Sunday, April 28, 2013

Crazy Week Recap

What a week.  Our computer displayed the blue screen of death.  Honestly, it gave us all it had to give for many years....  We had already started the search to bring us into the 21st century.  Step one is accomplished... Wifi.  That has made it possible to use the iPad for now and laptop decisions are on their way. Woohoo!

Noah started the week not feeling well.  By saturday, both he and Ayden Jane had positive strep throat tests and ear infections.  Noah played his soccer games anyway and is finally feeling better.

Ayden Jane ran a fever for 5 days which is really impressive for her.  I should have known to take her in after thurs when she slept for 23 out of 24 hours.  Honestly, I just thought it was a virus and that has been the only time in the past that AJ has had a fever.  By Saturday the fever was still there and I took her between Mckennas soccer games.  Not Mom of the year , but AJ may just, be little sister of the year!  She is a really easy sick kid.

Other happenings this week, Mckenna had her musical... 5 performances worth, Noah won region champ in a game that went to PKs while he had strep throat and I brought him home the hour drive shivering and beyond exhausted.  (once again not up for mother of the year) and Mckenna won her soccer tournament this weekend.

Next week?  Hopefully a bit calmer.

Sunday, April 21, 2013


So this week we celebrated my Dad's 79th birthday on Thurs. evening before the soccer game.  On Friday I made a cake for Noah's birthday and Kayla was on her way from Clemson with another friend who's birthday was this week.  They dove into Noah's cake and hung around and laughed... and we all had happy 18th birthday to Noah.  Then Saturday night Kayla and her friends took Ayden Jane and Mckenna with them as they all went out to eat at a local Mexican place for her friends birthday and we again .... had.... cake.  Happy Birthday Allie.

So, what did we do with Ayden Jane for 3 birthdays in 3 days?  My Mom had gotten some no sugar added ice cream so that was AJ's treat.  She did not care how much cake or whatever anybody else ate.  She had her bit of ice cream and was THRILLED.

Friday, I bought some coconut milk, chocolate ice cream for Ayden Jane.  It was a hit!  So that is the route I went for Noah's and Allie's celebrations.  In the end, I am sure Ayden Jane has some exercise and better eating coming her way, but it was a great few days.

On another front, I am trying CoQ10 once more for Ayden Jane.  I had some positive results when she was an infant, but that was about it.  I have tried it off and on since but there was some talk about a form called Qunol that could be purchased at Walmart.  I bought it and we are about a week into using it.  So what do I think?  I know she has been unconcerned with food (other than ice cream :)  In fact, on Friday night she never ate supper, just the coconut ice cream.  She has been 'easy'.  She has been able to go with the flow even better than usual?  It is so hard to say because 1) Ayden Jane is generally just doing great these days and 2) we have been so busy (which is AJ's favorite thing in the world) and have had lots of fun people around.

After I finish the week, I may up the dose a little and see what happens.  All in all though, we are still cruisin' along like pretty much any other 5 year old.

Tuesday, April 16, 2013


Wow.  No, I have not forgotten about this page nor am I ignoring it.  Life is just crazy!  And I mean that in a good way:)

I won't try to recap everything...

I do have to say that Ayden Jane has sooooo much energy!!!  It is almost like the harder we play the more energy she has.  Like conditioning? Today she got up early, like by 5 she wanted to know if it was time to get up yet.  Ummm. no.  She went hard all day with school, horses and Noah's varsity game she played all out until 9:30!  I am tired.

On top of that I honestly hit my limit with her talking.  It is fun when she decides to 'tell a story' and you can just passively listen. But today was a barrage of questions.  Honestly, amazingly good questions.  Insightful and varied in topics.  But constant... and deep and requiring entirely way too much brain power on my part!!

One of the topics today was - Why did Jesus to die for our sins?  The standard answer that he loves us just wasn't cutting it.  She wanted to know why Jesus had to die, as in why He couldn't just do something else for our sins.  Trying to explain the concept of the perfect sacrifice...  Ummm, it was a long conversation that luckily ended with a sudden thing grabbing her attention.  Whew.

Another topic you ask?  Why does my body not use sugar like other peoples?  I started to dive in and let her know she has PWS.  I told her that her body is missing a tiny piece that makes her not able to use food the way most people do.  I asked her if she has ever heard us talk about Prader Willi Syndrome.  Her answer was yea, but I can't be missing much because I can too eat sugar.  I eat grapes and bananas and they have a kind of sugar.  That was about as far as we got.

Sunday, April 7, 2013

Drill Sargent

I have pushed/preached to Ayden Jane, well really all my kids, daily exercise...  I have been a bit of a runner and I enjoy all sports.  Okay, that's a nice way of saying I was a totally hyperactive child and have the adult version now.  I miss the life of being able to take off and run or play whatever, whenever.  You know, that having kids thing... puts a damper in these things.

One of the solutions I decided to try was the 10 minute trainer videos.  I figured I should be able to squeeze in 10 minutes here and there and I need to do something to improve strength and flexibility.  The other thought was that Ayden Jane might do them with me.  Well, she is awful at them but she loves to do them.  Over time I think she will get the moves down much better but for now at least she is moving and groovin'.  She is one heck of an accountability partner.  We HAVE to do them EVERY day.  We do 2 different ones a day.

Also, she has taken walking and running on as a mission.  Today we went over to Brookgreen Gardens and walked the 'zoo' and a few other trails.  We got home and she said, "Mom, we need to take Tucker for his walk."  Okay, I believe we just spent over an hour wandering through the gardens and zoo.  Off we went though because how do you tell a kid with PWS that we have walked enough in one day!  As soon as we got home the drill Sargent informed me that we still had 10 min trainer to do.  Grrreeeaaatttt.

I pretty much got nothing done today, but at least I got my exercise! 

Saturday, April 6, 2013

Great Day

Today was one of those days where you end the day saying, Hey!  I can do this PWS thing.  It's not so bad.

Ayden Jane was invited to a birthday party for a girl in her class at school.  We went and the kids played on the jumpy things and climbed through the playhouse...  AJ hooked up with her best little buddy A and it was fun to watch them play together.  After an hour or so of playing they headed for pizza and cupcakes.  Ayden Jane was just awesome as I pulled out the things she had brought to have for lunch instead and she just sat among them and happily ate her food.  At this point, I don't think she really cares at all about eating something different than the other kids.  It is almost harder on the adults around that feel so bad for her.  It is sort of funny that we feel bad that she cannot eat things that are not good for her while she is eating great food.  She is being nourished and kept healthy and strong.  I'd say that's worth skipping the pizza and cupcake meal.

After we finished we came home and Mckenna had a friend over.  Ayden Jane played with them for a long time inside and outside!  They had her on bikes and scooters and a power wing.  They set up goals and played soccer with her.  They just all had fun.  As the evening came AJ was happy and calm and pleasant.  There is just a peace about her after she gets a LOT of good hard play like she did today.  I wish I had the energy to have her play that hard every day.

As the evening waned Ayden Jane was still going strong and Mckenna pulled out Twister!  It was pretty funny to watch Ayden Jane try to coordinate, think about the colors and which hand was which... all at the same time.

Spring Break Part 2

Well, we are coming to the end of break and it has not been too exciting.  The weather was good a couple of days and cold and wet for a few days.  Cannot wait until it gets WARM! Okay, rant over.

Good news is that Ayden Jane did manage to kick the rest of the crud, bad news is she now needs to get back to leaning out and eating less.  I know that sounds odd, but truly Ayden Jane just gets hungry when she is sick and (as her labs prove) she just doesn't use her gh well.  Not a great combination.  I am not saying it's a big deal as I am sure she will straighten out on her own soon.  Just an odd part of being sick.

Big news is I took a part time job.  It is very part-time so should not make things too crazy around here, but it is still a bit nerve racking.  One more schedule to throw in the mix!  Any way, I am starting to work at Brookgreen Gardens.  I am not really even sure what my job is for real, but this month they need me to drive a shuttle around the place!  Hey, it will be a chance to get out and meet new people in a beautiful place.  Hopefully I will drive safely and all will go smoothly!

Monday, April 1, 2013

Spring Break

Today was the first day of Spring Break for the kids.  It started out rainy and I was sort of dreading the possibility of spending a week indoors... knowing Ayden Jane needs to get out and get moving!  Luckily the sun peeked out and so we decided to take Tucker for a walk.

Actually, Tucker mostly took AJ for a walk!  It was pretty hilarious.  She kept at it and we walked down to 'the field' in our neighborhood and let him run for a bit.  Then walked him a good while longer.  I'd say over a mile or so.  Ayden Jane was determined to hold the leash and Tucker pulled her every which way including off her feet a few times!  She scraped up both knees, was dragged through a puddle or two and into several ditches.  She couldn't have been happier.  She definitely worked hard as she walked and pulled and even jogged (she uses the word jog because she gets to jog on the horse.  Very cute).  After we got back she had a snack of nuts and a quick nap in the recliner.

Tonight we put on the new glasses and tried to get back to reading.  It is a bit frustrating because she wants to read the books she just can't yet.  I just remind myself that if she is not getting frustrated than I should be okay with the painstakingly slow pace.  Her determination is amazing.  The way she assumes she can do anything.  Her ability to take pride in everything she CAN do.  Don't get me wrong, this attitude drives me absolutely nuts a lot of the day as she insists on doing everything herself, even things she can't do.  How she insists she knows things she just doesn't...  In the long run, I do hope she keeps the super confidence and boldness and the ability to attack everything with an attitude that she is capable of doing anything.