Sunday, February 23, 2014

What If

"What if" is not a question a parent of a child with special needs can allow to roll around in their heads for long.  It leads no where good.  I guess it doesn't really help anybody at any point ...

For the most part we are so incredibly aware of how blessed we are that Ayden Jane can do ________ or is so typical.  Watching her swim laps in the pool, ride her bike with no training wheels, listen to her read a book and it all seems so typical.  Then came the soccer game on Saturday. lol.

Watching Ayden Jane's little brain fire more slowly and struggle to even figure out which foot to kick with...  She changes direction, but often after the play is changing direction again.  She arrives on the scene as the ball is kicked away.

In the end, the fact that she is just not a soccer player is not the problem.  Watching the girls that would likely have been her friends run off without her is much harder.  No, they are not being mean.  Yes, they would play with Ayden Jane if she could keep up or even if they knew she wanted to.  No, they do not intentionally leave her out.  Ayden Jane is perfectly happy to do things her way and doesn't really even notice, but it makes me allow that awful question, "what if Ayden Jane had all her chromosomes intact?" 

That's a place it is just best not to go!  Hopefully I will be able to enjoy watching her play soccer and most importantly, hopefully Ayden Jane will enjoy it!

Monday, February 17, 2014

Spring of Sports

Today Ayden Jane and I spent the morning running around purchasing sports equipment.... for her.  First we had to go find some new goggles.  She was convinced that the ones she owns are too small.  Last swim class her coach told her that she needed goggles to keep her head facing the bottom and then she would be much faster.  She really does need to wear them but.... you know how little ones can be.  If it is her idea it might happen.

Honestly, she has the stroke and swam all the way down and back without touching.  She picks her head up to see where she is in the water because she isn't wearing goggles.  Then it takes a lot of effort to get her momentum back. If she will wear them she will swim like a champ!

Next up was soccer gear.  Ayden Jane is not likely going to be a soccer super star, but she was determined to play this spring.  So we now have new cleats, socks and a ball.  It all just struck me a little funny that I spent my morning collecting sports gear for my kiddo with PWS.  So much for not being able to keep up!


If you have read a few of the posts or just looked at pictures you know we have 4 kids.  They are a wide age span and are very different in personality but are very close as siblings.  It is a wonderful thing as a parent to watch your kids truly enjoy being together. 

This weekend we asked Noah to come home and help clean up the yard from all the limbs left by the ice storm.  He did so willingly and ran the chain saw much of yesterday afternoon.  He is a strong 18 year old young man who has 3 sisters.  He and Kayla are tight like good friends as they are a year and a half or so apart in age.  They joke and mess with each other, but there is no doubt that if ever one needed the other, to the rescue they will come in a flash.

More amazing to me is the bond between Noah and his 'little' sisters.  Mckenna thinks the world of him (and Kayla) and enjoys any time he includes her.  He does little things like take her to sonic for a drink or just sit and tease her in the way that a big brother shows he cares.  No doubt he is looking out for her as she enters the crazy teen years ahead.  Mckenna has two awesome examples to follow in Kayla and Noah and she strives to be the best of both of them.

Ayden Jane melts his heart.  Noah and Kayla were old enough through all of AJ's struggles to really understand the battle she faces.  I believe Noah would do just about anything to help Ayden Jane.  He is patient with her but is never a push over.  Ayden Jane tows the line with Noah and they have a lot of fun together.  This trip home Noah put Ayden Jane to bed each night.  He read her stories and told her stories.  Ayden Jane looked forward to it all day long.

Last night as I put AJ to bed she said, "It was a great day.  Noah went to church with us and sat with me at lunch.  I miss Noah when he is at college but I know he loves me."  Yep.  He sure does AJ.

Friday, February 14, 2014

AJ's Latest Mission

I need to learn to be careful what I say.  No I don't have an issue with foul language...  It's just that I have this little one who is quite sure there is nothing she can not do.

Here's where it all started.  I was talking to Mckenna about cross country and a color run coming up she wanted to do.  Ayden Jane wanted to know when she could do another run.  I told her that we would still do the big run/walk with Ellie but that's was not going to satisfy her.  Ayden Jane wants to race like Mckenna.  So.... I opened my big mouth and I told her that when she can run a whole mile without stopping I will enter her in a race.

So today, Gary and I were up at the high school and Ayden Jane decided it was time to show us she can run a mile.  She knows that's four times around the track and off she went.  First lap, no problem.  She stopped a minute to taunt us with a bit of, "see I told you I can do it..." and then off for lap number two.  She did pretty well with the second lap.  The third lap, well, she informed us that she could do it except she was getting tired. lol.  Yes, AJ, that's the problem, you get tired.

Ayden Jane is so determined.  She wants to start running every day so she can run the whole mile without stopping.  All we had to do was tell her it is hard and she might not be able to... 

I suppose I should mention that we did all this after Ayden Jane had ridden her scooter and powerwing all over the neighborhood.  Followed later by conquering riding her 2 wheel bike!  She had just about gotten that a while back, but with the nasty weather we hadn't pulled it out in a while. Today she hopped on and with a little push to get started she rode all up and down the streets in our neighborhood!

I think we ALL were happy for a sunny day!

Tuesday, February 11, 2014

On the Mend

Ayden Jane has been on Augmentin for 5 days now.  The turn around is so crazy.  You know, the whole having no idea how sick your kiddo was until they start to feel better. 

The difference with Ayden Jane is even more dramatic than with my other kiddos.  First is the physical.  When infection takes hold in AJ she gets 'puffy'.  It happens slowly and I generally start worry about her weight and stress...  Then after a few days on the antibiotic the kid just loses all the fluid.  She looks soooo much better.  Even her face looks thinner.  Next impressive is her emotional stability.  Tonight she goofed around with Mckenna.  Ayden Jane was silly and relaxed and playful.  This was after a full day of school and an after play time with the boys.  Energy level is back up and she does not get tired.  Finally, food is not a concern!!  No worrying about the next meal.  No asking for food.  No asking for extra things at a meal.  Just happy for what she has and patient and calm.

It is evenings like this that make me wonder what Ayden Jane would be like without PWS.  As she played with Mckenna she is so stinking funny!  She was using an app on the Ipad and making pictures of Kayla and Noah and sending them.  She was playfully arguing hair color and giving people funny hats and crazy things.  Nothing all that note worthy, other than she was being such a typical kiddo.  It is like a glimpse of what life would have been like without PWS.  So different for her, so different for her siblings and so different for us.

Saturday, February 8, 2014

Pediatrician Woes

Ayden Jane has had a cold for nearly 2 weeks.  It started just like any other cold with a day or so of fever, followed by a ridiculous amount of stuff coming out of her nose.  Now, I say fever is typical at this point because Ayden Jane seems to have a very typical immune response to viral infections with the exception that she doesn't really 'feel bad' at this point.

So I let it ride and do what I can to help her clear out the crud, hoping that we can keep it loose and keep infection from setting in.  In this case at day 10 of the cold she crashed.

It was Wednesday, which means physical therapy day.  If there is another person in the world who has a better feel for Ayden Jane than I do it's Jen (her PT).  Gary picked AJ up early from school as typical and she was whiny and a mess.  Jen started therapy and was concerned about how AJ felt - I mean how her tone felt.  Jen knew right away something was up.  Ayden Jane made it through PT, with low tone, poor balance and slower than normal processing.  She then fell asleep at 5pm and slept until about 8 when she woke up and took a shower.  Immediately following the shower she fell asleep for the night and did not wake until 6:30 the next morning.  Yep.  13 hours of sleep!

Just looking at Ayden Jane she had the puffy appearance, she had wet the bed, her tone was low, her body awareness and control had disappeared as evidenced by her running into everything and taking a couple of pretty big falls.  She was HUNGRY.  Off to the doctors office Gary took her. 

Our regular pediatrician was on hospital rounds so we had to see a different doctor.  This has happened a few times and the result is nearly always the same.  FRUSTRATION!!  The doctor checked her out and told Gary that because there was no fever or audible sounds of pneumonia she did not warrant antibiotics and to bring her back next week if she did not improve.

I just want to scream from a mountain top.  Her signs of infection are not typical because she is not typical!!  I am sorry if she does not fit the text book for reasons to prescribe antibiotic.

So, what is a mom to do?  Go over his head.  lol.  Luckily, we have a tremendous 'local' endocrinologist who I called.  We talked through the whole scenario and she said, "well, that's pretty much every one of Ayden Jane's signs of infection."  Yep.  With as fast as these things turn on her and her own inability to fight infection waiting until next week is a very bad idea.

We are 24 hours on Augmentin and she is pleasant and happy and feeling much better.  She is coughing up thick, plug-like, green goo and getting it all outta there.  Her eyes are shining and clear.  She is still a bit weak and mushy as evidenced by her wanting to do things like walk the dogs and getting about 3 min. in and being exhausted but, oh well.

Gary and I were talking about how fast this stuff turns on her and the systemic response.  Wait, that is too sciency.  I mean how it effects every part of her.  Why does being sick with infection make her lose tone?  Retain fluid?  Throw off her balance?  Make her hungry?  Make her emotional?  Absolutely exhaust her?  Cause her to wet the bed?  It seems to effect every system in her body.

Here's to a speedy recovery!

Saturday, February 1, 2014

Healthy Wins

So I was thinking about how sweet it is that, for now, Ayden Jane's desire to stay healthy is stronger than her drive to eat.  It comes out in silly ways that assure me she is really okay with the way things are in regard to food.

Here are two examples: 

As Ayden Jane and Mckenna race through the house being goofy, Ayden Jane taunts Mckenna (think na nana na na):  "Dr. Miller's gonna fix my Krebs cycle so I can eat more sugar than you can." 

Gary made cinnamon rolls for Mckenna for breakfast.  Ayden Jane asked what they were and when we told her they were bread she broke into song (think bad opera) "I don't eat bread, I don't eat bread, I don't eat bread cause it's not good for me.  I don't eat bread cause it doesn't make me strong, I don't eat bread cause it crashes me.  Oooohhhhh, bread...."  It went on for a long time and was hysterical.

Meanwhile, a few days ago while we were iced in by the storm and off school for a couple of days, Mckenna was bored and made cupcakes she decorated into ninja turtles.  Ayden Jane asked her about them as she made them and Mckenna told her they were sugar cupcakes and then they went on to have a conversation about ninja turtles.  The uneaten cupcakes are still on the kitchen table and the thought to try them does not even cross Ayden Jane's mind. 

After messing her up with the too high ribose dosing (see a few posts back) I am more aware of just how great I have it.  Don't get me wrong, feeding AJ is still a lot of work because there has to be food that is good for her available at each meal and meals can't be skipped or she 'crashes'.  However, there is no driving hunger and Ayden Jane talks frequently about the importance of choosing things that keep her healthy.

My favorite thing this week was watching her choose something to have with Daddy for his birthday.  She decided Daddy shouldn't eat cake but she wanted him to have a treat.  She had me pull up recipes on the computer that were treats but would be okay for her to eat.  She picked a coconut, chocolate chip bar sort of thing.  It had no sugar and she loved making it special to eat with Dad.  All in all, I'd say this little six year old has the whole food thing under control.  (for now.... ugggh)