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!!!
Sunday, August 19, 2007
Thursday, August 9, 2007
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.
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, August 1, 2007
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!
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.
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.
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