School!

There just hasn't been a whole lot to report lately. I suppose that is a good thing! Peyton went to the elementary school nearby this morning. They have an audiology program. When we received her new ear molds for her hearing aids a week or so ago, for the second time in a row, they had a bad fit and were squealing all the time. I decided not to go back to her own audiologist, but to take advantage of the one at this school. I had to pay for the ear molds instead of being able to run them through my insurance, but they don't cost too much. It's close to half what the hospital charges. I got to see the classrooms for the hearing impaired kids. One is oral communication and the other is oral and signed communication. We won't know for a couple years if Peyton will wind up at that school. She may do well enough to take part in a special needs class in her regular school.

We're signed up for Peyton's sleep study for Sept. 6th. In the first week, they called me twice with cancellations but we couldn't make it either time. I think we'll likely get it done before Sept. though. We'll see.

Not too much else is new. I'm on my third throat infection in just over a month. Moira's getting over a cold but doing well. I wish I had a fraction of her energy!! Ron is also doing well.

Not much longer til my baby turns 1!! I don't know where the time has gone.

Neurology and Second Opinions

I took Peyton to see her Neurologist yesterday. It was a rather uneventful visit. It was nearly an hour each way to get there and back. I had to wait in the waiting room for nearly an hour before getting in. The doctor actually comes to the waiting room himself to get you when he's ready, so when you go back into an exam room, you don't have to wait for him. That is, except for when he spends ages reviewing Peyton's file, realizes something is amiss and gets up, leaves the room, corrects a letter he sent to Peyton's Pediatrician, comes back, reviews the file some more, realizes another typo on the same letter, goes back......you get the idea. It was a long visit. It was a 3:00 appointment. I left the house at 2:00 pm and was home at 6:00 pm. Fun!

In terms of how Peyton's progress is going. Well, that too is a bit of a mystery. You have to understand this doctor is probably an absolute genius. He tends to think out loud sometimes. Except for this time. I think he thought a lot in his head, reviewed his notes, raised his head to ask me a question or to, thought some more....and that was pretty much it. He didn't comment a whole lot. He did say he wanted to order an MRI. I brought up the second opinion we had with the Neurosurgeon earlier in the week and how that doctor has already ordered and scheduled one. We briefly discussed this doctor visit and the upcoming MRI.

He is just stumped, really. It was an odd visit. I guess no news is good news in this case?? I know he is concerned about Peyton judging by the number of research articles he has in her file. I think he must always be thinking about her case and wondering what this could possibly be in terms of a general diagnosis. I guess he just didn't have much to say.

Peyton's rolling over now pretty well. She scoots a bit on her back - not too far - by digging in her heels to the floor. She's trying a little here and there to raise herself with her arms when she's on her tummy. It's a very difficult process for her as she has little strength in her arms right now.

We finally got properly fitting ear molds for Peyton's hearing aids in the mail yesterday. We were so grateful to have these so she can be wearing both aids all the time. The right was was so ill-fitting that it screeched all the time and it was very irritating to one and all, and probably to Peyton as well. So, now that they fit and are no longer screeching, Peyton has discovered she can grab her hearing aids, pull and yank them out. Once she's accomplished that, she thinks it's kind of fun to try to eat them. Not sure how to break that habit!! That could turn into an awfully expensive snack!!

Our Zoo trip is in the morning tomorrow. I wonder how that will go. I wonder if it will go. It's supposed to be kind of stormy overnight in some areas and possibly rain in the morning. I hope not. We were really looking forward to it. Maybe it will be clear over by the Zoo. Keep your fingers crossed!!

Have a wonderful weekend!

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.

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!!

Peyton is Sick

We had such a good week last week! Then things turned a little for us. Peyton had a little fever on Saturday and was fairly fussy. At 6am Sunday, she woke up screaming which is very unlike her. She was burning up - had a temp of 102.2. We did everything we could to try to bring down the temperature, but she hovered between 100.5-102 almost all day. We talked to a nurse at the pediatrician's office first thing in the morning and she thought it sounded like we were ok to wait til Monday to see the doctor.

We saw the pediatrician on Monday and it looks like Peyton had some sort of virus and possibly a bladder infection. Her fever broke early Monday morning and did not return. She was able to go back to her daycare on Tuesday.

When the doctor weighed her, Peyton weighed in at a whopping 16 lbs 12 oz!!! This was fantastic news. Her goal weight for our next visit to the Gastroenterologist on 2/15/07 was 15 lbs 8 oz, so she's doing great. Our concern now is making sure all of her feedings are by bottle and not the tube. She was doing good til she got sick - probably 90% of her feedings were by bottle. Now it's the other way around. Hopefully that will change as she starts feeling more like herself.

I took Peyton to her glaucoma specialist this morning. Her eyes are looking pretty good. The left eye (the one to have the shunt put in most recently) is a little hazy, so probably the pressure is still up a bit, but it may go down over the next day or so as the suture inside is now at the point where it is dissolving. She needs to be fitted for a new contact lens for her left eye as her current one is not sitting in place properly.

All in all, it's been a good week, feeding issues and virus aside. We are still waiting the results of the genetics testing from the skin biopsy done on 1/8/07. Hopefully we won't have to wait much longer.

Moira's doing great. I can't believe she'll be 3 next month!! Where did the time go?? We're debating having her birthday party at Chuck E. Cheese. I'm sure she would love that.

Peyton's hearing and vision teachers are coming this afternoon. I'm sure that will go well. They haven't been here together before. They only share a few students. They wanted to make sure they were on the same page as far as what they were doing to work with her. That is a good thing.

Will keep you posted on how Peyton is doing. Seems like we've finally gotten into a good stretch where we don't have a whole lot going on with her!! I can handle the ordinary things like hearing/vision teachers and occupational therapy!

Nutrition

The nutritionist came to the house this afternoon to weigh Peyton. Just as we'd suspected, Peyton is not only pushing 16 lbs, but has exceeded 16 lbs. She tips the scales at 16 lbs 3 oz this afternoon! This puts her almost a pound ahead of where she needs to be by Feb. 15th. This is wonderful news indeed.

Peyton's hearing teacher came to the house after that. She comes once a week and works with Peyton as well as us. She teaches us some basic sign language. She uses toys with Peyton and tries to get a feel for what she can here in relation to where sounds are coming from. She emphasizes repetition of words with Peyton. It's really important to talk, talk, talk and repeat everything over and over so she can grasp language more easily. She said that with Moira, she'll pick up language from things all around her - even things she'd not paying direct attention to. With Peyton, much of her language will come directly from the one on one contact she has with people speaking directly to her because she won't necessarily grasp the "background" things as easily as a hearing person would. The teacher works with the school district. Peyton's actually registered for school - has been since she enrolled in the Early Childhood Intervention program after birth. She's registered in the Regional Day School for the Deaf. While ECI goes til the 3rd birthday, the hearing and vision teachers are through the school district and will continue through her school years.

We're so proud of Peyton for having a great day today!