronephrosis, which is the worst of the worst but his kidneys are functioning fine so they are going to leave it alone. And then they will circumcise him at some point down the road after we get some of these surgeries with his limbs rolling along.
We leave Monday, the 4th and will be gone through the 10th. His surgery is Wednesday the 6th. They casted his legs this last time to stretch his skin and lo and behold he kicks one off no sooner than we get home. It wasn't a big huge deal though, at least it was the better foot. The worse foot is staying in the cast very well.
We will let everyone know about the surgery next week and how it goes. Pray the anesthesia process goes well.
We went back to visit Dr. Lodeiro today, and Glenna - the ultrasound tech. They were the first to find Peyton's condition when I was pregnant. They had never laid eyes on him - we left for Duke and that was it. I was soooooo happy to take him there today. He got lots of hugs and kisses!
Greystone Healthcare is continuing to fundraise for Peyton - they have done so much for us. They will begin advertising their big open house soon - I will announce the date as soon as I hear when it is- - haha. They were supposed to have already voted on it. We will have an interview with WJHL when we get back from Houston.
Maybe I can round up all my cd's and post some new pictures on here with our free time next week.

We have a surgery date!

We go back to Houston on Jan. 13 - 18. They will follow up on kidneys and most likely make decision for surgery, and then they will cast his feet to stretch his skin before his surgery on FEB 6!!! He will have one of at least 2 surgeries on his feet that day. And then his elbows are next!! As soon as he comes out of the casts on his feet for 3 weeks after his first surgery, they will do his elbows probably the first part of March. Just wanted to let everyone know who didn't know already.......