Thursday, December 31, 2015

New Years Eve

The house is quiet as I sit here and count my blessings of 2015 and am amazed at how fast the years have passed.

Kayla has grown into an a wonderful young woman who takes advantage of every opportunity. She is driven to serve God and use her gifts to bless others. She has been home since graduating and is working as a medical scribe. In her spare time she volunteers for Make a wish and looks for ways to serve. She is working toward getting her Spanish medical translator certification and applying to Physician Assistant school. So glad to have her around for a while.

Noah has settled into Wheaton College and is doing great there. He had a good soccer season, learned the meaning of the word study, discovered the culture shock of leaving the south, and lots of other things. He is happy and following God leading toward the ministry. Not sure exactly where it will all take him but I know his talents are continuing to grow.

Mckenna is our teenager. She fits the definition of teen pretty well. She has so many talents it is a challenge for her know just what direction to head in. I think she truly wants to find ways to use her talents but has trouble knowing just which ones to hone. She is musical and artistic and brilliant and athletic. It will be fun to watch her sort through just what God has for her as she grows - of course, the guiding her along the way may make us all a little nuts.

As for Ayden Jane, 2015 has been an incredible year for her. With the help of lactoferrin we put extended illnesses behind us. She conquered handwriting, reading and 3 digit addition. She was not just on a soccer team but, at times, she played soccer. She has done so well in so many things I can't even list them all. I think my favorite thing from 2015, though, is that she has such an understanding that she is different from a lot of kids with Prader Willi Syndrome. She knows and understands what the syndrome is supposed to cause, but if you ask her she will tell you that none of those things are true for her. She has great compassion for others with PWS and wants them all to live free of the challenges. It's sort of like she feels determined and strong enough to not just take care of herself but wants to fix things for everyone else as well. At least she is willing to admit she might need a little help from Dr.Miller...

Somehow, financially, we are still scraping by. Some weeks I am honestly not sure how we will pull it off but here we are. I am still waiting for a job to come my way that is close enough to home that I can handle all Ayden Jane's needs and do an excellent job at work. I know that God's timing is the best but I am really, really hoping that 2016 is His timing!

Wednesday, December 30, 2015


Obviously time has slipped away! It has been a crazy Christmas season. Then again, when is a holiday season not a little crazy.

Wish I could say that we came through the season with glowing colors, but not so much. Food routines were thrown way off track. Supplements were missed. Way too much chocolate was laying around. Eating out, eating a bit too much and general over indulgence tends to be par for the course during the holidays. It's just that for Ayden Jane, those things throw her way off track.

I'm pretty sure Ayden Jane was thrown out of ketosis at some point. Why? Talking to her was a little like talking to a wall. She was looking at me but things weren't really going in. She was melting down over things that would not typically bother her. She was hungry and I felt like for the first time in a long time like I could not completely trust her around the kitchen.

Now I realize that on the larger PWS spectrum, Ayden Jane is still quite mild even when thrown off. Her version of a meltdown is to get upset, argue, go to her room and cry, then needing me to come and listen to her side/interpretation of the problem and then calmly with all the patience in my being walk her through how to move on. At the peak, we had to do this 3 times in one day. Hungry at this point meant that if she saw or smelled food she wanted some. With six of us in the family food tends to be all around so we were triggering this a lot.

The good news is that I wrote that paragraph in the past tense because she has straightened back out after just 2 days of getting back on track.

So, another two days have past since I wrote the start of this post. Things are looking great. Ayden Jane managed to pound out 19,145 steps on her fit bit in one day!! We are having great conversations and she is so much more relaxed again. Zero meltdowns in three days.

I wonder if I will ever stop being amazed at how much food, supplements and exercise affect her. 

Monday, December 14, 2015


Something about the holidays makes people feel the need to surround life with treats. We all know this. Before Ayden Jane, I knew this as it played out in wired kids, strung out on holiday treats. I knew that the school parties, church 'Happy Birthday Jesus" celebrations and visits to friends all were chocolate laden. It just came with the season and although I knew it wasn't the best health wise, I totally caved into it. It was a part of my childhood and it was just part of how holidays are celebrated. Right?

Now that I have Ayden Jane in the picture my view is much different. Ayden Jane does not understand the big deal around treats and she makes me realize just how much junk is handed out. We do not deal with nearly the amount of stress many families with Prader Willi Syndrome must deal with because Ayden Jane does not have the classic PWS hunger. I can tell the constant treat train is getting to her though.

Here a a couple stories that show just how much junk is around and a part of this time of year, how amazing Ayden Jane is and the stress that all the excitement about treats adds to her.

First up, last Saturday Ayden Jane participated in our church Christmas program. She loves being up front and being a part of pretty much anything. It's a pretty amazing production and they had an afternoon and an evening show to do which required a lot of hang out time, food decisions ect. I have to say Ayden Jane did great and all was awesome. I went to pick get her after she had finished her part so we could get home at a reasonable hour and the room of kids were all set to have pizza and donuts. Ayden Jane was leaving and not worried about the food but her leader was so proud of the kids and she wanted to let AJ know so she gave her 2 of the dark chocolates we have stashed there. Honestly, my first thought was, oh crap! We haven't eaten well as it is today and she does not need that before bed. Before I could even say anything to Ayden Jane she looked at me and said, "mom, I think 2 is too much. How about I eat one now and save the other for tomorrow." Great choice!!

Then she came home from school today with a note written by a classmate in her folder. It reads - Dear Ayden Jane, I hope people treat you better. I know it is hard being you. I'll bring you something special someday. Sincerely, L

Wow. I'm sure your mind is going all the places mine went. I asked Ayden Jane about it and she was reluctant to talk about it. Finally she danced around the event and as best as I can gather, another student brought in some treats and was sharing with the other kids. Something must have been said or done because the note was from a girl who felt it was unjust that treats were brought and given to friends and nothing was brought for AJ.

The funny thing is that Ayden Jane was most frustrated that L was determined that it was a big deal. Ayden Jane just kept saying that it wasn't a big deal and L just wouldn't believe her and leave it alone. I think the well meaning friend was just reminding her and everyone else that Ayden Jane is different and that bothered Ayden Jane way more than not getting a treat that she didn't even care about.

I let it go at that for now and we headed off to Mckenna's chorus program. Of course when we got there they were handing out candy canes. Ayden Jane starts with 'no thank you' and the well meaning person probes her as to why....  Again, I'm different must be booming in her head.

When we were home she asked Gary to read her book Gordy and the Magic Diet before bed. I think she needed to hear about other kids that are actually like her.

So in the end I am so very sad for Ayden Jane because all the holiday crap reminds her she has PWS and she would much rather go about her business in spite of that. But I am also incredibly thankful that Ayden Jane is not interested in actually eating the Holiday treats all around and is not bothered terribly about them. I am also thankful that there are L's in the world who want to fight for Ayden Jane. Of course, I wish that the pressure to eat treats in order to have a great holiday would evaporate and that people would realize that for Ayden Jane, food is just fuel. She'd rather you give her a hug and share a story with her than explain ... again... that the treat you are giving her is not in the least necessary and likely is just stressing her out. She knows there are too many, even if they are things she can have.

She is such an old soul for an 8 year old kid. In the end, she has us all beat. You see for Ayden Jane, spreading good cheer and giving gifts and the birth of Jesus and decorating your home and catching up with family ... don't require candy. They simply require a smile that shows the joy and wonder of the season. 

Sunday, December 6, 2015

Weekend Fun

Friday night we were all set and excited to decorate for Christmas, go look at Christmas lights, bake some cookies... You know, good old fashioned Christmas magic.

It all started great with Mckenna and Gary getting lights on the Christmas tree and Ayden Jane beginning to fill it with ornaments. Then some neighbor kids came by to see if Ayden Jane could jump on the trampoline with them. We sent her on out figuring they would jump for a little bit and then we could resume our plans. Problem was, Ayden Jane's nose lost a battle with the neighbor boy's head. It was her first bloody nose and swelled up quickly. After the bleeding stopped she just did not feel very festive and before 6:00 even rolled around she was sound asleep for the night.

Things definitely started looking up on Saturday morning. Ayden Jane got to put lots more ornaments on the tree and enjoy the morning with Gary. Then we headed off to practice for the church Christmas show she will be participating in. She had a great time there and stayed a little while after so Mckenna and I could finish helping decorate a float for the Christmas parade.

We grabbed some lunch on the way home and then took the dogs on a long walk. Next thing we knew she was back out playing with the gang and enjoyed the rest of the afternoon. She was thrilled to go out to eat with her grandma, aunt and uncle and ask 1,000 questions.

Honestly, she did great because she is used to eating supper pretty early. Typically by 5:30 or so. We did not get our food until closer to 6:30 and as she was at the table she kept saying - I hope the food comes soon, I'm going to crash. She was struggling a little and not feeling great but trusted the food would come in time and held it together. Of course, manners went out the window when her food arrived and she dove in! Good thing it was all family and no one cared!

Sunday was, of course, church day. After church and lunch we decided to go to the beach and Mckenna even said she was brave enough to go into the ocean with her! Ayden Jane was so excited. She changed right away (then played on the trampoline for a bit while the rest of us got ready) We took the dogs and walked a ways before Ayden Jane and Mckenna hit the waves. It was really nice out there and the waves were big. It is so funny when the dogs go straight out into the water after Ayden Jane. They were crashed by waves but didn't quit.

You would think the story would end there but as soon as we arrived home, Ayden Jane rinsed her feet, changed her clothes and was right back out there with her friends. We were supposed to run today but since it was 6;00 by the time she came in and she needed supper and a shower we put it off until tomorrow...

Hoping the great, fun day of activity will have her body and brain prepped for another amazing week of school!

Wednesday, December 2, 2015

Hooray for Leaps

As Thanksgiving break came upon us, Ayden Jane was still working hard in school but getting frustrated by a few things. Handwriting, still a challenge. Solving math problems with regrouping. Getting hundreds on spelling tests. Generally, just slowing her brain down enough to complete thoughts and not getting frustrated when things didn't come fast enough.

I am searching my brain for what we did over the break because her first 2 days back at school she has done amazing things!! Monday I got a text from her teacher talking about the amazing progress she is making. Last night (Tuesday) I sat with her as she did her homework - I just sit at the table and 'work' on something. She hates it if I hover but I hate it if she gets off track and we have to redo more than a problem or two.... Last night I did suduko on the ipad and watched in amazement as she correctly and easily added columns of 2 digit numbers. Yep, she knew just when to regroup (or carry) and was lining all the problems up beautifully. Then it hit me, not only had the math totally clicked but I could easily read everything (well, except the 8's) and I didn't have to 'hunt' for the answers. She placed them directly where they needed to go.

There was one she miss counted and was off by one. It was the next test. Typically, pointing out her mistakes begins the process of denying there is a mistake followed by being upset about it and concluded by the excuse phase of explaining how it happened and it wasn't really her fault. It's a pain. Not last though! Last night I told her I thought she miss counted because I go 16 (she thought it was 17). All she did was say really? Then add it up again and laugh that she miss counted.

Seriously. I alternated from just staring with my jaw laying on the table and thinking who I could tell that would get just how awesome this leap was!!!

She sat and did all her math homework plus some she must not have gotten done at school. Then she read. Then redid some sheet from school where she had to put in story elements into a grid and she actually wrote size appropriate letters that you could read! She followed all that up with 5 spelling sentences and honestly enjoyed the entire time. Calm, happy, focused...

I don't know where this is coming from but praying it stays around a while!