Sunday, January 31, 2010


Ayden Jane definitely has been 'after' food the past two days. Now if it were any of my other kids, I would respond with a thought that they were headed for a growth spurt or just trying to be independent... With Ayden Jane it is hard not to panic that difficult days are ahead. What has prompted these thoughts? Her first thought of the day was, "I want snack." Usually when she gets up she is content to play a while. She asked for food lots of times today. Again, two year olds do tend to do that. She finished all of what I gave her. She rarely does that. Then there was the time she went and got her stool from the living room and took it to the kitchen to scope out the counters.... Hmmmm definitely need to be sure to keep all food put away.

We are in a great place right now with weight. I email the PWS clinic in FL once a month with her height and weight and they keep an extra eye on her between Dr. appointments. They like to track her weight for height percentile and Ayden Jane's was 25th. That is right where they want it. I guess that means she is a bit light for her height right now which is great.

I suppose I need to calm myself and get Ayden Jane back on a good schedule for food and monitor just how much she is eating. I guess I have been pretty slack about that. She really needs to eat about every 2 1/2 - 3 hours, but the snacks can be quite small. I have been sort of bad about letting her stretch this out and then she wants to over eat to compensate. Looks like we will be tightening the reigns around here a bit.

Hopefully in a few days I will be posting that it is a false alarm and that Ayden Jane is back to her old self again.

Thursday, January 28, 2010

marathon and PT updates

Running for Ayden Jane update. The running part is great right now. I am officially on my 'taper' and loving the fact that I am no longer increasing miles. The organizing fund raising part is so new it has been hectic. We have managed to find ourselves as front page news in our local weekly paper. Very kind of them but definitely a surprise to us. Everyone here has been so supportive of us and interested in what we are doing. I know they all have their plates full with their families... but it is amazing to see people take time and offer support. We live in a great community which poured out support in the early days of Ayden Jane's life so it shouldn't surprise me that they are still so supportive, but somehow it does.

Now for little Ayden Jane. I think she is showing signs of needing an increase in her gh dosage. Now for a lot of kids with PWS, weight gain is often part of needing an increase. That is not really the case, so far, with Ayden Jane. I THINK it works like this. Since gh is a large part of the kids being able to develop lean muscle mass, it in turn helps with metabolism and energy. (just like lean muscle mass on anybody helps these things) I am guessing that in most PWS kids the weight gain is more due to lower metabolism and lack of energy so fat mass is put on rapidly even without an increase in calories. Ayden Jane, on the other hand, just does not seem to gain fat mass at this point (due to supplements and paleo diet?) so for her when the lean muscle mass drops she just seems to literally be skin and bone. It affects her most in the shoulders and across the chest. Last January before we had our last increase, Ayden Jane looked 'frail'. I guess that would be the best word for it. It will be interesting when she goes to her endocrinology appointment in the next month to see if I right!

As far as skills, she just gets more and more verbal as the days go by. Tonight she was cracking us up with her funny little sense of humor. First story. Ayden Jane was in her high chair having a bed time snack when I said to her, "I looove Ayden Jane." She answered, "I yuv you." So of course I said, "I looove Ayden Jane." AJ answered, "I yuv Mckenna!" and giggled and giggled... Later it was bed time. I told her lets go and Ayden Jane said, "I go in Noah's bed?" You see where this was going.

Physically, we have been working on hips and hand skills. Ayden Jane likes to sit in "W" sit, especially when she is tired. We are working on strengthening and getting her to sit "criss cross applesauce". As for her hands, she was showing signs of 'tactile defensiveness'. Well, problem solved. AJ is back to touching everything and is learning to use scissors and color. The other thing we have been working on is throwing. She is doing great with it, but when you try to get her to throw at a target she will just grin at you and throw the other way! She is trouble.

Friday, January 22, 2010

You will have to forgive me for jumping around a bit tonight. First, Running for Ayden Jane update -- the fund raising side. I will be running in a very special shirt with the names of about 40 kids with pws on it. It was a little idea at first which has grown into really cool part, for me at least. I feel like I will be running with 40 pairs of angels wings seeing me through to the end. My big kids have really gotten into this idea and are all excited to wear a shirt too. Mckenna looked at the list of names and asked, "are all those kids just like Ayden Jane?" She was amazed to read the names and feel like maybe Ayden Jane isn't the only one in the world made this way. It was very special to her and she is excited to have a part in the project. I will be taking Noah to soccer out of state tomorrow and Kayla and Mckenna will be taking the design... to a friend who does shirts... They will do a great job.

Gary's contribution to the project was to be sort of 'public relations'. Well, so far he has managed to put me smack in the middle of an interview with the local paper. NOT supposed to be my job. Apparently I will have to continue to live outside my comfort zone. Why can't I just run quietly with my own thoughts...

As for Ayden Jane the big new is she has started 'school'. It is really a mom's morning out program, but it is located where she will attend preschool next year. She LOVES it. She is only going Thurs. mornings so she has gone twice. The first day she was a bit quiet, but the teacher said Ayden Jane would tap her on the arm to tell her something and then just look at her with those great big eyes but not say anything. Ayden Jane did not say much about school the first day, but was definitely interested in going on the next Thurs. This time I went to pick her up and she saw me, smiled and then moved to the middle of the carpet and started to dance. Apparently they had been doing some dancing to music and Ayden Jane loved it. She told the teachers bye bye and and thank you and then turned around half way out the door and ran back in. She said, "back again? Ayden Jane back again?" She was checking to be sure she could come back to play again. All the way home she was trying to sing something but I still have no idea what it was. It was a big win all the way around. Our house even has clean bathrooms now! Amazing what can be accomplished in a couple of childless hours.

Tuesday, January 19, 2010

Pictures Jan. 2010

The nice warm sun came out in Pawleys Island so we took the kids to the beach to just have some fun. They are a crazy bunch and we had a great day and took lots of great pictures. These are just a few of my favorites.

This one is of Ayden Jane just playing in the yard.

Friday, January 15, 2010

Well this week brought several things I have been slow to write up. Lets start with Tuesday's horseback riding. We took 2 weeks off over Christmas and New Years, then the cold weather extended it one more week. This was definitely the longest break we have taken since we started last April. I know that riding is good for Ayden Jane and she loves it so it is a therapy we never considered dropping, but this week my support for it flew through the roof! Ayden Jane came home from therapy and was a crazy woman. I mean that in a good way. She was all over the house, climbing, playing with Noah and Mckenna and chattering up a storm. It was like she suddenly felt GREAT and just could not use her body enough. She kept on rocking and rolling for an hour and a half beyond her usual bed time and then slept very sound for the night.

Wednesday brought physical therapy. Now we have basically had the same length break from PT because we took the two weeks over Christmas and then did a 90 eval where we mostly just chatted. This means this was the first time Jen worked with Ayden Jane since that crazy language spurt... She was very excited that she feels AJ is beginning to combine the motor portion she was great with and the language piece into complicated activities. For example, she had her doing activities like going from seated on a stool to stand in a saucer which was challenging to balance in to reach for puzzle pieces. Then she had to place the pieces in the puzzle while still standing in the wobbly saucer. Now, AJ likes puzzles, but matching where they go, having the patience to twist them and make them fit and have part of her brain working hard to keep her balanced has been an over load in the past. Wed. she did it all and was talking with Jen about the puzzle at the same time.

Now for the 'bad' news. We have seen AJ sort of cycle through the same challenges. Currently we are finding that the OT portion needs to come to the fore front. When Ayden Jane was tiny she had some issues with texture. She had a period where she did not like to touch things with her hands and then went through a time where she just wanted to rub everything all over herself. The hands seem to be the main point of tactile defensiveness. Even when tiny, she would want to touch something so she would rub her feet on it first and then move to her hands. Jen was working on drawing lines. Line down. Line across. She was also trying to get Ayden Jane to cut with scissors. Mostly, she found that Ayden Jane did not want to grasp tightly and really did not like the pressure needed to cut. When Jen went hand over hand with her she really resisted. I told Jen how Ayden Jane does not like to hold hands either. She has to work up to high five... You can see this because when she holds your hand she will grasp your finger, but as soon as you put some pressure back she will pull away and tell you "I don't like". (Not good in parking lots) As for high five, she will reach and not touch the first time. Then tap a little... eventually it is a good hit. Every time she has to work up to it. You can just see in her face that she wants to, she just.... Jen's words, time to desensitize those hands again.

Great stuff, just always a reminder that there are growing pains. One area improves, there is likely another that is 'not connecting' like it needs to. Jen is so amazing at getting them all to come together and work it out.

Tuesday, January 12, 2010


So I came back from the FPWR conference last Sept. so excited about the possibilities that the current research ideas might bring to life for people with PWS. I just knew that Gary and I needed to do something to help. Well, neither one of us is smart enough to actually work on solving the mysteries of PWS so fundraising it is. UGGG. So not my cup of tea. We talked about some ideas, but we needed Gary to pull off most of them and he is very short on time these days just trying to keep our little family afloat and finally pay off all the financial challenges from Ayden Jane. So, what could I do?

You hear that you should use your gifts,talents, passions.... and turn them into fundraising. Hmmm. Well, I do like to run. That is how it started. I thought maybe I could do the half marathon, but something in me just kept saying that I would not be satisfied there. I could do more. I told Gary that maybe I could run the marathon? Wow. I said it out loud. The world did not crash in... I started to train, but did not even considered 'going public' for quite some time. I ran and prayed. I prayed for the families of kids with PWS. I prayed for my knees to hold up. I prayed for wisdom in how I could help.

In the end, I am hoping for donations to pile up a bit, but I think my reward is already coming in. I chose to move forward. I am coming 'out of my cave'. Those of you with children with PWS know what I mean. Your vocabulary changes, your interests change, you have no clue what the latest movies or TV shows are and you cannot even look at food the same anymore (all the fun of ice cream covered brownies and all you can eat buffets is gone). You lose much of your ability to 'small talk' and your friends just want to help, but you don't really even know how they can.

The literature paints a picture of your child that is sad and scary. The list of challenges of PWS is long and depressing. Then your child grows and moves and laughs and plays... Such an amazing little girl in there and I am so glad that all the research and hard work has paid off and she is able to come out.

As I sit here and type, Ayden Jane is sitting on the floor near me playing with her toys. Mostly she is kissing them and talking to them, "I love you baby. I love you ball. Sit down bear. Good bear. In the basket hoo ha ha (monkey)..." I think I will go give her a big squeeze.

Monday, January 11, 2010

So as I read about other kids with PWS I frequently hear how happy they tend to be. Honestly, at first I figured a lot of that was the tremendous amount of love and attention they often require and the joy they bring when they accomplish new tasks. I don't mean to diminish the joy and pride I felt for my other kids as they accomplished new milestones, but somehow with the added struggle, you just get a pay off of tremendous joy at new tricks with special needs kids. When she was tiny I could have thrown a party the first time she was able to hold her head up! The older Ayden Jane gets, however, I wonder if there is more to it. Our Ayden Jane just loves to laugh. She teases, hides, chases, runs away with items, begs for us to play 'gotcha' with her... She is just so playful by nature. I guess it could be that she would have been this way even with the right combination of genes on chromosome 15. I guess that is one of the questions we will ask over and over, "Is it Ayden Jane or PWS?" In the end the cause doesn't really matter. She is the amazing little Ayden Jane God intended her to be. She is challenging, exhausting, amazing, joyous,... our blessing.

Saturday, January 9, 2010

Christmas Break

We were sort of on PWS vacation over Christmas. That just means no therapies which means no therapy 'homework'. Once Ayden Jane sort of finished up her language spurt, we just played with our new toys, enjoyed having all the big kids home and hung out. Our schedule was wide open and it was good to relax. It is definitely time to get back into action though. We have really not kept track of food quantities at all, just kept up with the appropriate choices. The big kids are great with knowing what she is allowed to eat and what is off limits. They are also great about asking if it is okay to give her_____ at that particular time. They just seem to get it that I keep a running tab of about how much she is getting of fruit, protein and good fats in my head. No arguments from them. I do my best to make sure she has eaten very well (I mean quality not quantity) if I leave her with them and give them the 'easy' foods for choices to give her. So far it works well. Just seems that planning ahead is the biggest key.

We did attend a party over the holiday. I really thought that Ayden Jane would pull her shut down and observe routine. It was primarily adults and not too crowded, but there was a band and dance floor. Food was, of course, a buffet but AJ was really too distracted to care about the food. She ate one chicken finger and a slice of pork and when I thought she was heading for the cake, she just wanted to see the Christmas tree and never even noticed the cake. It only took her about 10 minutes before she was on the dance floor with about 7 other kids and she was dancing away. It was adorable! The party was for the husband of our PT (not because she is our PT, but because our families are close friends). One of the PT's that work for her was also there and remarked at how great Ayden Jane is doing. She was wondering how she could still need services! It is always so great to hear people that really know what they are saying to say how great she is doing.

We did have a 90 eval for PT this week. It was funny, because Jen asked me several questions about whether or not she could __________. They were goals we were working on before that crazy language leap. For several of them I had to say she WAS able to do it, but was NOT able during that couple of weeks. As for today? She is better than during the spurt, but has lost some skills she had obtained before it. So strange how it seems to take so much effort when obtaining new skills that her little brain just cannot keep up with everything.

Then Friday we had ST. I realized just how far that spurt took her when Nicole started with, "is she getting more consistent with 2-3 word phrases?" I chuckled and told her that we were now easily connecting 4-5 words and often using total complete sentences. Of course, Ayden Jane then proceeded to be totally quiet for the first 30 min. of therapy. UUUGGG. Actually, we sort of figured out (I think) what some of the problem is. Nicole brings new very interesting toys which would cause most kids to get excited and talk to her. Instead, Ayden Jane just gets quiet and thoroughly investigates them. She totally takes in everything receptively as I will hear her use words that were part of the 'new' therapy toy. For the last 20 minutes, Ayden Jane began to show Nicole all her Christmas toys. As she showed her and played with the familiar, she began to talk up a storm. She was telling her a story about something that happened previously, she was narrating as she played, she was telling Nicole how to do it.... We will have to work on the best way for her to work with Ayden Jane.

Sunday, January 3, 2010


Today I ran 16 miles as part of my training to run in the Myrtle Beach Marathon. I thought about running a marathon before, but honestly would have been satisfied with a half marathon. I decided to do this, however, as a fund raiser for the FPWR and it just seemed to sell short the efforts of people with PWS and the efforts the researchers are making to do anything less than a marathon. It was grueling. Of course, I managed to pick the coldest day of the year, and I don't mean because it is only Jan. 3. It was hard and there were times I wondered if I can really do it, times I wondered if it was worth doing it, times I wondered if I can do it... yes, there was lots of time. I guess what it comes down to is I really don't know if I can do a lot of things. But the first step in doing them is to try, so I am trying.

Two and a half years ago, I was preparing to have our fourth child. I was pretty confident in my parenting skills and although I must admit she was quite a surprise, I knew we would love her and she would just fit into our family and our lives. When the unthinkable happened and she was not born 'normal' and healthy, we operated fairly well in emergency mode. After a while, however, it was apparent that this was not a short term problem and emergency mode is exhausting. As the tests for unimaginably scary disorders came back negative we gained a false sense of security and operated under the pretense that if we put in the extra effort for a few more months, she would pull out of it and everything would catch up to the picture I had of her in my mind before I met her.

I think, for me, the hardest part of parenting Ayden Jane is figuring out how to balance the strain of trying to do everything I can for her, learning all I can, planning all I can, working with her all I can... with the fact that this is not a short term deal and I need to take care of me and just enjoy Ayden Jane and Kayla and Noah and Mckenna and just chill out sometimes. I know that God is in control of Ayden Jane's future and that he wants me to enjoy the 4 amazing gifts Gary and I have been blessed with. But I also know that with each gift of a child there comes a responsibility to raise them, teach them and train them with the tools they will need to live out God's plan for them. That is a challenging balance for parents even when the children do not have special needs. I will strive to do what I can each day, not stress about what goes undone and enjoy the time I have with ALL my wonderful, amazing kids.

Friday, January 1, 2010

Happy New Year

So, how was 2009? All in all I would have to say it was a year we moved forward. Ayden Jane has continued to do amazingly well. I still don't trust it somehow and am prone to freak out at the littlest signs that things may take a turn. I guess I will have that to work on in 2010. Gary is set for work, no small accomplishment these days. Kayla continues to grow into a godly woman and work hard to be a top academic student with goals of a career in the medical field. She is caring and looks forward to her missions trip to Guatemala this summer where she can see Oscar, the boy our family is sponsoring. Noah is has made it most of the way through 14. That is an accomplishment of its own, but additionally he is good kid. He still is focused on soccer and is looking to go into biomedical engineering. Mckenna is growing up and is soooo full of questions. I have not been able to spend as much time doing things with her as I would like, but she loves her little sister and continues to amaze me with how great she is with her.

So what would I like to see happen in 2010? For me, I would like to finish my graduate degree in autism and find some part-time work to take the pressure off of Gary. I would like to stay active in the Foundation for Prader Willi Research (FPWR) and get my house organized so I can relax and be more fun! Hopefully, 2010 will put the medical bills behind us and finally pay off Ayden Jane and put our family on better financial ground. It truly feels like maybe this year we will be able to enjoy life a bit more. Hey, maybe we will even be able to go on a vacation!