Uneventful Week

Oh how I love when things are uneventful!!

This week, Peyton saw the ENT.  This was her only doctor appointment this week.  Within a space of 20 minutes, I had checked in, waited in the waiting room, saw the triage nurse, got put in a room, saw the ENT's nurse, waited for the doctor, saw the doctor, and was walking out with a paper with our 6-month follow up appointment already booked!  All's well on the ENT front!!

We had a special review for Peyton's schooling today.  We met with the special ed teacher and a few of her homebound education therapists.  Peyton had a decent school year this year.  She's been through a lot, and has regressed in some areas, but they're looking at her responses to people, and how she reaches for things and they think that she's shown definite improvement.  Of course, it's often on her own terms.  It's not where they'd like for it to be, but she's improved in her social interaction with them and that is great!  There is an extended school year which is at the school for a few weeks or so during the summer.  This wasn't offered to her for this summer.  The reason is really that Peyton has had the longest stretch EVER of school/therapies at home since she started school at age 3.  Even this year, there were lots of interruptions.  However, for the past few months, she's been doing relatively ok and has had more opportunity to have her teacher/therapists see her at home.  So, really, it was decided that she (like most people) just needs a break.  We'll convene again with the group to discuss her IEP for the next school year later in the summer.  We'll decide then if she's to be homebound or exactly how things will work for the next school year.

On the health front, Peyton's new antibiotics are giving her some issues with horrible diarrhea.  This has resulted in a nasty diaper rash which left her very out of sorts yesterday and not sleeping well at all for the past few nights.  She was much improved today, so I'm hoping she'll get a much better night's sleep.

We are finishing up this week with the current nursing agency and will be moving on to the new agency.  After speaking with the new agency this week, we are very much encouraged that we should be able to get her 84 hours a week staffed no problem.  One of the new nurses for Peyton, as it turns out, actually lives in our apartment complex!!  Not in our building, but very close by!  How nice is that for her?!  

I hope all my Canadian family and friends had a safe and enjoyable Victoria Day weekend last weekend.  Wishing my American friends a safe and enjoyable Memorial Day weekend this coming weekend!

Busy Busy Busy

Peyton has been 5 for a whole week now!  

Peyton has managed to stay ER-free since May 3rd!  This is somewhat of a milestone in and of itself.  Prior to this, we were showing up at the ER every 2-3 weeks!  Big praises to God for allowing this bit of peace in our lives!

This past week has been quite busy with lots of appointments.  I'd like to say we're through with appointments for a while, but we're not. Here's an update on what's new with Peyton:

We saw a new doctor last Monday.  This one is an "Infectious Disease" doctor.  The pulmonary clinic had consulted with him a few times on Peyton's medicines for her respiratory infections, so he offered to see her himself.  The thrush we've been treating for a few months, according to him, is not thrush!  I'm not sure he knows exactly what it is, but he knows what it's not.  We're no longer treating for thrush.  It could just be a nasty coating on her tongue from all the meds she takes.  As for the treatment for her respiratory illnesses, he's made a change.  The pulmonary clinic had already taken Peyton off of the one antibiotic which was clogging the tube.  It was changed to a different one.  She is also on a second antibiotic.  Has been this whole time.  The ID doctor has taken her off of that one and put her on a new one.  So, she's on two new antibiotics now.  She's taking zythromax and zyvox.  If she starts to show some improvement in the next four weeks, she'll continue on this treatment plan for a few more months.  What's a few more months considering she's been treated on double antibiotics continuously since February 2nd.  If there is no change, we'll stop the antibiotics altogether, as we would have basically determined that the bacteria we are trying to treat with these antibiotics is probably not what is causing her to get so sick.  She's been on the new drugs (combined) for nearly a week.  The only change I'm noticing is in the form of horrible, nasty diarrhea. She's spent the better part of the last year and a half on antibiotics, and this has become a way of life...but this...this is worse than anything she's had in a while.  Poor Peyton.  Hopefully it will improve in time.

On Thursday, Peyton saw the GI doctor.  She's in the 43rd percentile for weight, weighing in at just a little over 38 lbs.  There's no muscle to that weight.  What "excess" there is is in the form of flabby little upper arms, a face that's rounding out, a belly that's getting bigger, etc.  Don't get me wrong...Peyton is NOT FAT.  Far from it.  We discussed her weight.  It's been stable for the past little while, which is good.  We don't really need for her to be gaining weight right now.  That doesn't benefit anyone.  The doctor is happy with where things are at from his perspective, but suggested that if her weight increases a bit, to cut back on her pediasure by half a can a day and replace that volume with water or pedialyte so she doesn't lose the fluid intake.  For now, we'll keep doing what we're doing.

On Friday, Peyton had her 5-year check up with her pediatrician.  It was relatively uneventful.  It resulted in a call to the genetics clinic to discuss some possibilities with the doctor and how to go about testing.  This has to do with one of my prior posts where I had said that there was something brewing.  I'll keep it under wraps for now, but might involve some Genetics testing (if possible) in the form of a muscle and/or skin biopsy.  After speaking with the geneticist, I'm not sure what she'll have tested (if anything), but he's going to see her on June 1st rather than wait til our previously scheduled appointment in September.  As for the 5 year check up, all went well.  The doctor had recently traveled to Lourdes, France with a group of "malades" (pilgrims) to visit the shrine there.  He'd actually talked with us prior to all of Peyton's serious illnesses of late about going on this trip.  It would have been last year's trip, I believe.  Peyton just couldn't go - the people who determine eligibility for the trip felt it probably wasn't in her medical best interests at the time, since she required certain equipment.  Now a year has passed and, while we'd love to go, unfortunately I'm sure it's not even an option with everything we're dealing with now.  Anyway, the pediatrician told me that some of those people were asking for Peyton and they prayed for her at the Grotto, which was really special.  He gave me a little bottle of holy water from Lourdes for her.

We will start out this coming week with a visit to the ENT Monday morning.  Should be fairly straight-forward.  This is an area where we could get into "things which we don't want to get into".  When Peyton was at her worst over the summer/fall, Ron and I made some decisions with respect to her treatment plan/care which meant deciding to NOT do certain things.  One of those things is a trach.  There are a few surgical options which *might* potentially help Peyton - they all would involve a trach.  Not doing it.  Those decisions are fairly personal and they were made with much thought and with Peyton's best interests in mind.  So, as for the ENT visit, I expect him to NOT go into surgical options, because he knows what our decisions are.  I expect him to check her ears, nose, and throat.  I expect he'll say the tubes look good (as no other doctor recently has indicated they are anything other than "good").  I expect he may reference her sleep study which she had a few months back.  Maybe we go over that.  Maybe we discuss how the bi-pap is going.  I expect we'll be on our way fairly quickly.

This week ahead is our last week with our current nursing agency.  We'll move on to another phase on the 31st when we do the admission with the new agency.  I've got an email in to them to see if they have an idea of what our first week will look like in terms of staffing.  Prayers are very much appreciated for this!!

We also have Peyton's IEP meeting with the school, so we'll see how they think she's doing and what our summer plan is.  School is out on June 3rd!  That sure crept up on me quickly!  June 1st is the aforementioned genetics appointment.  Back to the ID doctor on the 6th.  I think after that we might just catch a bit of a break from doctor appointments!!  There always seems to be one or two times a year when we're just overloaded with doctor visits.  April/May has been one of those times.  Glad it's winding up!

Will update on how those last few items turn out.  Praying for improved health for Peyton now that she's settling into these new antibiotics.  Praying for some rest for her (she's not sleeping well) and for me (I'm not sleeping well)!

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.

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.

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.

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.

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.

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.

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.

ENT & An Eye Infection

Peyton saw her ENT yesterday regarding the obstruction part of the sleep apnea problem. He checked out her tonsils and they were normal. He checked her ears and found lots of wax, which he cleaned out. Then he found she had an ear infection in her left ear. We need to see him again in 6-8 weeks for that. It came as a surprise to us that she had an ear infection, so I'm very glad we saw him. He doesn't want to compromise whatever hearing she does have be letting an infection linger, so that's why we need to follow up. If she has more than a few infections in the next 3 months, then he might wind up putting tubes in her ears. We'll cross that bridge if we get to it. After all of this, he put numbing drops in her nose so that he could put a scope up her nose and into her throat. Her adenoids are normal and she appears to have a clear airway. There's a little excess saliva but probably because she may have some swallowing issues. Nothing to worry about from his point of view, and certainly nothing to do surgically. He went over the sleep study and told us, unfortunately, the bulk of the problem is with the central apnea which is related to the brain. We need to follow up with the doctor who did the study, but he said that there's probably little they can do to "fix" it. Maybe certain medications might help, but probably nothing they can do surgically.

Peyton's eye has been runny for the past few days, but by the time yesterday afternoon rolled around, the skin around the outside of her eye was very red and very irritated. While I was waiting in the ENT's office, I called Ron asking him to call her ophthalmologist. He left a message. When he got home, someone from her office called back and as he was explaining the problem, without actually looking at her or having seen her since the morning, I brought Peyton out to help aid in the description. As he was talking, I whispered "can we email a picture???" It was after 6pm and that particular doctor doesn't have clinic hours on Fridays. Sure enough, the doctor was still in the office as Ron was talking to the secretary, so he got the doctor's email address. Within minutes, I'd emailed a close up picture of Peyton's eye. Mere minutes later, Ron's phone rang and it was the doctor calling back. She said it was likely just very irritated from all the drainage coming from her eye. The drainage might be a viral thing or perhaps related to the ear infection somehow. She called in a prescription right away and we were good to go. Talk about great service!! I guess it pays to have such a great relationship with the doctors. Saved an office visit, having to take more time off work, a $30 co-pay, mileage/gas/parking for the car, etc. Now we can cruise on into the weekend will all medications in hand and hopefully without anything arising over the weekend. Doesn't it always seem to happen that way??

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.

Update

This has been a relatively quiet week for us. Peyton only had 3 appointments this week. Her vision teacher saw her on Monday. She said that Peyton is tracking really well as well as reaching and grabbing for things. She had her on her tummy and she did really well trying to lift her head. She also tried to work with her to get hre to roll over. On Tuesday evening, her new Occupational Therapist saw her. She also commented on how well she seems to be doing. Since this was her first time seeing Peyton, she didn't have any personal experience with her to compare to, but based on what others have told her and what she's read in her file, she has come a long way. The OT is also Peyton's new case manager in the Early Childhood Intervention program. Yesterday, Peyton saw her Ear, Nose & Throat doctor. Once he removed the big balls of wax from her ears, he said that her ears were clear with no fluid build up. Everything else checked out ok. He said he'd see her again in a year as long as nothing else comes up in the meantime.

In the next few weeks, Peyton will be seeing her opthalmologist (the glaucoma specialist). She'll probably have an eye exam done under general anesthetic around 2/05/07 or 2/12/07. That will likely be scheduled when we see him on the 1st. Or, maybe (crossing our fingers) she can skip it this month if all looks good on the 1st!! That would be nice. I'm no doctor, but her eyes look good to me. This would be the first month since August she may not have to have surgery. We see the GI doctor on 2/15/07. We are really hoping that we can get rid of the feeding tube at that time. Peyton's already far exceeded her weight expectations for that appointment, so I can't imagine why they'd keep the tube in. She had said in December that they'd probably quit cold turkey when it's time. So we really need to work on getting Peyton to take all of her feedings from her bottle. That isn't quite happening yet.

Thank God for a good week!! It's been a long, long time since we had a week that was entirely good news.