Thursday, June 27, 2013


Well, we had Ayden Jane's labs done.  There is some great news and some frustrating things -- as usual.

First the great news.  Her insulin level is down quite nicely to 9.3.  I am honestly not totally sure what the significance of this is, but I know that when her labs were awful during the 'winter of infection' and for many, many months after we were well into the teens.  Dr. Miller told me she wanted to see it down under 10 and I honestly thought she was crazy...  Woo Hoo!  We did it!  Other good things are Vitamin D looked good (of course, it is June and we are outside a TON) and thyroid was good.  It's kind of funny that her thyroid is doing so well.  It is commonly a problem in PWS and 2 out of 3 of my non PWS kids have a low thyroid. 

Not so great is that her eosinophils were high.  What's an eosinophil you ask?  It is a type of white blood cell that typically signifies and allergic reaction.  We tried to trace down allergies back when her value was 8.9.  Nothing.  She was not even mildly allergic to anything they can test for!  Well, now her value is at 12.6!  I asked Dr. Miller about it and her response was interesting.  She said that a GI doctor from Hopkins who is looking into PWS thinks that the gut is causing high eosinophil values in some with PWS and is working on how to fix it.  So, at least Ayden Jane is apparently not entirely alone in this and someone is already working on it.  Check.

As for her IGF-1 level which is used to help determine her dose of gh, it is a bit high.  Likely, the eosinophil are causing inflammation which is in turn raising the IGF 1 values.  Grrrrr.  Hope the nice GI doctor gets this one figured out quickly!

So, 1 1/2 years after the infection that took over Ayden Jane began things look pretty good.  The gut issues may have been brought on by it all (or all the antibiotics) or maybe they are just one of the lovely PWS features we get to enjoy.  (note the rolling eyes)  Either way it is hard for me to believe but she is good on the inside.  Dr. Miller's response to my annoying questions was, "really really, you are in a good place."  Dare I breathe?  Dare I think about something else? 

Yep.  On to vaccinations for Kindergarten and investigating eosinophilic gastritis.  On to praying for  Dr. Schiemann (the Hopkins doctor) and beginning to get my act together for the One Small Step walk in Spartanburg.  On to enjoying summer fun and doing our best with each day.

Monday, June 24, 2013

So Proud

I just spent the most heart wrenchingly hard and proud 45 minutes in a long time.  Ayden Jane had her first swim team practice today....  Let's review last year.

Ayden Jane had two wonderful coaches.  The were young and fun and each day they were in the water with the kids teaching them hands on.  They laughed with them while they taught them.  They instructed but also took breaks with fun games.  They really liked the kids (or at least did a great job faking it)  The group of kids was small, maybe 5 at the most.  They were all 4 - 6 and learning to swim the strokes.  Ayden Jane loved them and swimming.

Today we arrived and there was obviously no kid under 7 but Ayden Jane.  She was put in the lane with the youngest/weakest swimmers but was still way over matched.  The coach was an older drill sergeant type that did not show the kids, but used all verbal instruction.  She did not even have a swimsuit on.  Who can teach swimming with only verbal instruction!!???

She sent the kids down the pool telling them to breath every 3 strokes.  She was putting them in 2 at a time... Ayden Jane didn't even catch up to when to get in and jump in ahead of her turn.  I loved it.  When she didn't understand she got in the coaches face and asked.  She was brushed a side a bit but that didn't stop her.  On about lap number 3 (yes, full 25 yard pool laps) Ayden Jane was TIRED and what bit of form she had was gone...  Coach pushed forward... AJ was starting to get upset but she was not going to quit.  She hung in there for 35-40 minutes until she was legitimately so tired she was having trouble making it to the wall!!  She gave it EVERYTHING she had and even when offered quitting was not an option.

Saturday, June 22, 2013


Ayden Jane went to Vacation Bible School this week.  It was at the church where she has gone to preschool so there were lots of friends from her school and adult that she knows.  She had a lot of fun and it gave us a week of something other than summer fun. 

I think her favorite part was that her friends C and C from down the street (twin boys her age) went also.  We picked them up and held onto them for a little bit until their mom came... it was maybe 30 minutes but Ayden Jane loved that she had them to bring home and was in the same group with one.  I loved listening to them chat as I drove! 

Gary picked them up one day and he commented on how funny it was to hear AJ talk to another kid her age and just have a regular conversation.  Basically, they would get a drink and maybe a very little snack and then hit the trampoline ...

On my end, it is so cool to have friends that know enough about Ayden Jane to know she comes with an bit of extra maintenance but not care in the least.  They just love AJ, invite her for walks or to over to play and send the boys to our house.  Sometimes it is a fine line with our medically complicated kiddos.  Parents feel an extra amount of stress when inviting them (which I totally get!!) but some are just amazing and care so much to happily live up to the challenge.

I have to say, in our small community, we are blessed to have several of those types of friends.  Today, Ayden Jane went to a birthday party for one of the girls in her class.  It was a pool party and over lunchtime.  I packed some food: a hard boiled egg, pistachios, almonds and a square of dark chocolate.  When we arrived the birthday girls mom, L, said she had something special for Ayden Jane because she knew she could not have the cupcakes.  She got her dark chocolate and a nut trail mix.  She was sure to give it to me so I could  give Ayden Jane the amount I wanted to.  While the kids ate pizza and snacks, Ayden Jane ate nuts and egg.  When they had cupcakes I gave her the dark chocolate and told her how Mrs. L went out of her way to be sure she had a treat.  Ayden Jane was thrilled!!!

She had a great day of partying and swimming with her friends and felt so loved that they thought to get her something special.  I'd say we are blessed.

Wednesday, June 19, 2013


Weary.  I think that is the best word to describe the way parents feel at times.  I remember feeling a bit weary when Kayla and Noah were young and all that energy was boundless.  Not only do we as parents need to keep up with all their energy, but we have to do all that boring adult stuff too!

Add in a kiddo with an extra layer of stress and.. well, weary sort of sets up camp.  It is possible that I am just feeling the years as I push into my 'late' 40's.  I don't think that is all of it though.  I know that days where I was just 'done' with being the mommy I could throw a PBJ ect. toward the kids and put in a movie.  Or I could pile them in the car and head to McDonalds.  Let them hit the play place and I could enjoy a newspaper...  Basically, I did not worry about a day here or there where we had no vegetables and we stared at the TV.  I could send them outside with basically no supervision to play with their friends and not have to even think about them not keeping up or slipping into somebody's house and having cookies and lemonade. 

I find it a constant struggle to kick back and enjoy summer.  I look at Ayden Jane and I want her to slim down.  I obsess over nutrition.  Her brain does not function well when it is not fed well so she needs x amount.  Her body gains or at least can't lose anything if we have a small margin over x.  Frustrating.  Then there is exercise.  Needs to happen daily but it is HOT.  So, we swim a lot.  While we are there I wonder if swimming down to pick things up off the bottom is exercise.  Then I worry she is dehydrating since she won't drink water.  I try to get her to drink something without fake sugar but she won't so I cave and let her have a diet green tea or propel.  Now I stress over what the fake sugars are doing to her insulin response.  grrrr.

I mean, if you ask me how is Ayden Jane doing?  My answer is easy.  She is amazing.  She functions just like kids with all their chromosomes intact.  You wouldn't pick her out of a crowd of her peers and notice much of anything different.  Well, other than she is keenly aware of nutrition and medical issues that an average 5 year old would have no clue about.  Her teachers only have great things to say and I have even received compliments on her behavior from strangers when we are out in public.  She is smart and funny and caring and quirky.

It's the balancing act that it takes to keep things that way that makes me crazy sometimes.  The daily/hourly maintenance.  The constant fear that if I miss one of those days or hours of maintenance that it will all come crumbling down.  Sounds a bit silly when I write it out...  Yep.  Need to turn off the brain and just enjoy watching Ayden Jane once in a while like I would a beautiful sunset.  Just marvel in it's uniqueness and awesomeness.

Saturday, June 15, 2013

Unstructured Summer

In the PWS world, unstructured days are generally a bit risky.  Typically the kids thrive on routine because it adds predictability and stability to their lives and therefore reduces anxiety.  Ayden Jane's summer thus far has been one unstructured day after another and she LOVES it.  Her toughest questions of each day are usually whether to go to the beach or the pool (which is usually solved by going to the beach followed by the pool) and when to go.  Her only definitely eating time is whenever she wakes up.  After that we eat when we can and she has no problem with that.

I asked her the other day if she liked summer.  The grin gave me the answer but she also said a nice loud, "yes, yes, yes."  She wanted to know if she had Mrs. Jen (PT), horses and swim team all summer.  I told her she did and she stuck out her bottom lip. (with a teasing grin hiding behind it) and said she would rather just do what ever we wanted each day.  Next week her preschool is having VBS and I totally intended to send her.  A slip up (on our part) did not get her registered in time but I honestly think she is perfectly content to keep making up our days as we go.

She does go with Kayla to TMP where she lifeguards on Friday mornings (while I work) and she may need to make an appearance with Noah at soccer camp this thurs.  Seeing how she has been out of school since May 24 I really thought she would want more by now.  I guess swimming, playing at home and dog walking keeps her busy enough.  I am loving the laid back summer and laid back AJ!

Friday, June 14, 2013

Daddy Day

Well now that I am working a little bit and Ayden Jane is out of school it has been interesting to see how the day goes when Mommy is not around.  A couple of days ago, Gary had some things to do up in MB so he took Ayden Jane and treated her to the bouncy slide/playhouse things.  There were some great successes from the day and some .... well not so great successes.

Basically, Gary is pelted with, "Mommy says I can have...,  Mommy says I can do ....... " and he honestly knows that's NOT what Mommy says but wants to avoid the ensuing melt down.  I know that my other kids used to give him a flash of panic when he did things differently than Mommy (especially Kayla) but they learned to just go with it.  I believe AJ will too, but it has been interesting to 'watch' them work it out.

I guess, when I think about it, Gary and AJ have not spent very much time just the two of them.  I mean, Gary plays with her plenty but I am usually around or he has Mckenna with him...  Noah has kept Ayden Jane quite a bit over this past year and they have their routines down.  She amazingly does not really argue with him and he just has a way with her.

Glad for Gary and Ayden Jane to establish their own things and routines. 

That sounds like all they did was argue.  Honestly that was just a small part.  Ayden Jane was thrilled to have Daddy Day and talked ALL day long.  Gary's first question when he saw me was, does she ever stop talking?  It was a filled with energy day so she went all day with little to no nap.  Gary was so great.  After all that he took Ayden Jane to horses too.


Monday, June 10, 2013


We headed to the pool again tonight.  It is pretty much a daily occurrence... We brought some neighborhood friends and had a great time.  So what's the point of blogging that?  Ayden Jane suddenly figured out how to swim freestyle!!  I mean, rapid arm turnover, moving through the water real freestyle!  Just a day ago when she tried, it was the same uncoordinated movements with little forward motion.  Frustrating for her as she can move quickly in her underwater sort of swim...

I was so excited but, of course, didn't get it on video.  It will be coming soon though!!  She starts back to swim team next week and will her coaches ever be surprised!!


Thursday, June 6, 2013

Noah the Graduate

Last night was Noah's graduation from High School.  He has been set on where he is headed for quite some time now so in some ways graduation was a formality.  As we, Gary and I, sat up in the bleachers waiting for it to start and chatting we had a lot of great memories come to mind.  Noah entered High School a fairly tall skinny kid.  He has always had that great smile and has a lot to be proud of from his years at Waccamaw High School.  He graduated with honors and played varsity sports.... 
But I think what I am most proud of is the many times people have told me what a great young man he is.  Other parents, teachers..  The greatest compliment and testament to the character he possesses came from a teacher.  Gary had gone to chat with this teacher because Noah's grades were not as they should have been.  The teacher did tell him the same that we heard from most of Noah's teachers.  That Noah is very bright and capable of all A's but he is unorganized and does not get all his assignments in....  (in other words, he is more interested in chasing that soccer ball!)  Don't worry, I am getting to that compliment!  He then told Gary that Noah is a tremendous young man.  That he has two small boys of his own and he hopes that they will grow up to be fine young men like Noah.
We are proud of him.  He is a tender hearted young man with, as a soccer coach says, a maturity beyond his years.  He is an amazing brother to his 3 sisters.  He and Kayla share a special friendship, he has given Mckenna his time this year and recognizes that she is growing up and he is just amazing with Ayden Jane.  He can tell her no and keep her straight but somehow never turn it into a show down.  He can make her laugh and reduce any anxiety in an instant.  Ayden Jane will do anything for her big brother.

Congratulations Noah!!  It was a hard fought battle at times, but you made it and have grown into a fine young man.  Your future is bright.  Follow the paths God leads you down and go with confidence where ever He sends you.  We love you.

Tuesday, June 4, 2013

Numbers, Numbers...

Not sure why the math connections are pouring in for Ayden Jane, but numbers are just all making sense now.  While in the car on the way back from Greenville she was talking (for over 4 hours...) and this came out.  She was talking about a boy she knows from school in the little kids class.  She said, if B is 2 than I am 3 years older than him, right?  And E is 3 so I am two years older than her. (pause....)  Hey Mom!  If you put B and E's old together they are the same as me!

Tonight at horses we were working on some things with repetition.  We did a lot and I told her 10 more.  She answered with a grin, "okay, 10 more and then 10 more cause that makes 20."

Then on the way home she wanted to count to 100.  She is at that point where she can do pretty well with it as long as you help her a little with the next 10.  You know: 38, 39 ____.  She was no where close to counting a while back when we last tried.  It was more like 21, 22, 26, 29, 28, 23, 40...

It has happened with other things where she does something in school or I try to teach her something and she seems to have no clue and be no where near understanding.  Then poof, a few weeks later she has it.  I guess I need to remind myself that she is always taking things in even when we can't see that her little brain is organizing all the stuff she is learning. 

Monday, June 3, 2013

Summer is Upon Us - Hooray!

Summer is such a great time living here by the beach.  Of course, summer is a great time for other reasons all over!  I think I would love hiking, kayaking and other mountain activities if I lived there as well.  For us though, summer is all about water.  Ocean water, pool water, sprinklers....

Ayden Jane is fearless as she heads out into the waves.  She loves to boogie board and swim in the ocean.  She is content to swim by herself (it is too darn cold for me yet) and loves when she finds friends there.  I am amazed by how she can be toppled by waves and just get back up without a care.  She is doing much better than last summer at paying attention to how far out in the ocean she gets.  Or maybe she is just taller....  At any rate, she has stayed very safe and I think it will be a lot less stressful for me this year.  Woo Hoo!!  (I had to go in after her on more than one occasions last summer)

At the pool she has picked right up where she left off.  She is able to swim all over the pool and still loves to swim down deep.  Her lung capacity is still large enough to scare me but I am getting used to her staying under a loooong time.  We have signed her up for swim team again this summer and hopefully she will have a bit more of the necessary coordination to pick up the strokes. 

I have to admit I am loving being down to 2 therapies a week.  One PT and one therapeutic horse back riding.  Add in swimming 2 days a week and all is well.  It will be really big news if she is able to compete in one swim meet before summers end.  I will totally video that if it happens!!

Other plans to keep her busy include a vacation bible school or 2.  Possibly a bit of 9 - 12 soccer camp when Noah is coaching and a few Fridays spent in the pool where Kayla lifeguards.  (lots of kids there she does not really know and she will be the youngest) 

Ayden Jane loves to be busy and I am hoping to get her leaned out a bit, IGF-1 levels down and insulin levels low.  I may get nothing else done this summer, but I guess Camp Gulley is officially open.