Look Out, Here Comes August

So as I sit here on nearly the last day of July peeking at the August Calendar it hits me.  Summer is ending fast!!!

August 6 Kayla gets home from Honduras.  Hooray!!  Can't wait to hear the stories of her adventures there.  I think in ten weeks she was able to get a true feel for the place, get bored a few times, build some great relationships, use lots of Spanish, get very attached to cute kiddos, enjoy some vacationing, totally rest her mind from school, learn to appreciate a much slower pace.... oh so many things!

August 13 Noah heads back to Coker College.  He is less than excited.  Preseason soccer in August in SC is going to be pretty brutal.  He has a great room mate set up and is happy to go see friends and start the actual soccer season.  Hopefully the transition to a new coach will go smoothly and the season will be a great one.

August 17 Kayla goes back to Clemson for her senior year!!  I can't believe she will be graduating from college in the spring.  Wow, time flies.  Hoping she has a great senior year and enjoys every minute of it.

August 20 Mckenna and Ayden Jane head back to school.  Mckenna to 8th grade and Ayden Jane to first grade.  Both are returning to the same schools they were in last year but the new school year who will I have for a teacher, who will be in my class excitement is building.

As for me?  I do not yet have a contract to return to teaching but I trusting God to pull that one together for me in his timing.

Well, Gary is working hard on the grill after hours at the beach and the pool, so at least summer isn't over quite yet!!  I am going to enjoy this summer right up to the wire.  This one has flown and I am not quite ready to trade bathing suits for new school clothes or bare feet for school shoes just yet!

Just a Typical Kiddo

Lately Ayden Jane has been in some settings where she is playing with kids around her age that we don't really know.  I am way better at just staying back and letting her figure it out.  It's a little embarrassing to admit, but as Ayden Jane ventured into social situations when she was younger I would often get embarrassed for her or worry about her getting her feelings hurt.  I didn't give her much credit (or the other kids for that matter).  I almost had to either not watch or run interference.  The whole experience would make me uncomfortable.

This summer Ayden Jane has had lots of experience in settings where she joined a group of kids playing.  Swim team was one of them.  I did tell the coaches at the end of the summer how great swimming has been for Ayden Jane and clued them into some of her challenges developing muscle and with motor planning.  That was basically because I wanted them to know how much they have helped her.  The other kids know nothing.  They just accept her for who she is and she has made a good friend a year older.  They both want to swim year round together.

Then this week at the neighborhood pool Ayden Jane joined 3 kids playing with their uncle.  Since we live in a resort area, there are often kids we do not know at the pool.  Ayden Jane struggled to understand the game they were playing and she did not do a great job maintaining personal space with the uncle, but I just let her do her thing.  It struck me that in the past I would have looked at her awkward attempts and been uncomfortable but now I just let her go for it.  She does figure it out and fit in before it is all said and done.  She is kind and tries hard and that's really all the other kids need to find a way to get her in on the games.

Last night there were 2 of her friends as part of a big group of kids playing sharks n minnows in the deep end.  Maybe 10 kids total.  Ayden Jane joined right in (she was close to the youngest) and took her turn being shark when tagged with no complaints.  It took a few extra explanations of this particular groups variation of the game, but she got it.  She swam and played with the pack for two hours!!  One of the boys (2 years older) even attempted to teach her how to do a flip into the water.  It was very cute.  He is the youngest of 3 and was totally enjoying being the big kid teaching AJ a cool trick. 

Now I am not saying that there are no differences between Ayden Jane's social skills and the other kids.  I think, though, that her social skills are better than I give her credit for at times.  She is just a bold spirit so she will speak up when I would shy away.  She will ask questions if she doesn't understand even if it has already been explained.  Then other times, she just feels like playing by herself and will choose not to play with others and disappear into her imagination.

So, I have been doing some of my best parenting this summer by letting her stretch her wings by playing with whoever she wants, or not.  Letting her find her way into the packs of kids.  Mom has been on the sideline watching Ayden Jane grow up!

Summer Swim - Season 1

So last summer we tried to teach Ayden Jane the backstroke.  She was convinced she could do it but honestly, she just moved her arms the same as you do for freestyle, only she was on her back.  As in, she was rotating her arms forward and as hard as we tried she just couldn't make her arms go in circles backwards for more than a turn or two.  It was pretty comical...

This summer Ayden Jane was a little bigger, a little stronger and a little more coordinated.  She worked on freestyle, learned the backstroke and is on her way to learning the breaststroke. 

Even more awesome is that Jen (PT) has been really impressed with Ayden Jane's gains overall since she has been swimming.  In fact, we are cutting back PT to once a month maintenance in the fall!!  That is a huge step as she has had Jen by her side weekly since she was 5 months old.  Jen taught her to crawl, walk, jump, climb, ride a bike .... so many things.  She has also kept a close eye on her scoliosis and helped reduce it from 23 degrees to straight!! She has managed orthotics and the crazy internally rotating hip and a host of other little things that she caught so early that she fixed them right up. Honestly, I am a bit nervous letting her go!!!

I have appreciated her approach to PT.  Once we hit the major developmental milestones, she made transitioning to community sports and activities the goal.  As the video of her swimming and the soccer season she had last spring attest to.  She is successfully participating in community based sports with her peers.

So glad she will keep us on as a consult and keep her eye that knows Ayden Jane so well on her once a month.  She has truly been amazing as a therapist and friend and never looked at Ayden Jane as a kiddo with limits.  Luckily, our girls are the same age and I will be able to cheer on her super star athletes and Ayden Jane will have a built in cheering section for whatever she does.

Conversations with AJ

So after AJs experience with the sugared drink she has had lots of questions... 
I know, shocking.

AJ:  are fake sugars bad for me?

Me: yes

AJ: but sometimes you let me drink things with fake sugar and they don't
give me a headache or suck up my energy or make me hungry. So why are they bad
for me?

Me:  a lame attempt to explain that just because they don't crash her system
they are still not good.

AJ:  what would dr miller say if I told her I drank fake sugar. Like had a diet
coke.

Me:  she would say diet coke and other drinks with fake sugar are bad for you
and you should drink water.

AJ:  but I hate water and fake sugars don't make me feel awful. What exactly do
they do on the inside that's bad for me

Me:  it's hard to explain.

AJ:  Well can you please ask Dr Miller to explain it to me so I can understand!

We did in fact ask Dr. Miller because no matter what I said it was not what she wanted to hear so it was deemed incorrect because, after all, I am just a mom.  AJ was less than thrilled with the answer from Dr. M, but we moved onto another subject.

I also had another small issue with Ayden Jane and food.  She was at her swim meet and hanging out with the other kids.  No one has a clue about Ayden Jane having PWS because, well, I don't see any reason they need to.  Her friend was eating some sort of cheese crackers.  She offered some to Ayden Jane.  I was watching from a ways off and they were looking at the box.... I thought they were reading some game or something.  She had asked her friend (8) to read it and see if it had any sugar in it because she cannot have sugar.  Her friend 'read it' and declared that it had no sugar so Ayden Jane started to eat a few.  I stopped her and we chatted about it after the meet.

 

The conversation led to this, that there are "different types of sugar". I introduced her to the word carbohydrate and told her it is the big fancy word for all the stuff that her body turns into and uses like sugar.  So, for example, fruit has sugars and too much of those is a problem but that she is okay with some a few times a day.  So that is now considered fruit sugars.  We talked about how crackers and noodles and bread and cereal have grain sugars and that those her body cannot use at all.  That most people can use those sugars and they are even good for them.  Then we talked about pure sugars.  I told her that these are like in candy and cookies and cupcakes and sugared drinks.  That she absolutely cannot have these as they will cause the reaction she had to the drink the other day.  That they are not good for anybody but most people can have them occasionally as treats and be just fine.  She is clear that she is not to eat anything from her friends or there will not be swim meets.... (I know it sounds harsh, but it's how we roll)

 

It is a challenge to stay one step ahead of this kid.  I mean, to have to explain all this stuff to a kid who just finished Kindergarten seems kind of crazy.  At times I find myself wanting to just give her the "because I said so" answer but she won't accept that answer anyway.  She is becoming so independent and more 'typical' by the day.  She will be in situations like the swim team one with more frequency. 

 

I guess I am thankful for the drink mistake and drilling in the consequences (she hadn't felt the hunger consequence before).  I just wish there was a magic formula that would tell me how much independence she can safely handle and how much I need to hold her back to keep her safe.  How do I know she understands enough to take on a complex issue at age 6.

 

She is smart.  She asked me if she can't have fake sugars then when will she get the medicine that will help her Krebs cycle enough that she can handle some real sugar.  (Dr. Miller told her about Beloranib) I told her that Dr. M is making sure it was safe and figuring out just how much... that it would take time because she had to be very careful to make it just right :)  Ayden Jane answered that if Dr. Miller is willing to work so hard, she will try to drink water.  I'll take that as my win for the day.

Bump in the Road

On one of the days we were in Chicago Ayden Jane accidentally got a pretty big dose of sugar.  She accidentally drank a sugared drink that she thought was not sugared.  She was playing and came over and said, "I don't feel good.  My head hurts and I'm freezing."  When I put my hand on her she was a puddle of sweat!  Something had changed drastically in a short time.  We discovered where the mistake was and knew that it was going to be a long afternoon...

It has been two or three years since Ayden Jane had a heavy sugar load.  Yep, it crashed her system then but she was only 3 or 4 and I had no idea how it would effect her now. 

So first there was a headache and a cold sweat.  Then her stuttering took over as she could not think clearly.  Next up?  A bit of slurring and then sound asleep for 2 hours.  She woke up and struggled through the evening.  Lots of stuttering, not much energy, a headache .... 

The surprise came the next morning.  She woke a bit grumpy and impatient but I didn't think too much about that.  We had breakfast and within an hour she was complaining she was hungry!  I realized it was from the day before and made sure Ayden Jane understood that the hunger she was feeling was caused by the sugar.  I made her wait for a snack because I knew she did not really need it but also, because I wanted to be sure that she felt the hunger and connected it.

It is so hard watching her just crash like that.  Her description pretty much sums it up.  "I get a headache and feel awful.  All my energy is sucked up and then I feel hungry."  On my side, I watch and bright eyed, active, articulate, energetic kiddo turn into a glassy-eyed, unable to put thoughts into words exhausted kiddo.

I am both horribly sad for her that this happens and incredibly happy that it does.  I felt like it had been so long since we had experienced this that I wondered.  Would it still be such a problem?  Was it as big a problem as my memory tells me? If she decided to willfully try something would she have a consequence?  Would she try something and not have that sort of reaction causing her to question all that she knows about her nutrition?

So, although I would not choose to go over a bump in the road like this, it was a great thing in the end.  Now if I could just get through the thousand questions about sugar it has spurred on!
 

Brookfield Zoo

During out trip to Chicago we were very excited meet the family much responsible for the way that I feed Ayden Jane.  When Ayden Jane was diagnosed I was not satisfied with the nutritional guidance and a few other things about Ayden Jane's care.  Basically, her doctors were well meaning but I just was not comfortable with their recommendations so I searched out information from other parents dealing with syndrome.  I found that the information our local doctors were going on was sound, however, outdated.  It was a stressful process of stretching my brain to understand but the more that I researched and the more I tweaked things in AJ's diet, the more clear the answers became.

Lara has been a source of answers and advice and become a good friend but solely online.  We had never actually met in person!  We met at the zoo and the kids became fast friends.  Kian is delightful and the two of them had more energy than we did!  It was a bit of a race from exhibit to exhibit.  It is funny how quickly the kids became comfortable with each other just from sharing a similar diet.

I had a great time meeting Lara and her whole family.  Being able to just chat about things with brilliant minds (Lara and her husband LJ) and continue to attempt to understand what is going on inside these kiddos is wonderful.  I admit a bit overwhelming though!  It is easier to do by email when I can stop and look things up!

I also very much enjoyed being able to say thank you in person and have them enjoy Ayden Jane's success for an afternoon.  That may sound strange, but in a community of parents who have lived the PWS life we just naturally cheer each other's success.  I look to others for help and they give it so willingly.  They become part of our family in a way.  I am sometimes asked for help and I know that I instantly become attached to the families and rejoice at the successes of their children.  Ha, as I reread it, it sounds a little odd, but I guess it is one of the hidden blessing of the journey.

Road Trip!

Such a great trip.  I will definitely need more than one post to cover it! 

First of all Ayden Jane was a great travel buddy!  It used to be awful to travel with Ayden Jane.  She was challenging, her tone would turn to mush, I had no idea how to feed her on the road and she refused to watch movies or anything so she needed something to do at all times!!!  It made me nuts.

This was quite a trip.  We drove from Pawleys Island to Spartanburg to hang with her buddy Ellie.  That was just 4 1/2 hours.  The next day it was Spartanburg to the Chicago suburbs!!  She was awesome.  She had packed most of the toys in her room to keep herself busy so her OCD was put to good use.  Must play thoroughly with all toys! 

We have a pretty good routine down.  When we stopped for gas and to use the bathroom at a gas station she liked to get a drink, small pack of nuts and some sugar free gum.  She thought she was queen of the road!  As for food, trying to eat quick can be tough.  I find meals at a sandwich shop where we can split a sandwich and she just 'saves the bread for the dogs'.  We needed places like chik-fil-a or McDonald's with play places.  So how do we survive those?  CFA is not too tough with kids chicken and the fruit cup.  She also loves the diet lemonade...  It's really strong so you can get away with watering it down.  Our trick at McDonalds (we stumbled onto a rocking play place) is the grilled chicken snack wrap and apples slices.  She opens up the wrap (with no sauce) and just eats the chicken.  It is basically a 1/2 of a chicken breast.  Perfect size.  Now, I'm not saying these are things we do all the time or that I feel like they are great nutrition options, but it just is a way to feel normal.  Luckily, AJ could care less about all the other stuff at these places.

We drove the 11 hours without a complaint from Ayden Jane and very few stops.  She rocked it!!

Conference Time

Last weekend Ayden Jane and I enjoyed a conference for Prader Willi Syndrome.  One highlight for Ayden Jane were being asked by Dr. Miller to come up on stage and help talk about nutrition!  I had no idea how AJ would do.  When Dr. M asked me about it I told her I was game, but would not be held responsible for what she said :)  I thought it could go one of several ways.  She could freeze up and stutter her little heart out.  She could randomly decide to discuss/ask about who knows what topics.  Or, she could be amazing.  I have to say Ayden Jane was amazing.  She popped up on stage with no fear and was so excited to help Dr. Miller.  She answered questions well and was really quite charming (although I am biased). 

 

 

There is always great information at these conferences.  The other great thing though is hanging out with other families who do life with Prader Willi Syndrome.  Ayden Jane made some new friends and enjoyed seeing old friends.  Here is AJ and her BFF Ellie.

 



Mission One Accomplished

So last Thursday Ayden Jane did it!  She raced in her first swim meet.  It was wonderful. 

It's sort of odd, but mostly wonderful being the parent watching a kiddo like AJ.  Okay, that will take me a minute to explain.  Let's start by saying that I am used to being the mom that has the really talented athlete who is competitive and wants to win...  I am athletic and competitive and enjoy getting into the competition of these sorts of things and watching my kids enjoy the competition.  I looked around at the meet and watched as other parents looked up their child's times and compared them and ....

Watching Ayden Jane climb up on that block and knowing all that has gone into that feat alone just makes me smile.  Ayden Jane has not a care in the world.  She knows that she is going to swim to the other end and is ready to enjoy the experience.  There is no pressure of times and competition and placing just the shear joy of watching a determined little spirit achieve an awesome, hard fought goal.

We arrived on time with no real idea of how the night would go.  She entered the pool area (inside) and went to hang out with the team on the deck.  She warmed up with them, waited for them to call her.  Talked with other girls.  Laughed at some crazy boys.  Watched a girl play minecraft. (and now wants in on the ipad).  I watched Ayden Jane.  Not one thing made her stand out from the other kids.  She did not sit off to the side and just watch.  She did not latch on to someone and drive them nuts.  She had a great time.

When she was called to go up into her heat she followed all instructions wonderfully.  When it was her turn to climb on the block for Freestyle she was steady and listened so well to coach B.  The 'gun' went off and she watched all the other kids dive in.  Then Ben told her to dive it.... and she did.  As she swam all 25 yards I found my competitive self totally just enjoying the swim.  She had arrived.  Tonight, she was just a typical 6 yr old.

This week she learned the breaststroke and is swimming Freestyle, Backstroke and Breaststroke in the meet on Thursday!!  Go AJ!!