What Was Once Lost...

Ok...so I either have apologies to make or thanks to give to God for slapping me upside the head just now. I just got a phone call from Texas Children's Hospital's heart center. Someone turned in a hearing aid. The lady remembered me and knew exactly who it belonged to. I'm sending a courier over now to get it. So, why when I had what was arguably the most miserable day in recent memory, I pretty much lost all hope and faith. Why I cannot hang on to those words “Have Faith” is beyond me! To top it off…does anyone watch the show “Eli Stone”?? If not, it's a high-powered attorney turned humanitarian as the result of a brain aneurism which causes him to hallucinate about the next big case, which winds up being a pro bono case which will have a great impact on the “lowly” people who need the help of someone like him. His hallucinations often involve the music of George Michael, or George Michael himself. So, perhaps I've gotten too “in” to the show where I've had George Michael's song “Faith” on constant replay in my mind. I think I need to pay more attention to the little voices in my head!

God bless whoever turned in the hearing aid! And thank you to all of you for giving me encouragement.

If It's Not One Thing....

Peyton went to Texas Children's Hospital this morning for her echocardiogram. This test was the result of the past few months of frustration which began with the ill-fated trip to the cardiologist way back in February. The visit where I drove all the way out there only to find out they had no information on Peyton, therefore no appointment. After a lot of runaround, an echocardiogram was finally scheduled. Typically they will sedate the kids. Since Peyton has sleep apnea, this wasn't an option. So, I was already curious as to how this would play out today. In my heart I think I knew what the end-result of today would be. I should have just not gone and saved myself a lot of bother. After rearranging my schedule to have this done, well, wouldn't you know, they couldn't do the echo. Peyton was too fussy and was moving around too much to get anything accomplished. The tech was not pleasant at all and she made me feel guilty for not being able to keep my child calm. Well excuse me for having a seriously developmentally delayed child who is extremely sensitive to people touching her! The only alternative was sedation, but since the sedation orders were nixed, they couldn't do anything. Besides, with the feeding restrictions prior to sedation, even if they could do it, they couldn't do it today. I said she can't have the light sedation because of the apnea - that was why the orders for sedation were cancelled. I also said the reason she was having the echo was BECAUSE of the apnea. I said why the appointment was not scheduled to be done under a general anesthetic was beyond me. I was SO furious. I just sat in the lobby and cried and vented to Ron on the phone for a while before getting on the road. I should just expect by now that this is our luck.

So, on the drive back, I happened to glance back at Peyton to discover only one hearing aid in. First chance I got, I pulled off the freeway and did a thorough search. Nothing. I drove all the way BACK to the hospital. Of course, the garage was full, so I had to go to another and walk all the way back. I searched the area in the garage where we'd been. I went to the first floor reception. They hadn't had anyone drop off a lost hearing aid. I went to lost and found. Nothing. I went back up to the 20th floor cardio lab. They searched the linens. Nothing. I went back to the garage and searched again. Nothing. Of course, anyone I actually spoke with didn't seem the least bit interested so I wasn't able to leave my contact info. Hard to do when people just turn their backs on you and move on to their next bit of business.

So, after a horrible start to the morning in the echo lab, we're now down a hearing aid. And, yes, it is the SAME hearing aid which was already replaced. The warranty covers 1 replacement in a 3 year period. So, yeah, this one's on us.

In a continuation of this wonderful day, I'm off shortly to what will probably be Peyton's 3rd last therapy session for who knows how long, as the provider will at that time force us to pay $100 per visit (twice a week) in anticipation of problems with the insurance company. Nothing I say does anything to help. They are adamant that the insurance is going to pull the same stunt after 25 visits as they did last year when we wound up with over $1,600 in denied claims which still remain unpaid. According to my HR and the insurance company, 2008 claims ARE being processed in accordance with our plan and each claims is reviewed for medical necessity as we long-ago passed the 25 visit mark with this diagnosis (they review for necessity after 25 visits and then every visit after that is individually reviewed for necessity - it just happens that mid-Oct. through Dec. were denied and as of her first 2008 visit, all claims have been approved which just seems a little fishy). Anyway, again, nothing like the feeling of not being able to provide your child the things she needs.

I'm not having a good day at all and, in fact, am pretty much at an all-time emotional low where this is concerned. I'm just so tired of the runaround we get everywhere we go. I'm tired of things not being done that need to be done. I'm tired of so much more. But I have to wake up (insanely early) each day, throw a smile on my face, and pretend each and every day that life isn't they way it really is...because let's face it, sitting at my desk at work crying all day isn't really professional. And that opens up a whole other issue....maybe another day.

Why things have to be so difficult every time I turn around is beyond me. I just wish we could all get a break down here. Last I checked, I didn't think any of us did anything to deserve what life keeps throwing at us.

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!

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.

Sleep Study Results

Ron and I met with the doctor about Peyton's sleep study yesterday. As expected, her sleep apnea is "severe" (it was before this study). She woke up around 77 times an hour through the study. The doctor did want her to be put on the BiPAP machine at home. We had a very long discussion with the doctor about this. She said it was something to think very seriously about as it is a form of artificial ventilation that would breathe for her at times. We debated whether or not the benefits of this machine were better than the benefits of being on oxygen alone, as she has been for several months now at night. The doctor also mentioned that prolonged use of the mask could cause "facial remodeling", and as Peyton already has a significant dip in the top of her nose, she felt like it could make that worse and affect her breathing. It was a lot to consider - definitely a serious issue. She commented in general terms that kids with neurological impairments often pass away from respiratory issues, so it's important we do what is best for Peyton. If her brain doesn't tell her to wake up when she stops breathing, that could be very bad for her.

So, for now, we are going to continue on oxygen alone at night. I did send a copy of the study to the pediatrician and we'll let her put in her two cents regarding the BiPAP machine. We'll see what she has to say.

On the insurance front, I have submitted a formal complaint against my insurance company to the Texas Board of Insurance. Hopefully that will have some effect in helping to turn around all these denied therapy claims which still remain unresolved.

In positive news, for the first time, Peyton finished a complete "squeeze bottle" serving of her food using the new method the feeding therapist recommended. Granted it was only about 3 oz and was fed throughout the afternoon, but she finished it!

Not too much else is going on. I think all of that is enough!! I'll keep you upated on how everything turns out.

A New Sleep Study

Peyton finished her sleep study early this morning. The official "wake up" time was 5:48 am, although I think I personally only slept for about 15 minutes all night. As expected, the process of hooking Peyton up to all the leads was like torture for her. Instead of starting her out in a crib and trying to get her to sleep there, they started out with her in a bed with me (that proved to be easier last time). She did fall asleep eventually, but it was restless for her. She would only sleep curled up with me with her head resting on my arm. Any time I shifted, she would cry. I was practically falling out of the bed, but she was "comfortable". I could barely feel my arm this morning! Peyton is normally on oxygen at night but I was told if the central apnea was severe enough, they'd put her on a BiPAP machine. At some point during the night, they did have to do that. She SREAMED like I've never heard before. It was absolutely awful. She would also kick and throw her arms every time she screamed. Every so often, about every 30 seconds she'd do this. Then it was just an angry cry, then a cry, then a moan, then it was just the legs/arms kicking. I thought she was finally getting used to it, but after about an hour the nurse came in and took the mask off and put a different on one. She hadn't been sleeping that whole time and they needed to find a better mask for her. She seemed to tolerate it a bit better from the start, so that was better for her. But her sleep was horrible after that. Very restless.

I am assuming since she was put on BiPAP that she will have to be on BiPAP at home now. They do not tell you any results at all as it is like going for any test - you never get the results right then and there. I was told to schedule the follow up visit for within two weeks. When I called this afternoon to set that up, the lady told me the doctor who heads up the sleep center wanted Peyton in Wednesday - two days from now. SO - I can gather from that that her central (neurological) apnea has worsened and that she'll likely wind up on BiPAP at home. Of course, they can't tell you anything over the phone. I'm pretty good at assuming medical stuff sometimes, though! :) After her first study, done May 19th, her follow up was actually not until July 23rd. However, her pediatrician received the study report and put her on oxygen on June 21st before "officially" getting the report from the sleep center. So, that right there tells me that this time around it's more urgent to get in to see the doctor at the sleep center.

I just called the pediatrician's office to let them know what's going on so they can be looking for the report to come through. It will also help us to be able to get a pulse ox monitor for home that is permanent, unlike the one we currently rent.

Poor Peyton looked pretty beat up once I got her home, but she was in good spirits. I came home, got her bathed and ready for the day and sent her off with Ron and Moira to be dropped off at the babysitter's. I went back to bed. Not for long enough, but it sure was nice to sleep!! I'll go to the chiropractor at 5:30 and then pick up Peyton. Hopefully I'll get to bed early tonight as I'm still fairly exhausted!

I'll update the site once we have the report on Wednesday.

A Ball of Stress

We are continuing to struggle with this whole insurance mess as far as Peyton's physical therapy goes. It was deemed that her therapy was "not medically necessary" which, if you've ever heard anything about Peyton, you'd know how ridiculous that was. It's become an absolute nightmare that we are fighting every single day. It is, of course, not without its effects on us. My chiropractor wasn't even able to adjust my neck the other day because it was so locked up from all the stress. I did appeal the denials, but unfortunately my HR benefits advocate is now backing down and basically saying she wants limited involvement. She informed the insurance company of my decision to appeal without allowing me to gather and sumbit supporting documentation for my appeal. So, my appeal is simply based on my statement "I want to appeal." and is going to be based on all the same information they allegedly have on file for Peyton's claims. So, I'm not exactly sure how that works, but it looks like we'll very likely be out of pocket for nearly 2 months worth of visits (mostly 3x/week during that period). It is absolutely ridiculous.

The hits just keep on coming...

Last Saturday, Peyton's hearing aid (the new one that replaced the damaged one before the holidays) died. It just doesn't work. I don't know why. So, she's again down one hearing aid. Then a couple days ago her right contact lens broke. So, she is down one lens until we can get a replacement.

In positive news, her therapy is continuing and Peyton is making improvements, so that is good. She had a feeding evaluation on the 14th and we're implementing a new method of feeding her which, hopefully, will lessen the risk of her aspirating her food and get more food into her in a safer way without having to resort to a feeding tube yet.

Peyton is going for her 2nd sleep study this Sunday night. That should be fun. It was like torture for her last time, as they hook her up to so many things. She only slept about an hour, in the last hour of the study (or maybe that was me...). So, when the study ends on Monday at 6:30 am, I'll take her home, get her ready to go to her babysitter, send her off with Ron who will be leaving to bring Moira to her daycare, and I'll go back to bed and enjoy my vacation day, hopefully mostly with my eyes closed. I need a rest!!

Not too much else is new...mostly just the negative/stressful stuff that we wish would end soon! I keep hoping things will improve, but no luck so far. If this is some kind of test of our strength as a family....it's getting to be a bit much! If it is to show us no one ever said life was fair...yeah, we get that. There must be some meaning behind all of the struggles that we are going through. It just hasn't revealed itself yet. So, we just keep pushing forward, hoping to achieve some kind of life where things just kind of flow along at an even pace rather than have these extremes we're going through now.

I'll keep you updated on how Peyton's sleep study goes. Have a great weekend.

Not Medically Necessary??

Insurance! Yesterday I was very mildly hopeful for a bright start to 2008. The brightness has dimmed and has all but gone out. Someone with my insurance, in their infinite wisdom, has decided to state that all claims beyond 10/24/07 for Peyton's physical and occupational therapy are deemed to be NOT medically necessary and have been denied! NOT necessary. Do I need to take Peyton to that person myself to show them how ridiculous that is?? Now, that's 3 visits a week since that time that have been denied. They should have be covered at 100% at that point in our medical year. Haven't paid anything yet. This is about to get interesting as once the therapy provider gets wind of the denial, they'll be looking for their money even though, in the meantime, I'll be fighting tooth and nail to make sure we have a successful appeal.

So, at what point does one hire an attorney to fight on their behalf? Of course, that would probably cost more than the claims!

I'm thinking the men in the white coats are not too far away from me right now!! Just another day in the life, I suppose. But seriously, if you are praying people, could you please keep a prayer in your minds for a successful appeal? If we're not successful, this is going to have a serious impact in our ability to bring Peyton to therapy at all as it is quite expensive.

As always, we appreciate your support during our difficult and trying times. This is just the latest of many, but much harder to bear this time.

Happy New Year

Happy New Year everyone!

The Fontenot family survived a 3,400 mile round trip vacation to Canada over the holidays!! Peyton was a little fussier than normal on the journey, but she was a trouper. Moira did great. Thank God for dvd players!

It's a new year with hopefully a brighter outlook ahead. Peyton seems to be doing very well these days. She's getting heavier, that is for sure! She seems like she's getting a lot bigger. She's happy all the time. Her eyes seem to be doing really well since she had that surgery a month ago. I need to find out when we have to go back for a check up, but I don't see any problems myself. Peyton is also improving in her head control and is tolerating being on her stomach more and more. She seems much stronger, though we still have a long road ahead with her therapy.

In the coming weeks, Peyton will have a speech and feeding evaluation at Texas Children's Hospital, a sedated hearing test, and an eye exam under general anesthetic to check on the status of her glaucoma. Aside from that, it's routine therapy and a visit to the neurologist for a follow up where he will measure her developmental progress. That should be interesting.

Moira is doing great. She had her first ballet recital at her daycare on December 20th. She was probably the most distracted of the little group of ballerinas, as she was quite excited that her mommy, daddy and baby sister were all there to watch her. It was very cute and we did get it on video to torture her with in about 15 years or so. Yesterday her daycare had a clinic come in to assess the kids who would be 4 by September (including Moira!) in terms of hearing, vision, and speech/language development. I don't have the results yet, but would be stunned if they weren't excellent. To us, she seems like she's a very bright little girl. The only concern I have is that she will squint a lot lately when she's pointing to something, but I kind of think she's doing it because she figured out how, not because she can't see clearly. We'll see.

Aside from that, it's back to the normal stressful daily grind here at home. We hope everyone enjoyed the holidays and wish you all the best for the new year.