Christmas Break

We are nearing the end of Christmas Break.  It has been 2 weeks of no school, no therapies and lots of family time.  It was a needed break.  I have been reminded that, to some extent, Ayden Jane needs (and I mean NEEDS) lots of activity.  The early part of break the weather was great and we were able to take walks on the beach, ride scooters and bikes and play on the swings.  Then the rains came... then it got cold.

On a random day Ayden Jane loves to have hours to play with her toys by herself and get in her zone.  When her need for good hard play has not been met she really struggles to play this way.  Let's see if I can explain with an example.  Ayden Jane was climbing on me, needing me for things she typically wants to do by herself, knocking things over and bumping into things, whiny, a bit emotional and even asking for food on Thursday.  I recognized the need, but really was not sure what to do about it.  Friday it continued and she was sucking up everyone's time so I took her to the Fun Warehouse where they have a big play structure and bouncy's.  She was better, but it was still a struggle. 

Saturday we did a few things around the house in the morning and then Noah took her out to lunch.  Once back she and I went for a decent walk and then Noah took her swimming and worked her hard!  When they got back Kayla and I took AJ to Michaels with us.  She was silly and happy and fun.  Oh the belly laughs in the back seat as she was telling jokes teasing Kayla.  We got back and AJ was still going strong at 9 pm!  We headed to Grandma's to watch the Clemson game and she was great.  Eventually curled up and went to sleep on the sofa.  She was not even bothered when we woke her up at midnight to come home.

This morning she is calmly, happily playing with her new Christmas baby.  She is just running smoothly and is in total control of herself both physically and emotionally.  The storm within is calmed.

So, although the break from her busy life was great and a blessing, it will also be a good thing for her to head to back to her busy life on Monday.  Oh! and she starts a weekly swimming class.  Woo Hoo!! 

Out with 2013 In with 2014

We will definitely remember 2013.  Let's see:

Kayla is now a junior at Clemson.  The past year was not too full of big surprises or decisions for her.  It has begun the process of answering the question of what will I do after Clemson?  Otherwise known as what do I want to be when I grow up.  I imagine this time next year will hold some answers to those questions.  We pray for her this year that she will continue to keep her heart open to God and will hear his voice of direction in her life... even if it is only a whisper of what her next step should be.  We pray for her to have the courage to follow His voice and that Gary and I will be able to help support her in any way necessary.

Noah has now completed his first semester as a college student.  This year was filled with decisions and life changes for him.  He has done a great job of transitioning from a high school kid to a college young man.  The next year for him will be about discovering just how far he can go.  His coach is challenging him athletically and in his leadership abilities.  He is getting more focused academically both in his grades and direction.  We pray for him this year that he feels God's presence and relies on Him when his limits are being pushed.  That he will find young men like minded in faith at his school and continue to study God's Word.

Mckenna has/is turning into a teenager in front of our eyes.  She has gotten the hang of middle school and is ready to hit her stride.  We pray for her to grow in confidence.  That she will know the talents God has blessed her with and learn to develop and use them for His glory.  We also pray God's protection for her as middle school is not often kind, that she will work her way through this year with grace and kindness to others that show's God's love to all.

Ayden Jane spent her year doing lots of things that she was not supposed to be able to do.  I think that she will spend 2014 in a similar fashion!  We pray for her to find activities that she loves as activity is not really an option or luxury for her but a necessity.  Things like swimming, running and biking will hopefully be things she loves to do and then she can train for a triathlon!  How cool would that be?  We pray that academically she can continue to keep pace with her peers and that we can find the solution needed to help her get her hands writing efficiently.

For me, the year has hopefully been my last as a full time mom for a while.  Not because I don't enjoy it, but because it is time to take some of the financial responsibility off Gary so he can be around more.  I pray for my schooling to finish up and for the right job to come my way.  A prayer that all I have learned for the past 6 years being the mom of a special needs kiddo can be used.

Gary spent 2013 working.  Then ended painfully with the loss of his mom. He has put aside a lot and missed a lot to keep us afloat.  I pray that for him 2014 offers more time to enjoy what he wants to enjoy, more time to spend with his kiddo's (and me!), time to pursue career goals, time to get back into singing and ministry at church, time to live.

So, not exactly resolutions, but hopes and dreams for 2014.  May they all come true.

Grandma and Grandpa G

Christmas 2013 is done.  It was great, but .... complicated.  Sunday, December 15 we got the call that Gary's mom passed away.  It was a shock and we knew Gary had to head to TX.  We did not want him driving it, or going through it all alone so Kayla went with him.  Noah and Mckenna stayed behind with me as Ayden Jane had so much pre Christmas stuff to do and my parents had an upcoming wedding anniversary that I needed to help get my Dad to ...  It was a very complicated week.  (trust me, I am skipping a lot)

Gary spoke at his mom's funeral and I would have loved to be there....  It was small, mostly just family and not a dry eye in the place.  He got to spend lots of time with his dad because they went out early and Kayla spent some time with her cousins.

When I told Ayden Jane that her Grandma G died, at first she was a bit speechless.  (that never happens!)  Then I told her that Grandma G was in heaven with Jesus and her expression just relaxed.  Then she told me, "It's okay Mom, I will still make pictures for her and send them to Grandpa G.  Then he can take them to her when he goes to heaven."  We talked a bit and I told her that Grandpa did miss her and she decided that she would draw him pictures of Grandma so he wouldn't miss her so much.  The kid has a solution for everything.

Today (2 weeks later) I was on the sofa talking to Noah.  Ayden Jane came over and out of no where she asked when we can go see Grandpa G.  I told her that it is a long way but we will plan a trip when we can.  She asked again, but when.  I told her that Daddy is working on it and she can ask him when he wakes up.  She burst into tears and said, "but I want to go see him before he dies like Grandma G."  Wow, guess she has been holding that in a while! 

Typical Kindergartener

Yesterday I had to go out of town for a few hours. Noah was in charge starting about 1:30 for PT and had her until about 6 pm.  In Ayden Jane's terminology it was a Noah day.  She loved it.  Noah helped out with PT and then took Ayden Jane to soccer with him.  He wanted to play pick up but wasn't sure how she would hang.  Apparently she was awesome.  Afterwards he took her to a local pizza and sub shop where he got her the special supper he designed for her last summer, (he works there) a meatball, grilled onions, peppers and cheese.  I was back at about 6 and AJ was in the bath tub chatting away and happy as a clam.  She finished up and wanted Noah to help her get dressed because he had promised they could take the dogs for a walk.  What a great brother!  He was technically off duty, but humored her and away they went.

When I asked him how AJ was he said she was great for him.  That she is so easy to take anywhere.   I'd have to agree with him.  She has been so incredibly easy lately.  Her brain is thinking clearly and quickly.  Her energy is way up.  Seemingly no afternoon lull.

Today I went to Ayden Jane's Christmas party at school.  I wasn't really planning on it but they decided to have a pizza party and Ayden Jane wanted me to make pizza she could eat it with her friends...  How do you say no to that??

While there, I watched her completely fit in.  I know that sounds like a strange thing to say (unless, of course you have a kiddo with some extra stuff going on) but a friend called her over to meet her little brother, she chatted with the other kids, she moved about the classroom with ease, she picked up the juice box she knew she could not have and gave it back to the room mom saying with a grin,  "you know I can't have this.  What were you thinking?" 

A couple of her friends passed out goody bags with candy and she brought them over to me.  She pointed to the different candies and decided which ones each of her siblings would get.  Just thrilled to have something to give them and not even a thought or care about eating them. 

The chaos of 23 students filled with Christmas excitement was not even the slightest issue for her.  You have no idea how that blows my mind.  This kid just keeps defying all the odds and she doesn't even know it :)  She is just being a typical Kindergartener...
 

Life is not just PWS

So I really do my best to keep this blog about Ayden Jane and PWS because, well, that's it's intent.  Hopefully, there is some benefit to some family along the way who has taken time to read.  Life, however, is not solely about PWS. 

As we navigate and worry about all things PWS related, other stuff happens too.  Our kids have been blessed to have four grandparents who love them dearly.  They pray for them and spoil them.  Their lives are tremendous examples of how to live and love.  Combined they add up to about 120 years of marriage!! 

On my side, my father is a fair ways down the Alzheimer's path.  It is rough road with many casualties.  His health is okay but his life is frustrating.  He is a Marine.  He was a very successful business man.  He was the guy in charge and he commanded respect just by his demeanor.  He was a numbers guy.  He was an athlete.  Inside he is still all those things but he now lives in a very uncooperative body as his mobility is failing him.  The connections in his brain from the disease makes communication very hard.  My mom shows the meaning of commitment and love rolled into one with how she cares for him.  I know that her heart breaks daily for him and that she must miss him terribly even though he is right in front of her. 

Gary's mom passed away this past weekend at age 84.  She and his dad, if you include dating, had been together for 72 years!  They still held hands as though they had only been dating a short time and they laughed constantly.  She was not in great health, but it was still a sudden loss.  He was serving her breakfast when she had a heart attack.  A short time later in the ICU she was gone.

So this Christmas season we will say goodbye to Grandma G here on earth but rest in the knowledge that she has a new, healthy body as she dances in Heaven.  Gary will travel to TX for the services and speak as his Mom requested.  I will stay here and enjoy my parents 57th anniversary with them, with dinner followed by a candle light service at church.

They have truly left a legacy of love and commitment and family for Gary and I and for all four of our kids to witness.  We are blessed.

Christmas is Coming!

So what it Santa bringing Ayden Jane for Christmas?  We have a pretty good handle on things...

First up, she has asked Santa for an American Girl doll.  Ummmm.  Way too expensive for us, but a friend was looking for a new home for one that her much older girls no longer want.  Sweet!

Next, something for our little reader.  Ayden Jane has loved learning to read and we have used the Bob Books to get her started.  She is now able read all of the first box so she will get the next set.  Also, she is struggling a little with rhyming words and there is a set of books to work specifically on rhyming so those are headed our way too.  Anyone looking for a way to introduce reading to their little ones can't go wrong with the Bob Books.  All 4 of my kids loved them.  Well, loved learning to read with them.

Ayden Jane does enjoy popping beads together and building things so we decided it was time to upgrade the few things she has like that.  We chose not to go the lego route and instead go with  Zoobs. We got the giant bucket so she can build with her friends C and C :)  I can't wait to see the crazy things they all come up with.

Since we live in SC and the weather is good for outdoor fun most of the year I always like to get outdoor toys for the kids.  Ayden Jane has actually used her little scooter so much that she has worn it out, so a new razor scooter will arrive with flashing wheels!  That should be fun on dark winter evenings.  Not to mention safer!

There will be a few other things along the way but I am thinking Santa is off to a good start.  It is always interesting to balance getting toys that are just for fun and getting the therapy type things we could use.  I know that AJ will be ready for a new bike soon, but I think she needs to put a bit more effort into riding her current bike.  Since we can get outside so much of the year we have not gone to the Kinect type system.  I know that some of our PWS friends to the north use them a lot to keep the kids moving. 

I am noticing that Ayden Jane needs more activity in her day.  Luckily she likes to walk and I think running is in her future.  It is hard, though when school takes up a large part of the day and then it gets dark so early.  I look forward to when she can get further involved in a swimming program and things like that.  (yes, I just get tired of doing all her exercise with her:)  She is so close!


 

Silly AJ

Ayden Jane is still on Augmentin for an upper respiratory infection.  What happens to this kiddo when she is sick is a little crazy.  Basically, she started the Augmentin on Monday after showing her telltale signs of illness the previous weekend after 2 weeks of congestion.  Tuesday did not show much difference.  Wednesday was a meltdown of epic proportions.

I got a call from the school nurse.  She had Ayden Jane in her office complaining of a headache.  Her temp was 99, ears looked good...  I told her that she had been on antibiotic since Monday and I would be picking her up soon anyway (PT day) so just let her go back to class and I will get there.  I arrived and peeked in the window.  Ayden Jane was playing with some blocks and seemed fine.  Once we cleaned up and grabbed her things I touched her.  Holy cow she was roasting!  Of course she had decided to wear a sweater and the weather turned hot...  Didn't occur to her to take off the sweater! 

We got home and I asked her to take off the sweater to cool off for a few minutes while she had a snack before PT.  You would have thought that I shot her!!  It was a fight I had to pick because she needed to cool down.  She does not have temperature regulation issues typically (many kids with PWS do) but I think her body was just working so hard to fight off the infection and the added sweater on a 60+ degree day was just overheating her.  She refused her snack and argued and cried for nearly an hour!  Luckily it was a 90 day evaluation day which meant that mostly Jen and I just needed to chat.  Eventually she ate a few bites and then fell sound asleep for 2 hours.  When she woke up she was cool and fine...

She finished out the week gaining a bit of steam each day.  Fast forward to today and she is a whole new kiddo!  She dictated one of our super long walks and she was cracking me up the entire way.  She was funny and conversational.  I love when her wit shines through.  When we got back I sat down and had a drink.  She came over next to me and asked for a sip.  I gave it to her and she informed me there wasn't much left.... That was a hint that she was going to finish it off.  She asked what I was going to do if she didn't give it back.  I said I would sit on her.  She giggled and said that if I sat on her she would die and I didn't want her to be dead right?  So I should go get my own darn drink out of the fridge.  Ha!  That was my own darn drink!

It is good to have her heading back to full steam. 

I have to say, on the sad side, her belly is definitely distended.  Her gut gets so stinking thrown off by the antibiotics but they will be done soon.  Hopefully I can get that belly back on track soon.