Tuesday, May 29, 2007

MRI: A No Go

Well, I took Peyton to Texas Children's Hospital this afternoon for her MRI. Since it's sedated, they had to thoroughly evaluate her to make sure she was in good enough shape to be sedated. Added to my growing list of frustrations is the fact that she could not have the MRI done today. They felt that she was still too congested and sick from her virus/pneumonia almost a month ago. True, she is still a bit congested, but much improved. She has actually had surgery under similar health conditions. Different doctor, different result I guess. There was also a scheduling mix up. We were told it would be done at the hospital, but when I got the reminder call on Friday, it was to be done at their clinical care center which is like their big doctor's office building across the street from the hospital. That's where almost all of her doctors are. I thought it was odd, but went with it. Turns out it should have been at the hospital a) because of her age, and b) because of her newly diagnosed apnea. Also, unbeknownst to us, we should have brought her oxygen with us because they'd want her hooked up to it on the ride home and for the remainder of the day after being sedated. So it was a big mess all the way around. They rescheduled it to be at the hospital itself on June 22. I tell you, nothing is ever simple in our family!!
We had a nice Memorial Day weekend. We went to Ron's mom's near Beaumont on Sunday for our nephew's big 5th birthday party. It was a "Cars" theme. Very cute. Braeden got a pretty good sized inflatable pool, so that was set up and the kids (not Peyton!) went swimming (or splashing as the case may be). Then on Monday we decided to take a drive in the other direction to go for a picnic at a park in Austin. Well, the picnic was rained out, so we drove to Ron's Aunt Jaynie's house. She lives in Kyle, just south of Austin. His cousin Jill came over. Ron and I (mostly Ron) got a power nap before hitting the road to come back. The kids are good travelers, but Peyton had it by the time we were 30 minutes from home. Poor baby. She just cried and cried the whole rest of the trip. Moira tried to "comfort" her by singing. Of course, I think only dogs could hear her. Perhaps that was the cause of Peyton's screaming! I swear, I heard Moira say, "Oh, Peyton. Don't be discouraged!" Well, it was something pretty close to that, although who'd have thought she'd know the word "discouraged" at the age of 3. Perhaps she's heard it around our house a few times?? Poor kid!!
Peyton will see her Ear, Nose & Throat doctor on Thursday afternoon. The doctors are wondering if there is possibly a structural abnormality of her airway, or enlarged tonsils or adenoids which are contributing to some of her sleep apnea. You know, if they could just fix it all surgically, I'd say let's get it done! Waving a wand to fix it would be better, but that's not likely. Will keep everyone posted on how that appointment goes.
Hope everyone had nice long weekends either last weekend or the prior weekend, whether in the U.S. or Canada!
3 more days til hurricane season!! Yikes!

Friday, May 25, 2007

Hope for Child Care!

All is not hopeless this morning.....we have a lead on a placement for Peyton!!! Of course, the necessary phone calls and visit haven't been made yet, but it's for a woman who watches kids (including kids with a variety of special needs) in her home about a mile or two from us. I already have confirmed with a daycare near the special school we are trying to get Peyton in that they could take Moira now. I need to see that place but have heard it is very good. Peyton's placement right now is an interim thing until we either get her into the special school in August or whenever they might have an opening if she gets wait-listed. Keep the prayers coming....we need for this to work out!! Thanks for your support and for allowing me to vent. I've been in stressful situations before, but I think this takes the cake!

Thursday, May 24, 2007

Gastro & A Daycare Update

The appointment with the gastroenterologist went very well. She is in the 10th percentile for her weight and seems to be tracking along that line, so the doctor was happy to discharge her from her care for now, assuring us she'd be available if something came up in the future! Way to go, Peyton!!
Daycare...can I even bring myself to go there right now?? I'll just say it seems all they want to do is make "everyone" happy so they promised the infant spot to someone else in July and intend to move Peyton up to the 1 year old room. Happy?? That's hilarious. We deal with the medical issues all the time. That's just "normal" for us. But this is really the first "social" injustice that we've encountered along the way. As a parent, it infuriates and disgusts me that people can just do stuff like this and think it's not a big deal. I'm sure it won't be the last injustice we encounter. So, here we are....Peyton has a spot til July (if we choose to keep her there that long). I have NO clue what we're supposed to do. None.

Ophthalmology and the Daycare Crisis

We are back from the opthalmologist. Peyton did very well. She still hates having her eyes dilated. However, in the end it seems that her eyes have finally stabilized!! We don't need to go back to that doctor for 2 months. She will, however, see the glaucoma specialist for an eye exam under general anesthetic sometime in the next month or so just to be sure everything is still looking good.
Ron will be off to the daycare for the big meeting which takes place in an hour. I will not be there. I wish I could be a fly on the wall though. I have to take Peyton to her gastroenterologist and have to be on the road not long after their meeting begins. I hope and pray that all goes well. I was able to contact a local agency that helps families with children with any disability and they were able to arm us with information on the Americans with Disabilities Act (ADA) with regard to child care centers and special needs children as well as similar information from the US Department of Justice. After reading through all of that information, I'd say they'd better be very careful how they handle this. I can't imagine we'd ever file a law suit, but at the very least, probably have the child care licensing agency send someone out to see whether or not her needs were being met. I wish I could have thought of this off the top of my head at the time, but the daycare owner told me that they can't put an infant in the 1 year old room to save Peyton's spot in the infant room and I said I didn't expect her to because that would be ridiculous. What I should have said was "So why are you putting Peyton there??" With the developmental age of a 4-6 month old, it just doesn't make sense.
Anyway, I will keep you informed on how the meeting goes. Say a quick prayer that it either goes in our favor or if it doesn't that we come upon a really good back up plan fast! Thanks to all who have offered their suggestions. They are much appreciated!

Tuesday, May 22, 2007

Daycare Dilemma

What a whirlwind the past week has been. My mom and dad came down for a short visit for Peyton's birthday party. It was great seeing them. I just wish it had been for longer!
Peyton's birthday party was very nice. We had ourselves plus 11 others who came. It was a Baby Einstein theme. Thank you to those who were able to attend!
Last Thursday, Peyton went to her pediatrician for her 1 year check up. The doctor said she seemed a million times better than she was while she was sick. She spent a lot of time discussing a lot of issues with me. She is the greatest doctor. You never ever feel rushed. She always takes as much time as you need with her. She also makes you feel like you and your family mean a great deal to her.
One of the items which we discussed was the fact that we ought to be looking into a child care situation for Peyton which handles children with disabilities. She was thinking by the time Peyton was 18-24 months would be appropriate. She recommended a place. There aren't too many like it, so it's not necessarily as convenient as where the girls currently are, but if this is the place Peyton needs to be, then we'd just make it work.
Part of what prompted this recommendation is that our daycare, which both girls attend, has stated that Peyton is scheduled to move up to the 1 year old room on July 15. We had always said to them that we didn't know if that would give her enough time to be ready to be moved up. About a month ago, it was mentioned to me and I asked what we would do if she wasn't ready. The response was basically to put the answer off by saying we'd cross that bridge when we got to it. Last Thursday, she mentioned the same to Ron when he dropped Moira off. He raised the same concerns and was basically told that they were moving her July 15 as they have already given her spot in the infant room to another family who already has another child in one of the older classes. Long story short, what was discussed really made us angry and sad, really, which is why I brought the situation up to the pediatrician.
Last Friday, since my parents were going to watch the kids, I called the daycare to let them know they would not be there. That was all I wanted to discuss. I was still upset about the previous day. However, I was cornered into a discussion about the same thing. It went on for at least 30 minutes. The owner said she guessed we needed to have a conference in person. I cried for about 2 hours after this conversation because it was so hurtful, upsetting, and stressful for me. The bottom line is they have a business to run and, although they claim to be acting in all the families best interests, it appears to me that they are choosing to bump us in favor of a family who causes much less inconvenience to them. Discrimination, anyone?? This prompted a phone call on my part to the State and the local Child Care Licensing Agency to find out if what they are trying to do is legal or even appropriate.
The regulations on child care for a child with special needs are basically that they need to meet minimum standards of care and that the child must be fully integrated in the class. All activities must include all children, whether they adapt the activities so she can participate or adapt the other children to something that Peyton is able to do. The "gray area" is that while they are required to meet minimum standards, they may choose to use the developmental or emotional age of a child upon a doctors recommendation in determining the child's placement in the facility. They recommended that I get a letter (which I was already in the process of doing), have the conference, and if we were not satisfied with the outcome, we could call back and file a complaint. At this point, they would send out an investigator to determine whether or not the minimum standards of care are being met for Peyton. After this call, I began writing a list outlining my discussions with the daycare regarding every one of our concerns. The list is 7 pages typed.

Ron called on Friday to set up a conference but apparently whoever he spoke to couldn't set it up. He did not have a chance to do it yesterday. He is concerned about me and my stress level, so he wants to handle the conference himself, discuss it with me, and go from there. That said, yesterday when I picked the girls up after work I was cornered again by the owner. I'm thinking, if you want a conference, have your conference and until then, leave me alone! I was in no mood for the conversation, so whatever I wound up saying to her, she had it coming! She has been a tad condescending and has said we obviously don't know what is in the 1 year old room and we don't know what's available. And she doesn't get how the doctor can possibly determine the 1 year old is inappropriate considering she's never seen it. And I can say obviously after all this time, the daycare hasn't got a clue what they're dealing with as far as Peyton goes. She showed me the 1 year old room. She had stated when they go outside, we could leave a stroller there for Peyton to sit in and be moved around in while the kids are playing. That's fine - if she could actually sit in a stroller! She actually went online to find infant strollers. She printed the list out to show me the pictures. They were all forms of umbrella strollers. Some were quite nice and I'd like to have some of them, but the bottom line is it isn't appropriate for her. Bottom line, we cannot put Peyton in a situation which is inappropriate. The daycare seems to be refusing to keep her in the infant room because they've promised it to someone on the waiting list. I thought a waiting list was just that - a place to wait til a spot opens. Not a place where you tell people they definitely have a spot come July 15.
Anyway, the discussion went badly last night. We were very upset. The bottom line is that we are now in an urgent search for child care. And who knows what we can get. The special school for Peyton may or may not have a spot for her come the start of their school year in August. They also cost for one person more than what we currently pay for the two girls combined. The daycare threw in comments about Moira which were completely inappropriate. I don't want to leave Moira there when Peyton is taken out. If they are going to treat us this way over Peyton's situation, they don't deserve any of our business. I absolutely hate creating more upheaval in Moira's life. But I can't leave her there.
Question - Does anyone in the Houston area know anything about nanny agencies or anything that might help us out??
So, this past weekend, Peyton also had her sleep study. It was supposed to be on Sept. 6, but the pediatrician was quite anxious to move it forward based on her oxygen levels while she was sleeping when she was in the hospital a few weeks ago. She spoke to the director of the sleep center and they got us in this past Saturday. Mom came with me and Peyton. I think it was more like a sleep deprivation study. It was torture for Peyton. Poor baby. She did bravely, but it was not a fun experience.

The pediatrician called me last night. She got the results of the study. Peyton is desaturating 30+ times an hour while she is sleeping. Her breathing either becomes very shallow or she stops breathing. It's central and obstructive sleep apnea. The central part means her brain is forgetting to breath. This accounts for most of the problem. The obstructive part means something is blocking her airway - enlarged tonsils, adenoids, or perhaps a structural defect with her airway. They gave her oxygen during the sleep study and this help greatly. So, last night they got us set up with oxygen for use at night while she is sleeping. The doctor will have the final report on the study by the end of the week and will determine if she needs oxygen during the day during naps.
So now we have a new problem. Oxygen. I said to the doctor I could hardly wait to tell the day care. She said lets not go there just yet. For sure wait til the final report is in. However, if she has to have oxygen during daytime naps, we now have no child care for Peyton. I can guarantee they will not be accommodating as far as this goes. So again, does anyone local know of anything that would help us find appropriate care for her????
We need to make an appointment with her Ear, Nose & Throat doctor to see about the obstructive part of the problem. The pediatrician spoke with her neurosurgeon (the 2nd one we saw for the 2nd opinion a month or so ago). They are concerned there could be a neurological component to this. She has a Dandy-Walker cyst - it may or may not have something to do with the problem. They're going to look into it. She also wants to determine if something should be done to surgically aid the problem.
At this moment, I have no idea how we are getting through all of this. I can't believe the events that have unfolded - especially with the day care. I don't even have a clue what we're supposed to do. The medical stuff is easy. We just do what they tell us to do to help Peyton. I don't care if we have all the appointments we have to keep Peyton's life progressing in the best possible way. I DO care that my child is the subject of what appears to be discrimination and that she appears to be an inconvenience to the people who have provided her care for nearly a year. I've toughened up a little more the past week or so. I am not afraid of them. I am NOT afraid. I WILL report them to the licensing agency when this is all said and done. I'll throw in that they never keep her hearing aids in as well. That'll be nice. All I know is that Ron and I are Peyton's best advocates. What happens to her is OUR decision, not the day care's. If we don't stand up for her, no one else will in this situation. We'll do what is best for her. And we have a pretty good team of people who stand behind us on our side of the issue, so I don't feel so alone in all of this.
Sorry for the length of this post. Believe me when I say it IS the short version!! If you can say some prayers about all of this stuff that everything works out ok, that would be much appreciated!! Thanks.

Tuesday, May 15, 2007

Happy Birthday!

I cannot believe a year has passed already. It seems like only yesterday she was born, but seems so long ago at the same time. Hopefully the year ahead will be much less eventful for Peyton!

Thursday, May 10, 2007


Peyton is continuing to improve. I took her to the pediatrician yesterday morning for a check up. The doctor said that she looked and sounded much better. We were able to stop the breathing treatments, which is good. Peyton can come off the antibiotics for the pneumonia tomorrow. We still have to give her the antibiotics for the thrush. She still has the feeding tube in, as she still is not taking her bottle too well. We are trying, and she is as well. She'll get it eventually. It's just very difficult because she makes great strides to achieve certain things and then when she has a set-back, she has to re-learn everything all over again. Hopefully the tube will come out in the next couple of weeks. The good news is that her weight is the same as it was the day she was hospitalized, so we don't have to worry about her having lost a great deal while she was ill. Hopefully Peyton will be fully recovered soon. She needs to get well for her big first birthday party!!

Saturday, May 5, 2007


I am pleased to report that Peyton and I are home from the hospital! The doctor discovered that she did have a little bit of pneumonia in her right upper lung. She started antibiotics last night. She also developed thrush in her mouth, so has antibiotics for that as well. Peyton's IV stopped working last night, so they left the IV in place, but had to stop fluids on last night's on-call doctor's orders. The weekend on-call doctor said it was ok to keep the IV out. After we saw him, he said that with no IV, there wasn't a whole lot they would be doing for Peyton in the hospital that we couldn't be doing for her at home, so it was up to me but we could go home if I was comfortable with that. I decided it was probably a good idea to get home. Her breathing sounded a lot better. If it didn't, I probably would have opted to stay another night. She's not a very happy baby this morning. Poor thing. I, for one, am glad to be home. Have to run out to get all her prescriptions. Moira's spending the weekend with her Mimi, Aunt Jaynie and Aunt Shirley near Austin, so it'll be quiet here. At least that's what I hope. That you all for your prayers for Peyton. I'll keep you posted on her recovery.

Friday, May 4, 2007

Another Night In the Hospital

Looks like Peyton will be staying at Christus St. Catherine's Hospital for at least another night. Dr. Haney saw her this afternoon and re-examined the x-rays taken yesterday. There is a bit of pneumonia in her upper right lung. This apparently isn't uncommon when patients are laying down so much. It will be something the doctor will be watching for with future bouts of congestion. They aren't pushing the feeding too hard until the pneumonia clears up. Peyton's wheezing isn't any worse, so that was a good sign. She has developed thrush on her tongue and a diaper rash.
Sarah said that Peyton was looking a bit better and is perking up a little. She managed a couple of her 'heart melting' smiles today.
Granny ~ Anne

Hospital Update

Good morning! Last night Peyton still wasn't eating, so she had a feeding tube inserted in order to get some calories into her. She started getting treatments from the respiratory tech. as well as her breathing treatments. Sarah said that Peyton had been awake a little bit more, but mostly just wanted to sleep.
I just spoke very briefly with Sarah. Dr. Haney was in to see Peyton and thought that she sounded a bit better today. She cut back on her IV a bit and is making up the difference with her tube feedings. They are going to watch her all day again. There is a slight possibility that she may be able to go home tonight. It will all depend on how responsive she is today and what Dr. Haney thinks when she does rounds after office hours. We have to have her in tip top shape for her 1st birthday on the 15th!
Miss Moira has gone off to spend the weekend in Austin with Mimi and Aunt Jayne. I know she will have a great time there and will keep the ladies hopping!
Thanks again for all the prayers, journal entries and phone calls! Your support and concern is really appreciated.
Anne ~ Granny

Thursday, May 3, 2007

Another Hospital Update

Peyton still isn't eating this afternoon. She has a lot of congestion so the resp. therapist will be coming to suction her out. Her throat is quite irritated. It is possible that she also has conjunctivitis - an ophthalmologist will be checking her out later. Dr. Haney wants to keep her for another night since she isn't eating. They are going to give her another chance to eat later on. If she doesn't take her nourishment then she will have to have a feeding tube inserted again. She just can't afford to be losing any weight.
That is all the news for now. Sarah sounded pretty tired, but they are all hanging in there.
Anne ~ Granny

Hospital Update

Good morning! Not much news to report yet. Peyton is still quite lethargic, which is a concern. She doesn't want to take her bottle. The good news is that her sugar level rose from 48 to 65 and then 125, which is much better. The doctor still hears crackling in her lungs and she is still wheezing. She is continuing with the breathing treatments every four hours. They aren't giving her any anti-biotics yet as it is possible this is a viral problem. Dr. Haney will be seeing her around 11:30 ~ perhaps there will be more news then.
Thank you all for your prayerful support.
Anne ~ Granny

Wednesday, May 2, 2007


Just a quick update again. Sarah phoned a little while ago. She wanted you all to know that Peyton is settled into a very nice room at the hospital, complete with bed for Mommy. It was discovered that Peyton's sugar is low, so glucose has been added to her IV. It makes sense that she is so lethargic if the sugar is low. She'll be getting her sugar checked regularly through the night.
Ron picked Moira up at day care and was going to bring her over to the hospital to see her little sister. I'm sure it will be quite exciting for Moira.
Thanks for your prayers and kind notes.

ER Update

Latest Update:
The results of Peyton's blood work came back okay. She does not have the RSV or pneumonia. Dr. Haney thinks that whatever she has began as something viral and has spiraled into dehydration. The doctor is inclined to keep Peyton over-night to monitor her and continue the IV and breathing treatments. There is a possibility of her having a CT Scan if she doesn't respond to the fluids soon as the doctor is concerned that there may be a neurological factor involved. Right now it is time to sit and wait and pray. More details to follow.
Sarah sends best wishes on your birthday Heidi and so do John and I!

To The ER

Because Sarah doesn't have access to a computer at the moment, she has asked me to send off an update on Peyton's condition. For the past 4 - 5 days, Peyton has not been feeling well. Since Sunday she has only been awake for a couple of hours in total and is very restless. On Saturday, she saw the pediatrician on call. In spite of looking ill, the doctor couldn't find anything wrong with her and sent them home. She continued to sleep most of the time, have a low grade temperature, refused to eat, had congestion and wheezing. On Tuesday, Ron took her back to the pediatrician's and she saw the same doctor as on Saturday. She agreed that Peyton looked worse, but still couldn't find anything wrong. At this point Peyton did have a fever. She did order some blood work. Later in the afternoon, the nurse called to let them know that Peyton's white count was up. About ten minutes later, the same nurse called back telling Sarah to bring her in first thing this morning.
When Peyton went to the office today, her own pediatrician saw her. She has sent them over to the ER at Christus St. Catherine's Hospital which is next door to her office building. She wanted Peyton put on an IV because she is dehydrated. Perhaps her lethargy is caused by this. Dr. Haney wants a chest x-ray done and an RSV test.
Sarah phoned a few minutes ago from the ER. After three tries, the IV has been started and Peyton is getting fluids in. The ER doctor has been in conference with Dr. Haney. Right now, Peyton is on her way for a chest x-ray. It is quite possible that she will be admitted, at least over-night for observation.
I know you will keep them all in your prayers. As soon as I know any further details, I (or Sarah) will update the site.