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!

Sunday, November 29, 2015

Physical Therapy Update

We are down to having physical therapy once every 3 months. Through the summer we were still at every month and worked hard to prepare for life without orthotics. In August we had x-rays to check on Ayden Jane's scoliosis at Shriner's and input on giving her a trial out of the orthotics. Everything looked great and she got the go ahead.

This was the first post orthotics visit and I can say Ayden Jane has kept very active for the past 3 months. Jen was super excited to see how great she is doing and there were nearly tears as she summed it up. Jen said, "I feel like we have worked for 8 years to get her to look exactly like this and she has done it. She looks amazing. Her tone and balance and symmetry are blowing me away."

We are so excited and she could point to things that were so much stronger - she feels as a result of swim team. I am not sure what has strengthened what but I do know that she has worked hard at swim team, spent lots of time on the trampoline, played soccer, ridden bikes, walked the dogs and just generally been as active as ever before.

Ayden Jane will have about 2 months off of swimming and soccer so Jen is going to give us a running plan. We just haven't had time to run with everything else so we plan to run during her 'off season'. I asked her to include some goals for distance running like we have done in the past but to also include ideas for speed workouts. Ayden Jane is actually excited about doing it and we will start in 2 weeks when soccer has ended.

Speaking of soccer, Ayden Jane is going to extend her soccer season by 2 weeks by playing with the kids who train and play travel soccer. It is going to be way over her head and I am a little nervous for her. I just want her to keep enjoying the sport and have no intentions of her playing with this group regularly. Ayden Jane is perfectly suited to a rec program. She heard about the chance to play and has a couple friends who play with that group so my fearless child is all in. Wish us luck.

Saturday, November 28, 2015

Happy Thanksgiving

We had a very nice, quiet Thanksgiving. Well, maybe not quiet since Ayden Jane has not been quiet since school let out on Friday.

It started with a nice surprise. Gary worked Wednesday night in the ER but was sent home early since they were not busy. That translated into him getting a good amount of sleep without having to sleep away most of the day. He and Ayden Jane made good use of the time and the beautiful weather. He took AJ and the dogs for a good walk. (We use the dogs as an excuse to walk Ayden Jane pretty regularly.)  After the exercise the rest of us joined them at Dunkin Donuts. Ayden Jane just goes along for the ride there, brings her own snack and sometimes gets a bit of coffee. 

Next on the list was to see if they could find a Christmas tree! They found a great one and by the time they came home, all that was left to do was to get a snack into Ayden Jane and most definitely throw her in the shower!

Holidays can be really rough on families who deal with Prader Willi Syndrome for a few reasons. First up is just the typical excitement that comes with holidays can make all kids a bit crazy. For those children with PWS who get anxious with change or stress, even the fun of a holiday can be more than they can handle. In Ayden Jane this excitement translates into her brain going even more fast and furious. It is both hilarious and exhausting to live with. Kayla asked her the other day about how many thoughts she had in her head. Ayden Jane answered, "Oh, I don't know. Probably about a bazillion."  For us, the key to handling it is getting her out and getting lots of exercise. We all know,or at least we are told of, the connection between the exercise and improved thinking. It is so clear in Ayden Jane. Whether it is getting her out to play before tackling homework or just getting her thoughts to settle and have great conversations during a long dog walk.

Of course, the focus on food is another struggle for many families with Prader Willi Syndrome. We are not completely immune to it, but it is also not a big struggle either. For the Thanksgiving meal Ayden Jane did awesome. She had a little bit of most everything and was thrilled with her giant turkey leg. She managed to eat about half of it and then was full and asked if she could give the rest to the dogs for their 'feast'. Gary and I took Ayden Jane out to the beach because there was a giant full moon and we searched for ghost crabs. It was beautiful and Ayden Jane was sound asleep within minutes of getting home.

Saturday, November 21, 2015

Another good week

Somehow we made it all the way around to Saturday again. I really do mean to write more often but this little one keeps me busy! Well, there are a few other things that keep me busy too...

Today was end of season soccer tournament day. Ayden Jane had such a fun season this fall and is really getting the hang of the game. Well, not so much in her actual playing skills but she is much more aware of what her feet should be doing. Her first game today she had two full field runs with the ball at her feet and one of them was actually in the right direction! She stepped up and kicked the ball a few times and she was just 'into' the game. The second game she did not play so well and was a little spacey. It was a long day at the fields. She had played the first game and then had some peanuts and played on the playground between games. I loved it though, that she hung right by her coach and asked to go back in and really followed the game and cheered when she was out. She had a wonderful time.

The coming days should be interesting. Ayden Jane was 'invited' to come train with the PDC players. Basically, they are the kids (or children of parents) who are more serious about the soccer and train more intensely. Honestly, the invitation was a nicely worded email that made it sound like she was chosen but I'm pretty sure they just sent it to everyone. Either way, Ayden Jane is all in. I am a little nervous because I want her to enjoy it but it will be over her ability a bit and she will not have any idea how to do a lot of the drills or games they do. She catches on to things a little slower than most kids but is determined. I'm just hoping they are patient with her and she completely enjoys it. (and mostly that the girls are nice to her!)

School is still going well. Ayden Jane has been a little stubborn about her spelling words. She learns them pretty quickly and can rattle off how to spell them out loud but does not want to practice writing them. Then she misses one or two on her test and gets really upset because, "but I know how to spell it. It shouldn't be marked wrong..." I think she made the connection this week and is ready to play in shaving cream or something to practice writing them. I think her brain just goes faster than her hand so she messes up when writing it.

Math is still challenging. She totally had the concept of double digit addition with regrouping...well until they taught the kids another method now she is stuck somewhere between the two. Ugh.

All in all, she is still motoring along an average kid in ability and way above average in work ethic, kindness and joy.

Saturday, November 14, 2015

A Good Day

Today was Saturday. It was a good Saturday filled with activity and friends and lots of outside time.

Ayden Jane was up at her usual 6 something hour. She had a snack to tide her over until a more reasonable breakfast hour and Gary, AJ and I all went out for breakfast. She was fired up after breakfast and asked me if she has so much energy because she had a big breakfast. Could be, Ayden Jane could be.

We took all the energy and put it into action. We went for a long dog walk. Which is, of course, code for a way to get Ayden Jane to take a long walk. Just a few minutes after we returned her neighborhood friends came and right back out she went.

Next up was lunch and present shopping because she had a birthday party to attend. It was sweet to see her friends excited to see her and hear the birthday girl tell her mom that she wants to invite Ayden Jane to come play at their house one day. The party was a great, old fashioned play games outside sort of fun. Ayden Jane played tag and hide and seek and red rover. So fun to watch her have a sweet group of kids to play with.

Once we got home and Ayden Jane says: Is it supper time? Me: no. It's only 4:30. Ayden Jane: oh, well can you get me for supper when its 5 something? Don't wait until 6 something because my brain will crash. With that she was off to play.

After her 5:45 supper she watched a bit of TV and fell sound asleep on the sofa. A near perfect day.

Sunday, November 8, 2015


Sometimes I get questions about whether Ayden Jane struggles with _________. You can fill in the blank with one of the many 'joys' brought to us by Prader Willi Syndrome. I'll work my way through a few of the typical ways in which the syndrome affects families. I say families because it is not just the person with PWS that is affected.

First up is food. That's the first one most people ask me about because at age 8, Ayden Jane should be feeling some of the effects of  'the hunger.' Honestly, I don't believe she deals really at all with hyperphasia. That is, I don't believe she is constantly hungry. Her day is not consumed with thinking about her next time to eat ect. I will say that doesn't really feel full like most of us do, so if not taught to understand a portion ect. she would easily over eat. It's an interesting balance and one where we just make food about nutrition. Being sure your body gets what it needs in the right amount to keep energy levels good but not extra because then it just turns into added weight which will slow her down.

Next is anxiety. I'd say this one gets us all. Her anxiety is not so high that it is visible all the time. It more just lurks under the surface and you just never know exactly what is going to cause it to break through. Today is a good example. She was at children's church and needed to use the bathroom. Someone cleaned up her spot and she couldn't find a paper that was apparently important to her. She burst into tears as she walked out. We stepped into an empty room for a minute and I told her to get it together and then she could go back and see if she could look more, or solve the problem with one of the leaders. Another classic time to see it is when she is pressed for time on something. Part of the point of hurrying a child is attempting to get them to have a sense of urgency so they will get with the program. Well, with Ayden Jane, if you hurry her that sense of urgency just turns to a panic that is similar to the book, If You Give a Pig a Pancake. Only in Ayden Jane's case, she always goes through a string of events that ultimately lead to the destruction of the universe.

Socially. Ayden Jane has come a long way on this one. When younger, she struggled mostly because her little brain just couldn't process things fast enough to keep up with the other kids. If you listen, you will realize that exchanges between small children are actually very quick and short. Sort of the polar opposite of the types of conversational exchanges Ayden Jane made when little. On the plus side, she has not really been excluded, just not really included. You know, no body moans because Ayden Jane is in there group, or they don't go out of their way to avoid her. Just that when someone is looking for a friend to do something with, seldomly do they invite Ayden Jane to be that friend. More in an oversight way than anything else. This is an area that Mom could do better and invite friends to come do fun things with us. For now, we are good because she has found a couple neighborhood friends where the friendship is very mutual. I think in the end, socially, Ayden Jane can learn social cues and rules to games and give and take with other kids but sometimes she needs a bit of help to sort it all out.

Behavior. Often times children with PWS have a lot of challenges with behavior. Whether it is the rigidity that makes it so hard to handle a change that comes up during the day or an underlying tiredness that many feel or something in the energy balance of food they have eaten or just the emotional instability that can come with the disorder... take your pick. I would say that Ayden Jane does feel many of these things to a mild degree but is cognitively sharp enough to talk herself through. For example when her schedule is disrupted at school for some reason, she just needs someone to give her the new schedule and she can see how it's going to work. Or if snack is missed in the morning she can plan for herself when a good time to have it will be. We are very thankful that by and large all we hear from school or other places Ayden Jane goes is how well behaved she is.

Attention. Kids with PWS often struggle with attention. In Ayden Jane it is most evident in large groups. She simply cannot screen out all the 'extra' stuff so that she can concentrate on what she is supposed to be listening to. This makes instruction a challenge in whole group at school sometimes. Many kids with PWS end up needing some form of medication to help them focus well enough to keep up with their peers.

Motor Planning/processing speed. Yep. This one hits us. Learning to get her body to do something takes extra work. Ayden Jane cannot easily watch you move a certain way and repeat it. When she tries to climb or do something for the first time it is super slow. With repetition and cuing certain muscles she can learn to do most anything but nothing comes easily and each thing needs to be taught. Additionally, when trying to play sports like soccer, the amount of time it takes for the thought to reach her feet and make her feet move is just too long.

Temperature regulation. This is a weird one. I'd say it doesn't bother her a ton, but when she gets too hot - it's all she wrote. The odd thing is how quickly she overheats when it is cold outside and she is wearing a coat. Something about keeping that heat in throws her thermostat way off.

Decreased pain sensitivity and body awareness. We choose to spin this in our favor :) Ayden Jane will try things without fear and when she falls she can brush it off like no other. The body awareness thing just means our toes are often stepped on, doorways often run into, things spilled and, well you know the term bull in a China shop.

All of these things just add up to a life that is a bit harder to manage. Learning and playing are just a bit harder for Ayden Jane than other kids. Handling disappointment is harder. Excelling is harder. Living with her is harder. She takes a more time to do everything...., our days need to be a little bit more planned, her needs are just a bit more urgent. Basically, as her family, we just always feel that heightened need for vigilance.

I can say, though, that with the added concern and effort comes an amazing joy. Every accomplishment feels like winning a championship. Being a part of a kid who lives life with every ounce of her being is contagious. Yep. she rocks. She is happy. She loves life and is thrilled with all she CAN do and is pretty sure she can do anything if she works hard enough. God has placed such a sense of worth inside her that a confidence just pours forth. She is a walking billboard that says, I am a child of God and He has made me exactly as He wanted - perfect, PWS and all.

First Official Report Card

Ayden Jane is in second grade and at her school this is when "real" report cards start. She gets a number grade for Language Arts and for Math. Personally, I think it is a bit silly to spend the teachers time and efforts with grading students so young but at least they just stick to the two subjects. Science and Social Studies is still the good old fashioned check system. Yep, they learned the skill, nope they didn't...

Now there are a couple of ways for me to look at this transition. I can worry that Ayden Jane gets the very best opportunity to get high grades. I can set it up in such a manner that she gets to go test in a small group setting to she can ask questions as she goes through. I could even put it in her IEP to modify the tests or allow her to retake tests...

My approach? None of the above. I have taken the approach with Ayden Jane that I will allow her to do things with as little help as possible and see the extent of what she can do. This does not work for lots of kids but I find that for Ayden Jane it works best. Mostly because I still tend to underestimate her. I wasn't sure how I was going to approach all this grade stuff until I had a conversation with her teacher. She asked me how Ayden Jane would handle it if she did not get A's? Hmmm. Good question. I wasn't sure of the answer, but I was sure that I didn't want Ayden Jane to be caught up in 'grades' that young. I wanted her to stay caught up in learning. Her approach to school so far has been to do her best and learn. She measures if she is learning enough by whether or not she is learning what she needs to know to go to the next grade.

So, in that simple question of, will she be okay if she does not get A's? One thing I knew for sure was that if I made school about the grades it was going to be a long ride. No matter how smart a child is, getting all A's all the time will make one crazy. So I knew that I did not want to set the expectation in Ayden Jane's brain that A's are what school is about. Additionally, if she got all A's the first time, then it would be set in her brain that all A's would come in every report card. Yeah... don't want to deal with that.

I could go on a rant about society and all kids being rewarded and how everyone is a winner.... but I'll just leave it to say that some kids are A students and some are not and I am totally okay with grades less than an A if it your best work. For Ayden Jane that may be A's at times and it might be C's at times. In the end, who cares.

So for Ayden Jane's very first graded report card, how did she do? She had a B in Language Arts and she had a C in math. She was just 3 points shy of a B in math and she conquered some new territory and worked really hard for that 82 so we are very proud of her. Her teacher gave her the class "Hard Worker" award and if a kid ever deserved that award it is her.

The best part is she is proud of her report card and the fact that she works very hard. She says she hopes she gets on the A/B honor roll next time but mostly she just wants to keep learning. I'd say that's a perfect attitude.

As for the extra help? The time may come but seriously. Ayden Jane just started a new school year - newness always throws her. She is reading well and doing all the Language Arts on her own with zero extra help or help on homework and she got a B!! She worked her tail off in math and is understanding concepts and thinking mathematically pretty well. She always makes mistakes like miss counting and gets things wrong on tests because of that but I know that she understands the concepts and she got a C all by herself. She is in a typical classroom doing the same work as typical kids and is doing great. I'll take it.

Wednesday, November 4, 2015

Happy Halloween

Whew. Halloween has never been my favorite. I'm sort of boring, I guess, but I'm not that into dressing up and I am the biggest chicken on the planet when it comes to creepy stuff. Candy was great as a kid, but as a teacher and parent... not so much. Then throw in a dose of Prader-Willi Sydrome and you have pretty much crushed the rest of anything about Halloween that I might like.

So, how did this year go? Actually, other than Halloween having become a week long celebration, it went pretty well. Ayden Jane was invited to Trunk or Treat which we skipped to go to soccer practice. Next up was a class party which I neglected to find out the menu for, so I just stopped by and worked it out. Then there was the school fall festival Friday night, followed by trick or treating Saturday night and a church fall festival Sunday. Like I said, whew!

The fall festivals are not really big on candy so that is great. A little popcorn and lots of bouncy houses and she's happy.

Trick or treating she actually does really well. She walked a bit more in years past keeping up with Mckenna and her friends but she still covered a couple miles this year. She loves the whole process. Everything from dressing up to seeing what candy she gets to chatting with her friends and seeing what all the other kids are dressed as. Her goal in the night is to collect enough to get a good toy from the Great Pumpkin. Somehow she has gotten it in her head that the more candy she leaves out the bigger the toy. Funny.

It was cute this year as she told her friends about the Great Pumpkin coming to her house. They got excited and asked their parents if the Great Pumpkin would come to them if they put their candy out.

After we got back, Ayden Jane hopped up to the table and dumped out her haul. She carefully sorted - looking for the few things she received that were not candy. Next she selected a few pieces of candy for her siblings. It was really cute, actually, as she called to me to ask things like, "Are Reeses Mckenna's favorite?" (by the way that would be yes.)

After a while it struck me as pretty cool that Ayden Jane was sorting her candy in the next room and her only concern was that she picked out the best 3 treats she could for Kayla and Mckenna. No thought of trying to sneak pieces. No negotiating with me over if she could eat one. No stress about the candy at all. When that task was complete she packed it all back into the canvas bag and put it out for the Great Pumpkin.

Thursday, October 29, 2015

Shoe Tying

Tying your own shoes is a sort of rite of passage. It is something most kids can do in Kindergarten or first grade and it has been driving Ayden Jane crazy that she could not conquer this one.

She has worked long and hard in OT. She says they do picture cards that she has to lay them out in sequence and then follow. She was finally able to do it in OT with the nice fat easy to use laces that were not attached to her foot. She was so excited and was sure she could now tie any shoe, anywhere, any time. Not so much. It was a long morning before school the day after she finally was able to tie in OT. She had herself set up to believe she would be tying her own shoe for school then next morning. After and lots of tears she finally moved on ... sort of. Enough to let me tie them and kick her out of the car to school.

Finally, on Sunday, the day after she ran with Dr. Miller she sat down and put on her own shoes and tied them!!! We were getting ready to walk the dogs and she just did it. I wasn't even in the room - easier on my nerves that way. It wasn't a quick process but she did it. Our OT lives in the neighborhood so we took the dogs and stopped to knock on her door on the way by. Ayden Jane was so proud.

Now, every morning before school she takes care of her socks and shoes totally on her own. To some that may sound pretty boring, but for us it's like having won the lottery!! One skill at a time, she will do it all. 

Wednesday, October 28, 2015

Fast and Furious

Fast and furious describes life these days.

First of all just in Ayden Jane's schedule. She leaves for school about 7:20 or so and gets home about 2:45. Early is actually good for her so we are good there. She has lots of after school activities - Monday: swim team, Tuesday: horses, Wednesday: swim team, Thursday: soccer, Friday: as much out door play as we can find, Saturday: soccer game, Sunday: church and evening church club. We slip in long dog walks, trampoline and other fun with the neighborhood kids and board games with Dad whenever we can.

Then there is homework. Ayden Jane is totally keeping up in second grade but I will say homework is not taken lightly. Spelling she can whip through, other than she needs to take some time to be sure her handwriting stays legible. Reading she loves to do because her teacher set her up on a computer program which allows her to read leveled books and moves her up gradually in the system they use. (Fountas and Pinnell)  She is so goal oriented it is perfect for her and she does it 100 percent independent - usually at the table while I make supper. Lastly, math. She finds the math most challenging. It is interesting to work with her on it because sometimes she just gets it and she gets so tickled and just grins from ear to ear. Other times I'd have better luck explaining it to the dog. Usually, just about the time I think maybe she is never going to get it, the light goes on and she flies through the rest of it.

I had her teacher conference just before we headed out for the race. One concern is getting focused and completing tasks in a shorter time frame. Mostly this applies to math. I think Ayden Jane is a little unsure in the math so she is a master of finding other pressing issues - like the need to have the perfect tip on her pencil or to throw something away.... Yep. Pure procrastination. The other thing is that her teacher notices it can be hard for Ayden Jane to focus during a large group instruction. I am sure this is that part of her that struggles to screen out all that is going on. It's the same part that was so overwhelming when she was little that she never spoke and sort of shut down in new places. Like everything in the room is really loud and really bright and she has a hard time making unimportant things fade into the background and focus on the important things.

Her teacher is great and will help her work through these things. Also, I talked to Dr. Miller about the attention piece as I know lots of kids with PWS need help in this area. There are a few medications that seem to have good results. We are definitely not there yet, but it is nice to know there are options as she gets older if the distract-ability gets in the way of her learning.

Lastly, my biggest hope is that the Oxytocin study Dr. Miller wants to do gets off the ground. The things that the results of the phase 1 study indicate as I understand them, seem like they would make all of this that Ayden Jane works and has worked so very hard to gain come easier. It could come for her, like it comes for typical children. Her playing field could be leveled and she could not always be running up hill.

Monday, October 26, 2015

So. Much. Fun

Getting ready for the big race! Kayla and Ayden Jane at the start!  Kayla tried to get Ayden Jane all fired up and showing her muscles... Couldn't get Ayden Jane stop smiling.

 This was a little pre race chat. I wish I could remember what they were talking about. Obviously Kayla and Ali thought it was pretty funny.

Out on the course. I think Ayden Jane could talk all day!

Out on the course. 10 obstacles of various shapes and sizes. So that means Ayden Jane covered 3 miles plus 10 obstacles and she loved every minute of it. Not saying we ran all of it but I can say that she ran most of the first 2 miles. The third mile the hills definitely were winning.


And the whole wet, muddy crew! Such a fun day for all.

I wish I had a picture of Dr. Miller diving down the slide right beside Ayden Jane. They'd look like super heroes flying off together.

Saturday, October 10, 2015

Out for a Week

This time last week we were hunkered down and the rains were falling. We ended up out of school the entire week this week as parts of our county are still under water. Basically, the falling rain and the high tides caused the first wave of flooding. Pretty much everywhere saw double digit rain totals and some places even saw upwards of 2 feet of rain. Once the original flooding from the rain as it fell and the high tides caused by Joaquin passing by, then the rivers began to rise. All that water from Columbia area that was hit hard with flash flooding made it's way into the rivers that wind through this county on the way to the Atlantic. The aerial photos and videos are incredible. Main roads turned into rivers, entire towns under water, other communities completely cut off from surrounding areas by water.

It was strange here at the beach side of the county. The sun was out and the weather was beautiful. Things dried up and we even had Ayden Jane's first fall soccer game. In my mind, though were friends whose homes are now filled or even submerged in rivers that will take another week to return to their banks. People who lost everything. Roads that are entirely impassable. Lives completely disrupted.

So what did we do with our week? We played hard. We walked, Gary and Ayden Jane hit the ocean - for long swims. We ran a tiny bit. Kayla went on a bike ride adventure with AJ to the local rec center and Ayden Jane worked on climbing the rock wall. The swam some more. The neighborhood pack came and the kids bounced on the trampoline. They rode bikes and scooters and were a happy pack of kids roaming the neighborhood like days of old.

We also played the board game trouble. It was hysterical to watch Ayden Jane's brain work in over drive on that one. She does have a magic touch with the dice, though, and beat us all!

All in all, we made it a great week. Gary is off to Wheaton to visit Noah next week and then soon he will be swamped with work. It was great that he and Ayden Jane got to spend a lot of time together. Some interviews for me coming up for some part time work and the holiday season will be upon us. Yikes!!

Thursday, October 8, 2015


This is one of those posts that is a little tough to write. Not so much because it is complicated but because there are a lot of conflicting emotions and opinions that are running through my mind as I try to put the words on paper.

It starts with the simple fact that Ayden Jane is doing great. Because of that fact there are parents who want to know our 'secret'. There are parents who have told me, "be thankful things are good now but just wait." I have had her genetic testing questioned.... These and more like them are easy to answer. Our secret? I am doing everything I can to tell people what we are doing with Ayden Jane and I am happy to do so. More and more is being learned all the time and I am hoping and praying for the kids younger than her - that they will do even better. Be thankful and 'just wait'? I am always thankful that Ayden Jane is a part of our lives and the older she gets the less concerned I am about 'just wait'. (btw, that one did get under my skin for a long while. What a cruel thing to say to a parent) Her genetic testing? Haha... yep, and thanks for the compliment.

The only comment that I get that still REALLY bothers me is, "don't give parents of new diagnosis false hope." At first I worried that maybe they knew something I didn't. That maybe I was somehow lying or setting these new parents up for more heartache. That I was doing something wrong. I mean, for the first year or so after diagnosis I was reading and learning on my own and making decisions on supplements and diet by how Ayden Jane responded. It just made so much sense and AJ was thriving, but in reality I was 'making it up as I went'. What if I was wrong?

I decided after a while that some of the confusion was in the definition of hope. I would say Ayden Jane offers wonderful hope. She is not a guarantee, but definitely hope.

For those who have been blessed to never experience giving birth to a child who was diagnosed with a genetic syndrome, let me explain what happens at diagnosis. A doctor calls you or brings you in for an appointment and explains to you that your beautiful child - the one you carried for 9 months, have dreamed about what talents they will have, who they will look like, whether they will be shy or outgoing... is missing some genetics. Then he/she begins to describe who and what your child will become, generally in terms of all the ways your precious gift will be limited. As a parent you simultaneously have all your dreams thrown out and replaced with a fear like you have never known.

We received the call. We sat in the office and heard all that the textbooks say. I took to the internet and read so many things (google at it's worst). What I remember most about those first weeks was looking at my 8 month old and trying to make sense of it all. I wanted to find someone, somewhere that could show me there was even a chance that it would all be okay. Back in that day I found a yahoo group of parents who did not accept that there was nothing to do but lock up and hang on. I read and learned and slowly dared to hope.

So I write about and share our crazy life with Ayden Jane and all that we have done because I truly believe Ayden Jane offers true hope. Just like with the birth of any child, there are no guarantees that Johnny is going to grow up to be president but as parents we are free to imagine he might. What the diagnosis of Prader Willi Syndrome tries to take away, Ayden Jane and the growing host of other children with PWS that are defying the text books are giving back. - Hope.

There will be hard days, you will learn things you never wanted to, you will find a new family you never asked for, your heart will burst with pride as your child learns hard fought skills - these are the guarantees. So hang on to the hope of new research, amazing families with happy, incredible kids and allow yourself to dream big for your child. I look forward to hearing about the amazing lives they will live and the joy they will bring.

Tuesday, October 6, 2015

Little Things Big Lessons

With all the crazy inside time and water and lack of schedule... Ayden Jane was a little nuts this morning. She needed to get out and run around and swim and play until she dropped. It just calms her. Calms her physically and calms her mentally. Pretty sure that's true for all of us but she can just bring it to a whole new level.

So, she and I walked our mile and half. It didn't really even put a dent in her energy... Gary was my hero and took her to the ocean. They swam and were crashed by waves and played with the dogs for an hour. Ayden Jane's smile is bigger, eyes brighter and entire disposition wonderful.

After all this she headed down to the neighbors to play. Shortly there after I got a text that read, "KG gave Ayden Jane a piece of candy. Should I be worried?" My response was no, but please send AJ home so I can give her an earful...

Ayden Jane came through the door and I let her get out her side of the story. Her friend told her that it was made of apple. We all know that Ayden Jane can not be fooled that easily unless she wants to be so I went with the question - Did you know what you were eating? She answered no, not really. I made it very clear that if she did not know what it was then she obviously did not know if it was safe to eat so she made the wrong choice. Next question was, did you need to eat anything at all? Her answer was no, she wasn't even hungry-just curious. I added that I know it is hard to always make the right choices but if she wants the freedom to go her friends than I have to be able to trust she will make the hard choices. I made it very clear that if she can't do so she will be staying home for a good long while until I feel like she is able to make good choices. Losing independence is a fate worse than death for my independent little soul.

She agreed that if she does not know what something is she will ask an adult or text mom. 

Next we talked about how these sorts of situations will come up and that I know her friends are not trying to hurt her, just being nice and sharing with her. She said sometimes she just wants to take something because she doesn't want to make a deal of it. We talked about things she can say in response. Plain old no thanks...  or I don't know for sure what's in that so I can't eat it, lets go play. She liked that.

In the end, one small piece of apple candy is not going make a bit of difference so hopefully we have learned a great lesson in a safe way.

Monday, October 5, 2015


Whew. So. Much. Rain.

Ayden Jane has been pretty good. We have been stuck inside for weeks days. It did feel like weeks though. I hear the sun will be out at least for a few minutes tomorrow. I will be so glad to see it.

Things are bad in South Carolina as a whole. The amount of rain was unbelievable. Our yard is quite wet and puddle filled, but our home is dry and cozy so we feel wonderfully blessed. We do know many others, however, who are not dry and whose home and/or businesses have taken a hard hit.

Roads are a big concern. Bridges in particular... Gary made it to work fine on Saturday afternoon but went with extra clothes just in case. Well, getting home on Sunday was not possible. In fact, I saw video later that day of boats patrolling up and down the highway. Monday he made it home but the bridge to get back across the Awendaw creek was closed off and on depending on the tides and other features. He could not get back to work because even the 2 other ways around have washed out bridges... Luckily, they had people to cover and he is not due back in until the end of the week.

Lots of people have also been stuck out of town as even major interstates have been closed. At one point 70 miles of I95 was shut down. Columbia is the capital and most all major roads go through the town which was hit with so much more water than it could handle the infrastructure is a mess.

Ayden Jane asks about the flooding and if people are okay. She wants to know if we can help them. Not sure what we will do but we will have to find some way to help clean up or donate or something.

Looking forward to getting back to school hopefully Wednesday after being stuck inside for the most part Friday - Monday and out of school Tuesday as well. We need to get back to some serious exercise and I think it starts tomorrow!

Thursday, October 1, 2015

8 Will be Great

Just pictures of the transformation...

On oxygen, monitors, non responsive ... 

Just before diagnosis at 8 months
oh, the rolls

On my new diet and coming to life! 10 months

Eating well, learning tons and getting mobile! 13 months

Constant motion, always on a mission - 2 years old.

Vacation to Texas, loads of personality - 3 yrs old

Still on vacation and showing off my love of all things wild.

4 year old preschool!

First day of Kindergarten at "Big School"

Ringing in the New Year 2015 With my Family

Ready to rock second grade!

Tuesday, September 29, 2015

FPWR Confernce

As always, we had a great time at the FPWR conference. I think at this point the conferences have become a bit of a family reunion. You see some of the same people each year and put real live personalities to the names and faces you have become so close to through technology. 

I remember the first years, the science blew me away! I could not believe how many scientists were working on helping our little Ayden Jane! (okay, and all the other kiddos) At this point, the exhaustion from so much information on Saturday was not as bad as years past so I guess that's progress.

This year we arrived a bit early to help out where we could and because our flights worked out better that way. We did not know there was a 'science' day ahead of the conference - likely because we are not scientists. But Kayla, in particular, wanted to listen in. I asked permission and we slipped in the back for the second session. She loved it. I followed some of it but much of it lost me. Still it is oddly comforting, even if I can't comprehend exactly what they are doing, to know that there were so many scientist on the job. The room was full and they were kicking around their ideas with one another. Love having all that brain power on the job of making life better for people with PWS.

At one point in the conference, Kayla asked me what was on my page or blog or whatever because everyone was so excited to meet her. Then she realized that someone was mistaking her for "Ayden Jane's mom." We thought it was funny and didn't think much more of it. After a few more cases of mistaken identity someone pointed out that Kayla was my profile picture on Facebook so naturally people thought she was me. We realized, back in August, I put her picture there for her birthday and had just left it. It's Ayden Jane now... no one should think she is me.

Once the news was out who the real me was, it was really great to meet so many new families. I started this blog a long time ago because there was so little out there as to how day to day life might go. There was not much online about kids doing well with PWS. I just wanted to know it was possible that Ayden Jane would manage an awesome life with PWS. I didn't need a promise it would all end up rosy. Let's be honest, there are no guarantees with any of our children, typically developing or not. The thing we love as parents is that they are born with endless possibilities. We love to dream of what they might become. I prayed God would bring some people across our path to give back the hope that a great life was possible. I searched long and hard and God provided a couple glimmers of hope I and clung on tight.

Sunday, September 20, 2015


I am heading out of town to the FPWR conference on Thursday with Kayla. Gary will be staying here and manning the home front for FIVE days!! He will still work a couple of nights and I am in the process of making arrangements for Mckenna and Ayden Jane.

Today I wrote out Ayden Jane's supplement schedule. I was sort of shocked!! I don't feel like it is that much to manage because I just do it - almost without thinking and if I forget or mess up something Ayden Jane sets me straight. I get a lot of questions about what and how much.... I give Ayden Jane so I figured I'd post it here:

Morning: Mixed in avocado and a squirt of honey.
                      1/2 capsule of acetyl carnitine
                      1/2 capsule of iron bisglycinate. 
                      7.5 mls of MCT          
                      heaping tsp of flax meal
                Taken in pill form or whatever - just hand them to her.
                      1 laktoferrin
                      1 carnitine fumarate
                      1 probiotic
                      1 b12 chewable cyanocobalamin
                      1 b12 strip methylcobalamin with biotin
                      1 packet coromega fish oil with Vitamin D
                      7.5 mils MCT oil
                      1/2 tablet of PharmaNAC in 6 oz. water

Lunch:  10 mls MCT oil in milk with lunch.

After School: 1 carnitine fumarate

Bedtime:  2 lacktoferrin
                 1 carnitine fumarate
                 gh 0.8

Yep, It takes all of that and a careful diet to keep this kid firing on all cylinders. Her routine has changed a bit over the years and I make adjustments as I see issues. Right now though, we are in a sweet spot and she is doing so amazingly well.  

Wednesday, September 16, 2015

Things are Good

Several updates. Made it back to the dentist. Ayden Jane is not great with brushing her teeth and, of course, PWS kids are known to have not so great teeth but she still has a great report. Victory! She will need braces, but that just makes us 4 for 4.

Today we headed for Storm Eye Clinic down at MUSC. Ayden Jane was on a mission the past 6 months to wear her glasses faithfully and was hoping to get a reduction in her prescription today. Alas, she is close but she will be sticking with the same prescription for now. She's a little disappointed but honestly, was is such a goofy mood while we were there she took it well.

After our eye appointment we headed up to the genetics clinic to see the doctor who diagnosed Ayden Jane 7 1/2 years ago. I think the last time he saw her Ayden Jane was 3. I have emailed with him a few times and we have touched based over the phone as he has asked if I would be willing for a new diagnosis to give me a call. We didn't have an appointment, he said to just stop by. Little did I know he was going to bring in 3 residents and basically tell them, "this is what Prader Willi Syndrome can look like when it is it well treated with the current protocols." They chatted with Ayden Jane, who suddenly became shy, and I answered a few questions and talked about her diet.  All in all a good visit.

We finished up at the hospital before noon and then headed to grab some lunch and picnic at a playground with some friends that live down that way. The weather was great and Ayden Jane had a good time.

School is still great and Ayden Jane seems more and more settled. This week she did well on her spelling pretest so she will be tested on "the hard words." She's pretty proud of that fact.

Things are good.

Thursday, September 10, 2015

No More Yellows

Still haven't had physical therapy since we have donned the new shoes and gone without orthotics.  I think by the time Mrs. Jen comes back to visit she will have been going strong for about 4 weeks. Hopefully that is a good amount of time for Jen to use her super powers to see how things are being affected.

Ayden Jane asks me once in a while how I think her legs are doing. As far as I can tell, all is good. The biggest trouble I'm having is finding time to keep walking and running. I also think that the shoes will break down and part of the no yellows policy will be new shoes fairly often. I guess that's not surprising as Ayden Jane has little feet for an 80 pound kid. That means she does not grow out of them often and, let's be honest, the shoes are made for a lot less weight.

So why the trouble finding time to walk and run? All good reasons. Ayden Jane is a busy kid. She has school, swim team, horses, homework, church, soccer and friends to play with. She is loving life and doing great in so many areas.

We went to Atlanta over the Labor Day weekend to attend a wedding. (an amazing wedding by the way) Travel is always interesting with Ayden Jane. I have to say that I feel like we have passed that point where it is truly stressful. We traveled 7 hours Sunday, then spent the entire evening at the wedding and Ayden Jane did amazing. We did manage to get a dip in the pool Monday morning but much of the morning was spent chatting with old friends and things that held no activity for AJ. Then it was 7 hours back home. She handled it all beautifully and when we got home she said, "mom, I think we should take the dogs for a really long walk because they need and you and I need one too."

She walked fast and long with me and was right back in the groove. Weight has totally maintained even with travel and lack of activity. She was hysterical in the car keeping us all laughing the entire way to Atlanta.

Wednesday, September 9, 2015

Second Grade Update

Wow I am overdue with an update.

First up school. Second grade is hard. Well, mostly it just doesn't leave time to settle in and get used to things before the academics really kicked in. Ayden Jane's little head is spinning with how, where, when, who, order of events in her day, new friends, new schedules, new....

I have to say she is handling it all quite well - better than expected as usual. When will I learn.

Her reading is her strong suit. Not that she is way ahead so much as she is on target and it is not hard or draining for her. Her comprehension is good and she just plain likes to read. Of course, handwriting plagues her still but she is working on it. Math has also stepped up a notch in second grade from first.

She really struggled at first with the math and started to concern her teacher. She tends to panic a bit when she doesn't understand something. Her teacher, Mrs. R, has been awesome... she pushes her through with encouragement and doesn't mind the mini meltdown. I have told Mrs. R to set the bar high and Ayden Jane will work harder than any second grader you've ever met to reach it. So far that has held true.

It is interesting with Ayden Jane. She trusts people who push her. I think she just knows somehow that people who expect a lot and push her to do things are pushing because they believe in her. She actually doesn't trust people who go too easy on her. She doesn't really like when people are too quick to help her. She gets very stressed in these settings and upset that they "don't think she can do it."

I will say, over all, Ayden Jane is learning to be a little less tuned into what others are thinking or searching for the hidden meaning in every word, expression or movement. It think as she learns to read things like tone and expression a little better she worries less about them. It struck me the other night that she hasn't questioned me about my expression lately. You know, "are you mad? Why do your eyes look like that? What are you thinking? Are you happy?..."

Shoes/yellows update tomorrow.  

Friday, August 21, 2015

Second Grade!!

Not the greatest picture but here she is. She is all set for second grade!! New backpack, new lunch box, new glasses, and of course, new shoes - without 'yellows!"

Ayden Jane had a great first couple of days. As I type, she is sacked out on the sofa because going back to school was exhausting! It will be a challenge to have school, after school activities, homework and time to play with her friends!

As far as school goes, she is in a regular second grade classroom. She will be pulled out to work on OT skills but other than that she is typical second grader. She does have an IEP, primarily so that she can receive OT, but also as a back up plan for her deficit - writing skills.

The plan with her teacher now is to just expect her to put in the extra work and effort to do all the same work as the other kids. At the same time, on things like homework, I can alter assignments a bit because, let's be honest, she NEEDS to do the activities like swim team and horses ect. So the plan is that we need to turn in homework every night but on things like - write a sentence with each spelling word, I can sometimes let her dictate some of them. Or when she needs to write her spelling words 3x's each, she can do some of the practice in shaving cream and I can just note the paper she turns in. We will see how it goes.

Ayden Jane has a friend sitting next to her. He is a boy she has known a long time and is super comfortable with (sort of like a brother or cousin type friendship). She doesn't need a lot of help, but gets frustrated when she can't open things or flip through things fast enough to keep up. She has informed me she really likes sitting by C. I guess it is always good to know the kid next to you has your back.

Her class has 10 boys and 7 girls and she goes to recess with a few of her friends from last year. All in all, I'd say she is ready for a great year and to meet some high expectations. I figure I might as well expect her to meet the high expectations because if I don't she will just surprise me.

Sunday, August 9, 2015

She is Different

This post is one of those that is rattling around in my head. Parts of it are clear and parts of it make me feel awkward. Here we go anyway.

A couple days ago I was at Shriner's Hospital for Children with Ayden Jane for her scoliosis check. It was awesome. Her curve is measuring 8 degrees but the doc was very impressed with the progression of Ayden Jane's x-rays (honestly, he lost me in that conversation).  He was very surprised by her tone and improvement in her core. He asked what we have been doing and Ayden Jane piped up that she works hard with Mrs. Jen to keep her body strong and straight. I told him she swims, rides horses and we have added running. He was very interested in the story of how things started after the winter she lost her tone and the right leg seeming to be the key. I think he and Jen would have a great conversation about it all.

What really surprised me was after we finished the orthopedic talk, he asked me, "What else are you doing because I have had many patients with Prader-Willi Syndrome over the years and she is different." It took me back a bit for a minute. Usually, I hear she is doing great and is on the mild end of the spectrum....  His simple statement and later expansion to include, "she is not just mild PWS, there is nothing about her that presents as PWS. She is different."

That phrase just keeps rolling around in my head. It still jolts me a little. I mean, I know Ayden Jane is doing fabulously right now but to me, she is just a kid who has worked hard but still fights PWS. It makes me thrilled to hear and at the same time breaks my heart for others. I mean, if she is different - then how do others shift from PWS to different. I mean if she is mild, then others can sort of slide down the spectrum and join her. What does it mean if she is different? Is there a track to jump? How exactly did we make the leap?

It was fabulous confirmation of all we have done over the years. Sometimes I wonder if the time and effort and financial sacrifice of staying home to sort all of this out over the years was worth it. I start to get on myself about how I should really have been able to find some sort of work to fit in with it all to ease the pressures. In the end, I know that God has His hand all over this. I pray for wisdom as I tweak things with AJ and as I attempt to help families who are a few years behind us on this path. I pray that God will use us as He sees fit and I am doing my best to trust Him to guide our next step.

She is different. It will echo with me for a while as I try to understand the full extent of that simple statement.

Saturday, August 1, 2015


I watched Ayden Jane play at the beach today. More specifically, I watched her work crazy hard to keep up with twins one year older (who are very athletic). She rode boogie boards with them. The waves were big and the current strong but she kept at it. She was a part of the gang and she was very happy to be with them.

In the water she can hold her own. Then they decided to play a beach tennis sort of game. Um, racket sports and Ayden Jane do not get along. The kids were so kind to her. She took turns and tried. The boy did his best to teach her and was so patient but it was obvious that Ayden Jane was not coordinated enough.

As I watched, I was incredibly proud of and in awe of her, and at the same time felt sad for her. It's a strange thing to watch her join in with other kids. Well, to be honest, these kids are typical born and raised beach kids so keeping up with them in the water is really rough. But that aside, watching her attitude as she is fearless to try. Not just try to keep up with the boogie boarding because she is pretty good at that but to continue to try to play the tennis game. She does not get upset or angry when she can't do it. She doesn't get embarrassed that it is hard for her to do. She just keeps trying her best and is thankful to be a part. (okay, I'm pretty sure she didn't realize that she was terrible, but that may be her greatest gift)

So I watch in awe as she is so incredibly happy to just plug away and be a part even though it takes tremendous effort. I wait for her to get frustrated. I think she will soon tire of not being able to do new things the first time. I couldn't be more wrong ... for now.

I pray she will always have the innate confidence to try new things and join in with new kids.  Along with that, however, I pray she will continue to find kind children. We have been blessed so far. She has stumbled across mostly all patient children who have been very kind to her. She feels like the pool, which is a vacation spot in the summer, is her own personal endless sea of new friends to be made. She talked a crew of 4 cousin's she met at the pool visiting from another state into playing a game with her. She plays fair, doesn't complain when she gets caught or is it and smiles the whole time.

I still wish things came easier and she was truly good at some things, but I need to learn from her that the joy really is in just playing the game. Being the best or winning is not really a concern.

Thursday, July 30, 2015

Cranking up the Carnitine

So as usual, I was not satisfied with things going well. I needed to know if they could be even better! I did the math and decided I was going to go for a third dose of carnitine. It will put Ayden Jane at a total of about 46 mg/kg.

For 2 days (today being the 3rd) I gave Ayden Jane a third carnitine dose at supper. I was worried it would be too much. That she would not sleep, or she would get edgy or her mind would race and she would not be able to organize the energy.

I admit, the first night there was not a lot of sleep. She was up several times and was even playing with the dogs during the night. The first full dose day was not as crazy as I thought it might be. She did go supper hard and then fall asleep - not unexpected. Her focus was actually improved though, rather than scattered.She managed to organize 4 other kids at the pool into playing a game of categories with her which was pretty funny to watch.

The second night she slept better, a bit restless - she came in with me while Gary was at work - but better. I was very curious how today would go. She did great! No lull, played independently for a long time with her dolls, took the dogs on a very long walk with me, swam hard in the ocean fighting rough surf and keeping up with some friends for 2 hours, more playing at home, helped clean up and read her magic tree house book wonderfully before bed.

So far, I think that the dose of 46 mg/kg/day is going to be the winner. She is eating 3 meals but honestly not really asking for snacks. Well, other than the fun blueberry/coconut milk push up pops we made today. Her energy has maintained with meals: breakfast between 7-7:30, lunch 11-12 and supper 5-6. If we have been super active, she may have an afternoon snack or choose to have supper early and late snack if necessary. It is wonderful not to have to take food with us everywhere we go!!

Sunday, July 26, 2015

So Fun

The added carntine has been just the ticket for Ayden Jane. Her energy level has been great, she is leaning out without really even trying and is just plain happy. Along with the added energy has come having much more fun with her friends and the disappearing of her heat intolerance.

Examples would be that I noticed the heat was not bothering her on our morning walk/runs. Even if we did not get out the door as early, she was not phased. Previously, she would start to sweat in the first few minutes and then her energy just drain out of her. I noticed it was so much improved so of course I had to test it. I took her to the playground with the thermometer saying 97. She lasted 30 minutes and wasn't terribly hot, just ready to go. So strange...

As for energy, last night sealed the deal. We went to Noah's soccer game and it did not start until 7:30 and was not going to be over until 9:30 at least. Ayden Jane went over to the playground and for the first hour she played tag. Chasing, climbing ... She was playing with 2 girls from school and some other friends. These girls are high energy, athletic little girls who play travel soccer ect. I have never seen Ayden Jane keep up with these girls for more than a few minutes. She had a blast!! I'm willing to admit she was "it" a lot, but she did not care. I watched as she climbed and laughed and chased and smiled and just had a great time. So much fun.

Tonight we have an outdoor family movie night at church. They will be selling hot dogs, popcorn, candy and drinks. It does not start until 7 which is late for Ayden Jane to have supper. She asked if she could make a plan for the night. She suggested just having a cheese stick, milk, 'three spoons' and a little applesauce at supper time then splitting a hot dog and popcorn at the movie. Honestly, I was pretty impressed! She cut her typical supper down a bit chose small amounts at the movie. Not sure she could do better. Oh, and she also checked with her children's church leader and asked if they had water too, not just soda :)

Monday, July 20, 2015

Carnitine Craziness

So after several days of being back on Ayden Jane's dose of 500 mg of Carnitine in the morning I have had two observations. First of all, carntine is a very key supplement for her. Her energy has improved and she is back to not being concerned about food much. She just seems to have a consistent energy stream back.

So, of course my next question was should I increase the dose? Basically this thought was brought on by her having a reduction in energy and an increase in hunger/emotion after 4 pm. This late afternoon change is not necessarily new. I just accepted it as part of long school days or just a PWS thing. What I noticed was that with the low dose of CF, her whole day was more like her after 4 day.

I checked with Dr. Miller and at first she said she thought the dose of 500 mg was just perfect for her and I should leave it alone. Yeah... I listen, but that does not mean I don't plead my case. Dr. Miller finally gave me the go ahead to add a second dose of CF at lunchtime and see if it clears up the post 4 pm lull. I didn't ask her what dose because Ayden Jane swallows capsules beautifully but trying to hide CF in food is a pain so I just wanted to give her the full capsule. I also looked back and Ayden Jane was on a dose of 500 mg of CF in December of 2011 and I'm sure she is double that weight now!

So after a couple of days I am optimistic that I am on the right path. The biggest thing we noticed tonight was that Ayden Jane was talking super fast but totally clear. No stuttering or having to stop and think about what she was trying to spit out. She was totally happy and had no worries what so ever about waiting for supper even though it was a bit late. Her energy was also great - evidenced by her skipping all over the restaurant.

We will see what the next few days brings. Tomorrow may well be a long day, as we may hit the beach in the afternoon and horses in the evening.  

Wednesday, July 15, 2015

Carnitine Fiasco

For whatever reason, Ayden Jane needs a lot of carnitine and is very sensitive to the type and the dosage of it. You would think this would make me nearly paranoid with how I dose it daily. You would think...

Her current dose is 500 mg of carnitine fumarate (CF) and 250 of acetyl carnitine (ACL). So, she gets a full capsule of the CF which she just swallows and I mix half a capsule of the ACL in with her avocado in the morning.

I figured out this morning, however, that somewhere in the past few weeks I switched the location of the bottles. Of course I should read the labels every time I take out a capsule, but I honestly just got into the habit of going down the line. As a result, Ayden Jane has been getting half of the CF she needs and a double dose of the ACL.

Since the CF provides physical energy it could very well be the culprit for her some what lower energy level recently. Also, I'm thinking it may be the cause of her being more hungry lately due to that low energy. She has always mistaken tired for hungry. Also, the combination of even just a bit more tired and less active and more hungry could totally account for her added couple pounds.

ACL tends to work more on activating her brain. Ayden Jane has been a bit over emotional and more argumentative than usual but we chalked it up to it being summer and staying up late and no schedule.

So today, with the correct doses of carnitine in her? Crazy better. Maybe it was coincidence and she just happened to have a great day today, but wow did she have a great day today. It will be interesting to see how this all plays out but I'm thinking I may have my energetic, happy, lean little kid back in no time.

Sunday, July 12, 2015

Her Number

Dealing with and discussing weight management with a 7 year old just seems wrong. We have taken to just having a scale out and Ayden Jane jumps on it from time to time. No schedules or charts or whatever... I get a kick out of how Ayden Jane calls her weight her 'number.'

She will ask me what a good number is and gets really excited when she gets a good number. The best part is that she is learning to make connections to things that make her number go up and down. She will hop on and the number is high and she will say, "Oh, I did eat a really big supper..." Or if her number went down she will tell me about how she skipped the extra snacks she didn't really need.

I am really hoping that her number will go down a bit and I can help her connect it to exercise. In the long run, eating wonderfully is only half of the equation and Ayden Jane needs to grasp the need for exercise. I'm am happy to help make the exercise piece fun, but she needs to understand that is not simply fun, it needs to be a way of life.

Tuesday, July 7, 2015

Exercise - part 2

Ayden Jane has taught me that life with PWS is the perfect model of the phrase "use it or lose it."

We have gone on our walk 4 days in a row now. The first day I was surprised to see Ayden Jane break out in a sweat early on and be very sleepy in the early afternoon. Day 2 was slightly better, but she still was tired... I will say that both days I loved her ability to sit and focus after the walk!

Day 3 she started out saying it was our day to run. Remember we had worked up to running a good solid consecutive 20 minutes. After a minute or two she was exasperated and declared running was not a good plan. We talked about it and she accepted that after being sick and the time off we needed to just work up to running again.

Plan in place is that we will do the full 1.6 miles every morning. That we will walk one day, run the the next day....  The running we did for the first run day was 5 minutes. She wanted to go home straight away after but I re explained the deal. We go 1 1/2 miles every day, just the amount of it we run will vary. So far she has totally bought in so tomorrow is run day and we will up the number of minutes we run. It's all an adventure to keep exercise interesting and Ayden Jane motivated. It's not hurting me an either.

The other part of the plan is that she is to go 10,000 steps a day on her fitbit. With the help of our early morning exercise, she generally has about 5000 steps by 9 am. The fact that part of most days is spent in water where she gets no reading keeps this goal challenging.

Next on her list of motivators is that she has her scoliosis x-rays coming up August 6. Jen (PT) has told her that if her x-rays look great and her right leg looks great from all the walking/running she will either let her have much smaller inserts in her shoes or a trial run of NO orthotics.  Ayden Jane is over the moon excited about this possibility. She also knows part of the deal will be that if she gets the go ahead on no orthotics then she will have to keep walking/running to keep things strong. Mrs. Jen will be checking up on her!

Finally, she is going to run the inflatable 5k in Rock Hill SC in October with Dr. Miller and her daughter A. It should be a blast!! One lucky little kid we have that so many people are in her corner.

Monday, July 6, 2015


A lot of the challenges of PWS are related to food. Limits on what she can eat and to some extent, how much. Remembering to drink liquids, not using artificial sweeteners or sugar, being mindful when away from home.

This is only one variable in the equation however. Exercise has never really been a problem for Ayden Jane. She and I did lots of things together that often included walking dogs, riding bikes to the playground, taking a walk on the beach, even heading to Walmart and wandering the store can be turned into extra steps and exercise.

This summer, we started with being sick. Then traveled a bit and now she would just rather hang out with her friends. "Playing" seemed like exercise to Ayden Jane so getting her out to do something else was getting to be a problem. I thought through it, emailed Dr. Miller to see if I was crazy and decided it was time to explain to Ayden Jane that playing and exercise are different things. Both are good, but they are not equal. It used to be that exercise was a given so adjusting food was all that was needed for weight maintenance. She has been getting frustrated that she has been good about food and her 'number' is not where she wants it.

I told Ayden Jane that because of PWS she needs to exercise everyday. That just playing around in the pool, swinging on the swings with her friends, painting and coloring, even catching bugs is not the exercise she needs.

She was upset at first but soon into the conversation I realized her concern was less about the exercise and more about making sure she was not missing out on anything. So we just figured out how she can have it all. Basically, we backed up breakfast a little and we are walking/running 1 1/2 miles every morning. She knows there is no heading to neighbors before 9:00 and no neighbor kids allowed at our door before then so as long as we are sure to be done by then Ayden Jane is in.

Today was day 3 and Ayden Jane is getting more and more happy with the whole plan. Whew. The timing was good because her replacement fitbit just came and she loves that she starts her day with nearly 5000 steps. I can say she has lost a LOT of stamina over the past month. I'm excited that her goal is to get back to the point where she can run the full mile and a half. Sounds like a perfect goal to me.

Friday, July 3, 2015

Summer Fun

I have umpteen posts in my head... Just going to start with one and do my best to get back to writing regularly.

Ayden Jane has had such an amazing burst of social skills. I really don't know what has brought it on, but I am guessing it has been a magical combination of MCT, growing up and neighborhood friends.

I'll start with the MCT oil. It is interesting stuff and I honestly don't understand it. (which always makes me a little nervous). There is no denying that it really keeps her brain going though. With it, she just processes pretty much everything faster. What does that mean? It means the fast paced conversations of kids, the rules to games she wants to join, the ebb and flow of the day are understood and followed quickly enough that she can keep up and not frustrate others.

I do think that some of her skills are just the result of getting a bit older. She was a little delayed with speech and it seems like the slower processing and challenges getting her words out put her behind in this area. She has been gaining ground for a good while and now she is partially just catching up finally.

Neighborhood friends have been a huge help as well. Ayden Jane has had friends but none she can just run out the door and find and play with. Growing up in a world of therapy, older siblings, doctors and lots of medical talk does not exactly give you good peer relation skills. Being that I am an old mom, most of my friends don't have kids Ayden Jane's age and I just haven't made myself find others to spend time with. I feel bad sometimes as I think back to the families we just did life with when the big kids were little and how much time they spent with great families of friends... The neighbors have a daughter AJ's age and a son 2 years younger and the three of them have become quite the trio. The parents are wonderful as they are not worried or bothered by Ayden Jane's extra needs and they have taught their children to be the same way.

So, how do I know there are new social skills pouring forth? That it's not just comfort with neighbor kids? I see it in new situations. I see it at the beach when just AJ and I are there and she meets up with new kids or even just kids she only slightly knows. She catches on much more quickly to games and is relaxed and happy, and the other kids are inviting her to join in. I see it on the sidelines of the soccer games as she joins in and kicks a soccer ball with a new friend or I watch another friend run by and say, "tag, your it" and Ayden Jane immediately respond by taking off running after her.

She's relaxed and 'on the same page' with the other kids. She is not trying to analyze things or asking a million questions on the rules of the game. Even just the body language of the interactions is that of mutually enjoying playing or chatting together.

It feels strange that Ayden Jane didn't always have adequate social skills. It almost seems strange to remember that she has spent most of her years a step behind the action. I am excited to see how these skills play out in school next fall with a new classroom of students.