Saturday, February 27, 2010

A Break (for a day)

Today Gary, Mckenna, Ayden Jane and I all went to see Noah play 2 soccer games in a tournament about 90 min. from home. (Kayla had to work) It was not entirely freezing and the sun peaked through a few times. For this winter that is a pretty good day.

As I sit here at the end of the day, I realize it is one of those rare ones where I just didn't worry about PWS. I did do supplements before we left and 'food rules' stayed pretty well in tacked, but I just didn't really focus on all that. Today was about watching Noah play the game he loves. He is a freshman on the varsity team and is doing great. It was just a typical Saturday. Mckenna and Ayden Jane did a great job playing. They decorated the wagon with chalk, built a tent, played babies, ran around, played on the playground... Other than the need to really watch Ayden Jane as she is prone to wander with no fear of getting too far away, it was stress free. I am really looking forward to this spring and summer.

Well, early morning tomorrow with more soccer on the horizon.

Friday, February 26, 2010

Two Year Old Fun

Between the times where Ayden Jane is tearing apart the house or climbing things she shouldn't or drawing on her legs or yelling IIIIII DO she is quite the goofy little one. She is very into being the center of attention and not ever being left behind.

Particularly when we are in the car, she demands center stage. When others are having a conversation she will begin with, "Ha. Ha, ha." Other favorites will be to call our names and then ask for something we don't even have in the car or just say "look me." The laughing usually works quite well as really none of us can resist laughing with her. Then her fake laughs turn into true toddler belly laughter and there is no better sound these days.

She is also quick to get the clue that someone is leaving. She will run to them and announce she is going too. Selective hearing has already begun. We don't even realize she is listening and she suddenly totally comprehends.

She is also quite the imitator. She will even imitate herself. She was calling for me from across the house and I, of course, sprinted to find her. Not. I did answer back and she found me. Once to me, she starts telling me the story of how she walked through the house calling, "Mom, where are you." It is very funny to listen to her as she 'tells' the story and she does the voice you use when you are talking quietly but sort of imitating someone yelling. So cute.

Her pretend play has also become so fun to watch. Tonight she was pulling 'Big Mick Mick', a stuffed Mickey Mouse about as big as she is, on her bike. The bike tipped and Mick Mick took a tumble. Ayden Jane put the bike upright (with appropriate grunting at how hard the work was) and then picked up Mick Mick and said, "I sorry Mick Mick. Try again. Hold tight Mick Mick..." As she proceeded to get on her bike with Mick Mick to keep him safe this time she informs me, "Bye, Mom. I be right back. I go shopping." Aaaahhhh a few moments of peace in the day. Now if I can just put the place back together again so we will be ready for tomorrows tornado.

Wednesday, February 24, 2010

Just Might Work

Well, Jen (PT) and I were talking during physical therapy today about little miss seeks-a-lot. We were revisiting an idea we started on a month or so ago. We were creating a sort of weighted cozy animal idea and then I just didn't follow through as, of course, her need slipped away. I think we are going to move forward. Here is the plan. I am getting Ayden Jane a weighted lap pad. They are about 12" x 18" and my plan is to then make a way to attach it inside a cozy gund animal (the ones that zip open). The result will hopefully be a very soft, adorable, weighted friend that can go anywhere with her and is completely washable. She also loves the weighted vest she wears during these times during therapy. I am hoping that her new blanket/friend will replace the need to carry 85 animals with us wherever we go!

Ayden Jane's verbal skills were good today. New to her list of words she knows that I had no idea she knew - cantaloupe. Yep, took me a good long time during the car ride home to figure out what in the world she was asking for. I had just bought one during the quick run into the grocery store because they are Mckenna's favorite. Later, Kayla was taking Mckenna to the High School for the school play. Ayden Jane went to Kayla all sad and said, "Ayla, me come with you too." We laughed and all agreed that one came out very clear. Oh, and yes, Kayla took her because she was soooo cute about asking and very attached to Kayla. They haven't spent too much time together over the winter due to basketball season and Ayden Jane is so happy to have Kayla back.

Monday, February 22, 2010

The Seeking Continues

I will attempt to recap our day. I did manage some laundry and general cleaning in my bedroom, but it was definitely at the expense of the destruction of our living room. One of the things Ayden Jane tends to do when she goes through these sort of sensory seeking times is empty every bucket and shelf. Go through every drawer, try on every article of clothing... Now none of these things sounds out of the ordinary for a 2 year old, it is just the extent to which she does this and the other things that she combines them with.

She, of course, had to draw on her hands and feet but at least she left her face alone. She attempted to 'break into' everything she knows she should not. She whines in the back seat as I drive that her legs or back hurt. I think she means more like itch or just plain don't feel right, but it obviously bothers her. I went to the laundry room to 'flip' the clothes and when I came back out I heard, "look Mom. I up high." Her speach was beautifully clear which was wonderful, however she was standing in the middle of the dining room table quite proud of herself.

Then there are the requests for her back pack, big squeezes, climbing on me, asking to go upside down, requests for 'gotcha', bouncing galore. Bouncing on her little horse, bouncing on the bed, bouncing on the exercise ball seated, bouncing on the exercise ball standing (yes, with help)...

The day is done, the house destroyed, I am tired of being a jungle gym/play set and Ayden Jane is sound asleep as content as can be.

I used to be a bothered by some of these spurts. I worked with them sort of with the intent in my mind that they were challenges to conquer and put to rest. Now I see them as just a part of the journey with Ayden Jane. She really seems to keep me guessing. Each time we see this stuff come up, we find ways to address or feed the underlying need and sort of think that maybe this time it is done with. Ayden Jane just grins as if to say not so fast. I am looking forward to the nicer weather and getting her swimming and playing at the beach. Talk about a sensory playground! This summer she will be old enough and mobile enough to really enjoy it all. I just hope she loves it as much as I think she will.

Saturday, February 20, 2010

Something on the Horizon?

Well, as usual, just when things seem to be settling into a 'normal' pattern for Ayden Jane she has to change something. I used to worry when these strange sort of sensory stages would come up, but I have learned that it is all part of the process for Ayden Jane. She just cannot seem to grow connections in one area of her brain/nervous system without affecting skills she has already obtained in other areas. Those skills come popping back up as soon as the new skill breaks through, but she just cannot make this process seamless.

The sensory issues are more subtle than they once were so hopefully the day will come when it will all work smoothly. So what is she up too? She wants lots of 'big squeezes', flips upside down, tickling, wrestling, chasing, 'squishing', lotion rubbed, cuddles... I find myself by midday just wanting to peel her off of me. Maybe it is just an average two year old stage, but today when she asked to wear her back pack, I felt sure that we are truly seeking again. I have no idea what new connections are being formed, but I will just do my best to oblige and provide all the added touches she needs.

Friday, February 19, 2010

Stubborn Streak

Let's see Wednesday this week we had PT. Jen thought that Ayden Jane felt great and was combining skills beautifully. Her attention span was great and she was not easily frustrated. She was goofy and fun and cooperative. Then came Friday.

Friday brought ST with Nicole. Now Ayden Jane tends to give Nicole a more difficult time in general I think partially because she just finds movement more fun than communication. I told her Nicole was coming and she was excited, but it was all down hill after that. (Of course the lack of napping - see below- was likely part of the problem) She just became completely stubborn. Nicole showed her a picture card and asked her to say the word. Ayden Jane told her, 'all done cards'. We pushed her, tried to bribe her with stickers... There was just no way she was doing it. We did give up eventually and she proceeded to play with some animals she likes, but still was not really talking to Nicole. So what do you do when your kid won't talk to the speech therapist?

Napping. Well, Ayden Jane has decided that since she is approaching 2 1/2 she no longer needs a nap. She is wrong. Unfortunately she is also very stubborn about making this point and will find ways to keep herself awake. She would not even fall asleep for a few minutes in the car this week! When tired, Ayden Jane's speech is harder to understand and her patience with us is very small. Bad combination. At least she sleeps well at night.

I have to be honest in that I do like the stubborn, independent streak in Ayden Jane. She will likely need it down the road, but there are days...

Tuesday, February 16, 2010

Now what

I sort of have that 'now what' feeling . The marathon and fundraising... is over. I am guessing the lack of an actual race and finish line is adding to the feeling. I don't do well with that sort of feeling, so I have moved on to tackle food and sensory integration. Food and cooking I am NOT looking forward to, but I really enjoy the sensory stuff. So why? What am I attempting?

Food. Ayden Jane needs all the right food and none of the 'wrong' food. It seems that a diet much like the paleo diet with no grains serves her well. I am heading down 2 paths with food. One is to turn my diet into Ayden Jane's diet. One reason for this path is that the more I read, the more I am convinced it is the best diet for anyone. Secondly, it just makes me feel like a hypocrite to ask her to stay away from all the cereals, crackers, cakes, cookies, candy... and then eat it myself. Not that I am expecting to be perfect mind you, but I need to do a whole lot better. Now, while training for the marathon I ate EVERYTHING in sight so it was not the time. The other thing I am looking to do food wise should be a natural outpouring of the first. I need to learn to cook. I think if I do not allow myself the convenience of processed foods to eat, I will more likely learn to find things that Ayden Jane can eat long term. I am hoping I will even find sort of alternatives for some things like ice cream... As I experiment and learn, I will let you know. As for now, I am in the reading books stage.

Sensory Stuff. Our kids with PWS seem to very frequently have some neurological glitches with sensory processing. There have been times I have posted some of our experiences but I am reading more books which will hopefully give me lots of good ideas to keep that little sensory system developing. I just have that momma feel that this is a key area for Ayden Jane long term. It seems to effect her mood, skill development, language development, confidence... I need a better understanding of the theory and reasoning behind it coupled with some ideas in my arsenal and I think we will have a great time this spring.

Saturday, February 13, 2010

Marathon and Snow

Well, the unbelievable happened. It snowed in Myrtle Beach and cancelled the marathon. I ran what I could anyway, dodging slush and increasing traffic in honor of all our kids and all the support from the great folks out there who care about them. I finished the last few miles this evening. Honestly, I am really disappointed and now I know I will give it a try again next year. It can't snow 2 years in a row! The last time it snowed here was in 2000! Ayden Jane did NOT like the snow at first. She got into it for a little while, but could easily have done without it. Here are some pictures of our day.

I will continue to wear my shirt and keep on running until next year!!

(Below.) Where did Mommy go? Running again?

Thursday, February 11, 2010


Ayden Jane was so cute this morning as we were getting ready for school. Now school for her is once a week in a mom's morning out program where she will go to preschool next year. She had an armful of 'babies'. She is not attached to any particular one, and her gang of babies nearly always includes Mickey mouse and Tigger or some other animal. Anyway, I was attempting to get her out the door to school and wanted to avoid the inevitable question, "babies go to school?" So I cut her off at the pass. I told her to put her babies down for a nap so she could go to school. Off she went on her mission to put about 8-10 'babies' down for a nap in my bed. She carefully tucked them all in and told them to be good and go to sleep. Then we almost made it out the door when she turned and ran back. She climbed up on the bed to give the babies kisses. It was precious. She hopped down and told me in her very important voice, "let's go Mom. I big. I go to school. I like school."

It was wonderful. It was just like most every other house with a 2 yr old. Life was good.

We arrived at school and as I was feeling so great about how smooth everything seems to be going. Then I noticed all the kids coming in with valentines and candy and cupcakes.... Oh yeah. Class parties. It will be interesting next year. Her teacher told me that they were not doing any special snacks for her group so I was in the clear for today. Still... That dark cloud of 'fear' began to return.

When I returned to pick up Ayden Jane, she greeted me with excitement and an adorable Valentine she had made with her hand prints. Then she had to show me the tunnels they played in and try to sing the song they sang.... Yep. It will all be just fine. We will figure out ways to deal with the junk food and Ayden Jane will continue to grow and learn and be filled with joy and wonder from it all.

I think in the beginning the dark cloud loomed large over our days and nights almost continuously. Over time the cloud begins to break up or lighten up. Sun begins to peak through for periods of time. I look forward to the time when sunny skies and cloud free days out number the cloudy ones.

Sunday, February 7, 2010

New stuff, fun stuff

Ayden Jane came to me this morning and she was chattering on about something. She was very excited and kept repeating what she was trying to say. At first I was sort of sad that she was trying so hard but I couldn't understand her. We kept at it until she drug me into the other room to explain. Later, same scene different words. Yes, again for the third time in the day. Only now I began to look at it in a new light. I was not understanding Ayden Jane because she was using words I had no idea she even knew. She was trying to communicate more complicated ideas and she was not getting frustrated (I was but not AJ). In the end, I think a few 'big squeezes' are in order along with tons of interest from Mommy in whatever she is trying to say. Definitely one of those days where none of my 'important' tasks is as important as what is going on before my eyes in a little 2 yr. old ball of energy and wonder.

Thursday, February 4, 2010


Okay, so I know the point of this blog is to keep you all up on Ayden Jane and the challenges of PWS... I couldn't resist this one though. Mckenna (8) gets in the car today as I picked her up from school and starts the conversation with, "well, I guess karate sure comes in handy." I was almost afraid to ask, but I did. "there is this kid, he is supposed to be in 4th grade but he failed and he is sort of a bully. He has been picking on _______ and ________. Today he jacked them up against a wall, so I pinned him so they could get away." Now, first you have to understand that in Mckenna's top 10 list of best friends, maybe 2 are girls. The two she was referring to are not. After some more questioning, I discovered that the boys who were having trouble did tell the teacher and the bully did receive detention... I do not think that anything serious was going on, but I did find it funny when I asked her if the bully ever bothered her, she said, "he started to a little, but trust me, he doesn't mess with me any more." Now part of me wants to tell her to keep her hands to herself and not get into trouble, but a bigger part of me thinks she is doing great. I think Ayden Jane will be well protected.

Wednesday, February 3, 2010

Just for Fun

So lately Ayden Jane just cracks us up. She love to tease and much to my frustration some days, run the opposite direction from where we want her to go. She repeats everything we say. Well, everything we wish she wouldn't catch us saying anyway. She is also attempting to take over the family. Here are just a couple of moments in our day with Ayden Jane.

Mornings. Ayden Jane is quite sure she is in charge in the morning. She wakes up all 3 big kids by marching in there rooms and announcing, "wake up _______. Rise and Shine." Then the dog gets the boot. "Sadie out. Let's go, Sadie out." She follows her initial rounds up with checking on everyone. When it is time to head for the door she is the coat police. She will say things like, "Mckenna, coat on. Mckenna zippy." Do not even try to get past her without zipping your coat. When she is satisfied all are properly ready, then she will make sure everyone heads out to the car. She says her good byes to all as they get out of the car and then makes sure I know it is time for breakfast.

We were at the doctors office yesterday with my oldest daughter. Ayden Jane was just entertaining herself and decided the man next to her in the waiting room would like to 'make faces' with her. She grinned and tipped her head. He responded... Then she was playing with Mckenna and was cracking herself up. She would do something goofy to Mckenna then turn and look at Kayla and I and do a sort of silent belly laugh with full facial expression. We couldn't help but laugh which was, of course, all the motivation she needed to keep on going!

Ayden Jane is addicted to her shoes. She has bright pink crocs which also happen to be the same shoes her friend Lilah has. Ayden Jane calls them her 'Lilah shoes'. She can put them on herself, which also means she can take them off herself. It is about 50-50 whether they will be on the right feet. If you try to help her put them on you will be met with a very loud, "IIIII do." She is so attached to the shoes she even sleeps with them on. In fact, she has been known to take off all her clothes, (another favorite activity) and then put the shoes back on. It seems they are the only essential item in her wardrobe.

Well, marathon training calls. Only 10 more days!