Busy Family

Before I forget, here are couple of Ayden Jane phrases.  When the dog comes by while she's eating she will say, "Sadie's eyein' on my food".  Another favorite is when she is in the car seat and getting sleepy.  She will tell me, "Mom, I'm just gonna warm my head up.  Okay?"  What does that mean you say?  It means she is tired, but refusing to admit it.  She is going to just lean her head against the side of her car seat which in her mind is, 'just warming up her head'.  See?  Makes perfect sense.

This week everything gets back in full swing.  We will be heading to Mckenna's soccer practice Mon. and Thurs.  Ayden Jane loves this because the fields have a great playground.  Noah still has a couple of High School basketball games a week which will just turn into soccer games at season's end and Ayden Jane has ST, PT and horseback riding.

For now, I am still working Tue. and Thurs., although that only goes for a few more weeks.  (I have some other things in the works but I'm not talking yet)  A few more weeks and we can add Gary coaching JV soccer along with his regular work schedule and me getting back on the running trail.   Activity, activity, activity....

Improving

Today was day 3 of antibiotic/steroid meds and pushing liquid.  Crazy how much crud is in her.  Good news?  Ayden Jane has learned to cough productively.  Sad to listen to, and disgusting as she gets it out, but we will count it as good news.

After she woke up from her late nap today she was hilarious.  It was a house full as Noah and a friend were watching football and Mckenna and a friend were having a nerf gun war.  Ayden Jane was sitting on a chair sipping out of her new cup (part of the push for liquids).  She was doing her best to be the center of attention by being loud and goofy and teasing Noah.  So glad to 'have her back'.  (and detached from me)

Ayden Jane was doing her best teenager interpretation.  I started to list the phrases, but they are just not funny without the teenage attitude that goes with them!  Just pretend you are a teen and use the words: whatever, really? dude, seriously.... now picture a 4 year old talking like that to two 17 year old boys.  That's as close a picture as I can paint!  Oh, don't forget the nerf darts flying past...

I am planning to start giving Ayden Jane Zyrtec.  I am not excited about it.  It tends to cause drowsiness, not a great plan for PWS and it is one MORE thing I will be pumping into her system.  Uggg.  I just don't really see any other options at the moment.  I am making an appointment with an allergist for more ideas in the future, but at the recommendation of Dr. Clark, we will give Zyrtec a try while I wait.

Okay, enough of the sick, medical... blogs.  Next one is going to be, well, not medical.  Enough already.

PWS Sucks

I know that this is not a new revelation for many of you.  It is not a new revelation to me either, it was just one of those days where I was reminded of it loud and clear.

I'll start with Ayden Jane getting thick and cruddy with a nasty cough.  Of course, along with this we get, "I'm hungry" 900 times a day and a panicky sort of personality.  Throw in a 0.05 second attention span, a dose of clingy I must climb on mom and a dash of "what?'  (not sure if she just can't slow down enough to understand or is so clogged she can't hear)  Other than the cough, not your typical sick kid signs.

Jump to last Monday.  I had her labs drawn to rerun because I just had that Mom feeling that we were headed for trouble.  I got them back this morning just after I made an appointment at her pediatrician.  Her IGF 1 is still out of range, but the other stuff makes that sort of an invalid number because it basically says she is sick!  Last Monday her white cell count was out of range high already.  There are some other numbers I am trying to get to the bottom of...  I am so blessed to have 2 great pediatric endocrinologists guiding me.  Looks like I will being adding an allergist at their suggestion.

So, Gary took AJ to the pediatrician.  Our regular one was not in so he saw someone new.  She said that with no fever and no other typical signs of infection she "was comfortable with not giving her any medication."  Excuse me???  She gave Gary a script to do an x-ray if he was concerned about pneumonia and mentioned there might be a slight something in one lobe...  She also mentioned that we have been fighting this a long time...  Luckily, Dr. Clark had already told me from the labs and history that she wanted AJ on antibiotics and steroid today so if we had any trouble to call her back.  Did I mention how awesome she is?

So, the fact that Ayden Jane is special needs (which means NOT typical) means that her reactions to things are different.  She is not just low tone or delayed...  She is way different on the inside and a little problem causes a cascade of trouble which takes a looooonnnngggg time to correct.  No, we cannot take a wait and see approach thank you.

As of tonight, meds are in her thanks to Dr. Clark and I am confident that I am learning how to read her signs of illness correctly.  As for what's next?  First, get through this one as best as possible.  Second, we will try zyrtec for allergies as it was magic for Noah and suggested by Dr. Clark.  Hopefully it will not have the drowsiness side effect.  Third, get an allergist on board if necessary to get her eosonophils?  something like that, back on track.  From my understanding they are fairly high and signal her body is reacting to something...  Oh, I have so much yet to learn...

Through it all Ayden Jane is goofy and happy.  (Demanding, but happy)  She had some hysterical lines tonight as she continues to be quite the comedian and has a flair for words.  I promise I will start writing them down as she says them because I can never remember when I get to sit down and blog!

Gerald and the Cricket

One of Ayden Jane's favorite books (and mine) is Giraffes Can't Dance.  It is beautifully illustrated and is a poem which is really fun to read aloud.  Basically, Gerald (the giraffe) is clumsy and awkward and can't participate in the jungle dance.  The other animals make fun of him....  That is UNTIL:

"Excuse me!" coughed a cricket
who'd seen Gerald earlier on.
"But sometimes when your different
you just need a different song"

At the end of the book Gerald has found his own dancing ability and is happy...

Then he raised his head and looked up
at the moon and stars above.
"We all can dance," he said,
"when we find music that we love."

Ayden Jane really feels for Gerald.  She worries about him being sad every time we read the book.  You know, like maybe this time he won't 'find his different song'.  LOL  I love watching her as we go through the book as her expression follows right along with what Gerald is feeling and her eyes light up every time when things turn around for him.

In the end, I find myself applauding the cricket and praying that in those moments through Ayden Jane's life when her differences are declared 'weird' and she has trouble sorting it all out, there will be a nearby cricket.

First Big Girl Bike Ride

Ayden Jane got a 'big girl bike' for Christmas.  She has been riding a cool little bike for some time so we knew she could pedal, but something about the bigger bike... She has been a little shy about trying to ride it, but when Mrs. Jen came today for PT it was time to hop on.

Here is the result!  Yep, it took about 2 minutes...

Enthusiasm

Enthusiasm.  Ayden Jane has gobs of it!  It is so much fun to be around her excitement for .... everything!  When opening Christmas presents she jumps up and down declaring everything just what she always wanted.  She asks what we have to do today and whatever it is she gets excited about it.  Grocery shopping, "yippee!"  Therapy, "Hooray!"  Go to a playground, "Thanks Mom for taking me to the playground."  A bubble bath, a few stickers, 2 dark chocolate chips, any sibling comes home, completing a puzzle or building a tower, a new toothbrush, going to school, doing anything with Sadie (the dog), a few minutes of wrestling... Everything is just met with such excitement and appreciation.  Everything it BIG.

It is fun to watch and a bit overwhelming at times.  The overwhelming part comes when things are met with the same passion but on the disappointing side.  The total heart wrenching tragedy when a feat cannot be accomplished.  The excruciating pain of the word, no spoken from Mom or Dad.

I am happy to say that most days we live in the blessing of her enthusiasm.  There is a spirit of happiness and just plain fun about her.  May the passion inside her always be close to the surface.  I find it a great quality.  I remember Noah being a bit the same way as a little guy.  Just a huge heart, bundles of energy and a zest for life.  I'm not sure where along the way we learn to dial it all back, but I think we all could use to allow a bit of passion for what excites us pour out more often.  

Healthy New Year

So I have not updated on how the illness of Oct. - Nov. has played out.  Ayden Jane has continued to recover and even just this morning as she was running around nakey while changing clothes  (she would still love to live in a nudest colony) Gary just looked at her and remarked on how totally different her 'shape' is.  The belly was flat and the muscles are again noticeable.  Her attitude is great and she is so stinkin' funny and quick witted!  (I will get to that).  She can again walk past food and not care, she leaves food on her plate at meals and when she asks for snacks, it is usually past time for one!  She has soooo much energy I feel like we spend our days trying to provide enough activity to satisfy her.  She is sleeping well, dry through the night and pretty easy going.  Oh how I hope things stay this way!!!

So, what have I learned?  First of all, after reviewing past illness... I have come to a few conclusions:

1.  Ayden Jane mounts a pretty typical response to viral illness.  She has fever, aches or pain...  Her body knows it is under assault and can fight back pretty well.

2.  She does not respond typically to bacterial infection.  No fever, no complaints of pain, just gradually starts to act unlike herself.  I now know for sure that there will not be typical signs when infection is involved and will not wait!  Also, because she does not respond properly to infection, we will add steroids when antibiotics are warranted.

3.  Ayden Jane has seasonal allergies.  Not a shocker with family histories and not really bad allergies.  Just enough that she gets congested, cannot clear it and it turns bacterial.  She also had a patch of extremely dry skin, possibly eczema.  We started her on an antihistamine and it seems to be doing the trick as she has stayed slightly congested through the month of Dec., but it is staying clear and she is getting healthier.

Here is to a healthy New Year.