A Better Day

Peyton had a better day yesterday than she had on Monday.  We did not wind up having to take her to the ER as I had feared we would.  She spent much of yesterday on room air.  She even tolerated her school therapists working with her yesterday {they come to see her at home, so that helps}.

Today is another day.  She had some issues overnight with not keeping her oxygen levels up where they should be.  She didn't tolerate BiPap last night, so she was on oxygen.  Even still, she dropped to 61% at one point.  There was a period of about 10 minutes where she kept dropping into the 70s  and then would come back up to low 90s.  It's the drops that are concerning.  I had to suction her at one point.  She had so much stuff in her throat that the suction unit wasn't even able to keep up with it.  It was so think and so much!

So far today, she is back on oxygen while awake.  Her oxygen saturation is low and her heart rate is elevated a little.  So much for the good day she had.

Keep the prayers coming!  They are very much appreciated!

Things Are OK

I realize {after a few people questioned me} that it has been a long, long time since there was an update here!  I just wanted to take a brief moment to update you.

In a nutshell, there's really nothing noteworthy to report.  After Peyton's hospitalization in March, she had some continuing issues with a couple little abscesses in the area.  I finally got one to burst and drain and it has greatly improved.

Peyton continues to have a lot of respiratory issues.  She was sick over Christmas and is still not quite herself yet.  Nothing worth going to the hospital over, but definitely worth calling the doctors a couple times.  She'll run a fever for a couple days...then nothing.  She'll be exceptionally junky and sound horrible for a while.  Well, she still sounds bad most of the time, but I think it's improved a little.

Overall, Peyton seems to be holding her own, although from an orthopedic point of view, I might say that she's losing some ground.  She is constantly dislocating her shoulders {particularly the right one} but also her knees and her jaw!!  It is becoming increasingly difficult to dress/undress Peyton because of her shoulder.  It seems like she is unable to do things that she was doing a few months ago, but I don't know...it's hard to say if that's permanent or just because she's been feeling so poorly since the holidays.

Schooling continues to be a "joy".  She's on homebound, which means the service providers come to her.  Well, they didn't do her IEP until the school year started, when it should have been in place for her to start on DAY 1 of the school year.  She started 6 WEEKS into the school year!!!  And even at that, she didn't have a special ed teacher!  They already cut her back from 4 days a week {an hour each day} last year to 2 days, but to have no one just isn't acceptable.  She finally got a teacher and then when Peyton went into the hospital in October, we lost her and we were supposed to have another.  Peyton took a couple weeks after she got home to recover, and in that time, the "new" teacher decided it wasn't for her, even though she never saw Peyton.  We are still without a special ed teacher.  I am thoroughly unimpressed with the school's ability to follower Peyton's IEP this year.  Disgusted is more like it, but I haven't said much simply because Peyton has had a hard time lately.  The school technically owes her all that missed time, although they would never acknowledge it unless we brought it up.  I did and was told we could meet to discuss that.  Well, no...THEY have been unable to provide a service.  THEY should be working on the solution and doing everything THEY can to make sure she doesn't fall behind {too late!}.  Ok, I could go on for a while about how unimpressed I am with her school this year but I won't.

As for nursing, we still get only 40 hours a week, which simply isn't enough.  However, the government seems to think any more hours would be unnecessary.  It's a struggle to determine the shifts.  I hate it, actually.  We have two nurses and this is the only job for both of them.  I want to make everyone happy.  It's so hard.   I struggle at times to put Peyton's needs first, so I tend to schedule more around the nurses which isn't right either.  It's just not easy to work with 40 hours.  I tried to go 3 days with no nurse a couple weeks ago so that I could make things work out better for one of our nurses {i.e. give her more hours on days she wanted} and it nearly did me in.  I am constantly exhausted.  That has never changed.  I can't seem to get past this exhaustion.  Anyway, I decided for myself that it isn't fair to me to do that.  Sigh.  The only way to get more hours is for Peyton to wind up sick enough to be hospitalized...but with something that would allow her to get more hours when she gets out.  And that would only last a couple weeks anyway.  We got bumped up to 56 hours after her October hospitalization for 2 weeks.  It was so helpful, even if it was still significantly less than the 80 hours we had been getting.  It's a full time 24/7 job {I hesitate to call it that since Peyton is my child}.  I can't go on forever like this!

Anyway, that's it in a nutshell.  I haven't been writing here, but I have been blogging...a LOT over at The Fontenot Four which is my personal blog.  It started like a "family" blog, but it's really just my space to write whatever I'm feeling inclined to write about.  Almost entirely positive stuff with no focus on the negative side of life.  If you haven't been to my blog, I encourage you to have a visit!

Evaluation

Peyton had her evaluation at The Arbor, the special needs school where we hope to have her one day. She spent time with the lead teacher in the infant room as well as the "consulting behavior analyst" / psychologist. They would love to take her now, but due to space limitations, they do not currently have a place for her. However, they are in the process of building a new school, so hopefully in the next 8-12 months they will have a spot. So, we're on the waiting list. You can check out the school at www.arbor.org.

I had a phone call from the child care licensing agency with which I filed a complaint against the girls' former daycare facility. The agent wanted to ask me a few questions about the situation. She did visit the daycare on the 20th and spoke with the directors as well as the teachers. It would appear that a couple un-truths were told at the time. I quickly clarified them. It sounds like a teacher may have told her that when Peyton would roll, her hearing aid would fall out, the battery compartment open, and she'd put the battery (??) in her mouth. LIE!! First of all, Ron and I have trouble opening the battery compartment because of the size. They lock tight. The battery compartment would never just pop open. Second, a child her size or even older would not have the manual dexterity to be able to open the battery compartment themselves. So if a hearing aid fell out or was pulled out, a child could not open them.

Anyway, at the end of the conversation, it appears the former daycare will, in fact, be cited with failure to use good judgment where Peyton's placement is concerned. That is, by firmly deciding that Peyton was to move up to the 1 year old room against our wishes and her doctor's, they were using poor judgment. The agent had a copy of the pediatrician's letter we provided to the daycare which outlined all of the reasons for not moving her up as well as a statement that the doctor was confident that Peyton would not have progressed enough by July to be able to be safely placed in the 1 year old room. It sounded like even the agent believed all the reasons we had for not putting her in that room. Also, the agent said that with all the therapists going in and out of there on a weekly basis, how it never occurred to the daycare directors/teachers to ask THEM what they thought about moving Peyton up was beyond her. They had people present constantly who could have explained to them how dangerous it would be. They could have asked them at any point in time, and didn't. It is noted that we have removed our children from that facility before Peyton could be placed in that room. However, had we not moved them out and Peyton was moved up next month, they could have been further cited for failure to use good judgment AND something to the effect of inappropriately transitioning a child. Would be nice to catch them on other things, but I'm happier just to have my children out of there.

Touring The Arbor

We had our tour of The Arbor this morning - the special needs school Peyton's pediatrician recommended for her. There was us, another couple, and a woman there for the tour. The director and the consulting behavior analyst provided the meeting and tour. In the initial meeting, we each “introduced” our kids (it was parents only). They told us a bit about the school and then took us on the tour. There are multiple small buildings which make up the tour. They have a very small (emphasis on “very”) therapy building. In the new school they are building, the therapy facilities will be about 2,000 sf. We went to the infant/toddler area. There were 3 kids there. The youngest was 16 months – a girl named Payton. They had these special chairs 2 of the kids were in. They were low to the ground, on wheels, and had a large table/tray attached, so they were like mini high-chairs. The lead teacher in that room (there were 3 teachers) gave a very detailed description of what they do there. The programs are geared towards the individual. The kids are not geared towards the program. Every child has goal sheets and they track data all day long. The first thing they teach is “Look at Me” which focuses on getting the child to make eye contact. They have goals for number of times they can do it and increase the length of time they do it. They said that if they can’t look at you, they won’t learn. They teach sign language. They had a 2 year old boy in there and she was asking him to do various signs and he did every one. She said he’s at about 65 signs that he uses regularly.

We were taken to all the classrooms to see what they did in each. The director and analyst were both very participatory in the classes on the tour. Even though they are the administration, they knew every child’s name and offered praise when the children were doing appropriate things. It was really nice to see how involved they are in every child’s education. There wasn’t always a 1 on 1 teacher student ratio, but if it wasn’t 1 on 1 it was 1 teacher for 2 students. They have a lot of teachers and aids. They also have a lot of high school kids volunteering. Mostly from private schools where they require credits for service projects or something in order to complete certain education requirements. They said that a lot of these kids often go on to special ed work after college. The teachers in each class would describe how their curriculum works but the class didn’t stop for us. They all just went about their days. The kids were happy to see all of us and were all smiles and saying or waving “bye”. In one of the classes, they had a couple kids using “talkers” (I think that's what they called them). They each had a different kind, but essentially they are little computers with touch screens showing icons. I think you can change the screens to have different sets of icons for different themes. It’s so that non-verbal kids can use words and work towards stringing together sentences by keying in these icons so they can “speak”. They key it in and the computer says the word for the icon.

They have on-site therapists. That is billed through insurance, so it’s separate from the cost of the school. School hours are 9 - 2:30. They have before school care from 7:30 and after school care until 5:30, but they are at their limit right now. If for some reason she could get in now, we would have no before/after care. Peyton will go for her evaluation on Monday at 10 am. It’s mostly with the analyst guy we met today. They’ll have her in a class and do things with her and observe and figure out what program she’d be in. It’s my impression that the classrooms are more or less age-appropriate, but the “program” is how intensive their curriculum is while they are in that class. The tuition is from about $12K a year to over $28K a year. They do have financial aid, but not full scholarships. I suppose we’ll get into that once they figure out where she’d wind up.

I'm just happy to know that a school like this exists and hopefully we will be able to get her in in the not too distant future. I'll keep you updated on how the evaluation goes.

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.

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!