Mobilty

We did have a positive thing happen yesterday. Peyton FINALLY got her new chair! We've been trying to get Peyton some sort of adaptive seating system since OCTOBER last year! Actually, we had been trying for a few months prior with nothing happening. However, the pre-certification, denial, then approval, then order, etc. of Peyton's new chair finally went through. Ron picked it up yesterday. It's a "Special Tomato" brand multipositioning seat. It is a seating system which sits on a "push chair" base. See website link:

http://www.adaptivemall.com/smalmpspusch.html

This company is not where we ordered the chair from, but it does give you a good idea of what her chair is like (except hers is a deep purple/plum colour and not blue as shown on this site). We also got the chair with the optional tray so that she can now play with toys in front of her from a sitting position!! This will be great for her.

This seating system is what Peyton will use for mobility for the foreseeable future. While we don't know what her future holds in terms of mobility on her own, we do know that a stroller doesn't quite cut it for her at this point and she needs something such as this seating system to allow her to be more fully integrated into daily activities.

While I am saddened at the thought of having my child in what is essentially a wheelchair, I am grateful that such equipment is available. I am excited about getting her into it and allowing her to experience her world from a sitting position! I think that this chair will also build strength in Peyton's upper body which will hopefully extend to her legs and perhaps help her mobilize herself in other ways such as crawling! Wouldn't that be awesome!?!

As for this chair, we're still trying to wrap our heads around how we're going to transport this to and from the babysitter's every day. Our '99 Neon is too small to easily transport this chair. The base folds down like an umbrella stroller, though much bigger, and the chair itself is larger and extremely heavy. We just got an '07 Ford Edge in June. While it is bigger, the chair and base will take up the entire back end. And then there's the minor detail of HOW I am supposed to get this thing in and out of the Edge (my car...and I'm the one who picks Peyton up at night). I honestly don't know if I can lift the chair! The base, probably not a problem. The chair - doubtful. Ah...the challenges we face!! Oh well, at least I'm in for a good workout! We'll work out logistics...we're just happy we finally have the chair!

Denied

Happy Valentine's Day!!

I'll keep this one brief...DENIED. Denied. Yes, my insurance company has DENIED my appeal for those months of therapy for Peyton on the basis that the treatment WAS NOT MEDICALLY NECESSARY.

That said, I think it's safe to say that you all know how I feel and that I don't need to go there right now. Believe me, the manager of my benefits department just got an ear (or I guess eye) full as I just emailed him.

This is not the end...I will fight....whether I will prevail or not remains to be seen. Guess I need to pay my bill now.

Genetics: Still No Diagnosis

Peyton is doing much better today and is back at her babysitter's. Those extra fluids seem to have done the trick.

After waiting since 10/01/07 for results from the research study Peyton's geneticist put her in, we finally have word back. The word is that there is no word. NOTHING came back. So, in what is apparently the most extensive genetics testing currently known to mankind, nothing showed up. That said, her doctors are all still convinced it has to be genetic because of number of issues and types of issues she has. I guess those things just don't happen randomly altogether usually without it being something. So, ever-frustrated, we press on with no diagnosis and no prognosis. I know whatever it is is going to be exceptionally rare so we may never have a prognosis but I want a name! I'm tired of not knowing. I'll go to the ends of the earth to figure it out if I have to...I just need to know where to go.

Another ER Visit

Well, Miss Peyton got this week off to a good start. We had friends over for a mini Super Bowl party Sunday night. She was a bit cranky and felt a little warm, but not too bad. We put her down for a nap around 5 but even after she woke up she was still pretty cranky. We checked her temperature later and it was over 102 and then by midnight was over 103. That would explain a lot! I went in to work Monday for a few hours and to bring stuff home to work on and got home around 9am. She still had a fever. I made a doctor appointment for her but couldn't get in til 4:45!

I let Peyton rest all day and tried to feed her but she wanted no part of it. She wouldn't drink anything. I tried to give her medicine droppers full of formula and PediaSure, but she knew what I was up to and made her opinion pretty well known. I got her to the doctor and waited and waited and waited. She was the last patient of the day. So, I think we were seen somewhere around 6 or so. Her temp was up but not quite as high and her pulse ox level was a bit low. Peyton was coughing and her breathing was sounding pretty rattly. The doctor decided to send us over to the hospital ER for tests.

So, I drove the car around (the hospital is next door to the doctor's building), and took Peyton in to the ER. Forget those stories you hear about hospital ER overcrowding and eternal waits. There were maybe 10 people and we waited maybe 10-15 minutes (if that) before being called back to see the screening nurse. Usually they dump you back out in the waiting room, but she took Peyton right back to a room. Her heart rate was fast and pulse ox level low. We had to wait a while once in the room but they did a chest x-ray which wound up being normal, and did blood work which wound up being ok. They got her on an IV so she could get fluids as she was pretty dehydrated. She also had to be able to drink on her own. She managed a little but was mad because she couldn't hold her bottle herself with her one arm strapped to a board (IV in that arm). She didn't want my help either! So, we were finally declared ready to go. Too bad...I was "enjoying" the man in the room next door going on and on and on about how all he drank that day was carrot juice.

We got home pretty late last night and I made Peyton even more mad by having to hook her up to her pulse ox monitor here, as we do every night. But FINALLY she was able to go to sleep and not be interrupted...as was I. Of course, now that it's morning, I am not feeling too hot myself and am home feeling sick and taking care of Peyton. But Peyton is in much better spirits today.

Sleep Study & The Future

Yesterday I called Peyton's pediatrician's office to make sure they'd gotten my fax with the sleep study report. The nurse called me back and left a message to say they had and that, oh, by the way, your appointment with Dr. x is scheduled for 2/29/08 and 1:30... My thought was what kind of doctor is this??? So, I called back and she said, oh she's a cardiologist. Well, I nearly died because no one had mentioned to us that Peyton needed to see a cardiologist! Since she had no information at hand about what this appointment was for, I had to hang tight and wait until the afternoon when the pediatrician came in.

Around 1:30, the doctor called me and explained that the doctor from the sleep study probably referred Peyton so they could establish a base line for Peyton's heart. As she explained to me, she (the pediatrician) had never seen a sleep study as bad as the one Peyton just had, and with central sleep apnea, over time there can be damage to the right side of the heart as there is extra stress from the lack of oxygen. Ok, so I can understand the visit now, but that issue had not ever been explained before so it took me quite by surprise.

That conversation then evolved into one about Peyton's future. The doctor said as much as you want to be optimistic (and we still try to be), she said the last few studies done on her recently have not been encouraging signs for her. We discussed how with no diagnosis of a syndrome yet we don't know what she has and, therefore, don't have a prognosis. I mentioned how the neurologist the other day had mentioned generally speaking that children with neurological impairments often pass away due to respiratory issues. So, you can gather where this conversation went. We just don't know what Peyton's future holds or how long she'll be with us. So, in the meantime, we'll just keep on doing what we're doing because that is what is best for Peyton. I always feel guilty about having to work while someone else takes care of her during the day. This conversation yesterday certainly did not help in that regard.

The doctor wants to get a few more specialists involved to see how we can help Peyton but she's afraid that Peyton's development may not improve much more beyond where she is right now. She said that any positive things that are happening (like the feeding I mentioned the other day) should be considered little miracles for Peyton. I keep hoping that one day she's going to sit, crawl, stand, and walk, but I have felt for a long time now that walking may be too lofty a goal to set for Peyton. That said, I will NOT give up on her.

So, that uplifting conversation with the doctor rounded out what I would consider to be one of the worst January's of my life. Now I wonder what February has in story for us! I'll keep you posted.