Sunday, April 27, 2014

A Little in Awe

We have been at this parenting business now for going on 21 years.  Let's be honest, we all start out with dreams and plans and "I'll never let my kid...."  But as you go along your 'parenting style' develops and morphs and hopefully comes out in the end not scarring your kids too badly.

Mostly, you pray for your kids and do your best to introduce them to God and what it means to have a relationship with Him.  After all, He will always be there for them.  You teach them the Bible as their guide through life.  Of course, the problem is, how they actually decide to live life is entirely up to them.  Okay, maybe not entirely, but you know what I mean.

This spring I have enjoyed conversations with my 'big kids.'  As I have listened to them talk and try to find their way through the process of becoming adults I am in awe of what God is doing in them.

Kayla just desires to use her big brain and talents to serve needy South American kids in pretty much any way she can.  She wants to care for them medically, educationally and spiritually.  Even more impressive is that she is putting her feet in motion and making it happen.  She is raising funds to spend her summer in Honduras (and not making money for next school year).  She will be stretched and used by God in so many ways. 

Noah struggled with staying at his college or transferring.  Not because he was a freshman who couldn't handle where he was, but because he felt God was calling him to study His word.  What 18 year old boy goes to college and decides after one semester that the lack of God in his daily life is just not a good plan.  He showed such courage by speaking his heart with his new coach and even expressed to him that he needed to be released because he felt he had to choose God over soccer and that to stay would be putting soccer first.  Wow.  It was hard on him and I am sure that wrestling over these decisions was lonely.  In the end, it seems God has led him to an opportunity to study His word and remain where he is.

So, sure I am proud of them both for their efforts in their studies.  I love watching them laugh together and truly enjoy being together and with their younger siblings.  I am proud of the 'good kids' they are.  As for their hearts and dreams and courage to follow God's leading in their lives?  Well, I guess I'm a little in awe.

Friday, April 25, 2014

Why Did God Make Me With Prader Willi Syndrome

Ayden Jane just accepts PWS as a part of her life.  She works hard in therapies, takes supplements, tolerates dietary restrictions, gets a daily injection and is way too comfortable in hospitals all in the name of PWS.  She doesn't remember life any other way so it has just been her normal.

Now that she is a bit older, she is realizing that other kids do not need to do all these things.  She knows there are other kids with PWS and enjoys meeting them, but none of them are close or a part of her daily life.  The realization of being different, and different in a way that makes things harder is beginning to set in.

Today she was asking about why she has to take b12 ect....  I told her because of Prader Willi Syndrome.  She then asked the question I have asked more than a few times, "why did God make me with Prader Willi Syndrome?"  I didn't really answer that question, just said that isn't it good that we have simple things like b12 to make her body work like it doesn't have Prader Willi Syndrome.  Then I let her answer the big question. 

She talked a bit about how God can make people any way he wants so why did he pick Ayden Jane to have Prader Willi Syndrome.  She talked about how she has worked hard and her back is straight and she doesn't get in trouble in school.  (yep, that random)  As she just talked out loud I realized she was not asking in an angry at God sort of way (like I have been known to do) but just out of curiosity.  In the end she just said, "Mom, I'm happy are you happy?"  Of course I said yes so she summed it all up with, "well ya can't ask for more than that, can ya."

Still loving spring break!

Wednesday, April 23, 2014

Spring Break

The fabulous news on Ayden Jane's back and the awesome time spent in Greenville was a great start to spring break.  The weather has been awesome since and Ayden Jane has already been boogie boarding and building sand castles.  The water is still way too cold for me but she does not even hesitate!

Around the house she likes to ride scooters and bikes and play on the trampoline.  The other day she wanted to ride her bike, but we remembered it is broken.  The back tire is flat and the chain keeps popping off.  Not a huge loss as it really is too small for her, but what to do next?  We have talked about buying her a new bike but it is always a little hard to know what size. 

We decided to get down an old bike that had been Noah's (and Mckenna's and a couple other kids).  It is bigger and even more striking, it is much heavier.  I cleaned it up, put down the seat, pumped up the tires and decided it was safe.  Ayden Jane was excited.  When she first took hold of it, she and the bike went tumbling over.  And I mean even before she got on!  The bulk of it was hard for her to hold and attempt to mount.  She struggled for a few minutes and I offered to help.  Her response to my offer, "Mom, just go back inside.  I'll figure it out."

So back inside I went.  When I couldn't stand it any longer I went out to check on her and she was not in sight.  Don't panic, that was a good sign.  She is allowed to ride down around the corner in the dead end cul-de-sac.  I hopped on the power wing to see how she was getting along.  She was struggling a bit to get started again but made it clear she had it under control. 

By the end of the day she was ready to venture across the neighborhood to play on the playground at her school.  What do you think?

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Tuesday, April 22, 2014

Fun in Greenville

It was a crazy road trip.  Starting with a last minute change in Noah's schedule which made it possible for him to come along.  We picked him up on our way to Shriners.  After the appointment we checked into the hotel and Kayla came and picked up Noah and they headed off to Clemson for the evening.  We hung out and swam in the pool with the Spearman's and then Ayden Jane and I went back to 'Ellie's house' and had a sleep over.  It was very cute how excited the girls were and Gwyn and I had a chance to just talk.  You know, without the little ones needing something in the middle of every conversation.

 
 
The following day we went to the zoo and played on a great playground just outside the zoo.  Here a couple of videos of my kids being .... well, my kids.  Just enjoying hanging out together and being silly.
 
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Monday, April 21, 2014

No Curve?

We made it to Shriners and headed in for our appointment.  Noah and Mckenna enjoyed the pool table up stairs after Ayden Jane gave them a quick tour.  Gary, AJ and I headed to the room to wait for .. Dr./nurse/PA?  We chatted and then headed for x-rays.  They have a really cool new scanner where AJ stood inside and held really still.  It takes x-rays of both the front and side view at the same time.  I saw the pictures as they were taken and didn't really think I saw much of a curve.

We headed back to the room to wait for the Dr. and surprise!  Therapy dogs were everywhere!  Ayden Jane loved it.  Finally, (yea, they were really busy) they came in and pulled up the x-rays.  The Dr. looked at them and said, "Basically, no curve.  You can't get x-rays better than that."  Wahoo!

I told him we had started out at 22-23 degrees.  He asked if we had casted or braced and I was very surprised when I told him neither.  I said we have just done PT, hippo therapy and swimming.  Ayden Jane piped in, "I have worked very hard so I'm not surprised..."  Dr. just said that he has no explanation as to how that reduced a 23 degree curve but to just keep doing whatever we are doing!  DEAL!

We had so much fun on the rest of our trip, but that will have to wait until I get some pictures loaded...
 

Wednesday, April 16, 2014

Medical Stuff - Made Fun

Tomorrow, bright and early, we head to Shriner's for a check on Ayden Jane's scoliosis.  As a quick review, a year and a half ago we were shocked to discover that Ayden Jane had a curve of 22 degrees.  That was not too many degrees away from casting.  We hit PT and whatever else we could think of hard.  Also, the illness from the previous winter finally had been conquered and her little body began to recover it's tone.  The next check was 6 months later and her curve had been cut in half!  It was measured at 11 or 12 degrees.  We were told to head back in another 6 months and happily things were still stable.  The doctors were very satisfied and we were told that this curve would not impact things negatively.  We were told to come back in 1 year.  That's tomorrow.

I know that most likely things are still good.  The doctors were expecting that things would remain stable and this is just a sort of check to be safe.  Knowing things in you head does not always calm the heart.  If news is as expected then great.  If news is better than expected than praise God.  If news is not great, then we will make a plan and deal with it.... like always.  I'll keep reminding myself of this for the next 24 hours...

So how do we keep Ayden Jane cool with all these medical appointments and tests and stuff?  Make it fun.  Going to Shriner's is easy because she has a friend there named Ellie.  She has been counting the days until we 'get her back checked' so she can see Ellie.  We will stay the night and go to the zoo and just have fun.  I do the same when we go to see Dr. Miller in Florida.  In truth though, Ayden Jane just loves to go on 'adventures' and is a great little traveler.

Monday, April 14, 2014

Whew!

Okay, so it has been a looooongggg while.  Life is so ridiculously busy and I wish things would slow down and let me catch up!  Oh, wait, that's what spring break will be for!  (only a few more days....)

I guess I will hit a few highlights.  First up, Ayden Jane played soccer this spring. Regular rec soccer with typical kids her age. It is not the first time she has been on a soccer team, but it feels like the first time she played soccer.  We started the season with not even being able to figure out which foot to use to kick.  She is really left footed we are pretty sure now, but the coach was trying to help her and started her off with her right.  The result was hysterical.  I am glad to say that she has figured it out and had an absolutely fabulous season.  She even scored her first goal!!  By the end of the season she was hooked and cannot wait to play again next fall.  I have to say her coach was amazing with all the kids but particularly with Ayden Jane. (Sorry no pictures as our computer is in the shop and I have no clue how to do pictures from this one:)

Next, Ayden Jane received her 3rd report card from kindergarten.  Every skill was checked off as mastered and her reading level was a level B on the Fountas and Pinnell levels.  I am told that the school wants first graders at a level C by the beginning of grade 1.  That is totally doable!  I would venture to guess we can get her to a D or E by fall.

Come back soon for more updates on Ayden Jane and for new updates on Noah, Kayla and Mckenna :)  It has been a busy month and I have only scratched the surface.