Friday, September 30, 2011

Swimming = Sanity

Ayden Jane has been so out of control lately. Not really in a disobedient way, in a just cannot really control her little body way. (see previous post) So yesterday I went to pick her up from school and she announced as she climbed in the car, "Mom, can we go to the beach and the pool? I just need to go swimming."

Hmmm. I was pretty sure the water would be cold after all the rainy weather we have been having, but the sun was shining and I just decided the risk of it lasting 10 seconds was way better than the ensuing battle of trying to convince her it would be too cold. It was AWESOME. Ayden Jane jumped waves, played ring around the rosie... for at least 30 minutes before she announced that she wanted to go to the pool. Off we went and the pool was surprisingly not freezing as well. (I hesitate to call it warm) She wanted me to stand way out in the water and she swam back and forth, back and forth... Whew!

After we got home, she played calmly with her toys. She had great task attention. She was speaking clearly in complete sentences without stuttering. It was night and day. I don't feel like I can describe the difference with near enough magnitude. Gary and I just kept staring at her and each other. It was like a different child. The storm that had been raging inside of her was calm. She was in complete control of her body. Bizarre, awesome, miraculous. Those words touch on it.

Needless to say, we are working on an indoor pool for this winter!

Happy Birthday Eve

What a difference a year makes. It is hard to believe that last year as Ayden Jane's birthday was arriving, I was planning our departure from early intervention and 'hoping for the best' with preschool. Ayden Jane did not really understand what a birthday was all about and it took days to get her to answer that she was 3 when asked how old she was. She did not really speak to anyone outside our immediate family or circle of therapists. Little did I know that she was going to come out of that little shell and just, be an incredible 3 year old.

So, tomorrow is her birthday. It sort of started to build this week bringing snack to school all week. It sounds crazy, but AJ had so much fun picking out a snack for her friends all week even though she could not eat them. I told her it was her birthday week so we got to bring snack. The first day she said, "my friends like pretzels mom, lets bring those." I went with it. Each morning on the way to school we would stop and pick up a snack for the class. She was so excited and she would carry it in each day so proud of how happy she would make her friends. It never bothered her in the least that she would not be eating what she brought for them. Today it hit fever pitch with bringing in 'cupcake muffins' as she calls them. They are just nut butter muffins with some dark chocolate chips. Her class sang happy birthday to her and she loved it.

Just as she woke up today, Jen brought her crew by and gave her a present and played outside with her. Then a card came in the mail from her grandparents in Texas. It, of course, had money in it so we went ahead and hit the toy store! The excitement was out of control!! Then off to the homecoming parade and football game.

Tomorrow, my parents and our family will celebrate with chocolate covered strawberries and of course more presents (Ala grandparents) and then off to the soccer fields. I will fill you in on the birthday girl tomorrow!

Tuesday, September 27, 2011

Sensory Craze

Ayden Jane seems to be at it again. Lots of showers because we are itchy. Lots of running around nakey. Lots of emotion, sort of like just feeling EVERYTHING really STRONGLY. Attention span of a flea for playing with toys. Lots of climbing on the rest of us looking for touches and wrestling. Lots of volume. One day loads of sleeping, the next day NO sleeping. One day refusing food for looooong periods, the next day eating very well. Potty accidents. Laughter followed by tears followed by yelling followed by laughter... EVERYTHING is a conversation of why's... Somethings in that little brain and body are over firing and others can't get going.

I can't imagine what it must be like to be in there.

I talked to Jen about it yesterday during PT. I feel like she is just taking in so much right now she just cannot process it all. I was thinking school and just development. Jen added the orthotics to the list. It just seems for AJ, little adjustments make big changes. This is good because she is very capable of learning and adapting and responding to therapy. It is challenging because sometimes she just cannot handle the amount of change.

So, what did we learn in therapy? Her legs look fantastic! The orthotics are doing a great job. Jen feels her legs look more toned and her form when running is almost athletic looking.

Sad to say, her upper body is in disarray. Jen is not worried, so neither am I, but the belly is hanging and the left shoulder rotating backwards when she is statically standing. Apparently, (per Jen) she looks great in the way that she is shifting her weight something, something... (She loses me sometimes) when coactive.

Her left arm is an enigma. When it works with the right arm, like picking up a ball, climbing... It is strong and useful. However, in isolation, she cannot figure out how to fire the muscles there. BIZARRE!!! We inhibited (strapped down) her right are and had her take a bean bag in her left had and do what is equivalent to a bicep curl with it. She could not make it happen. Totally neurological. We know the strength is there. After working with her she could do it, but the concentration required was astounding.

Homework this week? Use lefty as much as humanly possible.

Saturday, September 24, 2011


Ayden Jane's 4th birthday is coming in a week. It is causing me to think. Too much probably, but I have yet to figure out how to turn off my brain. As one year is closing and a new one is opening, I cannot help but think about expectations vs realities of all things AJ.

There was pregnancy with all the dreams of what the child may look like or be like. The only questions in our heads were along the lines of will she like music and art or sports. Will she be stubborn and strong willed or easy going. Will she look like her brother or sister... Somehow, will she have a rare genetic disorder did not slip into our thinking.

Those dreams and expectations were buried deep when crisis time arrived after birth. Then came diagnosis and we had a new list of expectations forced on us. None of them good. None of them were on our list of dreams for our precious child.

As the years pass, the challenges and concerns change. Reflecting on the past year is awesome because I can see the challenges we have conquered. I can see how few of the things on that list we were given at diagnosis are reality. I can see the amazing things Ayden Jane can do and I can hear so much of what goes on in that little head of hers. It is definitely time to celebrate the hard fought achievements.

Then I look forward. New challenges. New territory. Based on past experience, I have every reason to think that we will rise to those challenges, but honestly there is a part of my brain that struggles with believing that. I think that is the most exhausting part for me about raising Ayden Jane. Heading into each phase of development with a gather all the forces attack mode. The feeling of always being on guard and afraid if I don't keep my eyes peeled we will fall of the track and not be able to find our way back.

Ayden Jane has PWS so she is a special needs child. She has PT and ST and therapeutic horseback riding. She has way too many doctors... But when she is at school, she is just another kid in Bee's Three's. She blends in and looks to everyone else as a typical kid. I know that is AWESOME! But it also makes me constantly feel like I am not in either camp. I'm not really a special needs mom, my kid doesn't actually even qualify as developmentally delayed! I am definitely not as foot loose and fancy free as the mom's of the other kids. I need to encourage AJ to spread her wings and protect her at the same time.

I guess I need to enjoy this birthday week coming and choose to celebrate all that she has accomplished from 3 to 4. I will have a the whole year of being 4 to attack those challenges. I know Ayden Jane can handle it and as long as she keeps working so hard, how can I let exhaustion set in. Go AJ go.

Wednesday, September 21, 2011


Ayden Jane has done a great job at school. She is hilarious at home. She has a terrific little personality. She is active and adorable and her speech is getting more clear. Still, the nuances of making friends are difficult. I see some of the other little kids in her class clearly having some friendships. Of course, not all of them... Ayden Jane has seen her classmates out and about in town and she has no idea what to do with them. It is hard to put a finger on.

Huge changes are afoot in this area. The other day we were at McDonalds (yes, but honestly she only eats the apples!) playing in the play place. A set of twins from her class were there and she went and really played with them. I mean, reciprocal conversations... It was the coolest thing I have seen!

This past weekend at the soccer tournament Ayden Jane played a lot with her friend Lilah. Yes, her friend. Lilah is Jen's (PT) youngest daughter and she is just a few weeks younger than Ayden Jane. So she is a friend because our families are friends. Many times we have gone to the playground or zoo or where ever together and the girls have played near each other. Lilah is definitely ready to form friendships and very capable of pretty much everything. It was so cute to hear her ask AJ to play with her. She wanted to play tag and hide and seek.... It took a little doing, but AJ did pretty well with it all.

In the end, I think all of us, whether our kids have added challenges or are as gifted as the day is long, mostly just want them to be happy. To have good friends who truly accept them for who they are. Just seeing glimpses of Ayden Jane being able to play games and converse WITH her friends makes my heart happy.


Sadie is our dog. We originally got Sadie because Mckenna was a so into animals when she was little. All the babies handed down by Kayla we left nakey, in a pile in the closet while the animals wore clothes and went everywhere with us. We had sort of promised a dog to the older kids too so we figured the time was right. You know, a dog for them to grow up with that would not necessarily be around super long after the house was kid free.

Sadie is an English Springer Spaniel. She is a GREAT dog. As it turns out though, Ayden Jane is the one who is sooooo attached to the dog. AJ feeds her and gives her water everyday. She also walks around the yard collecting sticks for Sadie. I know it is a little weird, but the dog does chew on them from time to time. AJ asks if Sadie loves her, which of course just means she wants me to tell her how much Sadie loves her... I don't know what it is between them, but it is awesome.

Problem is, Sadie is sick. We took her to the vet yesterday and they kept her overnight. She is still there. Ayden Jane spent yesterday telling me she was sick. She told her teachers at school she was sick with a fever, just like Sadie. At horses last night she kept asking me if Sadie would be home when we got back. She kept asking because she was hoping I would say yes...

At bed time Ayden Jane was worried about Sadie. She wanted to know how she would sleep and who was taking care of her. On the way to school this morning she wanted to know if we were going to get Sadie before we went to school. Amazing how much she thinks about her and misses her.

So how is Sadie? Well, she will be staying another day. Vet can't figure out what is up but she has been cleared for the big nasty things you worry about. Her fever is down and her white cell count is improving.

I am going to take Ayden Jane by the vets office on our way home from school in a bit. Maybe it will perk Sadie up and help Ayden Jane not worry so much. I do know that they have to figure this out because those 2 were just meant to grow up together.

Tuesday, September 20, 2011


We had a great soccer weekend. Mckenna is awesome and had a great time. She played with her whole heart and is doing a great job hanging with the boys. Ayden Jane loved the playground at the fields so it was a win all the way around. AJ would climb the rock wall, cross the bouncy bridge and slide her little heart out for about an hour before the game. Then during the games she ate some pistachios or almonds, played nearby or (usually for the last 15-20 min. of the game) climb all over me.

Ayden Jane officially does not sleep well in cars or in hotels! We left about 5:30 am and she barely slept 45 min. of the 4 hour drive. No nap all day through 2 games and about 3 hours total on the playground. At bed time she managed to fall asleep about 9 and was ready to go by 4 am!! Ugg. I just told her it was not time to get up and after a few tears she fell back to sleep til about 6:30. You would think that she would have slept the whole way home after another full day of outdoor play but, you guessed it. 45 min. to an hour.

I psych myself out sometimes before I travel with Ayden Jane. Not sure if it is the food, gh/supplements, the nonstop talking needing attention in the car, potty issues (see below) or maybe just the combination. When it is over, I am always amazed and how great AJ does. We just figure it out as we go and, of course, I know what things to bring with us to help.

Potty issue. Ayden Jane was out right scared of the pottys at the soccer field. Now that may conjure up visions of nasty out houses, but actually it was quite the opposite. They had brand new automatic toilets. Problem was that the bathroom was big and a bit echoy. That's enough to overwhelm AJ's sensory system and make it hard to concentrate. Add to that, the potty keeps flushing every time she moves and it is loud! I had plans the first day for between games, but it was so bad that we had to go check into our hotel. Ayden Jane's little bladder just grew and grew... She told me she needed to go and was unsuccessful 3 times. Uggg! Once in our hotel room, she settled down and we just ignored her as she went into the potty. I found another potty the next day at the field that was just a 2 seater. It was calmer ect. and problem solved! Weird how these things pop up along the way.

Probably most amazing to me is that on Monday, I was exhausted. Mckenna called from school and she was so tired she couldn't even make it through the day. Ayden Jane? Hit the ground running and has had a GREAT week so far. The more AJ and I hang out the more I think she truly does better with ridiculous amounts of activity. I feel like I spend my days trying to wear her out so that the next day is a great one. I guess her sensory system needs all the input and somehow her metabolism is 'set' best that way as well. Not sure how many years I can keep this up, but I definitely see swimming and long distance running in her future. Hmmm. Maybe a triathlete? That would be fun!

Thursday, September 15, 2011


Here is our schedule for a typical week. It is amazing enough that AJ can hang with this, but the fact that she thrives with the business is incredible.

Monday: school (9-12), speech 12:15-1, soccer practice (playground time) 5:30-7:30

Tuesday: school plus 'lunch buddies' til 2, horses 5-6

Wednesday : school, PT 1:30-2:30, play with Mckenna and friend we 'watch' on Wed. and Thurs. til 5, church 6-7:30

Thursday: school, Mckenna and friend, Soccer field

Friday: school and what ever fun we can find on a Friday night! Like the HS football games. Woo Hoo.

As for naps, she will nap everyday if I choose but only about 45 min. to an hour. She can go without the nap, just hard on the nights where we are out late. Add in things like the volleyball game we went to after horses on tue. and other school functions and whew. It can wear you out! Honestly, we wouldn't have it any other way. All simple fun. I need to make room for some swimming time while we still can though!

Weekends? This one we will be out of town to watch Mckenna play soccer. Her fall tournament so 4 games in 2 days! Otherwise, if we are home we head to the beach or the playground. I think she may actually be a bit addicted to the activity! She asks at some point each morning what do we get to do today Mom?

Jump Highers (continued)

Yesterday, (yes, I always seem to operate a day behind) Jen came and worked out AJ in her new jump highers. It was FASCINATING.

First up we took AJ outside so Jen could watch her run. Not sure exactly what Jen was thinking, but she saw something she wasn't so sure about. For my part, I saw a kid who was doing her best, but was obviously still not used to those things on her feet! AJ said they felt good though.

In we came and AJ wanted to show Jen how good she can jump so we had to oblige. She jumped as usual and hopped very well. In some ways she seems very stable in the JHs and in other ways... very different.

Time to check the posture. Standing in her big girls her legs looked AMAZING. I just kept staring at them. (I was behind her) The best I can describe is that is was a very athletic stance. Significantly different. Jen used her big PT words that I don't even remember now, but when she uses the big words she is definitely impressed (or concerned).

It was funny to watch AJ as Jen had her do some activities because she would start to posture how she 'cheats' but the JHs wouldn't let her. Then she would over react to that so there was a bit of swaying going on. It looked a bit like she was on a boat!

Now here's where the trouble comes in. Ayden Jane still shows a definite left side weakness in her left arm. She was still dropping back the left shoulder and avoiding the left hand. Jen worked for a good while getting the left engaged and AJ looked much better.

What really showed up was when Jen put the 'clomper stompers' on her. We used to make them with coffee cans and string. Flip the can upside down and run string through holes and up to your hands as handles. Jen's were pretty, plastic and green, but the same thing. Ayden Jane can work the right foot perfectly. The trick is to be able to pull up with the hand and bend the knee, taking a step, at the same time. Ayden Jane simply can NOT use the left hand and left foot together! It was really amazing to watch. Such a hidden little piece of evidence of a still out of kilter neurological system.

Since the beginning of PT at 5 months we have seen evidence of the left side weakness, particularly above the waist, sort of come and go. For a good while, the left side was just about 2 weeks behind the right. It was very apparent when learning to crawl... It was just amazing to see it 3 1/2 years later, just in a different form.

So, we are excited to see how Ayden Jane does after she has some time to get used to the JHs. I think it was really surprising for me to see what a change in her stance they made.

Tuesday, September 13, 2011

Jump Highers

Yesterday I took Ayden Jane to see Mr. Alan. He is the orthotist who made her AFO's. Besides being a really nice guy, he works really closely with Mrs. Jen (PT) and so between the two of them Ayden Jane gets the best help in the business.

Ayden Jane's right AFO is made to keep her from supinating. She likes to curl her little toes and roll onto the outside of that foot. The left one is made to keep her from pronating. Yep, one uneven little kid. Apparently Ayden Jane is a master of finding 'compensatory patterns' which basically means she can find a way to avoid any muscle she desires. We just call it cheating.

Okay, so none of that is too exciting. Today she wore them to school and she did not stop jumping by the time I left! When I picked her up she had noodles for legs. She even had trouble climbing into the car. It was as if she worked muscles that she had not used in a loooooong time. Can't wait until tomorrow to see if it was just the workout she gave herself because she was so excited about them or if we have just caught up with her cheating and are forcing her to play fair.

Monday, September 12, 2011

One Small Step

I have come to terms with the fact that I can't do it all. Okay, I still think I can in some areas but in this one, I give. I was so excited to attend the One Small Step walk in Williamsburg this year. It seemed the perfect answer to just not being able to head to LA for the FPWR conference. Alas, finances have made us choose between PWS family/Ayden Jane funds and our own little family needs. We put a lot of our families needs on hold to get through the first years, the crisis years, for Ayden Jane. I don't mean that to sound neither noble nor whiny. It was the right choice and we have all come through well.

When AJ was diangosed at 8 months, I dove into the internet. I had no choice. There were no living breathing people that I could connect with that could offer me the hope I needed to hear. Thankfully, my parents understood the need for us to make contact with others, with real information, real faces, real hope... and offered the necessary cash to get us there. The numbers were few but the hope offered was astounding. Watching people way further down the road be, well, normal people. I met kids with PWS and they were admittedly a bit quirky, but great kids. The research was like listening to science fiction but it was real. We left finally feeling for the first time since diagnosis like maybe we could survive this thing call Prader Willi Syndrome. Maybe our new normal could be a good normal.

In some ways I feel like I missed out on the lives of the 3 older kids for a period of time. That is my only regret in the first few years. The marathon was something I needed to do. It was both time for me to process all that I was reading and something I could DO to help Ayden Jane.

So, as much as I have loved following all the incredible excitement going on in the PWS community, I am putting our resources to use here at home. I will very much miss seeing some of the friends we made during the 2 years we managed to get to the conference. There is something amazing about meeting up with others who walk a similar path. In fact, nothing like it. For this season, though, I think it is right to put our little family first. They are pretty awesome.

Catch the excitement of the One Small Step walks at the link below. We will not be able to walk with our friends in Williamsburg, but we will walk with them in spirit. (And miss them desperately)

Saturday, September 10, 2011

Growing So Much

Lately Ayden Jane is always talking about how big she is. It is exciting that she can do so many big kid things and is doing so great, but there are times when I am reminded that it is passing too quickly. The pictures below show Ayden Jane about a year ago and yesterday. What a change!

Tuesday, September 6, 2011


Kayla has been at Clemson now for a few weeks. All the kids really miss her. Kayla and Noah surfed together, went out to eat together, went to church together, stayed up late and did homework together. They have such a great friendship beyond the sibling relationship. It has been so much fun to watch them grow up together and it is a little strange without her. Noah looked a bit lost at Grandma and Grandpa's for a Labor Day picnic. There was no partner in crime.

Mckenna is 8 years younger than Kayla but despite the years, Mckenna feels quite close to Kayla. They double team Noah together and when Noah is not around Mckenna messes with Kayla. Mckenna gets so excited when she sees Kayla is on facebook and she can chat with her for a few minutes. (yes, my 10 yr. old has a facebook and yes, I would have never let the older 2 at her age...) I know Mckenna is very excited to show Kayla their new room now that they are room mates.

Ayden Jane soooo misses Kayla. She has the added trouble of not really understanding this whole college thing so she keeps asking if she is 'done yet'. Ummm. No AJ, Kayla will be at college longer than few weeks. Kayla called today with a random question for me, but Ayden Jane wanted to talk to her. It was so cute I almost cried. She told Kayla, "I love you this much!" with her arms spread wide. Then AJ told her, "I miss you. I wake up every morning and give you kisses." Wow. Good luck Kayla getting Ayden Jane to let you out of her sight when you come visit:)

It has been so much fun as a parent to see the differences, similarities and relationships between all the kids. We are blessed with great kids who have enough in common to be able to relate to one another and yet are different enough in personality that they get along really well.

The dynamic left at home is a bit different. It is much quieter which is funny because Kayla is not the noisy one! I think the others just have so much fun messing with her it winds everything up. Noah is now driving and it is strange to see him go by himself. It was always the 2 of them. He is really stepping up as the lone big sibling and Ayden Jane has attached herself to him quite a bit these days. I guess it can be tough to be a boy with 2 little sisters! He even took Mckenna out for a treat tonight. Used to be Mckenna got left home and the 2 big kids went. In some ways the changes are good, but we will all be glad when things get back to normal around here! You know, at Christmas.

Sunday, September 4, 2011


Okay, so I am not sure if this is PWS or just Ayden Jane, but this kid is driving me crazy with getting into things. Sure, food is scary from a PWS stand point of not having an off switch, but I don't think the times she has gotten into the pantry really have anything to do with 'food seeking'. I know, how can that be? She is getting into a pantry and 'foraging' for food! Well, the couple of times she has done so have been days where I lost track of time and the kid was WAY past meal time. Also she has gotten into foods that she is allowed to eat. An example is yesterday when she nearly emptied a container of almonds. There are gold fish, crackers, cereal, cereal bars.... all in the pantry that the other kids eat. She didn't touch any of them. The trouble is just amount and needing to reinforce that she has to ask...

So what is she getting into that has me crazy? Lotion. Any bottle of it, anywhere, anytime; sunscreen; shaving cream; soap; shampoo... Turn your head and she is covered.

Cars. She wants to play in any of them and will find lotion... (see above) or anything. Yes, we are now locking them in the driveway. She has slipped out on these hot days and closed herself in one before I managed to get a load of laundry in the washer.

Climbing. Top of the closet, all over any one of us, on the back of the sofa, up the bookshelf (yes it fell on her), up the bunk bed ladder (then jumped off because she was playing 'ribbit', and landed on said bookshelf), the outside of the trampoline, up her dresser by pulling out drawers, uses stools to get to counters or in high cabinets...

I think you are getting the picture. AJ is the youngest of 4 and I KNOW my other 3 did not get into things like she does. I have no solutions, but thanks for letting me whine. I get that I should be thrilled that she is not yet 4 and so capable.... and I will be in the morning after a good nights sleep!

Saturday, September 3, 2011

Super Hero AJ

This picture is from sometime last summer, but after her first full week of school it just seems appropriate. Ayden Jane is off to preschool 9-12 mon.-Fri. She adds horseback riding on Tue., PT on Wed. and ST on Fridays. That's just her schedule. Not to mention she spends Mon. and Thurs. night at the soccer fields (on the playground). And from here on out I don't think there is a free weekend until Oct. has come and gone. Whew! It makes me tired.

So how is it all going? Well, remember the super hero picture? Her teacher says she is doing great and is already speaking up and participating... She is doing great with the counting activity. Pretty cool activity from a therapy stand point. They are given a number up to 4. Then they have to place clothes pins on enough dots to show the number. Ayden Jane is now counting everything!

She is doing fabulous in PT. We have been working really hard on gripping a marker properly and drawing lines. This week she traced simple letters pretty well! HUGE improvement. She is also hopping! I was amazed when I saw her in her room working on it. We have never done it in PT, but she was just determined and taught herself. ST went well except that she was tired since it was Friday afternoon! Heck, I was tired too.

And for the big news of the week. It looks like I will be returning to the work force. We have been watching and waiting and counting pennies for quite some time now. It seems the choices were always full time or nothing. We just didn't think full time was an option with Gary's crazy schedule and the distance he is from home. So, I applied to something I came across not really knowing the hours... It turns out they are looking for someone 2 1/2 days a week and are pretty flexible as to the days! I can seriously work with that.

Ayden Jane will need to stay for after care on Tue. until 2 so Gary can sleep off his Mon. night shift. She will officially begin to have lunch at school. I am not worried as the school has been so awesome with all the things AJ needs. Hopefully she will take her Super Hero powers to the next level and handle the transition to mom working and being gone a bit.