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.

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.

Swallow Study

I just got back from taking Peyton for a swallow function study at Texas Children's Hospital. They wanted to be sure she's swallowing properly when eating - make sure all the right parts are working. Well, they aren't. The speech pathologist called the doctor who ordered the test but he's out of the country. Even though she is eating, feeding her is not without a great deal of difficulty if it's by spoon. She can handle her bottle herself. However, the study showed that she is aspirating a fair amount of food - liquid and the pureed baby food - when she is eating. She is also not using her tongue at all. When feeding by spoon, you basically have to scrape the food off on her upper lip to get it in her mouth and let her take over from there, but she's not using her tongue at all. That means she's just letting gravity make the food fall to the back and be pulled down her throat, increasing her likelihood of aspirating her food. Aspiration of food is probably why she always sounds congested. It is also putting her at great risk of getting pneumonia, which she has already had once back in May. With all her other issues, that is not a good risk to have. The speech pathologist needs to talk to the doctor, but very likely we'll be referred back to the gastroenterologist and will very likely have Peyton put on an NG tube (feeding tube down the nose) for a few months, all while receiving intensive speech and feeding therapy (hoping we can get her in quickly!). After a few months, they'd repeat the same study. So, while she'd be on the NG tube, there'd be no food by mouth meaning her oral-motor skills could potentially worsen since she wouldn't be eating (though therapy would help that hopefully) and she would become more orally defensive. She already is quite orally defensive, so I can hardly wait to see how "worse" would look.

Once again, she takes a few steps forward and many, many steps back. Not at all the news I was hoping for today.

Ear Tubes

Peyton had her ear tube/adenoid surgery Friday morning. She was to have been first up, but they were waiting on her prior anesthesia records from her surgery on the 9th to see if there were any problems to be aware of for anesthesia. Since the child up 2nd was having a very quick procedure to remove his ear tubes, they put him in front of Peyton. Sure enough, the records arrived and 15 minutes later we were on our way back with Peyton. It was 39 minutes from the time I sat in the waiting room til her doctor came in to let me know how it went. She did very well. Her adenoids were blocking about 50% of the back of her nose.

We spent the night at the hospital, even though the procedure is out-patient. Since she has the sleep apnea issues, they wanted to monitor her breathing overnight to make sure that any swelling from the surgery was not interfering with her oxygen levels. Her oxygen saturation stayed mostly between 96-99% the whole time. The doctor came in this morning and said she was good to go. We were home just after 11:00.

Of all Peyton's surgeries (this was #11), this was probably the most minor. Of all the surgeries, this was the one that caused her to be the fussiest! It was a rough night for her last night, but she is doing well.

Home!

Peyton came home today! We were home by about 11:00 or so this morning. She is doing really well after her surgery. She occasionally will get fairly fussy which leads me to believe she's still in some pain. I can't imagine her not having some pain! She is becoming more and more active, which is good. The doctors told us to just let Peyton be herself and not restrict her movement too much. We were told that if she can get moving her neck as she normally does, it will help her out in the long run.

She is still pretty congested, so hopefully we can get that knocked out pretty quickly. It makes me a bit nervous considering her hospitalization for her congestion back in May. However, I am sure they wouldn't let us leave today if she wasn't well.

Peyton's not 100% her happy little self, but she's getting there. She's definitely quite active now and is making us nervous with her head movements, but we realize it's good for her to move. We get to take the dressing off her incision tomorrow. How fun. She just has steri-strips holding the incision together. We will follow up with the Neurosurgeon next week.

Going Home!

Oh Happy Day! I just spoke with Sarah and she shared the wonderful news that Miss Peyton was seen by the neurosurgeon's resident and he has given his approval for her to go home at some point today!!

Peyton had a fairly decent night. She is still quite congested and is getting suction treatments. Two different pediatricians have been keeping tabs on Peyton because of this problem. She was given Benadryl to ease the congestion, which they feel is a normal after affect of the surgery. She is being moved around more today - being held upright in order to ward of pneumonia.

During the night and early this morning, she had some fussy periods because of the pain. I believe she got Tylenol to ease that pain.

Peyton's blood oxygen levels continue to be very good. After surgery, they were between 97 - 100%; Thursday night they were 89% and higher while she was having her breathing problems; yesterday, with her congestion, they were between 92 - 95%. This has totally baffled the neurosurgeon who thought the surgery "might help the apnea a bit". So far, she has not required her oxygen.

Once Peyton is home, she will have to be watched carefully. She has to be very careful regarding neck extensions, etc.

Hopefully the whole family can now get some rest and enjoy being home together again. Way to go Peyton! We continue to cover you in prayer and thank all of your prayer warriors.

Granny

Post-Surgery Update

After a very interrupted night, Peyton seems to be faring a bit better this morning. Yesterday, her breathing sounded very raspy and she was quite hoarse (stridor). When she was breathing, her chest was being sucked in. Last evening, when the neurosurgeon saw her, he was concerned about her breathing. Before long, there was a flurry of activity to determine the cause. Her BP was elevated a little too. After much poking, prodding and a chest x-ray, it was decided that the problem was caused by inflammation of the vocal chords as a result of being intubated during surgery. She is being given steroids by IV every six hours to reduce the swelling. After her first treatment, there was an improvement. This morning, her hoarseness has diminished, but she still has a lot of congestion in her throat.

Peyton is managing to take her bottle today, which is a good sign. When I spoke with Sarah, she was holding Peyton and I could hear that she sounded a little better. Although pretty tired, Sarah is quite pleased that things are a little easier for Peyton today.

Once again, thank you all for your prayerful support.

Granny

C1 Laminectomy

Sarah has asked me to update the site for her. Peyton came through her surgery very well. When I spoke to Ron an hour or so ago, she had been moved into phase two of recovery. Right now, they are waiting for her to be moved into her own room. The doctor was pleased with the surgery. Peyton was in some pain, so she has received medication for that. She is still pretty sleepy and has only stirred a few times. She isn't too interested in taking in any fluids - just a couple of drops. Since the discovery of her sleep apnea, she has been using oxygen while asleep. When Ron and Sarah went into the recovery area, Peyton was asleep without oxygen. She is in quite a deep sleep and her blood oxygen saturation was about 98% ~ so, she is able to breathe on her own at present. I'll leave it to Sarah to add in all of the details, which she will be most anxious to do and will do better than I can.

Thank you all for your love, support, concern and prayers.

Granny

MRI

It's been a fun week. Peyton's sleep schedule is completely turned upside down! She was up til 3am last night...only after Moira had been up since 3:30am yesterday morning!! What a fun day that was!!

Peyton went to Texas Childrens with Ron today for her MRI. She was able to have it done!! She's a trouper. She was quite playful when they got home. She was really in good spirits. A little difficult to get to sleep, but she is asleep now...hopefully for the night.

Peyton's eyes are still very red, but she is opening them more. There's still a lot of "goop" coming out of them, but they are looking better bit by bit. Of course, if anyone were to see her, they still might wonder what happened to her!

Glad to have her eye exam/surgery out of the way and her 12 month MRI finally done at 14 1/2 months! Her neurosurgeon should have the report by Friday. We meet with him on Tuesday next week to discuss the MRI. I'll keep you posted.

MRI: A No Go

Well, I took Peyton to Texas Children's Hospital this afternoon for her MRI. Since it's sedated, they had to thoroughly evaluate her to make sure she was in good enough shape to be sedated. Added to my growing list of frustrations is the fact that she could not have the MRI done today. They felt that she was still too congested and sick from her virus/pneumonia almost a month ago. True, she is still a bit congested, but much improved. She has actually had surgery under similar health conditions. Different doctor, different result I guess. There was also a scheduling mix up. We were told it would be done at the hospital, but when I got the reminder call on Friday, it was to be done at their clinical care center which is like their big doctor's office building across the street from the hospital. That's where almost all of her doctors are. I thought it was odd, but went with it. Turns out it should have been at the hospital a) because of her age, and b) because of her newly diagnosed apnea. Also, unbeknownst to us, we should have brought her oxygen with us because they'd want her hooked up to it on the ride home and for the remainder of the day after being sedated. So it was a big mess all the way around. They rescheduled it to be at the hospital itself on June 22. I tell you, nothing is ever simple in our family!!

We had a nice Memorial Day weekend. We went to Ron's mom's near Beaumont on Sunday for our nephew's big 5th birthday party. It was a "Cars" theme. Very cute. Braeden got a pretty good sized inflatable pool, so that was set up and the kids (not Peyton!) went swimming (or splashing as the case may be). Then on Monday we decided to take a drive in the other direction to go for a picnic at a park in Austin. Well, the picnic was rained out, so we drove to Ron's Aunt Jaynie's house. She lives in Kyle, just south of Austin. His cousin Jill came over. Ron and I (mostly Ron) got a power nap before hitting the road to come back. The kids are good travelers, but Peyton had it by the time we were 30 minutes from home. Poor baby. She just cried and cried the whole rest of the trip. Moira tried to "comfort" her by singing. Of course, I think only dogs could hear her. Perhaps that was the cause of Peyton's screaming! I swear, I heard Moira say, "Oh, Peyton. Don't be discouraged!" Well, it was something pretty close to that, although who'd have thought she'd know the word "discouraged" at the age of 3. Perhaps she's heard it around our house a few times?? Poor kid!!

Peyton will see her Ear, Nose & Throat doctor on Thursday afternoon. The doctors are wondering if there is possibly a structural abnormality of her airway, or enlarged tonsils or adenoids which are contributing to some of her sleep apnea. You know, if they could just fix it all surgically, I'd say let's get it done! Waving a wand to fix it would be better, but that's not likely. Will keep everyone posted on how that appointment goes.

Hope everyone had nice long weekends either last weekend or the prior weekend, whether in the U.S. or Canada!

3 more days til hurricane season!! Yikes!

Second Opinions

Ron and I took Peyton for a second opinion from a Neurosurgeon with Texas Children's Hospital today. She had previously seen a Neurosurgeon with Children's Memorial Hermann Hospital on three separate occasions. She saw him in the hospital after she was born and we followed up with him after a couple months just for a consultation. She saw him a second time when her Neurologist had concerns about the possibility of the bones of her skull fusing prematurely. She saw him the third time after she had her 11/30/06 MRI and CT Scan which showed a disturbing unexpected finding - there is a tightening at the cranial-cervical junction with decreased flow of cerebral spinal fluid. On each visit, the Neurosurgeon stated she didn't require surgery and probably would never but he was happy to be used for consultations as needed.

The 11/30/06 findings were disturbing enough to Peyton's pediatrician for her to recommend that we get a second opinion from a Neurosurgeon at Texas Childrens Hospital. While the first doctor tends to be more conservative, this one is apparently more aggressive.

I was quite worried going in to this appointment, fearing that she would have to have surgery after all. Fortunately, that is not the case. That said, the doctor is not without his concerns. He is concerned about the stability of her neck. He sent us for x-rays on her neck in normal position, tilted back, and chin tucked to her chest. If everything seems stable, we'll watch it to make sure it stays stable. If it is not, then that will require something to be done. However, the surgery to fuse the bones could not be done in her case because she is too young. The bones are just cartiledge right now and would not fuse. She'd have to be fitted with some sort of brace. Hopefully it doesn't get to that point. The Neurosurgeon ordered another MRI to be done at Texas Children's Hospital in 4-6 weeks. He'd like to see how Peyton brain development is progressing (or not progressing).

In other news...Peyton is going to have a sleep study done. I'm waiting for the call to set up that appointment. In the past couple weeks, we've been noticing that when she is sleeping, she will take a few really deep breaths and then just not breathe for several seconds. Then she repeats that pattern. She doesn't do it the whole time she is asleep or even every time she falls asleep, but it's a new thing we've noticed. I called her Pediatrician and she said it can be normal for babies her age to pause for up to 10 seconds, but with Peyton, you just can't be sure that that is what it is. She wants to be sure it isn't the progression of some neurological problem, so she has ordered a sleep study. I'm not sure at all when that will take place.

We've been invited to the Zoo this Saturday. Peyton's hearing teacher mentioned that the itinerant teachers (hearing and vision) are having a family day at the Zoo for their kids. It sounded like a good opportunity to maybe meet some people who at least know what it's like to have a child with hearing and/or vision problems. I'm sure no one there will be in Peyton's specific situation, but it'll be nice to finally meet some people here who know what it's like to have a special needs child.

As always, life is an adventure and we're just never quite sure where it's going to lead us!! We hope you are all well and that you had a wonderful Easter.

Genetics Update

We are back from seeing the Geneticist. He did a pretty thorough examination of Peyton. Since she's already had all sorts of genetics tests done, he said they need to go back to the books and search databases for rare disorders. He did have some blood drawn to test for a couple other disorders but it's a long-shot. He said there is also a study that could be done on her which is even more detailed. However, in order to have this test done, you have to be a part of a clinical research group, so Peyton was added to the list. I am not sure when the study begins, but we'll find out. This afternoon the doctor was going to discuss Peyton's case with his colleagues to get the opinions of those doctors. I guess they have these conferences periodically. Also, he is going on sabbatical for a year. That was news. However, he said that he would try to stay on her case while he was off. He told me not to be discouraged...they will figure it out. It just might be a while. He said it can sometimes be just as frustrating for them as it is for the parents when dealing with something so rare. He does believe that she has some syndrome. She has too many things going on with her to not be some sort of syndrome. We'll have the test results in a few weeks. I'll keep you informed.

Hearing

Peyton had a sedated hearing test (ABR) yesterday at Texas Childrens Hospital. She has these every three months or so. The end result is that her hearing has stayed about that same since her last test in December. In December, the audiologist noted that her right ear was a little worse than the test prior to that. This time, she noted that for some reason the nerve doesn't seem to be functioning as well as it was in December. She was at a loss as to what that was all about since her hearing was basically the same.

Later on today, I will be taking Peyton back to Texas Childrens where we will have her 6-month check up with her Geneticist. Yes, I know...she's 10 1/2 months now. This appointment was originally scheduled for October. However, due to surgery, we had to reschedule. Today was the first available appointment. That taught us pretty quickly not to cancel out on a specialist! Of course, there wasn't much we could do about it at the time. I'm anxious to go over Peyton's history with him as the only time he saw her was in the hospital after she was born. She'll probably have some more testing done. She's been tested for hundreds of genetic disorders already and so far nothing has come up. I just wish we could put a name on what this is. Most of her doctors feel that her constellation of problems has to be some sort to syndrome. Unfortunately, she could be the first person with it! We may never know. Anyway, hopefully this brilliant doctor will take a look at the doctors notes I'm bringing and it will trigger something for him and we could be on to another lead. Will keep you posted!!