Sunday, May 8th, 2011

A note from Mommy:

With Peyton now in preschool, so begins the tradition of school-made Mother's Day gifts.  Although we have beautiful castings of Peyton's hands prior to each of her surgeries that Travis spent hours getting just right - this simple hand print is enough to get me all weepy.  It will take it's place in the memory box I am keeping, nestled amongst her many hospital ID bracelets, the first trach we ever changed, her jaw distractors and the more traditional baby book.  And looking at it I will forever be reminded that despite how her hand print may not be "normal" what it will represent is how very "normal" she is - putting her hand to clay as countless children have done before her and countless more no doubt will do in the future. 

Saturday, May 7th, 2011

A note from Mommy:

This won't be the last time it happens and it certainly wasn't the first time but each time it does my heart gets bruised just a little more. With some decent weather Peyton and I took the opportunity to go the local park.  There were a handful of children around us but one little girl - probably around 7 - was obviously staring at Peyton.  Every where Peyton would go, the little girl would follow and just blatantly stare.  Feeling a little uncomfortable, I decided to head away from the slides to an area off on it's own with a ride on toy.  Sure enough, the little girl followed and stood right in front of Peyton, her eyes huge and mouth hanging open.  For now, Peyton is still completely unaware of the lack of social graces the girl was showing but I was starting to get a little irritated.  In an attempt to help the situation, I asked the girl very nicely "do you have some questions because if you do that would be okay".  But she became embarrased and walked away.  When we went to play on the slides later she was still hanging around, this time bringing a friend with her to join in the fun but kept a little more distance.  Although Peyton didn't care I was tired of feeling ill at ease when I was supposed to be enjoying myself with Peyton so she and I went off to a grassy area to play soccer away from all the stares.  We went back to the slides after that family left and came across another group of children who were more than willing to ask questions - much more my comfort zone!

Later I felt a little guilty that I was being unfair to Peyton and essentially punishing her by taking her away from the slides so I wouldn't have to feel uncomfortable.   Although there is plenty of literature on how to care for a trach and we had lots of training before ever leaving the hospital with Peyton - there isn't any program in place to prepare us for these type of situations.  I can only hope that Peyton is more adept at this as she gets older because I am certainly not an expert!

Thursday, May 5th, 2011

With two intense doctor's appointments back to back you would think when Mommy announced it was time to go to Speech Therapy today I would go running for the hills.  But Courtney is my therapist and I adore her and it has been almost 4 months since I last saw her so I didn't mind one bit.  Courtney has followed me on my blog so she had some inkling of how I would look post-distraction.  Mommy gave her a few additional updates and then we got to work.

Prior to the distraction Courtney had told Mommy that we would start focusing more heavily on my mouth placement when I speak after the distraction.  So today she ran through the basic sounds and helped me remember where to put my tongue for sounds like "d" and "t".  Although my "princess spot" for my tongue placement has always been behind my front tooth - now my tongue works a lot differently then it did before so it's time to start training it to do it right now.

Courtney explained that she has worked with the surgeons at Primary Children's and before I would undergo a palate surgery I would first have to pass a test to show that even before the surgery my mouth placement for making the sounds is correct.  The reasoning is that if I can't succeed with making the correct placement before the surgery than the outcomes won't be as good and it could end up being an unnecessary surgery.  So we have a few months to make sure my placement is correct ahead of getting tested.

Because of my distraction, Courtney was finally able to get a good look in my mouth.  She saw what she calls "cobbling" (also referred to as pharyngeal cobblestoning) which can indicate some type of irritation - very possibly reflux.  Now Mommy has wanted a bronchoscopy to check out my airway for a long time but since we haven't really been any where close to a potential decannulation it hasn't been necessary.  With the cobbling and the very real possibility of reflux Mommy plans on discussing with the craniofacial panel in July about getting one scheduled soon to figure out what is really going on.

Peyton Nicole Smith

Wednesday, May 4th, 2011

So after the cardiology appointment you think Mommy would cut me some slack but oh no - it was off to the allergist today!

I'm no dummy, as soon as we started walking into the exam room I got upset.  Mommy and Grandma had taken the chairs which left me with the exam table.  I wasn't having any of that!  I insisted Mommy sit on the table while I sit on the chair.  Unfortunately, the doctor wasn't fooled! 

While I watch Caillou on the iPhone for the second time in two days Mommy filled the doctor in on my allergy/asthma history explained that the Dysphagia Clinic wanted a work up since I had such a serious reaction to milk.  The doctor started with a basic panel of testing - 5 different types of trees and bushes, 5 environmental (like pollen), 5 common food allergies and 5 common animals.  Before he started the doctor let Mommy know that although blood tests were an option they weren't really as accurate as the skin testing.  So the plan would be to do the skin testing if I would let him and use the blood testing as a back up plan.  Now for those of you who aren't familiar with allergy testing, it involves just a miniscule prick of what is being tested on an area of the back.  First my back had to be numbered and add two for a positive and negative control.  Then the pricking began!  (Now the doctor pricked Mommy once so she could feel it first and she couldn't even really tell).  I thought it was kind of ticklish the first few pricks but about 10 pricks in I was crying and ready for it to be over.  The nurse warned Mommy that it had to sit on my skin for 15 minutes and if I did have a reaction to anything I wasn't allowed to scratch it.

So while the minutes counted down I watch some more Caillou and picked out some items from the toy box.  The doctor came back in and said that I had a serious reaction to milk (no surprise there) and a mild reaction to cats.  Now Daddy has been trying to talk Mommy into getting me a cat since I like Grandma's so much so good thing she held her ground.  Although the doctor didn't order Grandma to get rid of her cat, since I spend so much time there he recommended starting me on Zyrtec daily for the symptoms associated with an allergy - runny nose, sneezing, etc.

Dr Moffat told Mommy that in all likelihood I will outgrow my milk allergy in the next few year and by being tested every year we can see how quickly the reaction goes down and when I can start milk trials.  However, most pet allergies tend to get worse with time.  In addition the environmental allergies (pollen, grass, etc) don't usually start up until a person has gone through several seasons. Since I have only been in Utah a year if I am going to have seasonal allergies I probably won't start to have problems for several more years.

Since my last blood test for the milk allergy was a year ago, the doctor sent me down the hall to the lab to get another test done so he can see where the numbers are going.  Now for anyone who knows me, a simple blood test is an oxymoron.  Mommy let him know I was a hard stick and not to be disappointed if we didn't get any blood for him today.  Down the hall we went and Mommy sat down with me in the chair.  The girls were young but fully prepared!  One held down my arm while the other looked for the vein.  After a few seconds of cleaning and finding the vein in went the needle - one stick guys!  It only took about a minute to fill the tube.  I was mad as all get out and crying up a storm but it was over before I could get too worked up.  Initially I was too angry to think about the offer of a sucker but quickly changed my tune.  We walked down the hall and out the door and Mommy explained to the concerned folks in the waiting area that I was really okay and my feelings were more hurt than anything.

So now I have another specialist to add to my list of faithful followers and future appointments!

Peyton Nicole Smith

Tuesday, May 3rd, 2011

In February of 2008 I went to the cardiologist and was diagnosed with aortic valve disease - mild to moderate insufficiency.  Mommy has been writing that on countless forms and informing every new doctor and specialist since then.  For the last two years, although I have gotten an EKG I have not wanted to "participate" in getting an echocardiogram.  So when we saw my new cardiologist Dr Mack in May of last year he recommended having me get a sedated echocardiogram the next time it could be arranged with another procedure I was already being sedated for.  My parents figured my jaw distraction in January of this year would be a perfect time but despite Dr Mack writing the order twice and Dr Norlin's office coordinating with my surgeon it didn't happen.  Mommy didn't have high hopes at my yearly cardiology appointment today that I would participate this year either.

First up was the EKG which usually doesn't bother me too much because I think having all the "stickers" put on me is kind of fun.  After that was done Dr Mack came in and hauled out a picture similar to the one above and discussed very thoroughly what was going on with my heart. First off - I have a bicuspid aortic valve.  Aortic valves are normally tricuspid (with three leaflets) but in 1% of the population it is bicuspid at birth (congenital).  Because of my abnormal valve the valve will not open fully (aortic stenosis) and will not close completely either (aortic insufficiency).  These two processes often go hand in hand like they do for me. Because the valve does not open fully it blocks blood flow to the heart and because it will not close completely some of the blood leaks back in the wrong direction.  My EKG looked great, though, and on listening Dr Mack heard just a slight murmor.  He promised to come back to talk after my echocardiogram.

We had to wait quite a while so Mommy let me listen to Yo Gabba Gabba music on her iPhone and even went out to YouTube and let me watch Caillou videos.  I was thrilled so when it was time to head to the echo room despite some inital nervousness once Mommy sat me on her lap on the exam table I watched the Caillou videos on her phone and the tech got right to work without a peep out of me.  About 15 minutes later we were all done and back in the exam room. Dr Mack came in and went through a short intro into statistics and standard deviations (Mommy had a terrifying flashback to the statistics class she took in college which she never thought she would need again) and explained that a few of the measurements were in the 1.5-2.5 standard deviation range which was not bad but one particular measurement was at the 2.69 standard deviation which was still technically within normal limits but a little higher than he would like to see.  Since Dr Mack doesn't have my previous echocardiogram he can't tell how high it was to begin with or how quickly it is changing.  For now instead of coming in again in 2 years he wants me back in a year and he is going to try to get my echo results from my cardiologist at UC Davis as a comparison.

Some things Mommy learned today:

1.  There are three periods of fast growth that place a strain on the heart - infancy, 18 months and puberty.  I have already made it through 2 of them with little change so the next hurdle is puberty.
2.  An aortic valve replacement is not the first choice if it were to get worse.  I could be placed on blood thinners, have the valve opened by a balloon or even have the valve repaired by either shaving off the thickening around the valve or adding additional tissue to the leaflets themselves to prevents so much leakage.  Doctors don't want to cut into the chest any more than necessary and depending on how early a valve is replaced it may need to be replaced multiple times over the course of someone's life. 
3. My type of heart disease is not the kind that usually results in someone dropping dead one day like the athletes you hear about on the news.  In their cases it is one of three things:
          a.  Thickening of the heart - since I am getting echo's regularly this is
               something they are already monitoring
          b.  Irregular heart beat -  I am not any more likely to have an irregular    
               heart beat than someone who doesn't have aortic valve disease.
          c.  Unusual electric pathways - just like the irregular heart beat I am
               not any more likely to have this than anyone else
4. Mommy had previously been told that when I am having surgeries (dental extractions, distraction, etc) that I need antibiotics as a preventive measure because of my heart.  When I had the hardware removed two weeks ago they had me take antibiotics for three days and when I had it put on I had doses for a week.  Dr Mack said that is old school protocols and overkill.  I only need one dose prior to the surgery - that's it.  My tummy thanks him!

After all the stress of will I or won't I sit for the echo Mommy was so glad to have it over and done with.  It was a great visit and Dr Mack and his staff took all the time I needed to get everything done.

Peyton Nicole Smith

Sunday, May 1st, 2011

After weeks of promises to go the zoo it was finally "nice" enough today to go (if you consider nice being in the 40's, overcast and with a slight breeze)!  Even though my nose was red and my hands were a wee bit icy (and the grounds people were shoveling remaining snow off the walks) I had a great time visiting all the animals.  However, my trip to the zoo would not be complete without a ride on the train (okay two rides) and a spin on the merry-go-round (okay three spins but really whose counting?)

Peyton Nicole Smith

Friday, April 29th, 2011

It was such a fun week!  I went back to school on Monday for the first time in 3 months.  Although there were a few new faces - my two favorites - Ethan and Chloe - were still there.  Grandma Glenda told Mommy that I almost launched myself at Ethan I was so happy to see him!

On my first day back I shocked my teacher with a little bit of an attitude.  It will take a few days to get back into the swing of things but it isn't such a bad thing to shake things up a bit right?

On Friday night, all my cousins on Mommy's side got together for dinner and play time at Aunt Kristin and Uncle Lonnie's house.  Despite warnings from Dr Morales you can see in the photo above I am not holding anything back on the mini-trampoline!

Jackson loves wrestling and poor Gavin got the brunt of all his excess energy!  Jackson did slow down for a moment so Aunt Kristin could read us one of his favorite books - Mouse is Mad!

Peyton Nicole Smith