Tuesday, January 28, 2014

Busy, Busy ....

Things have become a little crazy around here.  Crazier than usual that is.  I am finishing up my graduate class and have jumped into a full time job.  Yep, zero to 100 in a weekend.  (that was two weeks ago)

I have to say Ayden Jane is doing great with it.  She doesn't really hurry... but she has done a great job of getting things done efficiently.  In fact, it is Mckenna that has made me late to work on occasion! 

It has been a big leap for me.  Even last fall I am not sure our little family could have handled it well.  The timing was perfect (although it was a leap of faith) and I believe it will solidify the return to full time employment for next fall. 

Oh, for those who don't really know me, I am a teacher.  I have taught special ed and regular ed but have been away from teaching since Ayden Jane was born.  The graduate course is to re certify and keep me able to teach elementary and special education.  I have to say, though, I will not return to teaching the same teacher that I left.  I was a good teacher and I believe I did a good job with all kids, but the past 6 years has taught me so much.  I hope to be a better teacher for all that I have learned raising Ayden Jane. 

Beyond all that I am looking forward to more chaos with the return of soccer season for Mckenna and Noah and maybe even Ayden Jane.  She is asking to play...  Looking forward to warmer weather and longer days and keeping Ayden Jane moving.  I am enjoying watching AJ in her swimming class and I am hopeful that we can keep the classes going. 

That all sounds so normal.  Wow, do I hope it all works out that way. 

Tuesday, January 21, 2014

So How Did My Blood Check Out?

When Ayden Jane started to gain weight so quickly and be hungry, Dr. M ordered labs.  Of course, that was before I realized my mistake with the supplements.  Anyway, Gary took AJ last Friday and they drew labs.  Ayden Jane almost enjoys this production as she gets to show off.  The girls in the lab always make a big deal about how awesome she is!

Labs came back today.  Here they are:

IGF-1 311 (42-240), IGFBP-3 5.0 (1.3-5.6)
Free T4 1.03, TSH 2.46 (both normal)
CBC normal except slightly high eosinophils again - 6.4 (0-5.0)
Insulin 7.4 (fasting normal 2.6-24.9)
Vitamin D 28.9 (30-100)
So what do they mean?  First up, Ayden Jane's IGF 1 shows a little high which goes right along with our theory of what was going on inside of her when I messed things up.  We will check it again in a month or two to be sure she is good.  Thyroid is still good.  The eosinophil count is just crazy AJ.... we can find no cause and that number is actually low for her.  Her insulin value looks great. 
Surprisingly her vitamin D was low.  I say surprising because it has never been low before.  Then again I don't think we ever checked it in January/February before!  I guess this cold, yucky winter really has kept her inside.  In the summer we supplement vitamin D with surfing!
This evening when we were just hanging out Ayden Jane said, "Oh Mom, how did my blood check out anyway?"  I went with it and we discussed her labs.  She wanted to know what we were going to do about her vitamin D level.  She asked if Dr. M told me what would be good to fix that with or if she and I needed to figure it out. 
It makes me laugh (and makes me a little sad) that Ayden Jane at age 6 knows so much about blood and supplements and nutrition and .... medical stuff.  She asks lots of questions and I just talk to her about it like it is totally normal to have such conversations.  It is surprising just how much she comprehends.  I think that being a part of all of it and understanding (as much as a 6 year old can) helps her to put up with all the extra stuff.  She knows she is on a mission to stay healthy and happy.  Sounds like a great plan to me.

Sunday, January 19, 2014

All My Fault ...

So we left off with Ayden Jane beginning to put on weight and feel hungry.  I noticed the weight gain (although I can't say it's weight gain for sure because I don't own a scale...) in the way that she looked.  There was an increase in girth around the middle and into the hips and butt.  Her shoulders seemed to be decreasing and a pear shape look was emerging.  This is very similar to what I 'see' when she either needs a bump in gh or is sick and has inflammation creating a sort of insulin resistance and not allowing her body to use the gh well.

Now, Gary and I were talking just before Christmas about how great she was looking so it was a change in a relatively short period of time.  Along with her change in shape came the change in hunger and getting tired in the afternoon.

When I noticed the change I emailed Dr. Miller to see what she thought.  She wanted labs drawn right away and we did that Friday.

Okay, background set so here is where it is all my fault.  I have given Ayden Jane D-ribose for a while now.  Honestly, I don't even remember why is did so the very first time when she was tiny, but this past summer when I saw Dr. M and we were trying to figure out how to get AJ back to where she was (internally) before she got sick.  She suggested I try slipping it in again.  It gave me the desired support (not going into that right now) so I kept it all fall.  Over Christmas I ran out of the old and began new ribose.  I knew that the scoop in it was not the same as the other one and I just never took the time to work out the details of dosing.  Arrrggghhh.

So we are now five days ribose free and from day one the hunger/crash lessened.  She is already looking better and is now full of energy all day long with no afternoon crash.  No more, "Mom I'm starving!"  Yay!

For those interested as to what we are pretty sure was going on inside little miss keep reading.  If your eyes glaze over, sorry.  Somehow the ribose was causing an insulin resistance.  Insulin resistance lowers the bodies ability to use gh.  Most likely the labs we drew will show elevated IGF 1 because the same amount of gh was going in but her ability to use it was diminished.  So on the outside I was seeing what looked like a need for more gh. 

Good news is that because we monitor AJ very closely we are getting her back on her narrow path.

Thursday, January 16, 2014

New Hope

New York Times article came out yesterday.  It was followed by an article in Forbes magazine talking further about the drug trial of beloranib in PWS.  The articles represent hope.  We pray that the research will provide insights which will lead to more answers for PWS.  I was "chatting" with a friend and she encouraged me to write this post.  There are parts that make me uncomfortable, like the idea that there is a magic formula we used with Ayden Jane that will guarantee other children the same success.  Oh how I wish it were that simple.

I have to say God is using Ayden Jane. She is the oldest of kids being fed a high fat/low carb, predominantly grain free diet from the start and supplemented aggressively like her. Their little brains are growing.  It is definitely not a cure for all things.  Speech, cognition, neurological development, anxiety are among the things PWS effects, but improvements are being noted. Many kids are even in regular preschools and are functioning typically. To know that God led us down an entirely radical path in the way we treated AJ within her first year without even knowing it was radical and preserved and grew her little brain is humbling. The joy of hearing stories of other kiddos making gains doing as great or even better is unexplainable.  I am hooked on these little ones with PWS and I haven't even met most of them.  My heart aches for all of them when they struggle and soars with joy as if they were my own when they smile.
Add to all of that the research coming out that could free Ayden Jane and her friends from the chains of living a life feeling hungry. It opens up the possibilities of going to college, living without constant supervision, being able to go to social events where food is EVERYWHERE and not feeling like a drop down alcoholic trying not to take that first sip.  (And this is an understatement of how hard it would be)

The discipline with which she must live her life is astounding and God has given her a will of steel (is there a metal stronger than steel? then that one) We meet each challenge head on.
Ayden Jane knows God. She is rock solid in her heart knowledge of Him and feels His presence always. Where else could that confidence come from anyway?

I don't know what is next for us, but I do know Ayden Jane is His to use. Her life is His to guide.  I venture to say she  is a beacon of hope to many families who live with PWS and a reflection of God to everyone who knows her.

Saturday, January 11, 2014

Mom, I'm Starving

Okay, so what mom hasn't heard the words "Mom, I'm starving" from their kids.  Most kids do have a flare for the dramatic!  But what happens inside a mom whose child with PWS utters those words is ... hard to describe. 

First there is shear panic.  This is it!  Life as we know it has come to an end.  If I take my eye off her for 2 seconds she will eat the entire pantry!  She is going to wake up tomorrow and cry for food all day long and I will have to choose between the pain of listening to her cry or allowing her to over eat and harm herself.  (I think it is hard not to stay at this point for a while...)

Next there is a breakthrough of rational thought where you realize that you might make it through the week however, it is going to require a new plan.

New plan helps both mom and daughter, but does not take the hunger away.

Finally, you realize that it is time to tell your sweet kiddo to get used to the feeling, because her body is tricky. 

Well, that's how it's gone for us this week.  Now, I will say that I have not heard Ayden Jane say that she is hungry with any sort of passion before.  Yes, she will say that she is hungry, but I look at the clock and think, well of course you are!  The past couple of days at about the same time Ayden Jane has been sure the world was going to come to an end if she did not get a snack.

Once my panic subsided.  (okay, once I gathered the strength to throw the panic out the window)  I realized that over Christmas we had a great eating schedule.  Breakfast around 8:30, lunch around 12:30 or 1, a snack at maybe 3 or so and supper whenever.  (or not at all even)  Back in school breakfast comes early, but lunch is at 10:50!  So, when AJ gets home from school she wants to snack until supper!  Today, when we took a walk, I talked to AJ.  I told her that part of PWS is that her brain will try to trick her and tell her she is hungry when she doesn't really need food and if she listens she will not be healthy. 

Let me just interrupt here to say that Ayden Jane never ceases to amaze me.  Her response was not to argue or complain.  In fact, I think she already knew that she was feeling hungry when she really wasn't because she almost seemed relieved to hear it. She said, "Oh, so that's why you say no sometimes when I feel hungry.  Okay, we will work on it." Then she just asked how she will know when to listen when her body says she is hungry.  Seriously?  That is the question a 6 year old asks when they discover that they will feel like they are starving sometimes and not be allowed to eat?

Next, she just wanted to make a plan.  Plans are good.  I told her that she could have a snack when she got home from school but then that was it until supper.  No asking for anything else and that way I can get supper ready and we can all enjoy eating together.

We will see how that goes next week, but I am changing her world next week as I temporarily go back to work full-time!  Wow do I have some ducks to get in a row this weekend!!

Wednesday, January 8, 2014

Returning to the Routine

School started back this week.  Well, sort of... We have had delays in the morning due to cold so the days have been short and the sleeping in continues.  It has basically just been a really strange way to return to the routine. 

I am running into a late afternoon crash with Ayden Jane.  She gets tired, or at least feels out of fuel.  This makes her sure she is hungry.  Yesterday I just said no and sent her to her room when she chose to cry about waiting for 20 min. for supper until the boys were picked up and I had a chance to get it together.  I knew she wasn't really hungry, just tired.  Sure enough she fell asleep for 2 hours!  She wasn't really even hungry when she woke up.  (but of course was wide awake and then stayed up way too late)

Today we ran into the afternoon crash and she wanted to snack her way through staying awake.  FRUSTRATING!!  I had circles to drive around PI to play taxi driver with Mckenna so she hit up Gary for soup right after I left.  I had already given her a cup of nuts.  It's not that in the end she has over eaten, it's the annoying lack of patience and ability to go find something to play.  The attempts to draw me into negotiations drive me crazy because they are basically just a power struggle and plea for attention.

Ayden Jane was very happy with 8:30 breakfast, 12:30 lunch and 6 pm supper over break. (those are flexible times, but seemed to make her run smoothly)  Suddenly breakfast is back to 6:30, lunch 10:50 and so she is honestly ready for supper at 4:30.  I keep trying to have her snack after school to hold her so we can push supper back until closer to 5:30 but it didn't really work before Christmas so I am not sure why I think it will work now.

Hopefully, I will get my act together tomorrow and be able to give her a definite we will have ________ for supper and have it ready by 4:30. I guess I also underestimate how tiring school is for her.  Not physically but mentally. It is funny how if I do supper early like that she really doesn't care if she does not eat again until 6:30 the next morning! 

Well, time to go get my act together for tomorrow!

Saturday, January 4, 2014

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!! 

Wednesday, January 1, 2014

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.