Update

This has been a relatively quiet week for us. Peyton only had 3 appointments this week. Her vision teacher saw her on Monday. She said that Peyton is tracking really well as well as reaching and grabbing for things. She had her on her tummy and she did really well trying to lift her head. She also tried to work with her to get hre to roll over. On Tuesday evening, her new Occupational Therapist saw her. She also commented on how well she seems to be doing. Since this was her first time seeing Peyton, she didn't have any personal experience with her to compare to, but based on what others have told her and what she's read in her file, she has come a long way. The OT is also Peyton's new case manager in the Early Childhood Intervention program. Yesterday, Peyton saw her Ear, Nose & Throat doctor. Once he removed the big balls of wax from her ears, he said that her ears were clear with no fluid build up. Everything else checked out ok. He said he'd see her again in a year as long as nothing else comes up in the meantime.

In the next few weeks, Peyton will be seeing her opthalmologist (the glaucoma specialist). She'll probably have an eye exam done under general anesthetic around 2/05/07 or 2/12/07. That will likely be scheduled when we see him on the 1st. Or, maybe (crossing our fingers) she can skip it this month if all looks good on the 1st!! That would be nice. I'm no doctor, but her eyes look good to me. This would be the first month since August she may not have to have surgery. We see the GI doctor on 2/15/07. We are really hoping that we can get rid of the feeding tube at that time. Peyton's already far exceeded her weight expectations for that appointment, so I can't imagine why they'd keep the tube in. She had said in December that they'd probably quit cold turkey when it's time. So we really need to work on getting Peyton to take all of her feedings from her bottle. That isn't quite happening yet.

Thank God for a good week!! It's been a long, long time since we had a week that was entirely good news.

Roll Over!

Peyton rolled over for the first time by herself last night!!!! Way to go, Peyton!! Mommy & Daddy are SO proud of you!

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!

Neurosurgery Update

Peyton went to the neurosurgeon this morning. We are so happy to report that she does NOT require any form of surgery!! Thank God! The doctor felt that he could probably fade into the background in terms of Peyton's care because he really didn't see the need for any type of surgery at all. He was happy to consult though. He said we are to watch her development as we have been doing and if she ever starts to not do things that she once was doing or was trying to do, then that should raise a red flag and we'd have to figure out what was going on.

After that appointment, we went downstairs one floor to her opthalmologist for a check up. She had great reflexes in her right eye and none in her left. That was not unexpected since she just had surgery on her left eye on the 8th. We are to follow up in 3 weeks.

We're in between appointments now. Her nutritionist comes in an hour. Peyton was supposed to weigh 13.5 lbs by the 15th of this month and we had her at about 14.75 or so about a week ago. As of a couple days ago, we think she's probably pushing 16 lbs. She was to weigh 15.5 lbs by Feb. 15th, so if she's 16 lbs now, we're doing great! I'll keep you posted.

Thank you everyone who has taken the time to send messages to us or sign the guestbook on this website. Your support, as always, is much appreciated.

Beginning a Journal

We took Peyton to her neurologist yesterday afternoon. He is extremely dedicated to her case and is constantly researching. He is baffled by all of Peyton's conditions. Until recently, he could not find a single syndrome which could explain why Peyton was born with all of her issues.

Peyton had an MRI done on 11/30/06. It confirmed the things we already knew - the partial agenesis of the vermis and underdeveloped cortex. She had been classified as having a Dandy Walker Malformation. In addition to these problems, it was noted that she has a possible dismyelination disorder - the brain is either not myelinating at the normal rate, or it is myelinating abnormally. Neither sounds good. Also of significance was the presence of a bony protrusion and a tightening at the craniocervical junction. We are to see a neurosurgeon next week, 1/18/07, to find out if surgery is recommended. We don't know a lot about what this means, but the doctor has some serious safety concerns with Peyton. There is the possibility that if she were, say, to get whiplash, a very serious spinal injury could result. We need to be extremely careful with her.

In his reasearch efforts, the neurologist has come across the possibility that Peyton may have Trisomy 17 Mosaicism - a variant of Trisomy 17 where some cells have an extra 17th chromosome. There are only 4 known cases of this syndrome in the world. When Peyton had her latest glaucoma surgery on 1/08/07, her neurologist went in and did a skin biopsy in order to have some genetics testing done for this syndrome. She did have genetics testing for 500+ disorders and that all came back fine. This disorder is more subtle than what can be detected thorugh a blood test, hence the skin biopsy. We will see what that testing reveals.

This particular visit to the neurologist was probably the scariest. He is very concerned for Peyton in terms of her safety, her mental and her physical development. He did not say a whole lot, but we felt very much like this was the most grim he's ever been.

We'll keep you posted once we see the neurosurgeon next week.