Hospital Life...Day 12

Weekends are a little quieter here.  There aren't so many people around, it seems.  The residents came by and then the team {a smaller version of the team that rounds during the week}.  I was sad.  The doctor who has been with Peyton from Day 1 went off service.  A new doctor is on for the weekend and then another new one will be on after the weekend.  Truly, there's no "bad" doctor on the list of doctors whose service she could be on, of all the ones we've ever seen.  But if I had to choose my top 3, these three would make up that list.  It's funny, because I had just had this discussion with Ron.  I knew that this was coming.  I shouldn't fear change so much. 

Since we're in it for the long haul, I had Ron bring a couple comforts of home for Peyton - not just me.  She's had her pink hippo since we went to the ER 12 days ago, but I had him bring her frog and her blanket from her crib at home.  We've got an animal theme going.  the purple elephant is new.  MUSC has a volunteer program called Happy Wheels.  Donations of books and toys are given and each Thursday, volunteers come around with a cart.  Each shelf of the cart has toys or books {one week it's toys, the next it's books} grouped by age range.  Peyton has been the recipient of several Happy Wheels items over the past few years.  The elephant was from this past Thursday. The frog is actually from one of her stays this past February.  What a great program to have.  If you would like to find out more and especially if you would like to contribute in some way, you can read more HERE.  As for the hippo that everyone seems to love so much, I received that myself as a "blogger perk".  Over on my personal blog, I was contacted by a company called Hullabalu and asked to do a review of one of their toys in exchange for the toy of my choice.  I gladly accepted the offer.  You can read about that over HERE.  It's too bad Dr. M went off service because Peyton's about to add another animal to the collection later today as I asked Ron to bring another specific item from home.  He was always commenting on her little friends.

As for how Peyton is doing, it is honestly so hard to say.  I had a talk with the doctor yesterday outside of the whole team being present and there is still the hope that we will get her back home.  Some of her lab numbers look a little improved {hemoglobin, albumin} but she just doesn't look good.  I took this picture yesterday.  She doesn't look well here and she doesn't look as "well" today as she does in this picture.

One concern that I have right now {since yesterday} is that her arms and hands have been icy cold.  Absolutely freezing.  Sometimes it's her entire arm through her hand.  Sometimes it includes part of her side and part of her chest.  Sometimes it's one arm/hand and not the other.  Sometimes it's patchy spots of coldness on both sides.  Along with it, she's so clammy to the touch.  She is sweating a lot.  If you run your hand through her hair, her scalp is wet and her hair is soaking wet in places.  Her temperatures have been up a little - in the upper 99s to 100.3ish.  For her, that's high.  Fever yet freezing cold to the touch.

I don't understand what is causing this to happen.  Is it something in her brain not firing right?  I'm not sure.  The doctor this morning said that it's possible that with the diuretics being given to take fluid away, there's a shift in her system that is causing the hemoglobin numbers to be falsely higher than they really are.  I can't explain it right - but it made sense when he explained it.  Her hemoglobin has been trending upward the last couple of days - enough to where they called off a possible blood transfusion on Friday.  It's possible her anemia is causing this issue with her body feeling so cold.  It could also be some sort of infection, although I think that's a small possibility right now, but certainly something to watch for.  They are obviously going to keep a close eye on everything.  The doctor said that it is possible she may need a transfusion and so not to be surprised if that does become necessary again.

Peyton completed a total 3 infusions of iron by IV yesterday, after being given once every couple of days.  The plan is to repeat an iron study on Monday to see where things stand.  Peyton's potassium is also really low.  I believe they had added some potassium to her list of meds {via g-tube} but it is quite a bit lower now, so they are currently giving her an IV infusion of potassium.  That will run over a total of about 3.5 hours.

Gastroenterology has weighed in.  They ordered some stool studies to be done.  She doesn't have c diff, so that's good.  Some of the studies are going to take some time to come back, but they are essentially looking to see what fats and proteins are being excreted in her stool.  They currently don't know where she is losing her protein.

I just want to thank the people who have been so good to us.  Neighbors who have helped out with Moira - you have no idea how grateful we are that you've been able to step in and help with her.  Friends, please remember Moira when you're praying for us because I know this is hard on her even if she doesn't say a whole lot.  I don't know how much she is aware of how sick her sister is.  We haven't had a "big" talk with her because we don't want to cause more harm than good, especially if it's done prematurely.  But she has to be aware on some level, so please pray for her.  Friends who have come to visit, brought food or snacks - thank you!!  Your company is so appreciated.  So is everything else.  But just to have company is huge.  When we're up here alone, it can start to feel pretty isolating, even if I do have the internet to bring the world a little closer to me.  Family.  Wow.  We were expecting Ron's dad and his wife to visit long before Peyton was hospitalized.  I am so grateful they still came even when the found out half the family wouldn't be home and that they got a chance to come visit with us up here.  We also had the unexpected surprise of having my cousin and his wife come to visit.  He just happens to be Peyton's godfather and they are vacationing in the Myrtle Beach area, which is maybe a couple hours north of here.  We're so grateful they came to visit!  

And then there's the medical side of things.  This is Day 12 and, honestly, until a little blip with the nursing this morning, I haven't had a single issue or complaint about anyone or anything.  Even with the issue this morning, everything is resolved and we're back to things being exactly as they were.  From doctors to nurses to respiratory therapists to nurse's aides to everyone else who has been involved somehow in caring for Peyton, please know that all you do is so very appreciated.  I know without a doubt that Peyton is a mystery.  A challenge.  I know that what's been going on has probably been frustrating.  As Peyton's mom, I watch and I wish I could fix things.  I don't know how it feels to be the professionally trained person who is supposed to be able to fix things only to keep coming upon more and more obstacles.

So, that's kind of where we stand for right now.  I'll be keeping you posted....

Hospital Life...Days 6 & 7

It took almost 7 years, but Peyton spent her first holiday in the hospital yesterday - Easter.  Obviously we truly rejoice at the significance of this day.  That said, it really stinks to spend a holiday in the hospital.  I couldn't be at church so I tried to join in our church service online.  There were multiple times, but people kept coming in and out, or she was in the middle of respiratory treatments, or I just couldn't get on the site at all.  I didn't get to church in any way yesterday, so that brought me down.  Then there was the missing of a nice Easter lunch with friends who had invited us.  Then there was the missing of people in general.  Ron's dad and his wife were arriving in town yesterday and they did come up for a short time later.  Moira didn't seem overly thrilled to be here.  It wasn't a long visit.  Then there was the fact that Peyton just had a really rough day yesterday - very irritable, cranky, in a lot of pain.  I kept thinking of how much pain one can possibly bear watching their child go through and relating that to the Easter weekend - God allowing His son to suffer.  Anyway, I won't go down that road.  I think I have cried enough for one 24 hour period.

Peyton seems to be improving from a respiratory standpoint, which is great.  Also neurologically - she's not "out of it" like she was the other day.  But there are still issues going on that need to be figured out.  One such issue is some swelling and redness that started a couple days ago.  It's in the area above where the splint on her leg stops.

You can see how it's red and puffy.  Overnight last night, the swelling began migrating into the groin area.  The redness extends there as well as towards the back side of her leg going in the other direction.  The edema isn't pitting and there aren't any hard areas.  Her circulation to her foot is good.  The splint isn't too tight.

One thing we've discovered is her albumin is very low.  This might have something to do with why she is pooling fluids.  They are having to be extremely careful because her fluids are higher than they should be, but they can't just give her a diuretic to make it go away.  They have to be very cautious about fluid intake and output.  She does require an albumin infusion.  That will happen today.  They will also do an ultrasound on her leg.

In terms of seeing if there is another fracture, they are very hesitant about doing any additional x-rays...anywhere.  Peyton has had so much radiation between x-rays, CT's, etc. in the past month or two.  They don't want to expose her to any more than absolutely necessary.

Right now, the plan is to do a lot of watching of this swelling, all her labs, etc.  I think they wanted to try to get her home the early part of this week, but I'm doubtful about that happening.  The nurse today thought it might be a good idea to get Peyton into a regular bed rather than a crib, so they are actually working on that right now.  She's got her bed, she's in it, and the nurse and tech are working on getting pads set up on the side rails.  She looked so huge in the crib.  Now she looks so tiny in this huge bed!  I'll post a picture of that next time.

We truly appreciate all the prayers.  As I overheard one of the residents or students saying on rounds out in the hall the other day, Peyton is a "challenging" case.  As you know, when we do go home, it doesn't get less challenging.  It gets more challenging.  They Peyton we knew last week is gone.  This is another decline in her overall condition.

Hospital Life...Days 4 & 5

First of all, today is National Doctor's Day!  Did you know that?  What better place to spend it than in the care of some of our favorites.  Well, ok, I can think of better places to spend it.  That said, I want to take a moment to thank the following for all they have done for Peyton.  I know I'm going to miss some, but here goes:

Cardiology - Dr. A. Savage
Endocrinology - Dr. R. Paulo
ENT - Dr. D. White
Gastroenterology - Dr. R.B. Pillai / Dr. J.A. Quiros
General Peds Team {in-patient} - Dr. D. Mills, Dr. R. Teufel, Dr. P. McBurney, Dr. S. Mennito, Dr. A. Summer
Genetics {Boston Children's Hospital} - Dr. W-H Tan
Genetics {MUSC}- Dr. G.S. Pai
Neurology - Dr. S. Kinsman
Neurosurgery - Dr. S. Glazier
Orthopedics - Dr. J. Mooney
Pediatrician - Dr. J. Quinn
PICU Team {in-patient} - Dr. F. Tecklenburg, Dr. S. Webb, Dr. J. Cochran
Pulmonary - Dr. C.M. Bowman & Dr. I. Virella-Lowell
Surgery - Dr. C.D. Smith

And these are just some of the outstanding physicians who care for Peyton.  There are countless other doctors who have impacted our lives - from when we lived in Houston and when we went up to Boston.  Then there are the countless residents, fellows, medical students, Anesthesiologists, Radiologists, ER doctors, and other specialists who have been consulted along the way.  The above list, for the most part, are the people we see most frequently.  I mention the hospital doctors because Peyton is in the hospital frequently and when she is in she is often in for a while.  These people are people who recognize us even when we aren't in the hospital and we're just passing in the hall on the way to a regular out-patient appointment.  The in-patient doctors are ones with whom I have had the extremely difficult discussions with about what to do in the event that Peyton suddenly needs medical intervention to stay alive.  These people are important.  You don't forget the ones with whom you have had those conversations!

So...a very heartfelt thank you to all the doctors who have cared for Peyton in the past and present.  Saying "thank you" seems insufficient.  But thank you!

~~~~~

Now, on to the update on Peyton's health.

I was so tired yesterday that I couldn't even think of writing an update.  I tried to sit down to do it, but it wasn't happening.

If we back up to Thursday {Day 3}, you know that Peyton was moved from the regular unit to the PICU step down unit.  I didn't really talk about why.  When Peyton woke up that morning, she was extremely irritable.  She'd been getting oxycodone and morphine for her pain as often as she could get it and, yet, she still seemed to be in a lot of pain.  When the respiratory therapist was in, she noticed how unlike Peyton this behavior was, even for being sick.  Later in the morning, another respiratory therapist was in with her for treatments.  As she was working with her, she grew concerned because Peyton was only taking 6-8 breaths a minute.  Instead of being extremely agitated and irritable, Peyton was pretty much out of it.  Not much activity at all.  She went from one extreme to the other.  We didn't know what was causing either one!  She called the respiratory therapist who had been in earlier.  They called in the nurse.  They eventually called in the doctor.  A lot of assessing went on and, long story short, it was decided that she could be better observed in the PICU step down unit, so she was transferred.  They did consult with the PICU team, who did come down to assess her themselves.  This is a good step to take just in case something were to happen that would send her to the PICU itself.  Through all of this, though, we really didn't know what was causing her to be so sick.

The doctors were quite concerned for her on Thursday.  There was a lot of unknown in terms of why she was behaving the way she was.  Rather than just jump to the thought that there was some neurological issue going on, they decided to see if it was all of the heavy pain medications.  They gave her a drug through her IV called Narcan.  This drug basically reverses the effects of any opioids in the system.  She has had no morphine since then and very little oxycodone.  While the drug was being administered, Peyton grew clammy and cold and then began throwing up a lot.  She did become agitated again and her respiratory rate did increase.  Eventually, though, she became pretty sleepy again.  Throughout the time she had been in the hospital, her heart rate had been pretty high.  Normally when she is asleep, it's between 70s-80s and it was in the 150s while she was sleeping.  While awake it's in the 1-teens to 120s normally, but it was anywhere from the 130s to 160s during this time.

The lab work through Day 3 wasn't showing any infectious process, although it certainly seemed like she had some sort of respiratory virus.  They did find that she had more CO2 in her system than she should, so it was recommended that she go on her bipap, even when awake, to help with her respirations.  This did seem to help a bit and her CO2 levels did come down.  More lab work was done.  Additionally, she was sent for a head CT and a shunt series to check to see if her shunt is working properly, and a fully skeletal survey to see if there were any additional fractures.

During the night of Day 3/4, it was decided that Peyton needed to be given IV antibiotics, so those two were started.  We also got the results of the skeletal survey and it did show a new hand fracture.  Nothing is to be done about that in terms of splinting it.

This is Peyton right before her transfusion.

On the morning of Day 4, Peyton's labs were showing that her iron level was very low.  Additionally, her hemoglobin had been dropping.  On Wednesday it was 8.9.  On Thursday it was 8.1.  On Friday, though, it was 7.2.  It was decided that Peyton definitely needed a blood transfusion.  She had never had one before, so this was another "first".  That was started around 3pm and ran over about 3 hours.  At the end of it, she seemed a little more "pink".  Oh, she certainly didn't look "well", but she looked better!  Aside from this, there was just a lot of "watching and seeing" and continuing with the IV antibiotics.

Today is Day 5.  Peyton looks so much better.  Again, not "well", but vastly improved.  She's agitated today.  Last night her right thigh was swelling above the splint.  It had been getting more swollen throughout the day, but is looking a little improved this morning.  Also, yesterday her left index finger became pretty red and swollen.  They did another hand x-ray and it apparently doesn't show a fracture there, but that's not to say there isn't one.  To look at it, I would guess there is one.  The resident said it could take some time to heal before it shows up better on the x-ray.  There really wouldn't be anything to be done for it anyway.  Peyton's hemoglobin is up to 8.6!  They will, of course, keep an eye on that to make sure it doesn't drop again.  They did find some blood in her stool and a small amount of bacteria growing in her urine sample.  They'll keep an eye on all of that as well.

This is Peyton right after the transfusion.  Just a little more "pink" than before.

Peyton looks quite a lot better this morning.  Again - not "well" but if you'd have seen her on Thursday morning, you'd see a huge improvement now.  Our heartfelt thanks to the anonymous donor who gave blood {type O negative} so that Peyton {also type O negative} could receive this much needed boost to her system.  If you are a donor, thank you.  It's because of people like you that she was able to get this blood.  If you aren't and don't have any health reasons not to donate, then would you consider donating?  You never know when you or someone you love will need blood!  As it turns out, I wouldn't have been a match even if I could have done a direct donation.  Our types don't match.  So that makes me even more grateful to donors today!  Thank you!!

Yesterday was Good Friday.  I wrote a post on my personal blog about the fact that Peyton was receiving blood on that day of all days.  You can read that post HERE.

As for today {Day 5}, we'll just watch and see and make sure nothing gets worse.  She was throwing up a lot yesterday and she has already thrown up a little today.  She may have a little bug.  We will not be home for Easter tomorrow.  This will be the first holiday that Peyton has spent in the hospital.  She did, however, get a nice little Easter basket yesterday from the volunteers.  I think Moira will benefit from the contents more than Peyton, but it was very nice to receive.

I will keep you posted as always.  And, as always, prayers are very much appreciated!  Thank you!

Update

When I last wrote we were concerned that Peyton would have to go back in the hospital for albumin infusions and a blood transfusion.  This week, on Tuesday, Peyton had the bloodwork done that the cardiologist ordered last week.  Long story short, we do NOT have to bring her into the hospital for these things.  Her numbers seemed to have bounced back, although I am a little skeptical of one of the numbers.  If it's right - and not a fluke - then that's great!  That's not to say her numbers are perfect.  Just good enough to avoid this possible next step.

We also saw the neurologist.  The pending test results from when Peyton was in the hospital really didn't show a lot.  There's not a whole lot to report on this visit.  The doctor is anxious to help us, but we're kind of at a point, overall, where we aren't sure what the next step is at all.

A couple days before all of this, on November 4th, Peyton began having some serious "diaper issues" which cause our home nurse to be concerned that Peyton might have c diff.  I think I wrote about that last time.  We had to get a stool sample kit from the pediatrician's office on Monday.  I only JUST got the results this afternoon - and it took a lot of effort on my part to get them.  Sigh.  The end result is that she does NOT have c diff or any of the other bacteria that that kit tested for.  That is great.  And I'll take that news.  But she's had really nasty diarrhea for at least a week now with no real signs of letting up anytime soon.  I did not really get anywhere with the doctor's office asking what we should do.  He suggested bulking up her diet.  She's tube fed.  I can't give her rice cereal.  I am not certain where that came from, but I can't do that.  I may need to try another probiotic.  I was a little frustrated after that whole ordeal chasing down results and whatnot, so late this afternoon (like 4:30 pm on a Friday late) I emailed Peyton's gastroenterologist through the hospital system.  I certainly wasn't expecting a response, but I've felt since we first went through the pediatrician's office a week ago that we probably should have gone through the GI clinic all along.  We just happened to run into the GI doc in the lab at MUSC this past Monday when Peyton was having that bloodwork done, so I did mention to him what was going on.  So the content of my email today wasn't going to be a surprise to him.  NINE minutes after sending that email, I had a response from his nurse saying he'd like to see her on Tuesday in clinic.  Nine minutes.  NINE.  Can I just reiterate the frustrating day - no, two days - I had trying to get results out of the pediatrician's office??  And a specialist at the hospital read and had his nurse respond to my late Friday afternoon email within NINE MINUTES.  Seriously!  Can you say "impressive"??  Anyway, so we'll just live with this til Tuesday.  Hopefully by then things are improving, but as I said, things are not heading that way so far.

On the whole, this has been a frustrating week.  First just dealing with Peyton's health issues of late.  Fortunately for me we've had nursing and they get to handle some of those nasty diapers.  However, at 1am on Wednesday, I was still up and I walked into Peyton's room and I could smell it and I knew we were in trouble.  I had to wake Ron up and she needed to be bathed, her bed stripped, laundry started, things sanitized, bed remade, Peyton redressed, and put back to bed.  THEN I had to clean the tub.  I wound up cleaning the bathroom.  At about 2am.  Does that not sound like fun??  I hadn't yet been to bed and by that time, I was wide awake.  I had other issues going on which kept me awake.  At about 5am or so I pulled up my online bible study on YouVersion on my brand new iPhone (woohoo!!) and "began" my day.  Peyton woke up in the morning as usual but when the nurse left at 4:30 Thursday, I put her down for a nap.  She woke up at 3am Friday morning.  Because I was up all night the night before, I had slept for 5 hours while the nurse was here, and then for another couple after Ron got home from work.  So, at 3am I was, of course, still up.  I changed her and she did actually go back to sleep pretty quickly.

So, we've been dealing with a lot with Peyton which has been highly stressful.  Ron and I had a long discussion about a lot of things Wednesday night after we got home from our First Wednesday service at church.  The bulk of it was involving another issue which was mainly responsible after the 1am diaper explosion for me to not get back to sleep.

I am not going to go into detail here.  If you want to talk to me personally in some other setting (phone, email, in person), I can share some details, but it isn't appropriate here at this time.  Suffice it to say, we were suddenly and unexpectedly in a position of having to remove our 40 hour a week home nurse from Peyton's case.  Please pray that we are able to obtain a new - and very good - nurse quickly.  I know the agency is working hard at trying to meet our needs in light of the situation, which I am very grateful for.

Aside from all that, we're just moving along.  Going through the motions of life right now.  I think it's pretty safe at this point to say that Ron and I are fairly tapped out physically and emotionally.  Peyton's 17 day hospitalization and all that involved really took its toll.  We have been so grateful for the help we've received from our church family who had set us up with meals for all of last week.  I am extremely grateful to my next door neighbor who brought her little baby and 4 year old over today and just spent the day (all day!) with me.  Just because I had no nurse and she wanted to help in some way.  Her husband even brought us lunch.  How awesome is that?  Anyway, I just have to believe that out of all of this, something good is going to happen.  There are definitely blessings amidst the struggles.  I just pray for the struggles to ease so that we can rest a little.  I'm not any good to anyone if I continue like this.

I'll keep you updated.  Peyton has a few appointments next week.  Thanks so much for all your prayers and continued support!  

Remember Last Month?

Today was going along just fine, although Peyton was pretty irritable and her heart rate was a bit higher.  The doctors made their rounds and we were sharing all our concerns about her.  They left the room.  The nurse came along.  He was in the doorway at the cart {they have carts in the hall with their computers and some meds/supplies are also locked in there}.  I lifted Peyton up into a sitting position so I could make adjustments so she'd be more comfortable.  Almost immediately she kind of threw her head back and was staring off into nowhere.  Then things seemed all to familiar.  Remember when she stopped breathing last month for about a minute??  It was happening AGAIN.  I called to the nurse who called down to the doctor who was still in the hall but up a bit.  Everyone came in.  They didn't call a MET but someone asked if they should.  The episode lasted about 30 seconds this time.  I was able to grab for the suction while the nurse got her oxygen going.  The doctor was just seconds behind coming into the room, but she was pretty well through it when she came in.  Her heart rate was elevated, although it has been all day.

More discussions ensued about what's going on with Peyton.  They still don't know.  More discussions ensued about what to do with Peyton.  She had been taken off one of four antibiotics that she's on, but they began discussing putting her back on that.  They were going to stop a second one, and the orders to discontinue had actually been put in.  They cancelled those orders and have continued.  She's on 3 antibiotics that I know of for sure.  Not sure about the one that was d/c'd if that will come back or not.

I described what happened to the doctor and stated it was exactly like the episode last month, only not as long.  It is possible, as I thought last month, that it could be seizure-related.  They are going to talk to neurology and get their take on it.  She may need an EEG.

The pulmonary doctor was consulted after this and this was him finding out that she was even in the hospital.  He was not impressed.  I don't blame him.  Actually, as far as I was concerned, he had been contacted because I heard someone say that they were going to - either in the ER on Tuesday or in her room Tuesday night or Wednesday morning before she had the episode that sent her to the PICU.  Anyway, he's on the case now and his suggestion was for her to wear her bipap 24 hours a day to help keep her airway open in the event this happens again.

Because of what happened, it was decided that Peyton would be moved to the PICU stepdown unit.  So we are not where she was on Wednesday {thank God}, but she is being more closely observed here.  Not that she wasn't before...but there's more constant monitoring in the stepdown unit.  She's on the full monitor rather than just the pulse ox monitor which only measures oxygen and heart rate.

Nothing had been mentioned yet about going home, but now that we're over here, it's definitely going to mean a longer stay.  I don't know what is going on with Peyton, but I believe there are multiple issues.  If anyone from the show "Mystery Diagnosis" wants to weigh in, I'd be more than happy for them to!!

As always, prayers are appreciated!  Please keep Moira in your prayers too.  This stay is really weighing on her.  She was unable to go somewhere today because of Peyton being in the hospital so she was upset about that.  She's worried about Peyton.  Seeing Peyton in the PICU, even if only briefly, was scary for her.  It was scary for us!!  

I'll keep you posted!

Still At The Hospital

As of Sunday night, we were waiting on peds surgery to come take a look at Peyton.  We were also waiting on an ultrasound which would help them see if there were actual pockets of infection in the abscesses.  Neither ever happened by the time Monday morning rolled around.  When the pediatrician did his rounds Monday morning, he took a look and decided to scrap the ultrasound altogether.  He had surgery paged and they came to take a look.  The redness had extended beyond where it had been.  The inflammation was a lot worse than the night before.  Clearly, the infection was spreading.

Peds surgery came around and they decided that it would be best for Peyton to have a little surgery to try to completely drain the abscesses.  There was discussion about how best to do that since she's not a good candidate for anything other than a complete general anesthesia.  They decided to take Peyton up to the procedure room in the PICU where they had a doctor up there administer and monitor her with conscious sedation.  He used ketamine and propofol.  I guess he gave her a pretty hefty dose because she was still fighting after all the ketamine was administered.  I was holding her hand and she had a tight grip the whole time. She was moving around a lot.  With the propofol she calmed down some, but she never closed her eyes.  She never went to sleep.  She never lost her grip.  It lightened a little, but never lost hold of my hand!  She fought that anesthesia.  She wasn't feeling the procedure (at least not that we know) but she was not out!

The procedure went well.  I got to stay with her the whole time.  I managed to stay on my feet this time!  :)  They didn't get as much out of the abscesses as they thought they would, but they did get some out.  The surgeon left in a piece of tubing.  There's two incisions.  The tubing runs in one opening and out the other about an inch and a half below the first opening.  Then the tubing is tied together in a knot on the outside.  I guess it holds the area open to drain.

As of this morning, the inflammation is way down and the area is less red.  It's still pretty red right around the main area.  Where the redness had spread is still red, but not bright red like it was.  It also  hasn't extended beyond where it had gotten to yesterday.

She's on a couple different antibiotics for now.  I haven't had any word as to how long she will be in the hospital.

You can read more on all this over here:

http://fontenblog.blogspot.com/2011/10/gods-armor.html

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)!

Another ER Visit

Well, Miss Peyton got this week off to a good start. We had friends over for a mini Super Bowl party Sunday night. She was a bit cranky and felt a little warm, but not too bad. We put her down for a nap around 5 but even after she woke up she was still pretty cranky. We checked her temperature later and it was over 102 and then by midnight was over 103. That would explain a lot! I went in to work Monday for a few hours and to bring stuff home to work on and got home around 9am. She still had a fever. I made a doctor appointment for her but couldn't get in til 4:45!

I let Peyton rest all day and tried to feed her but she wanted no part of it. She wouldn't drink anything. I tried to give her medicine droppers full of formula and PediaSure, but she knew what I was up to and made her opinion pretty well known. I got her to the doctor and waited and waited and waited. She was the last patient of the day. So, I think we were seen somewhere around 6 or so. Her temp was up but not quite as high and her pulse ox level was a bit low. Peyton was coughing and her breathing was sounding pretty rattly. The doctor decided to send us over to the hospital ER for tests.

So, I drove the car around (the hospital is next door to the doctor's building), and took Peyton in to the ER. Forget those stories you hear about hospital ER overcrowding and eternal waits. There were maybe 10 people and we waited maybe 10-15 minutes (if that) before being called back to see the screening nurse. Usually they dump you back out in the waiting room, but she took Peyton right back to a room. Her heart rate was fast and pulse ox level low. We had to wait a while once in the room but they did a chest x-ray which wound up being normal, and did blood work which wound up being ok. They got her on an IV so she could get fluids as she was pretty dehydrated. She also had to be able to drink on her own. She managed a little but was mad because she couldn't hold her bottle herself with her one arm strapped to a board (IV in that arm). She didn't want my help either! So, we were finally declared ready to go. Too bad...I was "enjoying" the man in the room next door going on and on and on about how all he drank that day was carrot juice.

We got home pretty late last night and I made Peyton even more mad by having to hook her up to her pulse ox monitor here, as we do every night. But FINALLY she was able to go to sleep and not be interrupted...as was I. Of course, now that it's morning, I am not feeling too hot myself and am home feeling sick and taking care of Peyton. But Peyton is in much better spirits today.

Sleep Study & The Future

Yesterday I called Peyton's pediatrician's office to make sure they'd gotten my fax with the sleep study report. The nurse called me back and left a message to say they had and that, oh, by the way, your appointment with Dr. x is scheduled for 2/29/08 and 1:30... My thought was what kind of doctor is this??? So, I called back and she said, oh she's a cardiologist. Well, I nearly died because no one had mentioned to us that Peyton needed to see a cardiologist! Since she had no information at hand about what this appointment was for, I had to hang tight and wait until the afternoon when the pediatrician came in.

Around 1:30, the doctor called me and explained that the doctor from the sleep study probably referred Peyton so they could establish a base line for Peyton's heart. As she explained to me, she (the pediatrician) had never seen a sleep study as bad as the one Peyton just had, and with central sleep apnea, over time there can be damage to the right side of the heart as there is extra stress from the lack of oxygen. Ok, so I can understand the visit now, but that issue had not ever been explained before so it took me quite by surprise.

That conversation then evolved into one about Peyton's future. The doctor said as much as you want to be optimistic (and we still try to be), she said the last few studies done on her recently have not been encouraging signs for her. We discussed how with no diagnosis of a syndrome yet we don't know what she has and, therefore, don't have a prognosis. I mentioned how the neurologist the other day had mentioned generally speaking that children with neurological impairments often pass away due to respiratory issues. So, you can gather where this conversation went. We just don't know what Peyton's future holds or how long she'll be with us. So, in the meantime, we'll just keep on doing what we're doing because that is what is best for Peyton. I always feel guilty about having to work while someone else takes care of her during the day. This conversation yesterday certainly did not help in that regard.

The doctor wants to get a few more specialists involved to see how we can help Peyton but she's afraid that Peyton's development may not improve much more beyond where she is right now. She said that any positive things that are happening (like the feeding I mentioned the other day) should be considered little miracles for Peyton. I keep hoping that one day she's going to sit, crawl, stand, and walk, but I have felt for a long time now that walking may be too lofty a goal to set for Peyton. That said, I will NOT give up on her.

So, that uplifting conversation with the doctor rounded out what I would consider to be one of the worst January's of my life. Now I wonder what February has in story for us! I'll keep you posted.

Feeding Problems

I received a phone call from Peyton's pediatrician a few hours after my last post earlier today. She, of course, had spoken with the speech pathologist after the swallow study had been done last Wednesday and got her impressions of how Peyton did during the study. To the doctor, it sounded more on the grim side. She did speak to the gastroenterologist Peyton saw when she had the NG tube earlier this year. They reviewed the study and have decided that it isn't absolutely urgent for us to get in to see the gastroenterologist immediately. Yes, we do need to see her. The earliest appointment I could get is not until 12/06/07, and that seemed to suit the pediatrician based on the conversation they had.

Basically, the news from the study is not good news. It showed things about Peyton that were not good signs. The pediatrician explained that statistically kids who are in Peyton's current situation with her swallow study will more than likely wind up with the permanent G tube. She told me that we ought to prepare for that reality, though it isn't necessarily something that is going to happen soon. Although, it could - we just don't know. They will be very concerned about Peyton's weight (they are always tracking it very closely anyway) and will look for any signs that she's falling off the growth curve she's currently on. Being only around the 5th percentile for weight, we don't have lots of leeway.

I asked lots of questions and in a nutshell, I think that probably with all of Peyton's issues it may be a case that Peyton's developmental and neurological deficits are playing a strong hand in what is happening to her now. There are some parts of what is going on which will not really be aided through therapy, though we are to get into some feeding therapy with her and hope for the best. It may be that she has done as remarkably well as she can in terms of her feeding and may be at a point where she's at her limit for her capabilities and needs to have assistance. The eventual placement of a tube may not necessarily mean that once it's in she will receive no food by mouth whatsoever as we'd thought last week. It may just be for supplemental nourishment.

The doctor asked me if I was up on my CPR. I took a class before Moira was born but that was a few years ago. I could use a refresher. She stressed that anyone who is to care for Peyton must be current on their CPR training. Since Peyton has issues with her swallowing, it could be more possible that she could choke on her food. I, myself, think she's not even swallowing all of her saliva, so she might even choke on that. Of course, the doctors will continue to follow her and watch her very closely for any signs of pneumonia which she is at greater risk for since she is aspirating some of her foods.

It was a lot to take in today. It was a good news/bad news sort of situation. We'll get her therapy going as soon as we can and hopefully that will help a little. We'll see the gastroenterologist next month and get a clearer picture of what we can expect. Hopefully we don't have to go the route of the G tube anytime soon, but we'll obviously do whatever is best for Peyton.

I'll keep you posted on how the dentist visit goes tomorrow! Wish me luck!!

Glaucoma Update

We had a good report from the ophthalmologist (the glaucoma specialist) yesterday. Peyton went in to the hospital Monday for surgery. She was to have the tubes of the shunts in her eyes shortened as well as remove a chalazion from her left eye lid. The doctor performed the eye exam under general anesthetic and found that the shunt tubes did not need to be shortened at this time. He said that as her eye grows, the shunts will shift. So, whereas he felt it necessary to shorten them when she had her eye exam back in July, it was now not necessary. However, he did say that they are shifting in the direction of needing shortened, but they are not yet in a position where they will cause damage to her cornea. He wants to keep a close eye on this but doesn't want to do surgery until it's absolutely necessary. I suppose that is to minimize the chance of having to do it again later as her eye continues to grow. As for the chalazion, it must have gotten better, as he did not see that it was necessary to do anything about that either. So, if you're thinking this was all a waste of time and an unnecessary general anesthetic (Peyton's 15th), it really wasn't. She was due for her routine eye exam which must be done under general anesthetic. This is to check the pressures in her eyes. The doctor said her pressures are great. We'll repeat the exam in 3-4 months to make sure they are still good and to be sure the shunt is in a good position. The worst thing about yesterday's procedure was that Peyton's veins are terrible now and they had much difficulty finding a vein for her IV. This has been happening with the past several procedures. I had never seen this before, but they had to place the IV in her neck! Poor baby.

I took Peyton to the pediatrician last Thursday to have her cleared for sedation for the eye exam. Peyton is now 17 months and is 21 lbs 12 oz and is 31 inches long!! She got caught up on her vaccinations from 15 months and got her flu shot. The doctor also told me that she ought to see a dentist for a check up since she has about 16 teeth now. Since she is extremely sensitive to touch, it is impossible for me to get in even with one of those little baby toothbrushes you slip on your finger. The doctor told me not to worry about not being able to get in myself, but to see a dentist and make sure she's doing ok there. I wound up not using one of her recommended dentists as they weren't in my insurance plan, but I did call Texas Children's Hospital myself and found that they offer routine dental services to special needs children and children with complex diagnoses. So, Peyton has her first dental visit on Nov. 8th. It would not surprise me in the least if she had to have a routine cleaning done under sedation. I suppose I'll find out on the 8th.

Aside from that, Moira's cold is lingering on still. I'm starting to get my second cold in as many weeks. We're all enjoying our visit with my parents and will be sad to see them leave tomorrow. At least it's only about 2 months til we see them again. Hard to believe Christmas is in 2 months and 2 days!! Where did the year go???

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.

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.