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
area know anything about nanny agencies or anything that might help us out?? Houston
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.