Wednesday, December 12, 2007

Post-Surgery & A Fever


Peyton is bouncing back from her surgery finally. She spent most of the weekend being very sleepy and eventually a bit on the cranky side. She was finally opening her eyes more than half-way by the end of Monday. She's doing better with that now. Now, though, she is starting to rub her eyes a lot more, which is something we do not want. That will introduce more bacteria to her eyes and worsen the problem. I think what's happening is that her eye lids are in the healing process and are probably very itchy right now. Hopefully she can tolerate the compresses and medication enough to give her some relief.
Last night, Peyton came home from her babysitter's with a 102 temperature and her breathing sounded extremely congested and "crackly". I had great fears about pneumonia developing as it did back in May. Ron's home with her this morning and I'll leave work early to be with her this afternoon. Hopefully she can see her doctor and rule this out. Ron said she sounds a bit better this morning and her temp is down a bit. That is good news.
All of this makes us feel like "Can't the Fontenots EVER catch a break??" It seems like we just can't. I know that better, easier times are ahead. I have to believe that. But just when you think things are looking up, something always comes up. I just feel so badly for her to be going through everything she goes through. It breaks my heart that that's what her life is right now.
I'm very anxious now for our vacation, which begins on the 21st. We'll be hitting the road around 3am on the 21st and driving as far as Illinois. The kids are great travelers, thank God, so that shouldn't be too bad. Just a long day. The next day we'll drive to Green Bay, WI to spend a night with family there and then on the 23rd we'll arrive home at my parent's house. Yes, it is a long drive, but right now I'm thinking it sounds GREAT compared to what our every day life consists of at the moment!! We need that break - the change of scenery and change of pace.
I'll keep you updated on how Peyton is doing.

Friday, December 7, 2007

Another Eye Surgery

Peyton had her surgery this morning. We had to be there for 5:30 am. We got home around noon. The surgery was much longer than I thought it would be. When the doctor checked her eyes, she counted no fewer than 5-6 chalazions in each eyelid, upper and lower. So that's at least 20-30 with there being more than 6 in a couple. After the surgery, the recovery area likes to keep them til they are alert and able to drink some fluids. She never really woke up. She stirred a couple times. I did finally get her to take a bottle but she was still pretty out of it. We got home a little before noon and she has been sleeping ever since. She stirred a couple times and took another bottle, but she's really out of it. I don't remember her being this wiped out after any general anesthetic before. Hopefully she'll perk up soon. Her eyes look terrible right now. I'm not really anxious to start giving her the ointment which has to go inside her eyelids. The doctor thinks she is aggravating the problem herself by rubbing her eyelids so much, so she's become very prone to getting them. We have our instructions on how to help her over the next several months. Hopefully that will break the cycle.

Wednesday, December 5, 2007

Hearing Aid Update


I called Texas Children's Hospital first thing Monday morning regarding Peyton's hearing aid. Within 15 minutes I'd been sent a claim form, filled it in, had it notarzied, and faxed back to the audiology department. By mid-afternoon, the lady was calling me back to say the company where it is being ordered from had it ready to ship. It should be in hopefully today, but then TCH will have to program it and then call me to pick up. Sounds like we should be back in business before the week is out!
Peyton's eye continues to flare up with those chalazions. We're thankful she's having this surgery. Hopefully that will give her a fresh start and we can break this vicious cycle.
Enjoying the "cold" weather in Houston (it's gone down into the mid 30's overnight and was 50 this morning driving in). I miss the snow, but will be so happy to see it in a couple weeks when we travel north for the holidays!

Monday, December 3, 2007

Death of a Hearing Aid


Wow! I can't believe it's been nearly a month since I updated this site! I guess no news is good news, right??
Actually the past month has been relatively good. Peyton's physical and occupational therapies are progressing well. She still has a very long road ahead of her, but those of you who haven't seen her in the past several months would really see a huge difference. She still is not sitting unsupported. Her head is still not 100% stable. However, she's really improving her strength. She is tolerating being on her stomach so much more. She will raise her head while on her stomach, and stay in that position for some time now. When she's on her back, she will sometimes raise her head and lift her feet off the ground at the same time, and then roll to the side.
We have not yet seen the gastroenterologist regarding Peyton's feeding/swallowing issues, but that is scheduled for this Thursday. That said, we need to reschedule. Once again, Peyton is having a really rough time with those "chalazions" (sty-like bumps) in her eyelids. Her left eye is particularly bothered by them. I took her to her ophthalmologist last week and I don't think she was thrilled that they weren't taken care of by the other ophthalmologist when he did her eye exam under anesthetic back in October. To his defense, they were not actively flaring up at that time, and I could see where he would not have done anything. Peyton is having surgery on Friday to remove several of these bumps. This is surgery #13, general anesthetic #17.
Peyton's left hearing aid suffered an untimely demise yesterday. We'd gone to church, then out to lunch, then home again before going to have Santa pictures done at the mall. When we were getting ready to leave the house for the mall, I noticed her hearing aid wasn't in her ear. She does pull them out from time to time, so the search was on. When we failed to find it in the house, outside the house, or in the car, we got back in the car and went to the restaurant parking lot where we searched around the vicinity of where we had parked. Peyton had been in her stroller in the restaurant, and we thought it was possible she threw it overboard while in the restaurant (thought not likely) or she pulled it out or it fell out and it was in the stroller, unknown to us, at the time Ron collapsed it and threw it in the back end of the car.
We didn't see anything immediately by where we'd parked, so Ron ran in to the restaurant. He began asking the owner and they looked around our table. A lady popped up and said "Did you lose a hearing aid?" Ron excitedly said he had. She said, "I found it!" Well, thank God! He asked her where it was and she said she saw it in the parking lot and put it on the hood of our car. He asked what she meant, so she took him out to the parking lot, saw our car and said, "Oh, I guess it wasn't your car and they left." The lady left and Ron began a one-hour search of the entire parking lot and exits to the main road. The restaurant is in a large strip mall so it was not just a small single-business parking lot. Did I mention it was starting to rain?? Electronic devices don't tend to do well in water, so I was SO hopeless at this point that we'd get it back in working order.
Well, the search did eventually end with the discovery of the hearing aid. It was on the main road (which is an extremely busy 6 lane main thoroughfare. Just as you'd suspect, it apparently flew off the hood as the vehicle turned the corner. The only thing salvageable about the hearing aid is the custom-fitted ear mold that goes inside her ear. The actual hearing aid is dead. Smashed.
Bad Sarah says, what kind of idiot leaves a hearing aid on the hood of a car??? Why was the hearing aid not brought to the restaurant or the one business that was open near where we'd parked....especially if it was looking like it might rain??? How did she assume it even belonged to that car? And how did she think they'd even SEE a tiny hearing aid on the hood of their car. I don't normally check the hood of my car when I get into it, so why would this person?? Granted, what kind of idiot doesn't check the stroller for a hearing aid before collapsing it and throwing it back in the car. Of course, you don't expect that to happen, so that was an honest mistake on our part. This lady probably really meant well, but if she only knew our current stress and frustration level with our life-situation, she might have thought differently about what to do with the hearing aid.
The day was not great yesterday and the dark sky as it threatened rain was truly representative of how we feel much of the time. Although, normally it feels like we live under a black cloud - not an entire black sky!! :)
I have to say, though, as I sat in the car crying in frustration while Ron braved the weather and searched high and low til he found that hearing aid, I prayed. Now, I don't normally hear voices...but I kept hearing "Have faith. Have faith." The more frustrated I got, the louder that voice got. When I saw Ron out at the road bending over, and picking something up I was SO filled with hope. The tears stopped and I felt calm - well, relatively calm considering. I thought, could it be??? Have faith. Yes, it could! Now, it truly would have been wonderous if the hearing aid came back unscathed. The good news is that the hearing aids are insured with a one-time loss/damage replacement for minimal cost. Considering the pair cost over $3,000.00 (which thankfully was covered by my insurance 100%), I'm not going to sweat the $125 replacement cost for one hearing aid. I'm going to duct tape them to her head though. And just when I'm thinking, well, so much for "have faith" - the hearing aid is beyond repair - the ear mold was not damaged at all. It is salvageable. That alone is worth a lot to us. I'm pretty sure we can order the hearing aid, the audiologist would have to set it, and we'd pick it up. If we had to get new ear molds, that would be another visit someplace to have the impression done and then a wait til they came in which may or may not coincide with the arrival of the hearing aid. At least we've got the ear mold ready to go for when the hearing aid comes in. In the meantime, Peyton can't hear.
Through all this, I was reminded of a line in the closing song at the mass we'd just been to. I was singing along just fine, as I really liked that song. However, when it got to the verse "the blind will see, the deaf will hear", I could no longer sing as I started to cry then and there. I'm thinking to myself...when. When will she see??? When will she hear??? Well, I guess she won't be hearing out of one ear for however long it takes to get this new hearing aid. I guess it all goes back to "Have Faith!"
It's Monday. It's the start of a new week. Hopefully things will be brighter. Hey, at the end of the day yesterday, we got a great Santa picture which I had to share on this site as my welcome page picture. It's the fourth year we've had the opportunity to take kids to see Santa and it's been the same Santa every year. He is truly "Santa". He is THE best Santa I've ever seen. I said to Ron on the way there after the hearing aid incident that I just didn't know what I'd do if it wasn't the same guy! The line was short, the kids did great, and it was such a treat to see the joy the experience brought to Moira. Between Santa and the 8+ foot tall reindeer parading through the mall, she was a real joy to watch.
I'll keep you updated after Peyton's surgery. I'm sure it will go well. It's relatively minor compared to all she's been through.

Thursday, November 8, 2007

Peyton's First Dental Appointment


Peyton had her first dentist appointment this morning. We were in and out of there so fast, I thought something had to be wrong! The dentist was very nice. They raised up the dental chair and then reclined it all the way back so I could just lay Peyton down on the part that's normally the back of the chair. He used the little mirror and checked all her teeth. She fussed a lot, but he was quick about it. When he was through he said that her teeth looked good - no build up on the teeth, no cavitites; her gums are healthy and everything looks great. He said she had a little wear on her top front teeth but he said that's not uncommon when the back teeth haven't come in yet. Peyton got her free tiny little toothbrush and we were on our way. It was a good day for Peyton.
Moira on the other hand has had some sort of stomach bug this week. She was running a bit of a fever thorugh the night on Monday, so missed daycare on Tuesday and then returned Wednesday. I'd hate for her to miss her ballet!! She seemed to be in good spirits, but I think she had a bit of an upset stomach during the day. Last night she definitely had an upset stomach and at one point her temperature was back up a little. She stayed home again today.
I normally work from home on Thursdays to handle Peyton's appointments, so I was already going to be around except for the dentist appointment. Ron went in to work around 5:30 this morning so he could come back home by 8:00 so I could leave with Peyton. He watched Moira and then when I got home, he returned to work. We kept our fingers crossed all day long that Moira could go back to daycare tomorrow, but she's just not feeling 100%. She still has an upset stomach. She can't go back feeling like this. So, in our never-ending life-drama of "how will we handle this?", we're once again having to figure out how to handle tomorrow, as both of us have deadlines tomorrow. Ron has elected to stay at work tonight til his is finished. For the third time this week, I will get up at 3:00 am so I can get to work at a ridiculous 4:30 am so I can get in extra time in case I have to leave early.
Ron and I have barely seen each other for days it seems. We've been burning the candle at both ends for so long. Hopefully one day soon we'll catch a break! I am most anxious for Thanksgiving weekend, as we'll have 4 days off with no appointments! Christmas will be better as it will be a week and a half wiht no appointments while we are away!
Somehow I'm managing to fit in 3 chiropractor visits a week for myself. The doctor is wonderful. He's very family-oriented and he insists on checking every member of the family out within 2 weeks of you starting your treatment plan - which is a set plan of x number of visits for x amount of time and then be re-checked...and you pay for it mostly up-front so you're committed. He doesn't want to treat people who ocassionally come in just when they feel bad because then the problems are never solved. It's been nearly a month now and I feel a million times better, although I have a LONG road ahead. I'm to go 3 times a week probably through the end of December and then I'll have another set of x-rays done and see where we go from there. He did check Ron out as a freebie and laid out a plan for him to follow for chiropractic care. Kids are always free - he sees Peyton twice a week and Moira once every other week. The spouse plan is at a significantly reduced rate; however, there's only so many ways you can stretch a dollar when you have all the medical bills and normal debt that we have, so he hasn't started his plan yet. The doctor was asking me about him last week and said he'd like to see him back and I said he'd love to come back but it just can't happen right now. So, the next time I was in he asked for Ron again and said he was "running a special....spouses are free". I was very touched by that and very appreciative. Unfortunately, Ron's schedule hasn't been the best for starting this, but hopefully he can start going next week as well. The chiropractor's practice is very Christian-oriented and he has a sign behind the front desk "We work for God, not money." I believe this to be true!
So, that's the story for this evening. Hopefully Moira is feeling better by the end of the weekend so she can return to "The Barn", as she calls it (her daycare literally looks like a big red barn...and even though it's within the city, they are on a bit of property and they have a pony and a donkey as well as some other animals).
Join me next time, in the continuing story of "A Day in the Life..."
Have a great weekend!

Wednesday, November 7, 2007

Feeding Problems


I received a phone call from Peyton's pediatrician a few hours after my last post earlier today. She, of course, had spoken with the speech pathologist after the swallow study had been done last Wednesday and got her impressions of how Peyton did during the study. To the doctor, it sounded more on the grim side. She did speak to the gastroenterologist Peyton saw when she had the NG tube earlier this year. They reviewed the study and have decided that it isn't absolutely urgent for us to get in to see the gastroenterologist immediately. Yes, we do need to see her. The earliest appointment I could get is not until 12/06/07, and that seemed to suit the pediatrician based on the conversation they had.
Basically, the news from the study is not good news. It showed things about Peyton that were not good signs. The pediatrician explained that statistically kids who are in Peyton's current situation with her swallow study will more than likely wind up with the permanent G tube. She told me that we ought to prepare for that reality, though it isn't necessarily something that is going to happen soon. Although, it could - we just don't know. They will be very concerned about Peyton's weight (they are always tracking it very closely anyway) and will look for any signs that she's falling off the growth curve she's currently on. Being only around the 5th percentile for weight, we don't have lots of leeway.
I asked lots of questions and in a nutshell, I think that probably with all of Peyton's issues it may be a case that Peyton's developmental and neurological deficits are playing a strong hand in what is happening to her now. There are some parts of what is going on which will not really be aided through therapy, though we are to get into some feeding therapy with her and hope for the best. It may be that she has done as remarkably well as she can in terms of her feeding and may be at a point where she's at her limit for her capabilities and needs to have assistance. The eventual placement of a tube may not necessarily mean that once it's in she will receive no food by mouth whatsoever as we'd thought last week. It may just be for supplemental nourishment.
The doctor asked me if I was up on my CPR. I took a class before Moira was born but that was a few years ago. I could use a refresher. She stressed that anyone who is to care for Peyton must be current on their CPR training. Since Peyton has issues with her swallowing, it could be more possible that she could choke on her food. I, myself, think she's not even swallowing all of her saliva, so she might even choke on that. Of course, the doctors will continue to follow her and watch her very closely for any signs of pneumonia which she is at greater risk for since she is aspirating some of her foods.
It was a lot to take in today. It was a good news/bad news sort of situation. We'll get her therapy going as soon as we can and hopefully that will help a little. We'll see the gastroenterologist next month and get a clearer picture of what we can expect. Hopefully we don't have to go the route of the G tube anytime soon, but we'll obviously do whatever is best for Peyton.
I'll keep you posted on how the dentist visit goes tomorrow! Wish me luck!!

Feeding Issues


I am still waiting on the word of what is going to happen as far as Peyton's feeding goes. I did, however, finally hear from the geneticist's office recommending we make an appointment with her gastroenterologist ASAP. Well, ASAP is 12/06/07!! I've got a message in with the doctor's nurse to try to do something about getting that moved up.
Tomorrow I'm off to Texas Children's Hospital with Peyton for her first dentist appointment. That should be fun.

Wednesday, October 31, 2007

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.

Tuesday, October 23, 2007

Glaucoma Update


We had a good report from the ophthalmologist (the glaucoma specialist) yesterday. Peyton went in to the hospital Monday for surgery. She was to have the tubes of the shunts in her eyes shortened as well as remove a chalazion from her left eye lid. The doctor performed the eye exam under general anesthetic and found that the shunt tubes did not need to be shortened at this time. He said that as her eye grows, the shunts will shift. So, whereas he felt it necessary to shorten them when she had her eye exam back in July, it was now not necessary. However, he did say that they are shifting in the direction of needing shortened, but they are not yet in a position where they will cause damage to her cornea. He wants to keep a close eye on this but doesn't want to do surgery until it's absolutely necessary. I suppose that is to minimize the chance of having to do it again later as her eye continues to grow. As for the chalazion, it must have gotten better, as he did not see that it was necessary to do anything about that either. So, if you're thinking this was all a waste of time and an unnecessary general anesthetic (Peyton's 15th), it really wasn't. She was due for her routine eye exam which must be done under general anesthetic. This is to check the pressures in her eyes. The doctor said her pressures are great. We'll repeat the exam in 3-4 months to make sure they are still good and to be sure the shunt is in a good position. The worst thing about yesterday's procedure was that Peyton's veins are terrible now and they had much difficulty finding a vein for her IV. This has been happening with the past several procedures. I had never seen this before, but they had to place the IV in her neck! Poor baby.
I took Peyton to the pediatrician last Thursday to have her cleared for sedation for the eye exam. Peyton is now 17 months and is 21 lbs 12 oz and is 31 inches long!! She got caught up on her vaccinations from 15 months and got her flu shot. The doctor also told me that she ought to see a dentist for a check up since she has about 16 teeth now. Since she is extremely sensitive to touch, it is impossible for me to get in even with one of those little baby toothbrushes you slip on your finger. The doctor told me not to worry about not being able to get in myself, but to see a dentist and make sure she's doing ok there. I wound up not using one of her recommended dentists as they weren't in my insurance plan, but I did call Texas Children's Hospital myself and found that they offer routine dental services to special needs children and children with complex diagnoses. So, Peyton has her first dental visit on Nov. 8th. It would not surprise me in the least if she had to have a routine cleaning done under sedation. I suppose I'll find out on the 8th.
Aside from that, Moira's cold is lingering on still. I'm starting to get my second cold in as many weeks. We're all enjoying our visit with my parents and will be sad to see them leave tomorrow. At least it's only about 2 months til we see them again. Hard to believe Christmas is in 2 months and 2 days!! Where did the year go???

Tuesday, October 16, 2007

Another Upcoming Surgery


Peyton had another sudden doctor visit yesterday. Instead of going to her physical therapy appointment, she wound up seeing her Ophthalmologist instead. Her left eye has been irritated and her eye lid was pretty red and swollen. Not wanting to take any chances with her eyes, Ron took her to the doctor. It turns out she has another "chalazion" in her eye lid. Basically it is a gland or duct that is clogged with oils. It becomes irritated and unable to drain, so it forms a lump in the eye lid. It's not a sty, although it's kind of similar. Since Peyton is scheduled for surgery on Monday, she will have this chalazion removed at that time. The surgery is to shorten the tubes in the shunts in her eyes.
Aside from that, she is doing quite well with her therapies. She's getting much stronger each day. We're still a long way from reaching many milestones, but I have a feeling like maybe Peyton being able to sit unassisted may be the next milestone she reaches. I think it's still a long way off, but she is getting stronger. Her head is still wobbly and she doesn't have great upper body strength, but hopefully in the next several weeks she might be able to sit on her own. We'll see. Only time will tell!!
We are looking forward to a visit with my Mom and Dad. They will be arriving tomorrow and will stay for a week. I'm sure they will see a huge difference in Peyton. Dad especially, since he hasn't seen her since Peyton's birthday in May.
We will see them again in just a couple months as we will be spending Christmas in Canada this year. We're driving. You can't take the oxygen tanks we have for Peyton on airplanes, so that means we have to drive. Fortunately, the kids are GREAT travelers. In July, we drove to Albuquerque - about 15 hours or so from here. We drove straight through and they didn't start to fuss until we were about 5 miles from our hotel! Hopefully that luck continues with this trip. It'll be too cold to pull in at a rest stop and let Moira run around on this trip!
I'll update regarding Peyton's surgery next week.

Monday, October 1, 2007

A Variety of Updates


Peyton had a sudden visit to her Pediatrician last week. She was coughing and sounded quite congested, not unlike the time she was hospitalized in early May. So, we were quite concerned. However, it was the croup and it appeared as if she was over the worst by that point, despite the fact that her cough was at its worst. The cough is still persisting, although her chest is clear. I'm not convinced she was over the worst. Moira has a bit of the same cough now, but she hasn't been as bad as Peyton so far.
Peyton had her 1 month follow up with her ENT last Thursday. All went well. No ear infections or fluid build up in her ears since her surgery!! He will see her again in 6 months.
Peyton had her 6 month follow up with her Geneticist today. It was more of an observational visit from the doctor's standpoint. He took in all the information about what's been going on with her since last April. Did I mention it was a very long appointment?? He is still convinced Peyton has some sort of chromosomal disorder, although all the publicly available testing has been done on her and has turned up nothing. He offered the opportunity for her to take part in a research study - one simple blood test. The last panel tested for 500-600 disorders. This test apparently is far more extensive. It is not publicly available and at his discretion, was able to offer this research opportunity to us free of charge. As such, it is not a part of her medical record; however, if it does happen to turn up some answers for us, they will work towards making her results a part of her record so they can continue following her. We should know in a month or so what the results are, if any. If nothing turns up, her doctor will continue to follow her progress as he has been. He said he hopesto be able to come up with a diagnosis one day, but obviously cannot say with 100% certainty that he will. He will see her again in 6-9 months, unless he needs to see her sooner for this study.
I, myself, after almost 2 years of neglect, and after some of the greatest agony of my life have finally gotten around to finding a new Chiropractor. I have not been in nearly 2 years. I simply have not have the time to take care of me since I have put all my energy into Peyton since she was born. I live in constant pain, periodic agony, and with a decreased enjoyment of life due to this pain. Since I can no longer take the mental side of this problem, I finally gave in and went to a Chiropractor recommended to me by a Naturopath that I also started seeing recently in an effort to take care of "me". X-rays showed a 75% loss of curve in my spine. No wonder I'm in pain! I've had 2 adjustments. Feels great for a while afterwards, but the following day....that's another story. I don't think I can ever find a replacement for the Chiropractor I left behind back home, but this one is pretty good. His approach is the closest I've found to him, so we'll see what happens. I'm sure Ron is anxious to see results quickly as I am sure he has grown weary of my pain and how it has drained me emotionally for the past many months.
This Thursday will be a full day for Peyton and I. She has her standard hearing and vision teacher appointments. She also has an appointment with her Neurologist who she hasn't seen in many months, having been rescheduled once or twice due to surgery. I am anxious to hear what he has to say and what sort of research he has done since we last visited with him.
PT and OT continue to go well, although Peyton got a break from them last week due to an assortment of other appointments which interfered with her therapy schedule. The PT commented today that Peyton's neck seems to be getting stronger just in the past couple weeks of going to the new place. Way to go Peyton!! We are so proud of you!
While I'm bragging on Peyton, I'll also take a moment to brag on Moira who thinks she is becoming quite the accomplished ballerina. She has been taking ballet lessons for the past month. A dance teacher comes every Wednesday and offers classes to the various age levels, starting with the 3's. They will have a recital in December and one in May. Moira loves her ballet classes.
I will keep you posted after our visits this week.

Tuesday, September 25, 2007

Surgery Follow Ups & New Therapists


Peyton had her 1 month follow up with her Neurosurgeon this afternoon. I am very happy to report she is doing well. Unless something else comes up, she doesn't have to see him for another 6 months. At that time, he will decide if another MRI study is necessary.
She will see her ENT for her 1 month follow up for her ear tubes/adenoid surgery on Thursday.
Peyton's new physical and occupational therapy is going really well, although she's missing some this week due to all her other doctor appointments. Still, she's getting more than she was. We're wearing her out with all this therapy now!
Will keep you updated on her upcoming appointments.

Friday, September 14, 2007

Updates: Post-Surgery & Therapies


It has been a while since I updated my journal, so I thought I should take a minute to do just that. Right now, life is moving along pretty well, with a few glitches thrown in here and there just for fun.
Mom/Granny is still down visiting and is enjoying her time with the girls. Ron and I had a great time on our vacation in Las Vegas, but I was anxious to get back to the kids. Peyton and Moira did very well while we were gone. Mom got a taste of what it is like to be "us" for a while. Hopefully she'll come back and visit us again after she leaves on Sunday!
Peyton's feeding has improved tremendously in the past few weeks. Ron and I were never able to feed her jarred baby foods. However, now I am able to. She is doing well in her high chair for feedings. I do have to hold her face to get her to open her mouth to get the spoon in. When the food goes in, there's often a grimace from Peyton (not always though), and she will swallow her food. So far, she really seems to enjoy carrots and bananas. She likes the peaches and the jarred rice cereal with applesauce mixed in. This is a huge breakthrough for us, because at almost 16 months, she's still mainly on formula. If we can move her over to more jarred foods, I'll feel much better about the nutrition she is getting.
In another turn of events, we have also removed Peyton from her physical and occupational therapy services provided by the Early Childhood Intervention (ECI) program. She has had evaluations for both with a private therapy provider and will start her actual therapy next week. She goes from 4x/month with ECI for PT to 2x/week with the new place. She goes from 2x/month with ECI to 1 to 2x/week with the new place. The new therapists put her at between 3-6 months developmentally in terms of her motor skills. We need pretty intensive therapy to get her back on track. We've noticed particularly lately that her improvement was not as good as we'd like to see because she just wasn't getting the amount of therapy she was supposed to be getting.
If anyone knows of a way to clone me, please let me know. I have NO clue how this is all supposed to play out, as her PT was done mostly at the daycare provider's home without us having to be there. Now, I am happy to be directly involved now, but it's definitely a strain our our schedules. Necessary, but I have NO clue how to handle this.
Peyton seems to have recovered well from all her recent surgeries. She will follow up with the Neurosurgeon and the ENT doctors next week. The one negative from the post-surgical improvements we noticed is that she now needs to be on her oxygen at night once again. Not sure why it improved and now is back to where it was before.
Aside from all this, we're doing well. Overwhelmed, stressed, and clueless at how to handle the overloaded schedule Peyton has, but we are surprisingly well! (At least I think we are!) I'll keep you posted on how her follow up appointments go and how her new therapists are working out.

Saturday, August 25, 2007

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.

Wednesday, August 22, 2007

Neurosurgery Follow Up


Peyton had a good report from the Neurosurgeon yesterday. She is doing very well and the doctor is quite pleased. He removed the last remaining steri strip. The incision area is quite red but he said that is from the sutures which are under the skin and should get better shortly. If not, we'll go back to him. He ordered an x-ray to make sure that her neck is remaining stable when extended or flexed. It is. So, we ended on a good note and will return to see him in a month.
Next up...Friday's ear tube/adenoid surgery. Still a go. I am most anxious to have all of this behind us!

Monday, August 20, 2007

Post Surgery and Upcoming Surgery


Just a quick update to say that Peyton is doing really well since her surgery on August 9th. She has been just as mobile as ever since she came home on the 11th. She scared me at times with how mobile she was! I would have thought her neck would have been very sore and she would choose not to move it so much. Not the case! Actually, her doctor said that it's better for her to be mobile because it will heal faster.
In addition to the oxygen levels remaining at a really good level while she's sleeping, we've noticed a change in Peyton's feet. Since she was born, her feet have always been freezing. Now they're a normal temperature most of the time!
If all goes according to plan, Peyton will have her ear tube/adenoid surgery this Friday, the 24th. Her congestion from being intubated on the 9th has finally eased up and I think she's good to go for Friday. One more surgery coming up in September. This one is to shorten the tube of one of the shunts in her eyes. We found out that would have to be done back on 7/30/07, but the doctor didn't want to do it at that time since she had so much bacteria in her eyes at the time. It's apparently a very quick and simple procedure. It will be so good to get these surgeries out of the way.
Mom will be arriving on the 29th. Moira's looking forward to seeing Granny. I think she thinks Granny just lives at the airport and we just pick her up and drop her off as needed. On the 30th, Ron and I are off to Las Vegas until the 4th for some much needed R&R. It'll be the first time I've been away from Peyton since I was hospitalized in May 2006. I'm not feeling 100% great about leaving the kids, but I know they will be in good hands!
Will keep you posted on how Peyton makes out at her follow up with her Neurosurgeon tomorrow as well as her surgery on Friday.

Saturday, August 11, 2007

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

Friday, August 10, 2007

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

Thursday, August 9, 2007

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

Tuesday, August 7, 2007

Surgery


What a day. We went to see Peyton's Neurosurgeon for a follow up to the MRI she had last week. Back in November, her MRI of her brain showed something at the base of her skull/top of spinal column that they wanted to keep an eye on. Unfortunately the MRI cut off right at about this point. The problem was a new one so they weren’t expecting to need to see further down her spine. Last week’s MRI went further so they could get a look. The tightening that they noticed at the top of the spine has gotten worse and requires surgery. It’s one of those things that could be done now or could wait a bit, but then if you waited…what if something happened?? The big concern (one of the concerns) is that the sleep apnea she has is very likely caused by this problem and could get worse. The area of the brain above this problem area controls respiration. We didn’t delve into the “what ifs”, but decided that urgent surgery is the order of the day. She is scheduled for Thursday. We have to be at Texas Childrens for 6am on Thursday. He said the procedure is fairly simple.  Ok, I’m not the neurosurgeon, so perhaps that it is not actual “brain surgery” maybe makes it “simple”! It’s about a 30 minute procedure – decompression is what he called it. She’ll be in the hospital 2-3 days. They have to keep a close eye on her because of risk of infection, her apnea and generally because of her other issues.
So now we wait anxiously for Thursday to be over and done with. I will keep everyone posted as soon as I can once she is out of surgery. We appreciate your prayers!

Wednesday, August 1, 2007

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.

Monday, July 30, 2007

EUA Update


Peyton and I are home from the hospital. She had her eye exam under general anesthetic. Prior to going in, the doctor was in the pre-op room. I asked her about something I noticed about Peyton's right eye - her lower lid seemed to be a bit "puffy" on one end. This wasn't something new, but it wasn't getting better. Sure enough, she has "chalazions" (similar to a sty, I guess, but not a sty) See: http://www.webmd.com/eye-health/chalazion-lump-in-eyelid for more information. She had to have at least 7 surgically removed from both lower eye lids. Poor Peyton. She is resting at home now, but looks like she's been in a fight with George Foreman...and lost.
Her eye pressures are fine. More on the low side, but still in the normal range. The doctor said that the tube of the shunt in her right eye is now too long since her eye has decreased in size. She'll have to go back in September to have the tube shortened. He would have done it today, but she has too much bacteria in her eye from her other eye problem.
All went well. One procedure down. She will have her MRI on Wednesday if all goes according to plan. I'll keep you posted.

Thursday, July 26, 2007

Ophthalmology & A Crazy Schedule


We are between Peyton's doctor appointments at the moment. We saw her Ophthalmologist this morning. Peyton's eye problems - the redness and irritation - appear to be something more along the lines of her developing an allergy to the natural secretions of the eyes. She wears a special type of contact lenses 24/7. In general, contacts will develop protein deposits on the lenses and need to be cleaned. I don't know if it's the material hers are made of or if all contacts eventually do this, but in hers, the protein and other secretions will embed themselves in the contact lens itself, making it impossible to clean. Apparently over time, it is possible to develop an allergy. So, she needs to be fitted for the hard version of the special contact lenses she wears. Her left lens was just replaced (soft, not hard) because she lost it. I guess she rubbed her eye so much it popped out (the lens, not her eye!), so that one is fine for now but will over time get in a bad state again. The right one has been rendered useless as it has so much build up that you literally can't even see through it. They showed me, did whatever special cleaning they do there in the office, and showed me again. No change.
In other eye-related news, Peyton's routine eye exam under general anesthetic (EUA) has been post-poned a few times and is on the schedule for this coming Monday. However, her MRI has also been post-poned for the same reasons (her general health was not good enough for a couple months because of the respiratory issues to allow her to go under general anesthetic). That is on the schedule for this coming Wednesday.
Not wanting to overload our schedules, or have so many procedures of that type so close together, we wanted to move the EUA. Her other ophthalmologist (glaucoma specialist) who is doing it said not to move it yet - to check with the regular one. He was ok with post-poning it a month but wanted to be sure she was too. Well, she's not. Her hard lenses require a very accurate measurement of the eye and is best done during an EUA because it can be done so quickly while she's out. Because Peyton's one lens needs to be tossed since it's in such bad shape, she's down to one contact which, until her new hard lenses come in, need to be switched back and forth from eye to eye every day. The doctor today said that we've worked so hard to get where we are, the last thing we want is for her to develop a lazy eye if she only has one lens in. So, long story short, she needs to show up for the EUA to take the measurement for the lenses and it needs to be done ASAP. i.e. the EUA must be done on Monday. And since the MRI is extremely important, we can't move it either. What a schedule next week.
It's always so much fun with two working parents trying to rearrange everything so we can handle all of these last minute crises!!
Off to the pediatrician shortly. We need to have Peyton checked out to make sure that at this moment she is in good physical shape to have the general anesthetic next week. I wonder what she will think of our schedule next week!

Thursday, July 19, 2007

ENT Update


I am back from the ENT doctor with Peyton now. This was a follow up to her visit 7 or 8 weeks ago. That visit was a consultation regarding her sleep apnea. However, in the process, he discovered she had an ear infection. She developed another ear infection a few weeks ago. That makes at least 4 ear infections since January. The doctor has decided she is a good candidate for having tubes put in her ears. He also felt that her adenoids should also be removed. So we are scheduled for surgery on August 24th.
Since the bulk of her hearing loss and sleep apnea are neurological, the surgery probably won't help too much with those areas, but it's possible that her hearing might have some improvement - at least perhaps what little bit she can hear unaided might be clearer. The adenoid removal might reduce some obstruction as far as the apnea goes, but probably won't do too much to help there. Hopefully after this surgery Peyton will be in better shape for having such things as her MRI and eye exams which require sedation. These keep getting rescheduled because she's gotten sick and can't be sedated. Hopefully if we can reduce the number of ear infections her immune system might stand a chance at clearing up the other issues.
More appointments this afternoon - will keep you posted.

Saturday, July 14, 2007

An Overdue Update


Wow. I can't believe how long it's been since I updated this journal. The time has flown by and it hasn't been uneventful!
In mid-June Peyton had a visit with her ENT doctor to discuss her sleep apnea. In the course of the appointment, he discovered she had an ear infection. It was treated. It returned. She just finished her second round of antibiotics and will return to see him next week. I'm afraid we're probably getting close to having to have tubes put in her ears. The ENT didn't want to allow her to have too many ear infections that could further compromise her hearing. She's had 4 or 5 already since December.
A visit to the ophthalmologist a couple weeks back revealed some flakiness around/in her eyes. Possibly excema. On the same day, she had an appointment with her pediatrician, so we were able to discuss the matter with both doctors. In addition to her eyes, the mild flakiness sometimes appears elsewhere on her face, but she will also get a rash periodically. The doctor thought it might be a heat rash, excema or something in between. Peyton was prescribed eye drops, an ointment for her outer eye, and a steroid cream for the rash.
In news this week, Peyton appears to have developed an allergic reaction built up over time to the eye drop she was prescribed. She has taken that particular drug several times in her life. It's the drug of choice following all her surgeries and for most problems she's had with her eyes. The inside of her eyelids were absolutely blood-shot yesterday and had several raised bumps on them. Turns out she has several styes and some advanced styes. We cut out that eye drop and ointment and have her on a new eye drop. Hopefully that helps.
Peyton had her annual review with her Early Childhood Intervention (ECI) team on Thursday. Her coordinator, developmental services, nutrition, occupational therapist, speech therapist, and hearing teachers were all present. Everything will remain pretty much the same except we dropped nutrition from her service grid. Sad to say good-bye to her nutritionist who has been wonderful, but if you could see Peyton now, you'd definitely see there's not much of a weight issue now compared to just a few months ago! Way to go Peyton!!
Peyton's physical therapist was not present, however we had a visit with her earlier that day. We're looking into various pieces of equipment that we can get for Peyton to allow her to be better positioned. We're looking at a few different seating options which would get Peyton up off the floor and into a sitting position to do things. We got her in her high chair for the first time. I've been very hesitant about putting her in it because of support issues she has. Now that I see how to do it properly, we'll be doing it all the time now!!
Peyton saw her orthopedist on Friday. It was a follow up after having the problems with her hips at birth. She had x-rays done and everything appears to be developing normally. She has very low muscle tone, so we were concerned that perhaps she might not be. However, things are looking good. We will see him in a year or one month after she starts walking - whichever comes first.
It's been a very busy past few weeks. Peyton is doing well. She's really taken to her new babysitter. She's gained more weight - she's almost 21 lbs now at 14 months! Moira is also doing fantastic in her new daycare. She keeps us on our toes!! Ron was away for work in Dayton, OH on Monday through Wednesday of this week, so I got to handle both kids myself during that time. I need a vacation!! They were both good girls for me but I'm happy to have my helper back!!
We're crazy people and are heading off shortly for a little weekend jaunt to Albuquerque. I think it's about 14 hours...and we're driving. Leaving shortly and will be back Tuesday night. We just wanted to see something different. Hopefully all goes well. Will keep you posted on Peyton's progress next week.

Monday, June 25, 2007

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.

Friday, June 22, 2007

MRI Update

Just a quick update. Peyton's MRI that was supposed to be a few weeks ago had been rescheduled because they felt she wasn't quite over her illness from when she'd been hospitalized in early May. It was rescheduled to this morning. However, early this week, Peyton started coughing and sounding congested. I took her to her pediatrician. She felt like it probably wouldn't be a good idea to sedate her for the MRI so she called over to the hospital to check with them. The agreed. So, the MRI is off again and is reschedule to August 1st, or sooner if there is a cancellation. It was important it be done a month ago, so I'm not happy about it being in August, but what can you do. It wouldn't be safe to sedate her, so I understand them not doing it. In fact, I'm a little relieved as we've had a lot going on lately and cancelling today gives me a break today and also cancels the follow up appointment next week, which is also turning out to be a very busy week.

Wednesday, June 20, 2007

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.

Wednesday, June 13, 2007

New Childcare: An Update


While still feeling the everyday stress, Ron and I are happy to report that we feel SO much happier the past couple of days. I feel like I almost have a spring in my step. I know I'm smiling more. The changes that this week brought about were obviously meant to be.
Moira has had 2 full days in her new daycare. She has had no accidents. Kind of makes us wonder how at the old daycare she was having 2-4 accidents a day. Moira loves her swimming lessons. She goes for 45 minutes every day. Plus on Tuesdays and Thursdays, her class gets to swim for 45 minutes in addition to the lessons. She is a little chatterbox all the way home each day. She has made the transition very well. I was so concerned. From the minute we walked in the door yesterday, she was at home. The director said you'd never know that she had just started. Again, makes you wonder about the old place.
Peyton is settling in well with the home daycare we have her in. We're very happy so far. Peyton is taking more by bottle and is taking more rice cereal than the daycare ever was able to give her. She, too, seems happy in her new surroundings. Tomorrow she'll have more new surroundings as the lady who watches her had already planned to have tomorrow and Friday off. She does, however, have a back up provider, so Peyton is off to that lady's house. The back up just happens to live directly behind our house and over one! That's pretty convenient! She'll be the only one going there tomorrow, so she'll get plenty of attention. I'm not sure how many children this lady watches regularly.
We are just so happy to finally have the daycare crisis behind us and we can move on. We will tour the special needs school next week and see if they have a waiting list for their next upcoming school year. We'll see how that works out.