Thursday, December 30, 2010

She's Back

Yep. Antibiotics worked wonders. I managed to get two doses in her yesterday and by today the happy little girl we all know and love returned. Ayden Jane was able to play with her toys a whole 10 feet from me (instead of in my lap) and ask for help when needed instead of the panicked whiny voice thing. She came with us as I took Noah to get his permit and she was great. She skipped her nap and we went to a huge new park with our friends and she played and played. Amazing how one day can make such a difference!

We have had a two week therapy break but are back at it next week. Ayden Jane asks every morning if she has school. She sooo wants to go play with her friends. It has been a good lazy Christmas vacation. It would have been nice to skip the nasty head cold, but we have had fun anyway. Not sure what tomorrow will bring, but maybe a trip to the new roller rink! Well, roller blading for Mckenna and maybe just the inflatables for Ayden Jane.

Wednesday, December 29, 2010


Ayden Jane and I both caught a nasty cold a couple weeks before Christmas. AJ has been great through it, blowing her nose like a trooper, sleeping fine... Until the last couple of days. The change has been gradual so I think it crept up on me. Today, I am convinced that it is time for some antibiotics.

So what are the signs Ayden Jane is sick? She has NO patience and cries at the drop of a hat. She is not eating much at all. I am having a hard time understanding her and I wonder what she is hearing. She wants to go out and play but gets frustrated because she tires quickly. I started thinking about it and I realized that we are a couple days past 2 weeks with this cold! I am really hoping a good round of antibiotics and I will be reacquainting myself with the sweet, even tempered, silly Ayden Jane and wondering what took me so long to realize she needed some help.

This is the second time in her 3 years she has been sick. I guess I can't complain.

Monday, December 27, 2010


Just a few random pieces of what we have been up to. Sunday we had snow here. Nothing that actually could actually lay on the ground, but it was pretty falling from the sky. Ayden Jane said, "it looks like pieces of clouds falling." That is a big improvement over hating it last year.

We bounced on the trampoline today. She has become very brave on it. She used to pretty much stick to bouncing on the edges where she wouldn't be flung too high. Now she likes the middle. She also tries hard to bounce high and finds it very funny if you 'bounce' her. Fellow trampoliners will know what I mean.

We have made it most of the way through the holidays food wise. So far I'd say we are okay. AJ is definitely off schedule but seems to be handling it well.

Lastly, I find it funny that of my 4 kids, Ayden Jane is the only one to wear slims. Yep. She is the most lean of the lot and is currently wearing a size 4 slim. Even those she is not keeping up very well. Now if I could just get her to wear a coat!

Saturday, December 25, 2010

Red Dye?

Well, the inevitable happened and Ayden Jane caught a cold. She has been fine with it and doesn't really seem miserable, but is definitely congested... A couple of days ago, Gary gave her some over the counter meds for it. Expectorant/cough suppressant. We could argue right or wrong, but that is not the issue. It just seemed that after she had the meds in her she was OUT OF CONTROL. She had also taken a good nap... So we tried the experiment again the next day. Wow. The energy she has after taking that stuff is almost frightening. If only she could focus for more than a second and had patience lasting longer than a nano second.

So what do I think was at the root of it all? Red dye 40. Why? Because she is a sister to Noah. Yep, I am thinking this one has nothing to do with her PWS genetics and everything to do with the rest of her genetics. When Noah was little he had the same reaction to the red dye. I once gave him an orange medicine (thinking it was red 40 free) and he switched from lying on the sofa, feverish and lifeless with pneumonia to running laps around the living room. He seemed to grow out of it over time (or maybe size).

On the plus side, if Ayden Jane ever suffers from day time sleepiness, I just might have a cure.

Thursday, December 23, 2010

James Island Festival of Lights

Last night Gary and I took Mckenna and Ayden Jane to the "James Island Festival of Lights." It is a big county park that has tons of lights up both to drive around and see and to walk all through the walking path and see. It is a bit of a drive from here, but it was so worth it. The girls had a great time. Mckenna climbed the climbing wall like a champ. Ayden Jane sobbed bitterly that she was not big enough.... She so wanted to climb just like Mckenna and I have no doubt she would have made it to the top. Getting her down would have been the challenge!

(Mckenna is in yellow)

She did get to ride the carousel and was very excited that she rode a lion. She kept telling us over and over how she did a good job riding a lion! We walked all through the path and Ayden Jane ran with Mckenna from lights to lights. The funniest was a jumping frog. It was lit at one end as the frog 'sat' for a few seconds. Then the lights moved and made it look like the frog was jumping onto a lilly pad about 5-10 yards away. Mckenna kept telling Ayden Jane to catch the frog and she ran from one end to the other. Everytime she would get to the frog just as it was gone. A little cruel maybe but hilarious!

Here are a few poor pictures of the girls just a couple of the hundreds of lighted figures. (I really do need to get a real camera)

Sunday, December 19, 2010

Christmas Break, just the beginning

Well, we are officially on Christmas break. Ayden Jane had her Christmas program at school on Wed. and she did great. I had to laugh as for about half the program she was turned around facing the other kids singing. I think they were just way more interesting than the parents! At any rate she sang some and seemed to not mind her time on stage and looked adorable in her little angel costume. I consider it a victory.

Kayla has finished her term paper and is finishing her college applications then she leaves for Guatemala on Tue. She is so excited about the trip and is thrilled to be done with the paper!

Noah is just thrilled to be back to his normal biological sleeping pattern. You know, go to bed at 2 and get up at 10.

Mckenna is so excited about Christmas it is awesome.

Gary is working tonight and tomorrow night and then is off until Christmas night. He is really looking forward to just enjoying the Christmas excitement of Mckenna and Ayden Jane.

I am just hoping the weather cooperates and lets the kids outside a bit. Ayden Jane in particular does not do well locked inside (as do any other 3 year olds). Luckily, the big kids are pretty good about playing with her. Hide and seek, tag, wrestling, puzzles, play doh.... Nothing replaces the trampoline though! Food is tough during this time. I mean what do kids do on cold rainy days filled with video games and movies? EAT. So far it has not been too bad, but it would really help if I could distract AJ with outdoor games... (can you detect some desperation?) Maybe in a few days.

We did ride through a couple of neighborhoods tonight and Ayden Jane loves the Christmas Lights. Each time we come to a house that is lit up, she yells with excitement. Very cute.

Tuesday, December 14, 2010

HOT, don't touch

One frustration with Ayden Jane is that she seems oblivious to getting hurt. She will not take my word for anything dangerous. She is capable of learning that things are dangerous, but she brings new meaning to the phrase, 'learning the hard way.' Example: Hold on tight when you swing high. She grins and lets go. Ouch. One pretty big fall with amazingly no bones broken and she has never let go again.

One of the big worries I have had is that she always wants to do whatever I am doing and when I am cooking, she wants right in there with me. Hot stoves are a nightmare. Opening an oven door, ugg. Hot water, hot tea, hot cocoa are all things she is dying to discover the meaning of.... HOT.

Well, yesterday it finally happened. I was making soup and turned on the stove burner. I mistakenly turned on the front burner when I meant to turn on the back (how long have I had this same stove and do this constantly?). I noticed pretty quickly and switched them, but before the front one could cool down all the way, Ayden Jane put her hand right on it. If I could have designed it to happen I have to admit this would be it. She burnt her hand enough to get a full understanding of HOT and burning, but will be left with no real damage. Now maybe I can lower my stress when cooking.

Monday, December 13, 2010

Hustle and Bustle

Wow. Busy. I think that sums up the holiday season right now. Not bad busy, in fact fun busy... busy. So how is AJ handling the hustle and bustle? She loves it. She seems to thrive on activity.

Today her school had a Christmas Party. I have to say that the other mom's in her class are awesome. They have gone out of their way to include Ayden Jane and I haven't really, formally in any way explained AJ's challenges. They basically know that there are some pretty strict dietary issues and they don't think I am a fruitcake or anything for the way I am feeding her. So nice not to have to hear, "well just one cookie couldn't hurt..." I have had 1 mom send home a Christmas gift of a cute little reindeer with a treat in it. She put almonds in AJ's :) Another mom contacted me and wants to send home a chex mix treat and asked if she could do mixed nuts and a little dried fruit for AJ :) Then, the mom's doing the Christmas party made sure I knew the menu ahead of time and I was able to send in a similar item in the grain free variety for AJ. So far so good. Ayden Jane has enjoyed the parties ect. at school and we have found alternatives for her for those occasions.

Ayden Jane's play continues to advance. Today she spent quite a bit of time making 'cupcakes' for us for our birthdays out of playdoh. (I make an almond butter muffin which AJ call's a cupcake) Apparently we were to attend our birthday party at school as AJ wanted to pack up her little back pack just like we do for school. She instructed us on how to get ready and go to school...She also decided that her babies were sick so she took them to Doctor Noah. He made them all better.... Only to have them hurt their legs...

As for Christmas? We went to see Santa on Sat. Well, we went to the mall to buy running shoes for mom and Santa was there so we decided to go say hi. It was hilarious. As we stood in line Ayden Jane switched back and forth from, "I like Santa Claus (with a big smile) to I not like Santa Claus (with a very furrowed brow)" By the time she was next she was really excited. She trooped in to see Santa and, of course, stood just out of his reach as stiff as a statue, went suddenly mute and stared. He worked on her for hugs, high fives, words... nothing. Finally he pulled out stickers to give her and she moved, smiled and whispered thank you. The moment we crossed out of 'Santas House' AJ went back to chatting up a storm and being her totally expressive self.

You can't see it, but the sign in the background says Santa's Beach House. That's for you northerners.

Just cute.

The reindeer in the adirondack chair just cracked me up.

Wednesday, December 8, 2010

Frigid Temps. and the NEED to get OUT

Being that we live in coastal SC, we are mostly warm weather people now. Occasionally, the cold northern air creeps down this way and we are always completely ill prepared. It is just hard to spend money on extra warm clothes... that we wear a week or so in the course of a winter. Let alone, convince Ayden Jane that such layers should go on her! She still fights the light jacket with a passion. She much prefers short sleeves and in fact, would skip the whole clothing thing all together if she had an option. The result is that we just become house bound like we have this week. My solution? Last night we headed to Leaps-n-Bounce. It is basically a playhouse of big inflatable jumpy houses and slides. Mckenna was awesome and played with AJ for about an hour and a half. They climbed the giant slide and slid down over and over. I let the 2 of them head off for the first half and then I joined in for the second. We all had a great time and warmed up quite nicely. Wow did Ayden Jane need that trip!

Today we had PT. Jen was happy with what she saw considering the recent road trip and what AJ looked like after the last one. I told her the 2 new things I am noticing are that AJ is playing with tiptoeing a lot. Not that she has to, or does it in a way that raises new concerns, just having fun playing with it. The other is the extra amount of falling from leaning on (melting into) everything. She also falls off the edge of things a lot, like the booth at a restaurant.... Sounds like body awareness. We are guessing AJ maybe growing again and trying to adjust. Although, tonight after PT and a nap, Ayden Jane was a wild woman. I am beginning to wonder if we are headed into another spurt of some sort. I am not sure I am ready for 2 weeks of wild woman. I guess I will know for sure in a couple of days.

Jen is working hard on some core things for AJ. Jen now combines fine motor, balance, core... so much that I am not totally sure of her focus sometimes. Today she had AJ do a lot on the ball. One activity she had AJ lay back and get some pegs for a tower on the floor behind her. Then made her use the abdominal muscles of Jen's choice to sit up. I am not sure I could do it. No complaints from AJ though. She just threw herself back to get the next ones... Also working shoulder girdle with some prone reaching on the ball, definitely not AJ's favorite. Finally, Jen had AJ stand on a wedge that can be blown up, or in this case deflated a fair amount. It is bumpy which AJ loves but is definitely hard to balance on. Of course, Jen had her do something with her hands while on it, in this case string some beads. I had to chuckle because AJ would do great but begin to struggle with balance a little when she added talking. Brings new meaning to the saying, "can't walk, talk and chew gum at the same time."

So what does the possible beginning of wild woman look like? Well last night AJ just did not sit still. The night before she had been to leaps-n-bounce, then went to school all morning, had PT after school and a nap. She then proceeded to climb all over and wrestle with the big kids endlessly. She pulled out nearly everything from the closet, played with toys for moments a piece and managed to get into things quicker than we could notice. She was also spotted doing things that are a bit dangerous. As I began this post last night (which I had to stop to put her to bed) I turned to see her climbing on top of the exercise ball which she had placed on the sofa! I asked her what she was doing and she told me she wanted to bounce high. Of course, she had not considered the landing!

With all the craziness, though, she has sort of 'found her play zone' a few times. For a bit last night after all the big kid wrestling and a trip to the play place she settled for a little while (before attempting to launch herself off the sofa). It is really cute to listen to her. She was playing with her Noah's Ark and the animals. She was talking for them and making up all sort of things. It really reminded me of Noah at that age. He played with corps men for hours. We would hear conversations, sound effects....

Changing and growing so much. Maybe we will be lucky and this will be a smooth little spurt.

Tuesday, December 7, 2010

Humor and Imagination

Ayden Jane often asks, "Am I funny?" (sounds a bit more like 'a my punny') She totally wants an affirmative answer. It seems she is full fulling her role of the youngest sibling who tends to be a bit of a clown. She takes great pride in being funny and will go to great lengths for a laugh. Here is one example: AJ was waiting for me to come read her a book and I was in the kitchen talking to Kayla. As typical, AJ became impatient so she pipes in with, "Kayla, stop talking." We chuckled at that and I told AJ, I was coming. She called back toward the kitchen to tell Kayla something and Noah piped in with, "Ayden Jane, stop talking." AJ totally got it, grinned and ran into the kitchen and made up something to talk to Kayla about. Of course, she ended it with, "a my punny?"

Imagination is beginning to show in a couple of ways. Ayden Jane is creating games for us to play and is becoming much more elaborate with her play with babies and toys. Today she cracked me up with a new 'game.' She was trying to climb a tree, so I off handedly asked her if she was a monkey. She said, "yes, I monkey George." It was cute but I did not think too much of it. We got into the car and on the way home I asked her a question about something. She told me that Ayden Jane was all gone that she was monkey George. Mckenna and I laughed and asked her where Ayden Jane went.... Shortly there after she said AJ was back and was so excited that we had missed her.... She was quite pleased with this new game. Yes, she transformed back and forth between monkey George and AJ many times on the way home. She loved having us miss her terribly and then be so thrilled each time she came back. (I am guessing this game will be old for mom very soon)

On a follow up note, so how did Ayden Jane handle the trip? Much better this time. I think it was a huge help to have her up and so active before we left. I definitely feel that her tone dropped from the car seat time, but I it was nothing like the last trip. Jen will be here tomorrow to give her input. The low tone trick AJ is up to these days that is driving me crazy is leaning on everything. It is like she melts into things and, of course, ends up knocking things over and falling constantly. She will melt into people, doors, curtains, chairs... some things are stable and some are not. Ayden Jane does not seem to notice this fact until the crash.

Sunday, December 5, 2010

Raising Teenagers

Yesterday we traveled about 4 hours (each way) for Noah's state cup soccer game. The boys lost a heart breaker as they really out played the other team but gave up a penalty kick to an inadvertent handball in the box and one bad play by the keeper. No real earned goals... Noah scored the only goal for our team and played well but was very upset when he missed a shot with about a minute left. Poor timing and communication left him in a bad position to make the shot which could have tied things up and sent them into overtime.

Noah has played with many of those boys for so many years and the possibility that he may move on to new things next year makes it a bit sad. He was so hoping to go out with a real run at the state championship. I am a proud Momma though. He plays up an age group (and always has) and he has worked hard over the years to become an excellent player. I am not sure what the future holds for him, but I know that he has learned to work hard and get along with all sorts of people. He has learned how to lead over the past couple of years. He has learned how to not only dream, but to do the things necessary to succeed. Whether in soccer or education or work or .... life; he will be able to apply those same things. The teenage years are an amazing time to watch your kids. I have been honored to be apart of the lives of 2 incredible teenagers so far.

Kayla is on the verge of college and truly beginning her adult life. She is focused and intelligent and caring and wants to use the giant brain God gave her to help people through some form of medical research. She knows and loves God, makes great choices even in the little things and treats others with respect. I would love to think that there is a magic formula we used on these first 2 that will work on the next 2. I suppose to an extent there is. Pray for them, listen to them, pray for them, talk to them, pray for them, listen to them...

That's my plan and I am sticking to it.

Friday, December 3, 2010

School Happenings and Aching Legs

I picked up Ayden Jane from school today and chatted with her teacher a bit. One of the things we talked about was that AJ seems to get along much better with the assistant now. I know I have not mentioned anything before and I can't say that AJ was necessarily bad to Mrs. E, just that she tended to argue more... with her. There just was not much of a bond between them. Mrs. J went out of town with her family over the Thanksgiving Holiday so Mrs. E was left in charge. It was great for Ayden Jane and after a few days of school where she had to lean on Mrs. E, I can say that AJ is now very comfortable with her.

I do have to say Mrs. J is amazing with Ayden Jane though. It is fun to watch as J seems to know when to give AJ a moment to process and when to just jump in and move her right alone so we don't get 'stuck'. It is very clear to Ayden Jane that Mrs. J is in control of the situation, but also that she loves AJ. This kid will definitely always need a teacher who is 'in charge' as AJ moves quickly to fill the void of power without a strong leader.

The other thing Mrs. J told me was that Ayden Jane had an amazing day. (I LOVE it when that happens) She was making a Christmas tree project of some kind and was counting the circles... Now Ayden Jane has been able to count to 10 for a while, but has been in the stage of not really getting the one-to-one correspondence. She now gets it. Not only that, but Mrs. J said she was counting objects into the teens. She also said that she is talking up a storm and totally gets what is going on.

Now if I could just get AJ to stop asking me how old I am. She understands that there are things called birthdays, but is having a hard time figuring out when you have one. She keeps thinking that maybe today I got older, or Mckenna, or Noah... you get the pictures. Impressive, though is that she totally gets that a bigger number is older. Seriously, this is the same kid who on her birthday in Oct. could not count to ten and had no 'number sense' whatsoever!

In other news, I am officially feeling the pain of training for the marathon again. Today was 17 miles! Watch for marathon updates and fundraising news coming soon.

Wednesday, December 1, 2010


First language: Ayden Jane has become more imaginative, or maybe she can just now express her imagination. A few days ago AJ and I were out back playing and she asked me, "mom, you want to play a game?" I, of course, told her I did, although between you and me I was not too interested. Ayden Jane proceeded to ask me if I wanted to play a new game. Now I was interested. She began describing the game and making up rules and things to do. It did not make too much sense, but it was amazing to watch and listen to her create something and to be able, at least to some degree, explain what was in her head.

Next physical therapy: Jen was much happier with Ayden Jane's posture this week. (I have been too) Although the tape on her legs only lasted a couple of days, the benefits seemed to last longer. Ayden Jane had turned on the tone and pretty much kept it on. So Jen's plan was to not tape her this week and see how things went with our up coming trip... Part way into therapy, however, Ayden Jane asked her, "Jen, you brought you tape?" Jen told her she thought it was in her car and asked her through a series of questions if she wanted the tape on her and where. Ayden Jane was asking for tape on her legs. I believe this is a bit odd as Jen was surprised she would ask to be taped. Ayden Jane does seem to have a good ability to tell in her own way what she needs though. After taped, she again played with her balance a bit and gave Jen a laugh. Then she proceed to do a great job in therapy. I think my favorite was when Ayden Jane again became LOUD like she did after last weeks tape and Jen was able to witness and get a good laugh out of the tapes side effects.

So the plan for the trip this weekend is that we will leave about 12. I will take Ayden Jane to the park, bounce on our trampoline, go swimming... whatever works that morning to wear her out and be sure she is as 'on' as possible. Then she should nap at some point on the trip. About 2 1/2 to 3 hours in we will stop and stretch our legs... Then on to the last hour of the trip. We will be on a soccer field for about 2 1/2 hours so I will be sure to bring a few things for her to do. We will get dinner before heading back and it should be her bedtime by the time we are on the road again. Sunday we will know if car seat time is a major problem or if it was just the quantity and timing of the last trip that caused the problem.

Finally, school: Another student in Ayden Jane's class had a birthday this week. It came with cupcakes... for the kids. I had put some grain free mini muffins in the freezer that Ayden Jane calls cupcakes and told the teachers to give her 2 in place of whatever 'treat' was brought. I hear it went great. So far so good on that front. I have found the easiest place for problems to occur is in the liquids. I am not sure what to do about that, but I may end up sending in some almond milk too. Ayden Jane just does not really like water, okay she barely tolerates it without 'spiking' it. It is amazing how little of something I can put in it and she will be thrilled. Trying to get the teachers to understand that AJ can drink water with a dash of juice, not watered down juice. I guess I should send in a Tbs. and tell them she can have this much juice in her water. Hmmm. Just might try that!

Friday, November 26, 2010

Holiday Photos of Our Surfers

It was very cloudy, but we had all four kids home and clean at the same time so off we went.

I love how the personalities of all our kids come through in these pictures. Kayla is so sweet, Ayden Jane is always finding a way to be funny. Noah is our resident ham and Mckenna, well, you never can tell what Mckenna is up to but it is always creative (as you can see from her surf board).

This was Ayden Jane and I taking a walk on the beach. She loves to walk down the beach, look at the birds and shells... The clouds were really rolling in and there was even a slight shower, but AJ was determined to take our usual walk down to the pier and back.

Thursday, November 25, 2010

Taped Knees = Tone

Okay, so I do not really understand it all but here is what we saw today. Ayden Jane's legs are taped which keeps her belly in ('turned on') and results in a very LOUD child. AJ has been great all morning but is talking so loud the other kids asked if her hearing has been checked. Amazingly the stutter is gone (well, back to an average 3 year old stutter). I am guessing the stutter would have resolved on it's own over time, but something about turning on the tone in her body accelerated the process.

At times I think that Ayden Jane no longer has trouble with low tone, but this experience proves to me that there is just an underlying tone issue in Ayden Jane. That she has learned to cope and over come it, but it is alway there lurking as their natural tendency. It is not a strength issue, it is better described as a neurological issue. It is more about signals than actual abilities. More about the involuntary system than about what we actively do. It can be improved by doing more and connections can be laid over time (over a frustratingly long time for some), but it is just something that people with PWS have to work at that just is there for those without PWS. I am really okay with that. As long as it can be improved we will work on it.

We have another big travel day coming up Dec. 4. We will go 4 hours to a soccer game for Noah and then home again in the same day. We will see how it affects AJ. Jen will help me brainstorm some ways to keep her tone turned on during the trip.

We had a great Thanksgiving Day. Gary and the kids played outside for much of the late morning and early afternoon. AJ then took a great nap and was ready for supper when it was time. She had turkey, carrots, green salad with almonds and a baked apples and walnuts concoction. On the table and enjoyed by all were also mashed potatoes and stuffing, but Ayden Jane was very happy with what she had. It was quite stress free. When we headed for desert, we gave AJ a bit more apples and walnuts but topped it with about 3 tablespoons of plain vanilla ice cream. She was thrilled! So far, family is slowly changing toward AJ's diet and AJ is accepting of, "no you can't have that, but you can have_____".

So a bit of comedy to end the day. I told Ayden Jane to take off her socks, shoes and pants and put her pull up on for bed. She went to the bedroom to do so and came back very proud of how funny she is with 4 pull ups on. Even way past bed time on a crazy day the kid is doing everything she can for a laugh.

Wednesday, November 24, 2010


Jen taped Ayden Jane's legs today in physical therapy. It was very entertaining to watch AJ play with the new feeling of tone and balance after the taping. It definitely pulled the belly in though. This is what it looked like from the back.

And from the front, although as you can see it was hard to get AJ to stand still.

It is was a good day of PT and Ayden Jane's static balance is really improving. It is so interesting how tone effects her. She has the full ability to stay, 'turned on' she just doesn't. Weird.

As for her speech, we are still struggling with a pretty bad stutter. Not sure what to do to help it resolve, but I believe it will take care of itself in time.

Tuesday, November 23, 2010

Fun Pictures and a Video

First off, Happy Thanksgiving from St. Peter Lutheran School. The best little preschool around. They just love Ayden Jane for who she is, quirks and all. I chatted with a couple of mom's from there, something I just had not had a chance to do, and found that 2 or 3 others speak the language of therapy and doctors... The school is such a blessing.

The pictures are just a couple of AJ in her Turkey hat with all her friends at the thanksgiving feast.

They served chicken nuggets as 'turkey', a cornbread muffin which I swapped out for a grain free almond butter muffin, corn on the cob and green beans. We just opted out on the pumpkin pie, but most kids didn't eat it either!

Mckenna and Ayden Jane just doing their thing around the house. Mckenna is such a great big sister.

This one is from the Daddy Day a while back. Gary took the girls and found a fun jumpy house along the way.

This video we took real quick before we had to head to one practice or another. Ayden Jane is holding her hands like that so she doesn't lose her silly bands. (those things are beginning to drive me crazy) I will try to get lots more over the holidays.

Sunday, November 21, 2010


Kayla was chosen to play in the North/South State All Star game for volleyball. It was at Erskine College which is nearly 5 hours from home and she spent 3 days there. She had a great time and Ayden Jane and I got to go watch the big game on Sat. Five hours is a long time to drive for one game, especially for a 3 year old. Ayden Jane has proven to be an amazing traveler though. It is strange, though, how long trips affect her muscle tone and even neurology. I remember when she was really little too much car seat time always made her feel a bit mushy, but I thought she had out grown this. We learned different on this trip.

On the way back, AJ was stuttering unbelievably! It was like the first syllable of what she was saying was about 15 seconds long (literally). Then a more typical stutter would kick in. Here is an example that we heard MANY times. She was trying to start a sentence and was calling me saying, "hey Mom." It came out, "heeeeeeeeeeeey, Ma,ma,ma,ma,ma, mom." Then she would get a couple words out of what she was trying to tell me and get stuck so she would start the whole sentence over again and it was just as painful. Kayla and I laughed ourselves silly listening to her at first (only because we really believed it would be gone the next morning), but eventually it was just painful. Kayla, being the great big sister she is, spent about 45 min. playing "flying hedgehog with her to get us home." It involved throwing a toy back and forth and would normally not be tolerated in a vehicle!

So, how did she wake up this morning? Stuttering a tiny bit, but nothing like last night and she is sticking that belly out for sure! Good thing is that I am sure she will get it all back in shape in no time, but it is still fascinating. Talk about use it or lose it! Just one more bit of evidence that daily activity will be mandatory pretty much for the rest of her life.

Wednesday, November 17, 2010

Hanging Belly not the Belly's Fault

Ayden Jane is down off this last spurt and we are seeing more great things. However, it seems we also have to deal with a bit of fall out as well.

I e-mailed Jen yesterday to give her a heads up that Ayden Jane is really sticking out her belly. When she is just standing still it looks a bit like a gymnast having just finished a routine and throwing up her hands and arching her back. I am really not sure sometimes how she does not fall over! Now as long as she is active and moving, she lines up much better, but when she is in a static stand, well, YUCK is the best way I can describe it.

So we had therapy shirtless today and Jen tried to address the belly. She was not happy at all with the posture! She tried cueing some muscles... and ended up using kinesio tape on AJ's belly. Ayden Jane calls it her super belly. Then Jen was still not able to get AJ into the correct posture so off went the long pants! Jen found the root of the problem was in her knees! I certainly did not think to look there! Basically, when standing still AJ is hyper extending her knees and 'hanging' on her ligaments at her hips for stability instead of keeping muscles turned on.

Okay, stand up. Lock your knees, let your hips fall forward relaxing all belly and upper body muscles and let gravity take over. Yep, a bit like being 9 months pregnant. Now, bend your knees just slightly so you have to turn on your quads. Amazing how everything else turns on isn't it? So Jen did lots of things with AJ that made it so she had to keep everything turned on. We had AJ in a big saucer standing on a stool so that she had to keep it all activated to keep her balance as she reached for a toy or put together pegs. She had her stand with one foot up on a couple of books. She even had AJ roller skating through the house.

We are going to give Ayden Jane the week to sort out her 'new' body from this last spurt and then Jen will decide if we need to block her knees. I don't really know what that means, but it has something to do with not allowing her to lock out her knees... It has happened before that as Ayden Jane goes through a growth spurt it takes a while for her body to sort itself out, so we are hoping that is all that is going on. I am so glad that I have Jen to keep such a close eye on AJ. She manages to correct things before they become too much of a habit or are able to cause any structural issues.

I will try to get some video of Ayden Jane tomorrow. She has the most adorable little gallop now when she goes from place to place and her run is looking good. Words just can't do them justice.

Tuesday, November 16, 2010

I've Come a Long Way

Yesterday I had the pleasure of meeting another PWS mom and grandma and their 2 beautiful girls. We visited for the afternoon and talked and got to know each others kids. I have to say Ayden Jane was awesome as she traveled 3 hours in a car to go meet people she had never seen before and spend the day in a place she had never been before. I think that is enough to make most 3 years olds a bit grumpy and out of sorts. Ayden Jane was her independent self, but her behavior was great and she enjoyed the playground and the house of 'new' toys.

I think Ayden Jane worked her magic and brought a ray of sunshine to the families day. I know that I would have given anything to have a 3 year old like AJ run though my front door when I was struggling to figure out what the diagnosis of PWS meant. I tried to answer questions and just show that our life is pretty normal. Well, as normal as a family of 4 kids with 14 years between them and a husband who works nights can be. The time was definitely too short as I felt we could have chatted and played with the girls a whole lot longer, but it was fun.

For my part, it made me realize that it is not just Ayden Jane that has come a long way. I remember the constant worry about AJ, but I don't feel it ALL the time anymore. I remember worrying that she would never __________ (fill in with smile, crawl, walk, talk, read, have friends...). I remember the urgency of every feed, every therapy, seemingly every minute of the day. I remember the feeling that we were one small step from her somehow waking up one day with the entire list of possible challenges provided by PWS. It was oppressive. The first years were just HARD. Oddly though, I knew there was worry and pressure.... but when in the middle of it you just keep going. I remember watching how hard AJ was working and I knew I had to do everything I could to help her. It was interesting to step back in time a bit. To see a Mom facing that worry head on, a Mom in the trenches doing everything possible, a Mom facing a giant unknown with determination and love for her child.

Good parents are amazing but special needs kids teach you as a parent a range of emotion, challenge, strength, worry... you never asked for but, in the end, are unbelievably thankful for. It is a wild ride, and although I would take the challenges away from AJ in a minute if I could, I am truly thankful for the ride.

Sunday, November 14, 2010

Happy Birthday Lilah

Lilah is a little friend of Ayden Jane's. She is an adorable bundle of energy and if Ayden Jane manages to even remotely keep up with Lilah through the years she will excel. Today Lilah turned 3. Now, I realize that it is not remarkable that there is an adorable little girl named Lilah who happens to have turned 3 today, but what is remarkable is the change in AJ since she turned 3 just 6 weeks ago.

At Ayden Jane's birthday we worked for about a week to master saying 'Happy Birthday'. She still did not get what I was talking about. She did not really know what presents were about. She did not sing really any songs on her own. She was not good with numbers. She still talked mostly in the same phrases and joined in our conversations by asking one of 2 or 3 standard questions which had nothing to do with what we were talking about.

So, yesterday I asked Ayden Jane if she wanted to get a birthday present for Lilah. Her answer, "Yes. I get Lilah a present for her birthday. Lilah is 3 just like me. She not 2 any more." We picked out a present and the rest of the afternoon, Ayden Jane kept singing, "Happy Birthday to Lilah, Happy Birthday to Lilah."

I am so looking forward to Christmas. I have been amazed at how much she already understands about the holiday and the excitement of it all. She gets the idea of giving and receiving presents. She is becoming familiar with nativity scenes and Santa Claus...

I wish I could describe the cognitive light that has come on. She is just so much more aware of her surroundings, and thus is just more a part of everything.

Friday, November 12, 2010

Music Class and Behavior Issues

Today I went to Ayden Jane's school and watched her with a new music class. It was a sort of free trial and is run by a woman who has been doing kindermusic ect. for years. I love watching Ayden Jane with the other kids at school. There were just 3 from her class that stayed. Her's is the youngest class in the preschool so it was fun to watch Ayden Jane with older kids (1-2 years older). AJ was so excited to sit by a friend we see at horses. She was a bit slow at first, but by the end was not shy at all. She even spoke right up to the teacher whom she had never met before. She joined in with the marching and tapping... My favorite was when the teacher passed an instrument around and when it was AJ's turn, she was a little shy. She held the mallet but did not hit the instrument. The teacher told her she did great and to pass it to the next person. AJ said, "wait, I gonna hit it first." Sure enough she took her turn, was so proud and then passed it on. Very sweet. I had to chuckle though when the teacher told them all to hold hands and her little friend went to take hers. Ayden Jane jerked her hand back like it panicked her. In the end she looked at her friend and reached her hand back toward her nervously. On the way home she just kept saying Ellie hold my hand. Ellie my friend...

Now on to the not so cute. Ayden Jane definitely has some behavior issues. Mostly, they center around her ability to suddenly freak out when things don't go her way or she want something and the answer is no. The one that drives Gary the craziest is when you attempt to help her and she screams as though injured or at least insulted. No this is not entirely surprising as she is 3. I guess what is odd with AJ is how quickly she reacts this way. For the most part, I try not to appease the panic, but to tell her I cannot understand what she wants when she talks like that. Or to calm down and use big girl words. Or just plain, stop whining and tell Mommy what you need. She is capable of doing it now for the most part. She will still push beyond this (and cause Gary to nearly flip) but I think she is at a point where she can really understand and learn to control herself. Not sure how to make the leap from getting her to calm down and talk to us to catching herself and using words first. I think that battle is one that will have to come down the road just a little bit.

It reminds me of when the older kids were little and they never remembered to say please without prompting. Example: Mom, I want an apple. Me: How do you ask? Kid: Please can I have an apple? Me: yes. I moved to this: Mom, I want a snack. Me: you did not use your manners. Go play and try it again in a little while remembering to ask right the first time. 5 min. later, Kid: (amazingly) Mom, may I please have a snack

It is not the same thing, but I think the same concept will need to be applied. For now, I am in the prompting phase. It is all AJ can handle. Hopefully, she will 'prompt' herself, but if not I will have to figure out how to crank it up a notch to help her learn to do so. (It will greatly improve Gary's sanity)

Wednesday, November 10, 2010

On the Other Side of the Wave

Ayden Jane is definitely still 'coming down' from this last wave, but I love what I am seeing so far. Of course, maybe some of the reason I love it so much is that I am just coming off 2 weeks of insanity! Let me recap that last 2 days.

If you read a couple of days back, you know that Ayden Jane had a great day of ST and at school. I left off before we headed out the door to horses and she was about to take on Mrs. Rona and convince her that AJ was riding Zip. Well, I arrived a bit early to horses so she could talk to Mrs. Rona before they got all the horses ready. Rona was teaching a group lesson so I thought Ayden Jane would like to watch for a minute before our turn. Hmmmm. Ayden Jane sit quietly and watch... not a good plan. AJ went to the gate and yelled out, "Mrs. Rona! I ride Zip tonight." First of all, the barn was quiet with the exception of the little bit of sound the horses were making in the dirt and Ayden Jane was LOUD! It was all I could do to get her to stop yelling. Luckily, one of the volunteers offered to Ayden Jane to take her to pet the horses... Once Mrs. Rona was done Ayden Jane went to her and loud and clear said, "me ride Zip, not Tamara." Rona tried to convince her to ride Tamara, but in the end we just decided it was way easier to call Tamara, Zip for the evening and be done with it!

Once on the horse, Ayden Jane did not slow down the talking or the volume. Jen (our PT) came for her monthly visit and was very excited to see how much action she gets on Tamara and how great she looks up on her. Jen took her shoes off to get her to do some tricks, but that sent AJ over the edge. We think there is just so much going on when she is riding Tamara that taking the shoes off just sends her over the edge. Anyway, she rode for an hour and would have kept going, but we had to head to Kayla's volleyball banquet.

After the eating part, which was pretty short and sweet, the coaches went into awards presentations. Ayden Jane was loud and funny and could not sit still. She wanted to know when she was getting her trophy. When Kayla was called up for all state honors Ayden Jane went with her. It was hilarious. We tried letting Mckenna take her out into the lobby to play, but she took it as license to sprint. Luckily, most of these people know enough about Ayden Jane to know that she is amazing and totally find the irony in her being so active and loud. We've spent 2 years trying to get her to talk and be active. How do I turn it off when necessary?

Okay, so at this point it is about 7:30 and we have had ST, school, jumped on the trampoline, horses and the banquet. You would think that we would be ready for bed. Nope. Ayden Jane went strong running around the house teasing and chasing and jumping on the bed. She took a nice warm bath... no help. Finally, about 9 she wound down. The good part about AJ is that the amount of time between winding down and falling sleep is generally about 2 min.

Today she was up at 6:30, went to preschool and had PT at 12:30. She showed many positives from this spurt! Woo Hoo!!

1. She is completely conversational. Nearly gone are the, "what color your eyes?" ect. sort of programed questions she used to rely on. In fact she engaged Jen in a conversation about her dog (AJ even remembered its name is Hogan) and her kids... I had to translate waaaaay more than I used to for Jen, but it was totally because AJ is coming up with such original ideas that you cannot predict what she is saying. She pulls things up from months ago and connects new thoughts to old conversations. It was really quite amazing (and entertaining) to watch.

2. She had some great stability in half kneel (something we have been working on for a while)

3. She is following long directions really well.

4. She shocked Jen 2 times by asking about or commenting on our conversation. Jen and I are good friends and we were talking about things that have nothing to do with AJ and yet AJ showed by the way she added in that there is no more talking around her and assuming things are going over her head! (I think this is positive)

We bounced with Mckenna for a while and Gary just took the littles to find more entertainment. She is still non stop action, but under control now. The whining is ending, the 'itchies' are better and she can slow down and listen again. Whew.

Tuesday, November 9, 2010

Baby 'Luke'

Ayden Jane was absolutely hilarious tonight, but my heart cannot stop thinking about this. Ayden Jane's antics can be the topic of tomorrow.

Baby boy "Luke" born September 7, 2010


Born full-term at 39.5 weeks

6 lbs 4 ozs

19 1/2"

Baby Luke was diagnosed with Prader-Willi syndrome. He was discharged from the hospital on October 25th, and is with a temporary care family. He is being fed by a g-tube and is doing very well. A speech therapist, occupational therapist, and physical therapist have been working with him weekly. Both birth parents continue to express a strong interest in making an adoption plan for Luke.

Birth parents are educated professionals. Birth mom received excellent prenatal care of this planned pregnancy. No history of alcohol or drug usage. The birthparents are willing to consider an adoptive family residing anywhere in the USA. Their number one concern is that an adoptive family will have a great deal of knowledge about Prader-Willi syndrome and be ready to offer a structured environment in a loving home to their son with full understanding of challenges the child may face. Birthparents are not requesting an open adoption.

Please let us know as soon as possible if you would like to be considered as adoptive parents for this little boy.

Thank you,

Leslie Wright, MSW

Birth Parent Counselor

Family Resource Center

5828 North Clark St

Chicago, IL 60660


Speech Therapy and Horses

Ayden Jane has been involved in Speech therapy since she was 15 months old. It is a little hard to tell with ST just how it is helping. Our original ST was great with AJ and helped get her going. Since AJ turned 3 she has been going to ST at our local school and seems to love the switch. It has been a change for me too as it is our first therapy where I drop her off and pick her up. Nope, I don't even stay. (Of course, it helps that I have worked with Mrs. R before and am completely confident in her.)

So, is it helping? Today we did ST at 8:30 before we headed over to AJ's preschool. As AJ climbed into the car after school her teacher said, "she was sure chatty today and I could understand most everything she was talking about." I guess we will keep ST! (As if there was any doubt.)

Now it will be interesting to tell over time whether these new language skills are from the speech therapy this morning or if they are a grand result of our latest sensory spurt.

We did not have horses last Tue. so it feels like it has been a really long time since we have been there. A couple of days ago AJ decided it was time to go see Zip. We spent about 15 min. in a 'discussion' about how it was not our day to go ride Zip and that Mrs. Rona was not at the barn and how Zip was sleeping... anything and everything I could think of. Of course, that simply made AJ inform me that I should call Mrs. Rona, wake up Zip, get my keys to unlock the barn... I think her little body just knows sometimes what it needs and that is a great thing. She is also tenacious and is willing to work incredibly hard to satisfy that need which is a quality that has helped bring her so far. It does not mean, however that I can always accommodate her! It is hard to be 3 and know you are right and not be able to get anyone to listen.

Tonight we have horses. The interesting thing is that Mrs. Rona switched Ayden Jane from riding Zip to riding Tamara last time. I have tried to tell AJ that she is riding Tamara tonight but she just 'informs' me otherwise. I told her that it is up to Mrs. Rona so she will have to talk to her about it. She says she will tell Mrs. Rona she is riding Zip. Let's just say, Mrs. Rona has a huge heart, but even the horses know better than to take her on head to head. I am almost looking forward to it.

Monday, November 8, 2010

Good Stuff

Ayden Jane has been great since the swimming. She has laughed way more than whined or argued. Huge improvement. I really like this kid. I am looking forward to PT this week to see what Jen thinks. It is always the ultimate test because Jen will sort of stretch her little muscular and neurological systems and get them working their hardest. She has AJ do things that are demanding alone and also gets Ayden Jane to combine challenging skills in one activity. If AJ can begin to do this again without losing quality, getting frustrated or trying to quit, we will know we can breathe deep for a little while. The big sensory wave will be over for now. If you have been following for a while you will know that these are a pattern for Ayden Jane. I would say that the intensity varies and the length between them varies. The seeming constant is that, for AJ, they seem to always last about 2 weeks. (which also happens to coincide with the amount of time I can last before thinking I can't do this anymore) Also, we usually see some sort of big gain when they pass. The gain is getting harder to see, likely because they are more complex. In the past, gains have been easy to measure. Suddenly she can jump. Or suddenly, she is using nearly complete sentences. Or suddenly she was able to put together every puzzle in the house. It seems to me that there is definitely a cognitive spurt going on as her conversation continues to surprise me, but I will be interested in what Jen 'feels' in her.

She is not doing great with the time change, but luckily she is back to being at least a bit patient. This morning she woke up about 5:30 (which was 6:30 in her own time clock) and wanted to cuddle. This is common in the morning and she just crawls in and falls back asleep. Problem came when, at 6:30 she wanted up for good. (Of course, to her clock it was 7:30!) Well, I turned on Clifford and she was content to sit and watch and chat until nearly 7 when it was time to wake Mckenna. I think we will use this pattern until she gradually shifts her clock to line up with the rest of the house.

Funny stories: Ayden Jane still likes to use her 'little potty.' It is a Winnie the Pooh potty we got at Walmart and it has a handle that when you 'flush' says, "all done," followed by the sound of a toilet flushing. Ayden Jane will often bump it as she sits down. She responds, "I NOT all done." Secondly, during this last little sensory spurt Ayden Jane decided she would only wear her 'stripey' pants. They are a pair of pants/leggings that are multi colored stripes. So one day last week I HAD to wash them. I think we were on day 3 at the time. So, Ayden Jane refused to choose any other pants and just wore her shirt, underwear and shoes while they washed. Yep. She insisted that the shoes go on because she was not all dressed without them.

Oh, yes, today she decided her green pants were a good idea. First day without stripeys in a week! Hallelujah for this to come to a close and may we never be without a pool again.

Saturday, November 6, 2010

Swimming Update/Momma Sick

Well, I picked AJ up from school and casually asked her teacher how her day was. The answer? "MUCH better. She was nearly back to her old self." Okay, so apparently it is a good thing that I like to swim because it sounds like we will be spending a lot of time in the water.

I am happy to say that I nearly never get sick. That 'nearly' happened yesterday. My big kids were awesome as I had no choice but to stay on the sofa or in bed. They took great care of Ayden Jane. The funny part was AJ. She would not leave me. She kept asking, "mom, you all better now?" She would climb on the sofa and sit with me. She just knew this would make me better. When the big kids would say I was sick, she would argue with them. "Mommy all better now. Mommy not sick." All in all it was very cute. Although I must admit it is much cuter today than it was yesterday!

Thursday, November 4, 2010

Hope in Swimming

Well, Ayden Jane's behavior has gotten more difficult. It is hard to watch because you can just see it is beyond her behavior and crosses into a loss of control. She has no desire to be 'bad' or even to test limits, she is just overly sensitive to everything and has very little self control. After heading to the play ground last night, jumping on the trampoline, doing handstands.... Things only slightly improved.

So, is it just being 3? I think I found my answer tonight. I went to a local 'resort' that has a small health club and an indoor pool and checked out membership, times the pool is open... Turns out it is not too expensive (300 for 6 months or 400 for the year for our family of 6). We talked them into a free trial tonight to see if the water was warm enough for Ayden Jane. I will definitely say it was not toasty but AJ went right in. She took her little pool noodle and rode it like a horse for laps. She jumped in and swam. She swam back and forth between Gary and I. She laughed and splashed and basically sprinted for 20 min. We came home and within 10 minutes Kayla informed me we had brought home the wrong child. This was her way of saying that Ayden Jane was so dramatically different (calmer) that she was like a new kid. We like this kid. AJ proceeded to be completely cooperative, do several challenging puzzles calmly and simply asking for help when needed. Her volume was normal, her tone had no more whine, she could keep clothing on without freaking out, she could have a conversation without getting frustrated... I honestly could go on.

The final test will be school tomorrow. AJ has had less than great days this week. I am not going to tell her teachers anything when I drop her off, I will just ask how her day was at the end. Oh, and yes, if these results hold true, it will be the best money we have ever spent!

Wednesday, November 3, 2010

Pooh's Thoughtful Spot

Yesterday I went to pick Ayden Jane up from school a little early. No real reason, just poor timing so that was when I was going by the school... I went inside to peek at her in the classroom and I saw she was sitting in "pooh's thoughtful spot." Yep. Time out. I quickly slipped out of sight as I did not want to free her from discipline! The director saw me and told me to go right ahead and visit her in the class. I explained AJ's situation. She assured me that Ayden Jane never is in any trouble and sometimes she just likes to sit there. I wasn't so sure. She asked quickly as she went by and sure enough, it was Ayden Jane's first official bad day at school. Is it wrong that I was happy about this? I know that sounds weird, but for Ayden Jane to get in trouble means she was asserting herself in one way or another and was likely very verbal.

The teacher explained that it had been a long day of wanting to things AJ's way... and choosing not to listen. Sounds about right to me!! Nothing in particular was awful, just trying to find a way to win the battle. To me it is just one more way in which she is 'typical' 3. On the way to school today she told me, "I not gonna sit in the spot. I gonna listen." Best part is, as far as I can tell she followed through. (truth is, I think she needs a good swim)

Tuesday, November 2, 2010


Halloween was a couple of days ago, but I figured I would write up how we handled it, how it went and some ideas for future years.

So, what did we do? Divide and conquer. We decided that Ayden Jane was just too young to really understand the whole trick or treating thing and we had another option so we went with it. Mckenna wanted to trick or treat with friends so she and Gary did that.

Let's first talk costume. AJ wanted no part of the costume. Her sister Mckenna was all decked out in her costume as a can of bug spray, but AJ was not interested in dressing up. I am sure it is the result of her latest little sensory spurt as she is back to asking for tags to be cut out, if clothes are itchy before putting them on, complaining and yet obsessed of all things texture... She decided she wanted Kayla to paint butterfly's on her cheeks and was thrilled with that so we were all happy.

AJ, Kayla and I went to a fall festival which was basically loads of bouncy houses, slides and obstacle courses. Hmmm. I'd say it was basically the choice of therapy over candy. Good choice. Anyway, AJ had a blast and especially loved the long caterpillar looking tunnels. She went over and over. Honestly I think she probably took 50 turns on the slides, tunnels, jumpy houses... by the time the night was over. The candy is given out in a little bag at the end at a separate area that I never even saw. Great fun with no worries! As a treat on the way home we went through McDonald's and got 'apples and nuts'. Otherwise known as the fruit and walnut salad. AJ does not eat the yogurt, but the apples, grapes and walnuts are a big treat to her. Perfect evening.

Not sure what the future will bring, but I foresee trick or treating a bit but using the Halloween Fairy or Great Pumpkin trick. Let her choose a cupful of treats to keep but putting the rest out on the porch to be replaced by a present. I think I would have gone for that myself as a kid! I know Mckenna will go for it with us if needed. I would likely amend it a bit as well and have things like dark chocolate almonds that she loves, but I am more comfortable with as part of her cup of treats.

Monday, November 1, 2010

Shoulder Strength and Daddy Day

Well, this is not a very good picture of what AJ was doing. One of those times where we were so shocked by what she was doing we didn't get the camera until it was about over! It all started with her sister doing a handstand against the wall. Kayla did it the normal way you would learn or practice. She started facing the wall and then kicked her legs up so that her back was facing the wall. We attempted that with Ayden Jane, but she did not want us to help so it didn't really work. She then, as usual, found her own way to do what the big kids were doing. This picture is actually as AJ was getting down so you'll have to use your imagination a little. Just picture this with her legs straight as an arrow and her hands a bit closer to the wall! Even more impressive is the control she had as she came down. Now that takes strength!

We are also in the process of putting up a good climbing rope in the back yard. You know, the kind from gym class when we were kids. Of course, my luck, AJ will get up the rope and decide to just let go to get down! Okay, let me rephrase. We we are also putting up a short climbing rope in the back yard. I think a gymnastics class would be perfect for her at this point, but it is just not really an option. for us right now so we are attempting to bring a bit of gymnastics to her.

On Saturday I took Noah to his soccer games a few hours away and, drum roll please, left AJ here in Pawleys Island. Yep, we are pretty sure it is the longest I have left AJ in her 3 year life. It was nice to just go with Noah. No extra clothes, just in case, no coolers with food for the day, no toys to entertain or therapize in the car... Just Noah and me. (Yes, I missed her) So by noon I received a phone call from Gary filling me in on their morning. Ayden Jane and Mckenna were 'helping' Gary work in the yard and do some laundry. Apparently, Ayden Jane decided to take over the laundry herself. She slipped off and by the time Gary caught up with her she had opened the laundry soap and poured it into the cup (and all over the floor) and promptly put it in the dryer. Hey, she couldn't reach the washing machine! Luckily there were some towels in it at the time so no real harm done. Of course, Gary's progress came to a screeching halt. He took care of that little episode and resumed yard work. They were filling up his van with a load for the dump (yes, we take our trash to the dump ourselves, no garbage man) and of course the girls were again 'helping.' Ayden Jane was happy as can be when Gary noticed her hands were white. Yep. He was throwing away an old can of paint that was, apparently, not completely empty. She was so proud of herself for how well she painted the back seat! Not to worry, the car is awaiting it's own trip to the junk yard as it is terminal and has 260,000 plus miles on it.

Yep, all that and it was still before noon!! Well, they are good examples of why Kayla calls her ninja child. She can silently get into more trouble than you can imagine!

Thursday, October 28, 2010

Awesome Sister and Upper Body Work

So, although this blog is mainly about Ayden Jane, she obviously has 3 siblings. I just have to pause to brag on what a great kid our oldest, Kayla is. It has been an incredible week for her. She has been officially accepted to Clemson (not sure if that is where she will go) and offered scholarship funds already for her academic record. She was selected for the all state volleyball team. Her high school team is heading to round 3 in the play offs. Most amazing though, is the hardworking humble spirit she has. She works part time and has decided to use her money to return to Guatemala this Christmas to brighten the lives of the girls at the Oasis, a home for abused and neglected girls there. She also hopes to visit with Oscar, the child we sponsor through Kids Alive. It will be hard on Mom to have her gone for Christmas, but I am proud of her that her choice is for Christmas to be about brightening the lives of others, not about what she will receive.

Now on to Ayden Jane news. We had a genetics appointment yesterday. I still go to see Dr. Pai because he is interested in learning. He asks me what new research I have heard about, conferences I have gone to... He really wants to know and takes notes. Mostly, he just follows Ayden Jane and really does not have much to offer us, but I love that a hospital like MUSC has a guy who at least is interested in learning.

As for Ayden Jane's new 'needs', yesterday we hit the playground near out house. I guessed that bars would be good. Wow, that is exactly what she wanted! She loved climbing the ladders and she can just reach the first monkey bar on her own now. Of course, she shoves me away if I touch her while she gets her grip and lets her feet fly. She like to swing on them and have me catch her as she falls. Then I hold her feet and she goes hand over hand across them like a pro. She is definitely craving upper body work. Ideas anyone???

Tuesday, October 26, 2010

Here We Go Again!!!

We had PT today and I discovered that although I hate to admit it, I am still clueless about many things Sensory Integration wise. I know all the old clues to the sensory integration needs Ayden Jane has had in the past. I could just 'see it'. Apparently, sometimes the needs change a little and look a little different.

Ayden Jane has asked me lately to 'play sand' (she has moon sand we pull out once in a while) and play doh. She has asked to go swimming. I did not think much of these. She has been determined to put heavy things on the counter and put groceries on the belt... She has been hanging on every bar she can find. She has been putting things down or stacking things a bit to hard. Her behavior has been frustrating. Her attention span has been lacking and her patience has disappeared (and mine has sometimes gone with it). None of these alone made me think too much other than she is 3 so.... I had a little bit of a wake up call when I gave her a different pillow case last night and she got upset and declared it itchy.

Then came PT today. Jen had a plan and brought lots of fun toys to motivate. I fed AJ and bounced on the trampoline with her to be sure she was ready to go. Ayden Jane could not focus on ANYTHING. She wanted to jump from one thing to the next. She went so fast in the activities Jen was doing she had zero quality. Jen worked some magic which included wrapping her in a blanket and doing some things on the ball. (I call her 'baby whisperer') She slowed down enough to get in some good work, but it was very apparent that a new sensory spurt was under way.

Jen said that she felt the need has changed a bit and I need to be aware that it may take different things to meet the new needs. She described it something like this. In the past the deep input need was central and core related. That is where the connections were going wild. She thinks that the needs now are a bit more distal. Not to say that means finger tips or anything, but shoulders girdle and arms and hands and legs (probably why she keeps putting stickers on her legs and goes into jumping fits) and feet. So, Ayden Jane has been asking for things to meet the need. The moon sand and play doh and hanging and lifting heavy things up high. I just did not understand her new sensory language. So we are now looking to do things that require pulling and pushing and strong hand work and resistance. We are crab walking and bear walking and wheel barrow walking on the trampoline. We are throwing heavy balls... It is just the beginning so I will let you know how it goes. As for now? She just went to bed nakey because every article in the house was too itchy! Neurons connect!

Thursday, October 21, 2010


"You are so blessed that Ayden Jane is doing so well." I hear this quote a LOT. Yes, it is wonderful and yes I am thrilled with how great AJ is doing. I don't want to sell any of that short, but I have had a constant thought bouncing around in my head.

Do Ayden Jane's abilities to talk and run and jump and be, well, 'typical' 3 mean that I am blessed? Or maybe I should ask, would I be any less blessed if Ayden Jane were not talking and running and jumping? What is the meaning of blessed? Is it when things turn out well?

Here is what has to say on the matter.

1. consecrated; sacred; holy; sanctified:
2. worthy of adoration, reverence, or worship
3. divinely or supremely favored; fortunate
4. blissfully happy or contented
5. bringing happiness and thankfulness

Let's see. I am pretty sure option 1 does not apply! Or maybe it does in the sense that we are all created as such in God's eyes, but our skills certainly have nothing to do with it. Option 2 makes me uncomfortable as sometimes I feel like there is a bit of feeling like I have done something special that makes all of this happen. Now, I am all for Ayden Jane's success causing others to see God as worthy of adoration, reverence and worship. Option 3? Hmmm. Quite the conflict. I do feel fortunate that AJ is so capable, but at the same time is it fortunate that she has PWS? How does that make us supremely favored? Because we have less struggle with a genetic disorder? Option 4. I will say that there is a part of Ayden Jane that is blissfully happy and content. She has also made all of us learn a lot about contentment and what really matters. This has definitely led to some blissfully happy moments. Finally, option 5. Wow. Bringing happiness and thankfulness. Obviously, we are blessed.

So, are we "blessed that Ayden Jane is doing so well?" Yes, but not so much because of what she is doing or not doing, but because she is a blessing. Just like for all of our kids. They are not blessings dependent upon what they do or do not do well. We are divinely favored to be the parents of holy creations of a God who is worthy of adoration and we are thankful for the happiness they bring. Yep. We are truly blessed!

Wednesday, October 20, 2010

Pumpkin Patch

Today Ayden Jane went to the pumpkin patch with her class at school. There was a little show with songs and silliness first, then out to see the pumpkins. Ayden Jane was great. I was amazed that she was actually less overwhelmed than some of the other kids in her class. She participated, sat on her own and listened great. So fun to see her with other kids her age and know that she totally fits right in. Here a couple of cute pictures.

Watching the show carefully:

Investigating the pumpkins:

So strong!

Tuesday, October 19, 2010


So I have continued to do some running. I have always run alone with my own thoughts. It has been my stress reliever, my prayer time, my solitude, my me time.... pretty much as long as I can remember. Last year I decided to run the Myrtle Beach Marathon as a fund raiser for The Foundation for Prader Willi Research. It was a huge leap because although I have always loved to run, I don't think I ever had gone more than 5 or 6 miles at a time. I was very into it. I loved the training. I think I needed the training. Well, it was cancelled due to snow and I was definitely disappointed. I just needed a finish line. I was determined to go for it again this year but something is different now. I have been doing some running and the training physically is easier, but the mental part/heart has not been in it. I was thinking about it as I was running today. I came to realize that I am just in such a different place than I was this time last year. I don't NEED to run anymore. AJ is doing great. The other 3 kids are doing awesome. Gary is starting a new job which will help us tremendously financially. I am crazy busy but the stress level has definitely dropped. Sure, we still work hard with Ayden Jane, we are busy trying to help Kayla choose a college and pay for it, we spend our weekends on soccer fields, our sofa is torn tattered and broken and there are many similar things around the house that are way past time to replace, Gary drives a van with 260,000 miles on it that we can hear 2 blocks away which is dying a slow painful death, we have more practices and games than family meal times...

BUT we are healing. I sleep at night without worrying. Mckenna is so much less fearful. Noah has grown into a fine young man, is doing great in school and making great choices, Kayla is completing a tremendous 4 years of high school as a student, athlete and friend and has a fantastic future on the horizon. Ayden Jane is, well, your basic 3 year old. A feat I was afraid to dream of when she was tiny. Gary is working at a new job which he loves and is so happy and relaxed. Our house is filled with laughter and we enjoy our crazy family. We like to hang out together and we cheer each other on. There is nothing better as a mom than to watch all your kids truly enjoy one another, support one another... love one another.

So, what about the running? I am ready. I want to do it. Yep. I WANT to do it. It is okay to run because I just want to, not because I need to. We will see how it goes since I signed up a long time ago for a half marathon this coming Sunday. YIKES! It will be okay because now my heart is in it. I will run it as a celebration. I will count my blessing for 13 miles. Wish me luck!

Sunday, October 17, 2010

Bug Spray and Ninjas

These are just random photos Mckenna took trying to get Ayden Jane to make silly faces. There is really no point other than they just show the moments of our life. This was yesterday afternoon after Mckenna's soccer game.

I think this one is almost Halloween worthy!

Speaking of Halloween, it has never been my favorite holiday. Okay, maybe as a kid it was fun to get candy and run around with my friends, but that's about it. Mckenna has a great costume idea at least this year! Her friend decided he would be a mosquito so Mckenna is going as bug spray. Noah is in charge of costuming and is determined she will be capable of spraying. It is fun to watch their creative little brains go.

So what will Ayden Jane be? Kayla thinks she should go as a Ninja. I know that sounds crazy, but that is what we call her. There is something about her that is sooooo quiet when she is up to something. Today, for example, she wanted to play in the car I had just cleaned out. I left the back open so she came inside and got her chair from her little table and took it out... Now AJ is getting bigger, but for her to carry even a small wooden chair outside should be noticeable. Nope. She will slip away while we are all in the living room and it is like we have to send out the search party. Usually she is just playing somewhere or on a small mission like changing her clothes... Occasionally, we find her in strange places like in the shower. Yep, water running, clothes on... but washing something very important. She keeps our radar on high alert!