In Other News...

With all the craziness in our lives, I thought it was important to take the time out to share a story which brought so much hope and joy to my life just a couple days ago.

I traveled to Canada on my own between April 2-7 while my mother had a mastectomy just 2 months after being diagnosed with breast cancer. With everything she has done for our family, I felt the urge to try to be there for her when she needed a hand. It was difficult for me to leave the kids, but I knew they were in good hands. I was anxious to see them upon my return.

Moira was so excited when I came back. She was still up when I arrived home late on the evening of the 7th. Peyton, however, was asleep and I wouldn't see her until after work on the 8th. I was quite anxious to see how she would react. It was a busy evening, as usual. I picked up Moira, went to the chiropractor, ran home to get her fed and changed and out the door to her Tuesday night faith formation class at church. Ron was picking up Peyton, but made it home in time to take Moira to church. So, when he got home, he literally brought Peyton in, put her on the floor in the living room, and ran back out the door with Moira. So, I was on my own for what was to come.

Peyton, as usual, was happy to be home. When I walked over to her, the smile on her face was incredible. She was SO thrilled to see me. It just made me so happy. Now, as you know, though Peyton is almost 23 months old, she cannot speak and does not say simple words like "mama" or "dada" or any of the usual first baby words. She makes a limited variety of sounds, but nothing you could call a "word". If we say "Up, up, up!" in this little game we have, she might respond with a simple "uh" - so she's getting the concept, but just doesn't outright say "uh" if she decides at any random moment that she wants picked up. Anyway, long story short...After a few moments of smiling and bouncing a little on the floor, as she does when she is excited, she started saying "mamamamamamama". Just a constant repetiton of the "ma" sound. Not so much "mama". But, given that she can say other sounds, and she chose at that moment to use the "ma" sound... Well, I nearly broke down. It was the first moment where I just knew that what she was saying was a recognition that I am "mama" to her.

So, it has been nearly 2 years of waiting anxiously for one of those big milestone moments which seem very few and far between. This one was definitely worth the wait. It was just one of those moments where, as difficult as things often are for us, it just goes to show that there is hope that things will improve and that SOMEONE is watching over us. And it all goes back to that day a few months back when Peyton's hearing aid was lost and found destroyed in the parking lot when I could really hear a voice saying "Have faith."

Still Appealing

We hope everyone had a wonderful Easter!

Peyton is doing well. She did see her regular Ophthalmologist last Thursday and was given a good report. I asked about her eyelid pulling away from the eye as the other doctor had mentioned. She said that she really didn't see a problem, so nothing to worry about there apparently. She's happy with where Peyton's vision is right now, so doesn't need to see her for 4 months!! This will be the longest time between visits!

Peyton followed up with her Neurosurgeon on Tuesday. He wants her to have another MRI to make sure nothing has changed. That will be in June.

Therapy continues to go well for Peyton. We're approaching crisis mode, however. The company is having issues with my insurance company (for all clients with that insurance). They are gearing up for another round of denied claims, like what we experienced between October and December 2007. To that end, they are unable to provide services under our plan and if we want to continue past the 25th visit, we must private pay. So, that's about $800-$1,000 a month I don't have. Now, it's possible that the insurance will pay, but in order to prevent being out all that money for their clients, they want the private pay rate to cover the sessions in case the insurance company does start denying. Seems to me they are about to lose a lot of clients!

I'm still in the fight of my life with insurance as I am filing my second appeal to have those 13 denied claims reversed and paid. I do not feel optimistic at all. I'm mailing the package out today. I think they have 30 days to notify me of their decision. So please be sending up some prayers that this stress and burden will lifted and that the insurance company has a conscience and does the right thing.

Will keep you informed of our progress.

Appeals & Updates

I realized it has been quite a while since I updated this site, so I thought I would take a few minutes of my lunch hour to post an update!

Since Peyton got her chair, she has been really enjoying it. It's quite heavy and we still need to figure out a way for me to transport it without killing my back. I'm already going to the chiropractor 3-5 times a week, each and every week, so I'm not about to ruin all the good work he's been doing! She tolerates it for up to about an hour at a time, which is great.

The feeding with the special squeeze bottle/straw is improving. We've transitioned to pureed table foods. So far, her favorite seems to be a pear flavored yogurt blended with real pears. I tried chicken and broccoli, but that didn't go over real well. We just need to keep trying to see what she will eat well. She's not eating a great amount of food by this method yet, so we need to find something.

I am still working on getting letters from Peyton's doctors to support my second appeal for all those therapy claims that were denied. It's hard getting everyone to get you something by a certain time! I'm not optimistic about the appeal. I filed a complaint with the state, but apparently the state doesn't regulate self-funded insurance plans. It took them about a month to tell me that.

Peyton's therapy is going well, although they cut back by one visit a week in the hopes of making it further into the year before the insurance decides to stop paying again. They started paying again in the new year but they can review at any time. It's ridiculous. I can't give my child everything she needs for fear of insurance. Great feeling.

She had her appointment with her Neurologist on 2/28/08. It's always one of those visits where he's really examining her closely, but doesn't say a whole lot. In the end, we have a 22 month old child who is developmentally between 6-9 months of age. It was not an eventful visit.

Peyton was scheduled for an appointment with a Cardiologist on 2/29/08. However, when I got there, they had no idea who we were or what we were there for. Must have gotten us mixed up with the other Fontenot family who happened to sign in for an appointment with the same doctor at the same time. We still haven't sorted through that mess.

Peyton was to have her every-three-month eye exam done under general anesthetic (for her glaucoma) on 3/03/08, but in her pre-op assessment the week prior, she had a little bit of tonsilitis. The doctor decided it was better to postpone if we could. So, she had her exam done just this past Monday (3/17/08). It went well. Her pressures are on the low side, but nothing the doctor is too concerned about. The only thing he noticed was that her lower right eye lid is not flush against the eye ball as it should be. Probably a result of how she healed after having so many of those chalazions removed back in December. She'll likely have a consult with an occuloplastics doctor as it can result in problems with how her eye is wetting. We do see her regular Ophthalmologist tomorrow and we'll see what she has to say about that.

In the middle of all of this, my mother was diagnosed with breast cancer and subsequently had to cancel her trip down here to visit for Moira's 4th birthday. We were very sorry to hear of her news and hope she's doing well. She seems to be in great spirits as she awaits the treatment phase.

Never a dull moment in our family!

Happy Easter to all!

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!