Tuesday, December 30, 2014

Happy New Year

The change of year is always an interesting time. It is a time I enjoy the fact that I have written throughout the year because it is so fun to look back to what was going on last year, the year before... Amazing how time goes on!

I see 2014 ending more than just 2014. It is ending with such hope. I will try to explain what I am seeing/feeling when I look at Ayden Jane these days.

In the fall three years ago Ayden Jane's journey took a sharp turn. Up until that point Ayden Jane was so lean and active and healthy... Then the very first illness that either uncovered or started her immune issues set in. So began the "winter of infection". It took about four months for us to finally clear her body of infection. Left in it's wake were high IGF-1 levels, crazy blood sugar drops, labs all out of whack and added weight we did not need. Recovery took removal of adenoids, discoveries that vaccinations did not even take and crazy results from some labs.

Just as all began to even out, fall came and colds sent us back down a similar path. Experience helped us fight illness more effectively but it still took so much out of Ayden Jane and she tirelessly worked each time to get back to health. With each round we added a bit more weight than we could get off but onward we charged.

This was our pattern for three years! It broke my heart every time!

So why do I have hope that this will change? We have found something that has filled the gap in Ayden Jane's immune system.  It is the last day of December and Ayden Jane has stayed entirely antibiotic free! She has had a couple of colds that ran a totally normal course and then she recovered just like any other healthy kiddo. I cannot find words to describe what a miracle this is to me. I lived in fear of the next cold that would turn to a sinus infection or pneumonia and lead Ayden Jane back down that path.

As part of that and definitely magnified by the use of artificial sweeteners there was a constant challenge of balancing blood sugars. Ayden Jane required something to eat about every 2 1/2 hours and I was constantly watching to see that she did not crash.

Now, no artificial sweeteners and a working immune system and the addition of some MCT oil (which she previously could not handle) and I don't know how to express what I see. That spunky little kiddo that I had up until 3 years ago has returned. That may sound odd as Ayden Jane has accomplished so much in those 3 years but there is just a difference. She is a determined soul by nature but there is such a spark and an ease about her now. So much less stress surrounding our days and nothing but possibilities on the horizon. I see 2015 as the year Ayden Jane takes off. No more set backs. Just soaring to new heights.

Sunday, December 28, 2014

Christmas Fun!!

Gary and the kids were messing around out back at Grandma's house. These are just a couple but I love how much fun they can have together.

Ayden Jane must have had quite the interesting story to tell.

And this is just our smiling Ayden Jane. She has taken to the crazy fake grin whenever there is a camera around but it's pretty cute anyway :)

Sunday, December 21, 2014

Good Stuff

Ayden Jane has done an amazing job of not even trying to back out of her deal with the 'fake sugars' and water drinking.  As a result her hunger, which was not really a problem before, has subsided even more. Here are 3 examples:

Thursday: AJ had a full day of school with Christmas party, games, extra recess... and then she stayed after school for a club she goes to for another hour.  When she got home she asked for a cheese stick and some cherries.  Fair enough. After her snack we went for a 'run'. She was tired and we walked more than we ran, but we still covered 2 miles. A little while after we got back Ayden Jane asked about supper. It was definitely past when she is used to supper. I told her Gary would be home in a few minutes so she could choose to wait for him and we would all eat together or I could go ahead and fix her something. She chose to wait. A few minutes turned into an hour. Ayden Jane got tired of waiting and decided to just go to bed (about 7) with no supper.

Friday: AJ had another full crazy day at school with a pajama party for the Polar Express, games, extra recess, art... all fun stuff. She came home and skipped after school snack and waited for supper until 6.

Saturday: Ayden Jane woke up about 6:30 as usual. The odd thing was she was in no hurry at all for breakfast. Now that's a miracle!!

Add to that a bit of an increase in energy (possibly boosted by the start of MCT oil today, but it was just a 1/4 tsp):

Sunday: She played 'cross country' with her babies before church.  Yep, she was running laps around the house (outside) taking turns with each baby. I have no idea how many laps she ran, but I know it was a lot. After church she swam for a couple hours and I thought she would be toast.  Nope, she came and asked me if we could take the dogs on a long dog walk.  Ummm no, but we can do a short one (as in a mile and a half) before candle light service. Off we dashed back out the door. Came home and from dog walking, and off to candle light service at church. You would think she would sit calmly with all that activity. NOPE. She wiggled and fidgeted her way through. We just got home and she is currently giving her babies rides on a stuffed horse all through the house. I honestly do not know when she will turn off this evening. I hope it's soon because I am tired!!

Wednesday, December 17, 2014

Ayden Jane's Surprise

Here is the video of Ayden Jane opening the surprise "from Dr. Miller" (remember I asked Dr. M if I could use her in an elaborate scheme to get AJ to drink water at school) Ayden Jane spent a couple weeks drinking an entire water bottle of water at school and thought that I was reporting each day to Dr. M. The kid just needed a little extra push and since she will do almost anything for Dr. M it worked like a charm!

I had told her that if she kept it up and stuck to her bargain of not drinking any fake sugar drinks except on her one day a week Dr. M would send her a surprise. In reality, I found a cute water bottle on sale and really wanted Ayden Jane be excited over the Hint waters so I packaged them up and told her they were from Dr. M.  I figured it was about time Dr. M got to be the good guy in all of this.:) Here is the result and many thanks to Dr. M for playing along. I think we can safely say we have made the transition to drinking water and have left the majority of the artificial sweeteners behind.  Yahoo!!

Ayden Jane's surpise

Monday, December 15, 2014

The Running Bug

I think Ayden Jane has caught the running bug. She has talked about running a few times and even ventured out to run a bit. She just wasn't sold. She would say when I am older...

Yesterday we were hanging around the house and Ayden Jane said she wanted to run a real race where she wore a number and ran with lots of other kids. I told her she had to at least be able to run a whole mile without stopping and then we could look for one.

She responded by saying well then lets go do it. Yep. She ran the entire mile and chattered away the whole time. She was quite proud of herself and is laying plans to keep working and get to run her first real race.

I am thinking about giving her entrance to a local race and a Fitbit to help with training for Christmas. Well, the race entrance is definite - still thinking about the Fitbit.

I am hoping to capitalize on the big kids being home and taking turns running with Ayden Jane. Maybe taking her to various places to keep it interesting. If they don't buy in I guess it will be a busy couple months of training for me!

I enjoy when Ayden Jane decides to do these sorts of things and challenges herself. That determination and drive makes me crazy sometimes but it truly is an awesome asset to Ayden Jane. She has no concept of a challenge too big to conquer. She just fearlessly takes things head on and is then so proud of herself when she accomplishes them.

I guess we are off and running!

Saturday, December 13, 2014

Making Progress

Major breakthroughs in liquid happening here. I know to the average person, getting a child to drink water is not a great feat. I can say that my other kids like water and drink lots of it. Then there is Ayden Jane. I don't understand why but I know it can be a PWS thing to just not like water. Not sure if it is the taste, the texture or something totally different but the combination of not really being thirsty (thanks again PWS) and truly not liking water makes it rough.

When younger and tougher to explain things to, drinking water was just not happening. I wish I could have avoided the use (and addiction) to 'fake sugars' along with all the rationalizing about which ones were more acceptable than others... Not sure if I had it to do again I would be able to do it differently.

On the flip side, so glad we took the stand now. Somehow the timing seems just right! We had two great accomplishments on this front this week.

First, we wanted to go out to eat at a favorite, local, family owned restaurant. We have been many times and Ayden Jane would drink diet coke or iced tea with splenda. We told her we wanted to go but we were just drinking water. She started to balk and come up with ways around...  I just told her we wanted to go but if she could not handle just drinking water than we just wouldn't go. She looked at Gary - She looked at Noah. Both just told her they were just drinking water too. She finally looked back and me and said, "sure we can do that." Again, I know it sounds a little lame to be excited about such things but asking a 7 year old to give up special things and stick to MORE dietary rules can be rough. Honestly, she took about 3 sips of water the entire meal but at least there was no complaining!

Second, on our walk home from school yesterday Ayden Jane was finishing up her water bottle. She had a fun busy day at school and had not had a chance to drink it all. As she was walking and checking to be sure Dr. M would still count it if she drank it on the way home she said, "you know Mom, I like the other stuff better but actually water is not terrible if you give it a chance."

Who knew, just getting her to buy in, a little bribing, nearly dehydrating and a solid week of water being our biggest goal in life would create the necessary breakthrough!  Whew!

Thursday, December 11, 2014

Fake Sugar Part 2

Ayden Jane is doing great trying to remove the artificial sweeteners from her drinking habits.  The only trouble I'm having is that she will just skip drinking all together as the answer.  Arrrrggghhhh.

I held out as best as I could for 4 days. I am trying hard not to fall back on a lot of coconut water or "spiked" water (spiked with juice) as I just do not want to trade one problem for another. (artificial sweeteners for carby drinks) At the end of the fourth day, I told Ayden Jane she could trade her fruit at supper for some apple juice in her water to make it taste good.  She went for it and sucked down about 20 ounces in 3 seconds flat...

So what's a mom to do when the choice is becoming carbs, artificial sweeteners or dehydration?

I knew that Ayden Jane had been coming home from school thirsty and downing an entire green tea or vitamin water or whatever. Now she would come home and grab a Hint water and say she liked it but ... a sip or two is all she'd drink. When I asked her about it she said she liked it but she just couldn't drink a lot of it at one time. So, that meant she needed to sip water all day long at school so that she was not already behind the game by the time she got home.

I designed  a reward system - okay, I resorted to bribery.  I sent a water bottle to school with Ayden Jane and the plan is that if she finishes the bottle of water throughout the day she is rewarded. Her teacher set a great start with giving her a penny (token reward system in her class) for drinking the whole thing and staying healthy. She drank it the next couple days and I told her that Dr. M is so proud of her for giving up the fake sugars and drinking her water each day at school she is sending her a prize! Dr. M was thrilled to find out that she was getting to be the good guy for once and was sending AJ a prize. haha.

I found a really cute kids camelback water bottle on sale and ordered a variety pack of Hint waters. AJ thinks that I report to Dr. M each day whether or not she drinks the whole water bottle and if she finishes out through Christmas the prize will arrive! I think "Dr. M" might even write AJ a note telling her how proud of her she is.

Hey, I figure Dr. M is the fall guy for me a lot. I guess she deserves to be the good guy once in a while.

Sunday, December 7, 2014

Fake Sugar

Okay, so it's confession time. Although I have done a good job keeping artificial sweeteners - fake sugars as Ayden Jane calls them - out of AJ's food, I have failed as it comes to drinks. I have known that they are not good for AJ but have rationalized my way through because she absolutely will not drink water.

Dr. M sent me an article the other day about fake sugar and the negative effects both short term and particularly long term.  She asked me to read through it with Ayden Jane as the answer to all AJ's questions about fake sugar. Then let AJ know she wants Ayden Jane off them completely!  Yikes!! And by off them she means all of them. No rationalizing that this one is better than that one...

So, I talked through all of it with Ayden Jane. You see that means no more diet green tea at home. No more vitamin waters, no more life waters.... Dr M suggested something called Hint waters. They are EXPENSIVE but are sweetener free.  As to what they are slightly (thus hint) flavored with I have no idea what but are not sweet at all. There is no sweetness to the taste but there is a mild taste.  I don't get it...  Luckily, I found 2 flavors at a store up the road and Ayden Jane gave them the thumbs up.  Whew.

Now Ayden Jane was ready to make a deal with Dr. M. No more fake sugars at home but when we go out to eat she can have the usual...  It was a nice try, but Dr. M gave her a counter offer. She could have fake sugars once in a "great while" when we go out.  Of course, "great while" had to be defined for little miss AJ. The answer brought tears... twice a month at most. Ayden Jane and I talked and negotiated and we compromised on once a week. I figure that is a huge win for me in that it really will add up to a big reduction. Dr. M told her she was proud of her for doing her best.

That's when Ayden Jane really got to me. AJ's response to Dr. M: I love you and I will do my best. I know you are just keeping me safe and healthy. I told Dr. M, I wish I could have gotten a picture of the expression on Ayden Jane's face as she said that. Just picture sad-heavyburdened-determinedtomakeyouproud-feelingloved. 

Wednesday, December 3, 2014

Pirate Voyage

I went on the first grade field trip today with Ayden Jane.  Her teacher asked if I could go because it was a dinner theatre sort of thing. Just imagine pirate acrobats, sea lions, Christmas story....  And lots more combined. The kids loved it

I was there basically to manage Ayden Jane food wise. The menu was pirate fare, all things eaten with fingers:cheese biscuit, potato wedge, chicken leg, corn on the cob and a cookie. They served the kids either coke or water to drink. Obviously AJ had water.

We knew the menu ahead of time so Ayden Jane had asked if I could bring her a couple things to replace what she couldn't eat. We are working on independence so it asked her what she thought. She decided I should bring a cheese stick and a square of dark chocolate.  She said she thought she could have the chicken and corn on the cob and cheese stick for supper and eat the dark chocolate when everybody had a cookie.  I thought it was a great plan and Ayden Jane did great.

The potato wedge was actually a half a seasoned baked potato.  Ayden Jane asked me about it and I told her that potatoes are a lot of carbs. She asked if it would shoot up her insulin and make her feel bad and not enjoy the show. I told her I didn't think it would cause too much insulin but that she really hasn't eaten potatoes before. She decided she would like just a piece of it to be safe and she thought she'd be okay because she wasn't even eating any fruit.  I told her that was great thinking and she did great!

I love watching her learn to navigate these sorts of things so well and set herself up to feel good and have a great time.

Tuesday, December 2, 2014

Return to School

I will back up and post some video of roller skating and other fun stuff we did over break but since my computer is in the shop and I'm not good at doing all that from the iPad I will move on to the return to school.

Ayden Jane has been getting frustrated with a program called accelerated reader. In this program the kids read books and then take tests to earn points. Her school does a great job with rewards and Ayden Jane wants in on those points!

She has done okay ona couple books but is struggling a little. My guess is that she is in a hurry to get points and does not read the questions carefully...  Then she gets so upset when she doesn't get enough answers correct.

She told me about it a few weeks ago but I did not communicate how frustrated she is with it to her teacher like I should have. So yesterday when she came out of the building she burst into tears. We talked through it and decided to go chat with her resource teacher. Her classroom teacher, mrs. C, would totally help too but since AJ has an iep but has yet to ever need support I thought I'd see if she wanted to tackle this one. Honestly I think AJ just needs to slow down and do a few well to get the hang of it. Then she should be fine.

In the meantime she will go at the end of the day to mrs. R's room and reread the book with her or the assistant and then they will listen to her take the computer test. Basically, make AJ read it out loud so she will slow down.  The cool thing is mrs. R has not started the program with her kids so Ayden Jane is going to "teach" her all about it.

This is all a perfect example of why Ayden Jane is doing so well. She is absolutely determined to keep up with the other kids in her class. It does not matter to AJ how hard it is sometimes she will find a way to achieve the same things!  Sure it's sad to see her cry, but I can't help but be amazed as the tears are never combined with thoughts of giving up. Just an expression of needing help to form a new plan.