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.

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.

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.

Daycare: Crisis & Resolution

In the past few days, our ongoing battle with the girls' daycare came to a climax and then a sudden end. Peyton's vision teacher had been to see her at the daycare last Wednesday. In getting the report from her, I inquired as to whether or not Peyton had been wearing her hearing aids when she arrived. She had not. She put them in herself and left them in when she left. However, when she turned back, she saw a teacher remove them. This whole issue makes us so unhappy. On Wednesday night, I requested that the daycare start logging the time she spends with her hearing aids on and I explained, yet again, the importance of keeping her hearing aids on her. The vision teacher had also explained this when she was there. I was going to say, our repeated requests seem to have been falling on deaf ears... At any rate, they did log the time on Thursday. It wasn't great, but at least they were logging the time. On Friday, they logged 8:30 - 9:00 am and 4:10 pm. I picked her up at 5:30 and they were out. I was furious that she had them in so little that day. I went home and wrote them an email that I requested go in her file.

On Monday, yesterday, when Ron dropped the girls off at daycare, he wound up in a discussion with the owners about the email. It was my intention to firmly impress upon them the importance of her wearing her hearing aids for so many reasons. I ended my email by basically stating that by denying her the access to her hearing aids, they were depriving her of the right to experience the world around her in addition to blatantly ignoring the medical necessity for the hearing aids.

The daycare just refuses to back down on their stand that the hearing aids are a choking hazard (they aren't). They pretty much implied to Ron that they no longer want to deal with Peyton. He said he did not want to drag it out any longer, so what kind of notice of termination did they need. They said none. I know they require 1 or 2 weeks, so that pretty much says right there they don't want us there. He said fine, both of them would be removed as soon as we secured a spot for each of them.

I left work early yesterday to meet Ron and Moira at the daycare we found that was near the special needs school we ultimately want Peyton to go to. We were there about an hour or so. Moira loved playing with all the toys. The center looks like a barn and they do, in fact, have some animals - a pony and a donkey as well as some birds. There may be more that we didn't see. They also have a pool and offer swim lessons. We were impressed enough to ask how soon she could start. Moira started today. She is enrolled in the swim lessons, so will swim every day. The classes, in general, get 2 free swim days a week during the summer, so today she had her free swim plus her lesson. I emailed the daycare earlier today and Moira is doing just fine. Seems to really enjoy it there. She was not shy at all this morning. She went right to the toys and started playing. She didn't make strange at all. I was probably more clingy to her than she was to me!

We left that daycare and I took Moira home while Ron went to pick up Peyton. He picked her up and told the daycare that today was Moira's last day and asked them to go clear out her cubby. They were surprised. I have no idea how they could possibly be, but they were. They asked what about Peyton. He didn't withdraw her last night because we hadn't seen her babysitter yet.

We all went to visit a lady who babysits in her home. She's near to our house, which is convenient. She seems to have a pretty good set up. She was very up-front about state requirements and her license and inspections. You can tell that she is doing everything she can to ensure she follows all the regulations. We were comfortable enough with her to ask how soon Peyton could start. Peyton started this morning as well. No word yet on how she is doing. I intend to call shortly.

After dropping her off, Ron went back to the old daycare to collect Peyton's belongings and give her notice. I think they were fairly surprised at how quickly we terminated them. They wondered if we had been able to find places for the girls. Ron said yes, they were both there now.

So, hopefully all our daycare crises are behind us now. I'm feeling better about things although I'm anxious to get to the end of the day to make sure they are ok!! It's a new day!

Oh, and in case anyone wondered....I did file a complaint with the State last week. I intend to follow up with them as well as send a letter to the daycare and various agencies regarding our decision to terminate so it goes on record why we did what we did. Aside from that, it's all behind us now!!

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!

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!

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.

Sickness and a Birthday

The past couple of weeks have been strangely calm, yet insane at the same time. As far as Peyton's ongoing medical issues go, it was calm. She's still a little down on her weight, but we're working on getting it back up. Working against this is the fact that she's got her top 4 teeth coming in all at once. She was also under the weather from last Friday til Tuesday. Her eyes are continuing to hold their own. She still has a bit of swelling inside her left eye, so she is continuing with her steroid drops. She has not had too many doctor appointments in the past couple weeks, so that has been kind of nice for a change.

I was sick, myself, with a bad flu bug coupled with a pretty nasty throat infection. I'm not 100% better just yet, but feel many times better than I did last week. I missed an entire week of work because of illness.

I managed to get well enough to have Moira's 3rd birthday party. She had her party at Chuck E. Cheese. It was just a small family get together, along with a friend and his daughter who is 8 months older than Moira. The party was fun. The best part was no mess in my house!! Moira was excited with her party and all of her gifts.

For the past week or so, the daycare has been working on transitioning Moira to the 3 year old class. She has been doing pretty well. She's adjusting to their schedule which is a little different from the 2's. Effective this coming Monday, she will officially move into the 3's. Way to go Moira!! In the middle of this, she came home with a case of pink eye and is on eye drops now for that. Never a dull moment in our house!!

We are enjoying a visit with Mom and will be sad to see her leave on Sunday. She's been a huge help to us, especially with 3 out of 4 of us being sick while she's been down. She'll be leaving us to go back home. In a couple weeks, she and Dad will celebrate their 40th wedding anniversary. We're so excited for them and wish them all the best!