Upcoming IEP

Yep.  Time to make preparations for next school year.  As it stands, Ayden Jane receives only speech services through the school district.  She receives PT (with some OT) privately from the awesome Mrs. Jen.  I asked at the school today when we were there for speech, what the process is for us to add OT next year.

Mrs. Rogers who is her speech teacher and the director of her IEP, will start the ball rolling by contacting those in charge of evaluations....  As I understand it, there is a form that our Dr. will need complete and then she will be on the list to be tested.  Step one will be a breeze.  I have lots of Drs. that will fill out the form.  I am a little concerned about her qualifying though.

I am not really sure what skills she should or shouldn't have at this age and I am not really looking for OT because I think that we are drastically behind.  I just see her trying to get the hang of coloring and writing and needing help.  I am being proactive and do not want to wait until she is painfully behind, I want to head it off at the pass.  We will see whether this approach is considered a valid one.  I think my chances are pretty good with the PWS diagnosis and the fact that I have not 'over asked' for services thus far.  Ayden Jane has just proved to be so responsive to therapy that I know it will be time well spent.  (It doesn't hurt that I have worked as a special ed. teacher for the district either.)

Wish us luck.

Beach Day

Fun day at the beach today.  It was just Ayden Jane and I and I let her lead the way.  We made lots of sand castles, took a walk, chased sea gulls and put our feet in the COLD ocean.  The sun was bright and warm and Ayden Jane talked about when the water is warm and she can swim out in the 'deep deep' and surf.  I am already looking forward to how much fun she will have out there this summer.  I am thinking she will be up on a surf board by summer's end!  For now we will just be thankful for a sunny day in January.

Educational OT

Ayden Jane has had her OT needs taken care of through her PT.  Many kids with PWS have both OT and PT from a very early age, but Ayden Jane's fine motor skills were not really behind and Jen, our PT is also OT trained.  The biggest OT things we have needed in the past were sensory issues and Jen still serves those well.  I have been thinking the other day though, that Ayden Jane is ready to really up the time we spend on OT.  Not so much stringing beads or doing buttons and zippers, but school stuff.  She is getting a good foundation with her letters and numbers, but writing is just not going to magically happen.

I asked Jen about it Wed. during PT.  She agreed that it is something Ayden Jane is just about ready for.  My plan is to check into the process to get OT on Ayden Jane's IEP services for school next year.  So far we only do speech through the school.  If there are evaluations or things we need to do first, I would like to get them done before we go to the IEP meeting.  If need be, Jen can give an eval to support the need.

Basically, I feel like many kids learn there letters and numbers while writing them.  Ayden Jane gets frustrated trying to write them now so she just does not get the practice.  It is too much for her little neurological system to concentrate on the act of writing: the feel of the pencil, the muscles to fire, how hard to push down, how tight grip, where to move it...  I believe AJ will have to get the cognitive piece of the letters and numbers down quite well and then tackle the writing piece.

Of course, an Ipad would be awesome for teaching some of those things without such effort.  Watching what Jen had her doing with hers for a few minutes at the end of PT (after she has totally worn out AJ) was amazing. The cognitive processing...  Gary and I talked about it afterwards and we have sort of 'wished' for one before, but we are now committed to making it happen.

Next week I will get on the ball and find out what I need/can do to make the OT happen for next year.

PWS by Night

The past few days Ayden Jane has not eaten much during the day.  She has been so into playing and having fun that she has not asked for food and has even left food on her plate...

I would say this is good except that it seems to have sparked PWS by night.  She headed straight for the kitchen around 5 this morning when she woke.  Usually she comes in and crawls into bed with us between 4 and 5 and she is always very hungry for breakfast when we get up.  This morning she brought me a powerade zero (Noah's favorite) to open for her... I went to investigate.

She had helped herself to 2 zone perfect bars.  I am thinking that is not going to feel good later today and she is correct she needs to drink some liquid!!

We 'caught' her on this path before but it happened when she played hard, skipped nap and dropped off to sleep early without even eating supper.  I had no doubt she was hungry and we talked about waking Mom or Dad to help her get a good snack.

Although talking about it this time will happen too, I believe we will be installing a lock on the pantry.  I have mixed feelings about it.  In some ways it seems cruel or like caving into PWS.  We have beaten this thing in so many ways!  On the other hand, I know that I sleep like log and Ayden Jane could eat her way through the entire kitchen before I woke up.

I would talk about it more but honestly I am just too mad/sad. Sometimes I hate reality...

Dr. Mom

Ayden Jane is great in some ways, but there is definitely something still going on that I just can't get to the bottom of.  She is on her second course of antibiotic and the quantity of stuff coming out of her has significantly waned, but a nasty cough keeps lingering.  Basically, she acts perfectly normal (for her) and then 2 or 3 times a day goes into a yucky cough and brings up nasty, thick, yellow/green crud.

Not sure if we just kept killing 80 percent of the infection so this back to back courses of antibiotics will do the trick.  Or if it is a combination of constant allergy goo on top of the infection just not allowing her to clear everything or something I just haven't thought of yet.

I am taking her to a pediatric allergist/immunologist Feb. 2 to see if we can get to the root of anything triggering the problem.  Then we have our scheduled endocrinology appointment with Dr. Clark Feb. 16 so the plan is to just keep AJ on the rest of this course of antibiotic and Zyrtec until told otherwise.

I am comfortable with this plan, but not liking the old feeling of such responsibility for her medical decisions.  Primary care is not really involved at this point as we were basically told at that appointment they were not concerned.  Not really fair on my part since it was not our usual pediatrician, but I sort of just defaulted to Dr. Clark who is 2 hours away...  I will be glad when this one is solved!!

Questions

Ayden Jane is a master of the question.  We actually joke that when she grows up she will be a professional interrogator because once she hones in, there is no escape.  You will eventually just tell her what she wants to hear (if you can figure out what that is) and hope she will leave you alone!

Her questions are amazing though.  The other day she asked me, "How does God love us?"  I answered because he made us... along the lines of 'why' God loves us.  She made it very clear, though, that she meant how.  Like how do we feel God, or hear God tell us He loves us...  Harder to answer for sure.  I think she just really wanted to be able to give God a hug and feel His love squeeze her deep.

She often asks questions about when she goes to college or when she doesn't live with me anymore.  Obviously this is because Kayla is at college and we have begun the college search with Noah.  I answer her questions without limitations, but it is hard to not feel sad knowing the battles she will have to win to make those things come true.  They are just expected, almost taken for granted with the other 3.

Then there are the impossible to answer questions.  Why did God make the sky blue?  Why did L's dad die? Will you die?  When?  Will you or me die first?  Why is it dark at night? Why does my body not work with sugar? Why did God make Noah a boy and me a girl? Why are you my mom and Gary my dad? Why do we have a big family? Why is water wet? Why do we grow?  Why do we go potty? Why do you love me? How much do you love me?  How much water is in the ocean?  How much doggies are there? ...  ALL DAY LONG.

My favorite, though is when she asks questions to get what she wants.  "Mom, do you want to go to McDonald's and get a drink?  I'll come with you."  Of course we all know that what she wants are apple dippers and a chance to play on the slide.

Lately she has expanded from her immediate family with the questions.  She pinned a friend who has a 3 month old the other day.  After a few minutes I did my best to rescue the mom from the onslaught.   

Pictures

I have no idea where I am going with this post so just hang with me.

When I look at pictures of when Kayla and Noah were little or even when they were not so little and Mckenna was the little one, it seems like a whole different time.  Like a whole world away.  I was a different person.  Our future was a different picture.  Of course there were struggles, I know it wasn't a 'perfect' or even easy time of life.  Somehow life made sense though, and I guess I felt like I knew what I was doing or at least where I was headed.

Enter Ayden Jane.  First there was the shock of her not being born healthy and sent to MUSC.  As hard as all that was, I think the day I received the phone call that said her test for PWS was positive was even harder.  In that instant, my life changed forever.  This was a long haul issue. I was plunged into a world of genetics and endocrinology.  Neurology and nutrition.  PT, OT and speech.  It is a never ending challenge to push hard, but remember it is a marathon.  I can't sprint through it all.  There are times I just want to enjoy my big kids, but what about Ayden Jane...

It is a little hard for me that when I look at the old pictures from before PWS, I have such awesome memories and a feeling of joy. I guess that is the perfect word for how our house 'felt'.  It was a safe place, a joyful place filled with laughter, hopes and dreams.  Now I feel like I fight to keep things that way between the stresses that come with special needs parenting.  I look at pictures of Ayden Jane and I do see some great moments when she overcame something, but the overall feeling is of .... sadness?  That maybe too strong.  I guess more like struggle.  Oh, and don't forget to add in the worry.

I guess day to day when you are in it, you just keep plugging away and you don't notice the big picture 'feeling' around everything.  Gary has done so much to keep the laughter rolling around here.  I tend to get caught up in the fighting this PWS thing and way preoccupied.  At times it just seems like I raised the older kids in a joyful home with other great families that we had much in common with... We figured the whole parenting thing out together and we knew our mistakes would all wash out in the end.

Don't get me wrong, there are unique joys of raising a special needs child and although I know that I am not the same person, I know that in ways I am a better person.  In some ways I have lost confidence but in others I have managed to do or learn things I never would have dreamed possible.  Hopefully, all things before and after PWS will one day blend into a beautiful collage instead of a seemingly stark comparison.

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.