Wednesday, January 30, 2013

Food

Four simple letters F O O D.  They can strike fear into the hearts of those whose lives are touched with PWS.  At the very least, the way that we look at, think about and feel about food changes.  Honestly, some of the changes are good.  Like thinking about the nutritional value of the foods we buy and feed our family.  

The frustrating part, however, is to realize how much food is EVERYWHERE.  I do not look forward to the day that Ayden Jane feels truly hungry all day long.  She is not yet there, but just knowing that it is lurking makes me notice...

So where are we now with regards to food?  In an awesome place!!  Ayden Jane is 5.  Some kids start feeling hungry as early and 2 or 3 and I think I have read average is between 4 and 8.  (totally not sure of those numbers..)  I also know that there are some kids that hit their teens before it becomes a challenge.  That is a lot of years of 'waiting for the other shoe to drop'.  

So, for now here is a story that reminds me what a great place we are in.  We decided to make cookies to send to Kayla at Clemson.  Ayden Jane helped make the batter without even trying to take a taste.  Then a plate of cookies sat on the counter for 2 days and yet it was like they were invisible to AJ.  I know I did not do so well!  A reminder that we still have no need for locks on our pantry or refrigerator and that Ayden Jane can handle making good choices.  About the only thing she cannot resist is a banana.  We even went by the bakery and picked out special things for grandma's birthday and Ayden Jane simply asked if there was anything there she could eat.  I answered no, but you can have a banana at grandma's.  She rejoiced!

I wish things could stay this way, but I know they likely will not.  The hardest part is to remember to enjoy this time and not worry about 'some day' while at the same time, watching out and being prepared for it to come.

Tuesday, January 29, 2013

Kindergarten Plans

As we end our preschool years this spring we are already working on plans for next year.  Ayden Jane has been attending a tremendous little preschool where she has been loved and encouraged and treated just like any other child in their care.  (I consider that a compliment).  AJ has come a loooonnngggg way there.

When she entered in the 2's class she basically didn't talk until Christmas.  (she was 3 in Oct. of that year).  The teachers just kept right on talking to her and giving her opportunity to respond and generally just treated her like she had it all going on.  I assured them that we heard lots of new words and ideas at home that showed she was taking it all in.

In the 3's class she came out much more and had an awesome year.  She more than bonded with her teacher and her language skills exploded.  We fought illness all year which slowed some progress, but all in all it was awesome.

Along came this year.  Ayden Jane is now well rounded.  She has friends and does a great job socially.  She has begun to read and the number concepts are really coming.  She still really struggles with writing and I suspect she will continue to for a while, but she has time...

Ayden Jane could stay at the school she attends now for Kindergarten or we can send he to public K.  We are leaning toward public K at this time.  Ayden Jane could still use speech services, but I am not sure she will qualify for those but WOW does she need the OT there.  (who is great with her)  Ayden Jane will be in typical Kindergarten and what added support remains to be seen.  Basically, I'll be happy with an itinerant check on her from the special needs teacher and OT.  We are looking to change her classification from speech language delay to 'other health impaired'.

Anyway, I'll keep you posted as the process moves forward.   

Monday, January 21, 2013

Behavior

Disciplining a child with special needs is a challenge.  Okay, disciplining any child is a challenge!  It is hard, sometimes, to know where the lines are between what is within AJ's control and what is not.  I don't want to discipline her for things that are truly not within her control, however, I do want to be SURE to discipline those things she can control.

Next comes the communication issue.  I know that Ayden Jane has great verbal skills in a lot of ways.  Her articulation is good.  Her vocabulary is excellent.  So, why would communication be an issue?  There are a couple odd things in her communication.  First, she processes things slowly to start with, then once she is upset she basically stops processing all together and can just flip...  Secondly, she has an odd little way of telling you only things surrounding what she wants to say and expects you make the leap.  A simple example might be that she wants to wear her crocs but I start to put on her 'jump highers'.  She suddenly panics and and tells you all the reasons her jump highers aren't a good idea.  My socks will itch, miss Jen says I don't have to, the sky is falling....  At no point does she say, may I wear my Crocs?  Uggh.   I translate these things pretty well, but if you don't know where she is really going with the situation and try to say things like, I'll get your soft socks, Jen says these are the best ones ... You have now inadvertently convinced AJ that you will never allow her in the same room as her crocs and she is in a total panic.  Whew.  We are getting there.  She now settles much quicker and can repeat a good sentence with good manners asking for what she wants.  She still needs prompting, but I am hoping she can learn to use this skill on her own.  "Don't cry and tell me what you don't want.  Ask politely what you do want Mommy to do."

Now that is not exactly a behavior problem for disciplining, but you can imagine how this line of 'reasoning' works when I am actually disciplining her.

Add to that, her response to discipline can be very different.  Okay, not entirely different, however, things can escalate fast.  Hmmm.  That makes no sense.  Try this one.  I tell Ayden Jane that she needs to wear something warm because it is a cold day.  She dresses in a tank top and shorts.  With any of my other children I would simply tell them to go change.  Ayden Jane just gets it in her head that this is what she must wear today or she will in fact die.  So, to put it in perspective, I am trying to kill her because she knows that she will die if she changes clothes.  Sure, sounds funny when it is someone else's kid!

Same applies when she is doing something she shouldn't, like climbing so high that it is dangerous.  Telling her it is not a good idea or dangerous just does not compute.  She knows she is in control and invincible.  If I raise my voice or firmly say, "get down."  She will likely climb higher to prove to me that she is fine.  If I tell her we will have to go home if she does not listen and play safely she will now have a melt down at 10,000 feet.

So, how have I kept her alive this long?  You know, not let her die from changing clothes or something? I am not sure, but I know it has been exhausting.

Saturday, January 19, 2013

Play Date

Wow.  I let a whole weeks slide by!  Ayden Jane is back in the groove.  She has stayed for 'lunch buddies' twice and done great.  She is back to all therapies and school and heading to Noah's basketball games and Mckenna's soccer practices.  She is loving being on the go and still enjoying the time she gets to unwind and enjoy her toys and things at the house.  It is a great place to be!

Ayden Jane is getting really interested in coloring and trying to write.  She is holding her pencil/marker/crayon much better and more consistently in her right hand and can work on it for a long time.  She can trace well and control where the marker is drawing, but she is still not really able to look at a letter and recreate it.  I guess time will tell how big a problem this will be.  I think for now, it just takes so much brain power to hold and maneuver the marker that she can not process trying to 'decide' where to go with it to make something look a certain way.  Anyway, it is progress so I'll take it!

This afternoon we are meeting up with a friend from school.  Ayden Jane is so excited.  I have been a slack Momma and have not really done much of anything to arrange play time with friends for Ayden Jane.  About all we have done is enjoy the company of any other younger siblings that show up at the big kids sporting events.  Or, we play with whoever shows up at the playground when we are there.  Or, ride our bikes down the street to play with  a set of twins AJ's age.  This will be her first time meeting up with a specific chosen friend from school :)


Sunday, January 13, 2013

Donuts for Dads

The whole crew is back at school this week.  Therapies have restarted, Mckenna's 97 extracurricular activities are going.  Noah is back to basketball and coaching a bit of soccer on the side.  Gary is still working all that he can, and me? trying to keep everybody fed, transported and happy.

Ayden Jane surprised me a bit with her return to school.  She was 'slow'.  That little knoggin was over firing and taking forever to accomplish tasks.  Her teachers commented about how long it took her to do things.  It is hard to describe, but it's like when you talk to her she is not just hearing you she is noticing every detail around her, hearing every sound, seeing everything, feeling temps and textures, smelling every scent....  Like what you are saying is competing for her attention.  Once a day or two passed she settled in and things went much quicker.

By Friday she was back in the swing and over the moon excited about Donuts for Dads day at school.  I think it is sort of an early Father's Day sort of thing because the kids aren't in school for Father's Day.  Anyway, Ayden Jane informed me that Dad was taking her to school and I was not allowed in the car with them. Ha!  So after showing Gary around her room and the class singing a song to the Dad's she gave him the picture below.  Priceless!


If you look closely, you will see that the person she drew really was a person before she 'colored' it and she wrote her name.  Sure glad we call her AJ!!  Oh, and the PWS mom in me has to say that they go to McDonald's to play in the play land and share an iced coffee.  Not sure where the whole Chik-fil-a thing came from...  As for the hugs before work, she is always so proud of herself for making Daddy happy by giving him hugs before work and likes to give him a hug and a kiss when he goes to bed during the day to work that night.

Friday, January 11, 2013

Ayden Jane and Angels

Ayden Jane was talking in the car... as usual.  She told me about when she was born.  She said that God was there when she was born and He had an angel keep her safe a while until the sun came up.  Then He gave her to us because she needed a family to live with.  That is only a small line in the story and there were lots of details that did not make any sense (like she was born in Columbia) but as she told the story, got lost, retold... that part never changed.

It sort of give me chills.  The tone of her voice, the authority she spoke with as she said it...  She said, "it's a real story Mom.  God took care of everything."

So, what is the story of her birth as I remember it?  I was induced, but things progressed slowly.  The monitors nearly sent us in for a C-section a couple of times, but Ayden Jane always bounced back strong.  In the end she was born in the evening.

The next day she proved to get weaker, not stronger.  To me it was like she was fading away.  She was tested for sepsis and put on IV that afternoon.  That night as I slept, Ayden Jane began to crash.  She was nearly life flighted out to MUSC, but she fought hard and became stable enough to get through the night and was sent by ambulance the next morning.  Gary had been on the phone with the nurse who took care of her that night.  She was an experienced NICU nurse (Jen), although the hospital she was in had no NICU.  Jen made an angel with Ayden written on it it and put it up over her 'bed'.  When I woke up and stumbled in to check on AJ at some crazy hour I saw it.  We had intended to spell her name Aidyn and were still debating whether her middle name would be Claire or Jane.  The goal was to just make it through the night and then we could be transferred to MUSC and get the help we needed.

The next morning everything was a rush to get me discharged and AJ's paper work, including name done so we could be go to MUSC.  Gary and I just knew as we were asked how to spell her name that after Jen and her angel had spent the night with AJ that we had to spell it Ayden.  As for the middle name?  Jane means God is gracious or God's gracious gift.... now the obvious choice!

So, she was with God when she was born then He had his angel keep her safe until the sun came up.  Yep.  To me that says God was with her through the really tough long birth.  He had His angel stay with her and keep her safe all the way through the night we nearly lost her until the sun came up the day we could be transferred to MUSC.  Then God gave her to us...

Monday, January 7, 2013

Good Bye Christmas Break

Christmas break is officially over tomorrow.  It has been a great, laid back time.  We really did not do much other than hang around, go to playgrounds and let the kids all breathe.  There was a pretty good balance between seeing friends they wanted to see and spending time as a family.  I let the house go.... (to the point where I am actually excited to clean this week!)

Ayden Jane even became used to not having a busy schedule.  She typically loves to go, go, go...  We did hit playgrounds and took the dogs for walks.  We rode bikes and scooters.  She requires good, hard, big muscle play at least every other day or her little system gets a bit out of control.  It was a bit challenging with the weather being chilly and wet, but she has become immune to cold.  Every morning she asks me if it will be warm or cold.  I answer cold and she puts on shorts or tank tops....  We have gone head to head over wearing a coat and shoes which she finds totally unnecessary.  I have to admit, though, even when I am freezing she is warm to the touch.

AJ is 'helping' Kayla pack to go back to Clemson.  It is pretty hysterical.  Basically, she is withing 6 inches of Kayla at all times and talking constantly.  Kayla has given her a few missions so she feels very important to be helping with such a big kid task.  She will miss Kayla and I am sure Kayla will miss her.  Ayden Jane has it pretty well figured out how this college thing works though.  Kayla goes, but she always comes back so all is good.

We took two, nearly three full weeks off from school and therapies.  It will be a rude awakening!!  I am pretty sure Ayden Jane will get back in the swing pretty quickly.  The rest of us?  Well, it seems the business is not always as exciting as you age...

Thursday, January 3, 2013

More Labs

I can finally say Ayden Jane's labs look GREAT!!  Actually, Dr. Miller declared them PERFECT!!!

It was November a year ago when Ayden Jane's IGF-1 went through the roof from the never ending illness of last winter.  As of last August it was better but still quite out of range high so we had to reduce her dose again.  Basically, the fact that it was high just meant that AJ was not able to use the gh properly so it just sort of floated around as extra.  Not good....

Today I received her labs and her IGF-1 is well within range and we can even begin to climb back up in her dose.  Hopefully with a bump in gh she will make it possible for her to become the lean machine again.  The other improvement I am praying for is to get rid of her afternoon nap!  I know, I know, why would I want to get rid of the nap?  I am just ready!  Most days it is an argument to get her to sleep, but if I don't then by 4 or 5 she is a mess.  We have things to do!

Dr. Miller also checked several other things that I am not exactly sure why or what she was looking for, but I'll take her response of PERFECT and keep my questions to myself.  I have waited over a year for this and I am going to enjoy!


Wednesday, January 2, 2013

Photo Shoot

Each Christmas vacation for the past 4 or 5 years we have taken pictures with the 4 kids.  Nothing grand or majorly planned (as outfits will prove) but just some fun pictures of the 4 of them together.  This year we were blessed with the help of a friend (thanks Dina) and the quality of our photos is much improved!!

We loved so many of them I just couldn't wait to put some up.  Notice the One Small Step t-shirts!













Tuesday, January 1, 2013

New Year

Whew, 2012 is behind us.  There were some great times in 2012 but over all, I'd have to say it was one exhausting year.

I spent a bit of time rereading some posts from early 2012 yesterday.  I am amazed at how far AJ has come on the health front.  Wow it was a rough bottom point early in the year and a LONG recovery since.  Honestly, other than I would like for her to be a bit more lean, health wise it has been smooth sailing this past month.  (knock on wood as I am currently waiting for lab results..LOL)  On the PWS side, we literally had a chocolate cake sitting out on the table for several days.  The other kids snacked on it occasionally and Ayden Jane walked past it 100 times.  She snacked on other things right in front of it.  She was not even remotely tempted... I am so glad that last winters start of the hunger/food seeking that is bound to come with PWS is hibernating.  It just makes everything more relaxed.

Noah just began to play with his Cape Fear team at this time last year and went to the first tournament with them in Feb.  His soccer world expanded and exploded with a State and National Championship and a trip to the finals at the Disney Showcase.  He sorted through college opportunities and is excited about his choice.  He has plans for his future and is now just laying the final preparations.

Mckenna is growing up so fast.  She has discovered talent in music as well as art.  She still loves to play soccer and run.  She breezes through academically at school.  She is entering the dreaded middle school years with grace and confidence and strong sense of who she is.  She knows and loves God and has a great group of friends to tackle these years with.  It will be a joy to watch her continue to grow and mature all her gifts.

Kayla is loving college life as a Clemson student.  She has some big decisions on her horizon as she debates Medical School or PhD... route.  She has internships to plan, MCAT's to begin to prepare for...  Kayla is in that phase where as a parent I find myself more of a cheerleader than a help.  She has big dreams and I want her to chase them.  No idea where they will lead, but I pray she enjoys the journey and takes in as much experience as she can along the way.

Gary wants/needs to continue some schooling, but is not yet able as he bears the total load of our families finances.  He turns 50 this year and I want it to be a great one.  I think it is over looked sometimes what Gary has given up in the past years with Ayden Jane added to our crew.  He works as much as he can and he gives what time he has left to our kids.  He has not been involved musically as he used to often do (and loved doing).  Time for himself, like golfing just doesn't happen.  He is my support whether he wants to be or not! LOL.  I love when he has time (like this Christmas) to just hang out with our crew.  He brings such laughter and joy into the house.  Little things like playing cards until the wee hours on Christmas Eve with the 3 big kids or getting into video games with Noah.  I hope that 2013 just loosens up a bit for Gary.  Honestly in some ways Gary lost his wife for the past few years.  He is there to support me and pitch in, but I/we have not carved out time for each other.

As for me?  Time for me to find a job!  Our family needs the added income and I need to get out...  I really wanted to go back to teaching this past year, or so I thought.  In the end I am glad I did not as AJ was just not yet ready.  I am confident she will handle full day Kindergarten next year and I hope and pray it is time for my return.  I have returned to the running trail and am excited about that.  Honestly, I am just filled with hope for 2013.  I can't really explain why but it is a good feeling.  I plan to enjoy more in 2013.  Not sure what that means or will look like, but here's to a year of hope.