Amazing Adventures of Ayden Jane

Upcoming IEP

2012-01-30T10:51:00.000-08:00

Yep. Time to make preparations for next school year. As it stands, Ayden Jane receives only speech services through the school district. She receives PT (with some OT) privately from the awesome Mrs. Jen. I asked at the school today when we were there for speech, what the process is for us to add OT next year.

Mrs. Rogers who is her speech teacher and the director of her IEP, will start the ball rolling by contacting those in charge of evaluations.... As I understand it, there is a form that our Dr. will need complete and then she will be on the list to be tested. Step one will be a breeze. I have lots of Drs. that will fill out the form. I am a little concerned about her qualifying though.

I am not really sure what skills she should or shouldn't have at this age and I am not really looking for OT because I think that we are drastically behind. I just see her trying to get the hang of coloring and writing and needing help. I am being proactive and do not want to wait until she is painfully behind, I want to head it off at the pass. We will see whether this approach is considered a valid one. I think my chances are pretty good with the PWS diagnosis and the fact that I have not 'over asked' for services thus far. Ayden Jane has just proved to be so responsive to therapy that I know it will be time well spent. (It doesn't hurt that I have worked as a special ed. teacher for the district either.)

Wish us luck.

Beach Day

2012-01-28T14:46:00.000-08:00

Fun day at the beach today. It was just Ayden Jane and I and I let her lead the way. We made lots of sand castles, took a walk, chased sea gulls and put our feet in the COLD ocean. The sun was bright and warm and Ayden Jane talked about when the water is warm and she can swim out in the 'deep deep' and surf. I am already looking forward to how much fun she will have out there this summer. I am thinking she will be up on a surf board by summer's end! For now we will just be thankful for a sunny day in January.

Educational OT

2012-01-27T12:29:00.000-08:00

Ayden Jane has had her OT needs taken care of through her PT. Many kids with PWS have both OT and PT from a very early age, but Ayden Jane's fine motor skills were not really behind and Jen, our PT is also OT trained. The biggest OT things we have needed in the past were sensory issues and Jen still serves those well. I have been thinking the other day though, that Ayden Jane is ready to really up the time we spend on OT. Not so much stringing beads or doing buttons and zippers, but school stuff. She is getting a good foundation with her letters and numbers, but writing is just not going to magically happen.

I asked Jen about it Wed. during PT. She agreed that it is something Ayden Jane is just about ready for. My plan is to check into the process to get OT on Ayden Jane's IEP services for school next year. So far we only do speech through the school. If there are evaluations or things we need to do first, I would like to get them done before we go to the IEP meeting. If need be, Jen can give an eval to support the need.

Basically, I feel like many kids learn there letters and numbers while writing them. Ayden Jane gets frustrated trying to write them now so she just does not get the practice. It is too much for her little neurological system to concentrate on the act of writing: the feel of the pencil, the muscles to fire, how hard to push down, how tight grip, where to move it... I believe AJ will have to get the cognitive piece of the letters and numbers down quite well and then tackle the writing piece.

Of course, an Ipad would be awesome for teaching some of those things without such effort. Watching what Jen had her doing with hers for a few minutes at the end of PT (after she has totally worn out AJ) was amazing. The cognitive processing... Gary and I talked about it afterwards and we have sort of 'wished' for one before, but we are now committed to making it happen.

Next week I will get on the ball and find out what I need/can do to make the OT happen for next year.

PWS by Night

2012-01-27T03:07:00.000-08:00

The past few days Ayden Jane has not eaten much during the day. She has been so into playing and having fun that she has not asked for food and has even left food on her plate...

I would say this is good except that it seems to have sparked PWS by night. She headed straight for the kitchen around 5 this morning when she woke. Usually she comes in and crawls into bed with us between 4 and 5 and she is always very hungry for breakfast when we get up. This morning she brought me a powerade zero (Noah's favorite) to open for her... I went to investigate.

She had helped herself to 2 zone perfect bars. I am thinking that is not going to feel good later today and she is correct she needs to drink some liquid!!

We 'caught' her on this path before but it happened when she played hard, skipped nap and dropped off to sleep early without even eating supper. I had no doubt she was hungry and we talked about waking Mom or Dad to help her get a good snack.

Although talking about it this time will happen too, I believe we will be installing a lock on the pantry. I have mixed feelings about it. In some ways it seems cruel or like caving into PWS. We have beaten this thing in so many ways! On the other hand, I know that I sleep like log and Ayden Jane could eat her way through the entire kitchen before I woke up.

I would talk about it more but honestly I am just too mad/sad. Sometimes I hate reality...

Dr. Mom

2012-01-23T06:51:00.000-08:00

Ayden Jane is great in some ways, but there is definitely something still going on that I just can't get to the bottom of. She is on her second course of antibiotic and the quantity of stuff coming out of her has significantly waned, but a nasty cough keeps lingering. Basically, she acts perfectly normal (for her) and then 2 or 3 times a day goes into a yucky cough and brings up nasty, thick, yellow/green crud.

Not sure if we just kept killing 80 percent of the infection so this back to back courses of antibiotics will do the trick. Or if it is a combination of constant allergy goo on top of the infection just not allowing her to clear everything or something I just haven't thought of yet.

I am taking her to a pediatric allergist/immunologist Feb. 2 to see if we can get to the root of anything triggering the problem. Then we have our scheduled endocrinology appointment with Dr. Clark Feb. 16 so the plan is to just keep AJ on the rest of this course of antibiotic and Zyrtec until told otherwise.

I am comfortable with this plan, but not liking the old feeling of such responsibility for her medical decisions. Primary care is not really involved at this point as we were basically told at that appointment they were not concerned. Not really fair on my part since it was not our usual pediatrician, but I sort of just defaulted to Dr. Clark who is 2 hours away... I will be glad when this one is solved!!

Questions

2012-01-21T11:27:00.000-08:00

Ayden Jane is a master of the question. We actually joke that when she grows up she will be a professional interrogator because once she hones in, there is no escape. You will eventually just tell her what she wants to hear (if you can figure out what that is) and hope she will leave you alone!

Her questions are amazing though. The other day she asked me, "How does God love us?" I answered because he made us... along the lines of 'why' God loves us. She made it very clear, though, that she meant how. Like how do we feel God, or hear God tell us He loves us... Harder to answer for sure. I think she just really wanted to be able to give God a hug and feel His love squeeze her deep.

She often asks questions about when she goes to college or when she doesn't live with me anymore. Obviously this is because Kayla is at college and we have begun the college search with Noah. I answer her questions without limitations, but it is hard to not feel sad knowing the battles she will have to win to make those things come true. They are just expected, almost taken for granted with the other 3.

Then there are the impossible to answer questions. Why did God make the sky blue? Why did L's dad die? Will you die? When? Will you or me die first? Why is it dark at night? Why does my body not work with sugar? Why did God make Noah a boy and me a girl? Why are you my mom and Gary my dad? Why do we have a big family? Why is water wet? Why do we grow? Why do we go potty? Why do you love me? How much do you love me? How much water is in the ocean? How much doggies are there? ... ALL DAY LONG.

My favorite, though is when she asks questions to get what she wants. "Mom, do you want to go to McDonald's and get a drink? I'll come with you." Of course we all know that what she wants are apple dippers and a chance to play on the slide.

Lately she has expanded from her immediate family with the questions. She pinned a friend who has a 3 month old the other day. After a few minutes I did my best to rescue the mom from the onslaught.

Pictures

2012-01-16T21:14:00.000-08:00

I have no idea where I am going with this post so just hang with me.

When I look at pictures of when Kayla and Noah were little or even when they were not so little and Mckenna was the little one, it seems like a whole different time. Like a whole world away. I was a different person. Our future was a different picture. Of course there were struggles, I know it wasn't a 'perfect' or even easy time of life. Somehow life made sense though, and I guess I felt like I knew what I was doing or at least where I was headed.

Enter Ayden Jane. First there was the shock of her not being born healthy and sent to MUSC. As hard as all that was, I think the day I received the phone call that said her test for PWS was positive was even harder. In that instant, my life changed forever. This was a long haul issue. I was plunged into a world of genetics and endocrinology. Neurology and nutrition. PT, OT and speech. It is a never ending challenge to push hard, but remember it is a marathon. I can't sprint through it all. There are times I just want to enjoy my big kids, but what about Ayden Jane...

It is a little hard for me that when I look at the old pictures from before PWS, I have such awesome memories and a feeling of joy. I guess that is the perfect word for how our house 'felt'. It was a safe place, a joyful place filled with laughter, hopes and dreams. Now I feel like I fight to keep things that way between the stresses that come with special needs parenting. I look at pictures of Ayden Jane and I do see some great moments when she overcame something, but the overall feeling is of .... sadness? That maybe too strong. I guess more like struggle. Oh, and don't forget to add in the worry.

I guess day to day when you are in it, you just keep plugging away and you don't notice the big picture 'feeling' around everything. Gary has done so much to keep the laughter rolling around here. I tend to get caught up in the fighting this PWS thing and way preoccupied. At times it just seems like I raised the older kids in a joyful home with other great families that we had much in common with... We figured the whole parenting thing out together and we knew our mistakes would all wash out in the end.

Don't get me wrong, there are unique joys of raising a special needs child and although I know that I am not the same person, I know that in ways I am a better person. In some ways I have lost confidence but in others I have managed to do or learn things I never would have dreamed possible. Hopefully, all things before and after PWS will one day blend into a beautiful collage instead of a seemingly stark comparison.

Busy Family

2012-01-15T19:43:00.000-08:00

Before I forget, here are couple of Ayden Jane phrases. When the dog comes by while she's eating she will say, "Sadie's eyein' on my food". Another favorite is when she is in the car seat and getting sleepy. She will tell me, "Mom, I'm just gonna warm my head up. Okay?" What does that mean you say? It means she is tired, but refusing to admit it. She is going to just lean her head against the side of her car seat which in her mind is, 'just warming up her head'. See? Makes perfect sense.

This week everything gets back in full swing. We will be heading to Mckenna's soccer practice Mon. and Thurs. Ayden Jane loves this because the fields have a great playground. Noah still has a couple of High School basketball games a week which will just turn into soccer games at season's end and Ayden Jane has ST, PT and horseback riding.

For now, I am still working Tue. and Thurs., although that only goes for a few more weeks. (I have some other things in the works but I'm not talking yet) A few more weeks and we can add Gary coaching JV soccer along with his regular work schedule and me getting back on the running trail. Activity, activity, activity....

Improving

2012-01-14T19:29:00.000-08:00

Today was day 3 of antibiotic/steroid meds and pushing liquid. Crazy how much crud is in her. Good news? Ayden Jane has learned to cough productively. Sad to listen to, and disgusting as she gets it out, but we will count it as good news.

After she woke up from her late nap today she was hilarious. It was a house full as Noah and a friend were watching football and Mckenna and a friend were having a nerf gun war. Ayden Jane was sitting on a chair sipping out of her new cup (part of the push for liquids). She was doing her best to be the center of attention by being loud and goofy and teasing Noah. So glad to 'have her back'. (and detached from me)

Ayden Jane was doing her best teenager interpretation. I started to list the phrases, but they are just not funny without the teenage attitude that goes with them! Just pretend you are a teen and use the words: whatever, really? dude, seriously.... now picture a 4 year old talking like that to two 17 year old boys. That's as close a picture as I can paint! Oh, don't forget the nerf darts flying past...

I am planning to start giving Ayden Jane Zyrtec. I am not excited about it. It tends to cause drowsiness, not a great plan for PWS and it is one MORE thing I will be pumping into her system. Uggg. I just don't really see any other options at the moment. I am making an appointment with an allergist for more ideas in the future, but at the recommendation of Dr. Clark, we will give Zyrtec a try while I wait.

Okay, enough of the sick, medical... blogs. Next one is going to be, well, not medical. Enough already.

PWS Sucks

2012-01-12T18:26:00.000-08:00

I know that this is not a new revelation for many of you. It is not a new revelation to me either, it was just one of those days where I was reminded of it loud and clear.

I'll start with Ayden Jane getting thick and cruddy with a nasty cough. Of course, along with this we get, "I'm hungry" 900 times a day and a panicky sort of personality. Throw in a 0.05 second attention span, a dose of clingy I must climb on mom and a dash of "what?' (not sure if she just can't slow down enough to understand or is so clogged she can't hear) Other than the cough, not your typical sick kid signs.

Jump to last Monday. I had her labs drawn to rerun because I just had that Mom feeling that we were headed for trouble. I got them back this morning just after I made an appointment at her pediatrician. Her IGF 1 is still out of range, but the other stuff makes that sort of an invalid number because it basically says she is sick! Last Monday her white cell count was out of range high already. There are some other numbers I am trying to get to the bottom of... I am so blessed to have 2 great pediatric endocrinologists guiding me. Looks like I will being adding an allergist at their suggestion.

So, Gary took AJ to the pediatrician. Our regular one was not in so he saw someone new. She said that with no fever and no other typical signs of infection she "was comfortable with not giving her any medication." Excuse me??? She gave Gary a script to do an x-ray if he was concerned about pneumonia and mentioned there might be a slight something in one lobe... She also mentioned that we have been fighting this a long time... Luckily, Dr. Clark had already told me from the labs and history that she wanted AJ on antibiotics and steroid today so if we had any trouble to call her back. Did I mention how awesome she is?

So, the fact that Ayden Jane is special needs (which means NOT typical) means that her reactions to things are different. She is not just low tone or delayed... She is way different on the inside and a little problem causes a cascade of trouble which takes a looooonnnngggg time to correct. No, we cannot take a wait and see approach thank you.

As of tonight, meds are in her thanks to Dr. Clark and I am confident that I am learning how to read her signs of illness correctly. As for what's next? First, get through this one as best as possible. Second, we will try zyrtec for allergies as it was magic for Noah and suggested by Dr. Clark. Hopefully it will not have the drowsiness side effect. Third, get an allergist on board if necessary to get her eosonophils? something like that, back on track. From my understanding they are fairly high and signal her body is reacting to something... Oh, I have so much yet to learn...

Through it all Ayden Jane is goofy and happy. (Demanding, but happy) She had some hysterical lines tonight as she continues to be quite the comedian and has a flair for words. I promise I will start writing them down as she says them because I can never remember when I get to sit down and blog!

Gerald and the Cricket

2012-01-06T07:39:00.000-08:00

One of Ayden Jane's favorite books (and mine) is Giraffes Can't Dance. It is beautifully illustrated and is a poem which is really fun to read aloud. Basically, Gerald (the giraffe) is clumsy and awkward and can't participate in the jungle dance. The other animals make fun of him.... That is UNTIL:

"Excuse me!" coughed a cricket
who'd seen Gerald earlier on.
"But sometimes when your different
you just need a different song"

At the end of the book Gerald has found his own dancing ability and is happy...

Then he raised his head and looked up
at the moon and stars above.
"We all can dance," he said,
"when we find music that we love."

Ayden Jane really feels for Gerald. She worries about him being sad every time we read the book. You know, like maybe this time he won't 'find his different song'. LOL I love watching her as we go through the book as her expression follows right along with what Gerald is feeling and her eyes light up every time when things turn around for him.

In the end, I find myself applauding the cricket and praying that in those moments through Ayden Jane's life when her differences are declared 'weird' and she has trouble sorting it all out, there will be a nearby cricket.

First Big Girl Bike Ride

2012-01-04T14:03:00.000-08:00

Ayden Jane got a 'big girl bike' for Christmas. She has been riding a cool little bike for some time so we knew she could pedal, but something about the bigger bike... She has been a little shy about trying to ride it, but when Mrs. Jen came today for PT it was time to hop on.

Here is the result! Yep, it took about 2 minutes...

Enthusiasm

2012-01-04T06:51:00.000-08:00

Enthusiasm. Ayden Jane has gobs of it! It is so much fun to be around her excitement for .... everything! When opening Christmas presents she jumps up and down declaring everything just what she always wanted. She asks what we have to do today and whatever it is she gets excited about it. Grocery shopping, "yippee!" Therapy, "Hooray!" Go to a playground, "Thanks Mom for taking me to the playground." A bubble bath, a few stickers, 2 dark chocolate chips, any sibling comes home, completing a puzzle or building a tower, a new toothbrush, going to school, doing anything with Sadie (the dog), a few minutes of wrestling... Everything is just met with such excitement and appreciation. Everything it BIG.

It is fun to watch and a bit overwhelming at times. The overwhelming part comes when things are met with the same passion but on the disappointing side. The total heart wrenching tragedy when a feat cannot be accomplished. The excruciating pain of the word, no spoken from Mom or Dad.

I am happy to say that most days we live in the blessing of her enthusiasm. There is a spirit of happiness and just plain fun about her. May the passion inside her always be close to the surface. I find it a great quality. I remember Noah being a bit the same way as a little guy. Just a huge heart, bundles of energy and a zest for life. I'm not sure where along the way we learn to dial it all back, but I think we all could use to allow a bit of passion for what excites us pour out more often.

Healthy New Year

2012-01-01T10:10:00.000-08:00

So I have not updated on how the illness of Oct. - Nov. has played out. Ayden Jane has continued to recover and even just this morning as she was running around nakey while changing clothes (she would still love to live in a nudest colony) Gary just looked at her and remarked on how totally different her 'shape' is. The belly was flat and the muscles are again noticeable. Her attitude is great and she is so stinkin' funny and quick witted! (I will get to that). She can again walk past food and not care, she leaves food on her plate at meals and when she asks for snacks, it is usually past time for one! She has soooo much energy I feel like we spend our days trying to provide enough activity to satisfy her. She is sleeping well, dry through the night and pretty easy going. Oh how I hope things stay this way!!!

So, what have I learned? First of all, after reviewing past illness... I have come to a few conclusions:

1. Ayden Jane mounts a pretty typical response to viral illness. She has fever, aches or pain... Her body knows it is under assault and can fight back pretty well.

2. She does not respond typically to bacterial infection. No fever, no complaints of pain, just gradually starts to act unlike herself. I now know for sure that there will not be typical signs when infection is involved and will not wait! Also, because she does not respond properly to infection, we will add steroids when antibiotics are warranted.

3. Ayden Jane has seasonal allergies. Not a shocker with family histories and not really bad allergies. Just enough that she gets congested, cannot clear it and it turns bacterial. She also had a patch of extremely dry skin, possibly eczema. We started her on an antihistamine and it seems to be doing the trick as she has stayed slightly congested through the month of Dec., but it is staying clear and she is getting healthier.

Here is to a healthy New Year.

Happy New Year!

2011-12-31T21:34:00.000-08:00

It is New Years Eve and the house is quiet. It gives me time to think back over 2011 and look forward to 2012. Gary is working... Kayla is home from college and enjoying time with her friends... Noah is with the guys at his friends house... Even Mckenna is spending the night! Ayden Jane and I have the house to ourselves. Of course, she will likely sleep with me anyway so it won't seem too empty.

Looking back: Gary is settled at work. That is a short sentence, but it took years in the making. Trust me.

Kayla is a Clemson student. 2011 was a big year of transition for her. She graduated from HS and lived somewhere other than Pawleys Island for the first time since she was 3! She has made so many new friends and learned so many new things. She is still our Kayla, but she is becoming more and more her own person with a giant world open to her. It's hard to explain.

Noah has made some tough choices. Some of them good and some of them not, but all of them have taught him much. He has taken on a slightly new role of oldest in Kayla's absence and done a wonderful job of caring for his little sisters. Ayden Jane trusts him completely and adore's his attention. I think he will be happy to leave 2011 behind, but I believe 2012 holds great things for him!

2011 was great to Mckenna. She finished 4th grade and entered 5th confident and happy. She has discovered that not only is she talented athletically, but that she loves art. She can still hang with the boys on the soccer team, but has made solid friendships with some girls. She is growing up so fast!

Ayden Jane accomplished more that I could have imagined in 2011. We are glad to put the illness of the fall behind us, but I can't let the rough couple of months dampened my awe of what she has learned. Last winter she was still 'little'. She was part toddler, part preschooler. She is all out preschooler now. She is active and social. She has friends, she is learning and happy and healthy. She is far more a typical 4 year old than a 4 yr old little girl with PWS.

So, what about 2012? I plan to focus on prayer, getting back to running, being a good wife, enjoying all the time I can with my kids while they are around and reading a few books in whatever time I can find. Oh, and of course, keeping up with this blog!

Christmas X's 4

2011-12-29T20:01:00.000-08:00

The past 4 Christmas's in pictures. (or close anyway)

Scootermania

2011-12-27T10:44:00.000-08:00

I have much to say, but I am too busy heading back outside to play with these two to say it. More pictures and updates to come.

Christmas Eve

2011-12-25T10:06:00.000-08:00

I think I like Christmas Eve as much or more than Christmas Day. The excitement and anticipation, the fun last minute craziness, the candle light service at church....

So what did/do we do on Christmas Eve? The day is spent making some last minute gift adjustments because, well, we tend to be last minute people. I love Christmas Movies like Elf or Christmas Story playing in the background , although this year we went more on the side of football. Then we have supper and head to church. It was great to see all the kids together singing Christmas carols in church and watch the wonder in Ayden Jane's eyes at the candle light. Mckenna took her down front for the children's story. The pastor asked for all the kiddies to come on down. Later we discovered that Ayden Jane had loved going down front because she got to be a kiTTy. Yes, it took me a little while to make the connection!!

When we came home it was time to open the traditional one gift on Christmas Eve and bake lots of cookies for Santa. It was REALLY hard for Ayden Jane to handle the whole one gift thing. We have had presents under the tree for quite some time and Ayden Jane has been great about leaving them alone. Once she got started though she was hooked! No worries, she opened a couple others and all was well.

After we put Ayden Jane to bed with stories... of Christmas flowing through her head it was time for the rest of us to play cards. It was hilarious! It is fun now that Mckenna is old enough to really hang with us. We played a rousing game of UNO with lots of crazy extra moves to keep it moving really fast. It don't think we have laughed so hard in a long time. We kept saying 'last hand' but continued on anyway. It had to be 11 before we ever sent Mckenna off to bed. Gary has instilled an enjoyment of board games and card games and good old fashioned fun in all of our kids. He has played games with them since they were little and can manage to take any game (even if it was meant for much older kids) and find a way for them to play. It is not often any more that all of us are home and can play games together so it was a little extra special. I have a feeling that when these kids get together as adults, we just might just find them catching up with one another over a good game of cards.

All the fun of the evening gave Santa a very late start, but when has Santa ever gotten any sleep on Christmas Eve?

Fiddlesticks

2011-12-21T20:10:00.000-08:00

We have the little elf from Elf on the Shelf. Ayden Jane was not so into it the first few mornings. She had a hard time looking for him for more than a second and wanted us to tell her where he was. Basically, she did not see the fun in the whole thing.

We have since read the book several times and she is fascinated with him! She about had a nervous breakdown when Mckenna touched him. Every day now she gets sooo excited to find him. I think she will really miss him when Christmas is over. Glad some holiday traditions have nothing to do with food.

Christmas Vacation

2011-12-19T06:24:00.000-08:00

Ayden Jane is having a little trouble understanding why, if Kayla is home, school is out, the decorations are up... it's not Christmas yet! She is not a fan of sleeping in or having days without school. (yes, the opposite of the other 3!) We are taking it one day at a time, finding fun things to do. Luckily the weather has been very cooperative and we have been able to go to the playground, take walks and generally play outside a lot.

We have had a few holiday related challenges food wise. At church yesterday the preschool kids had a birthday party for Jesus. I get it. It is a cute way to get the point across, but the food related items were a bit much. I had packed a usual snack of nuts for AJ. Kayla picked her up from her class and said that she was seated with an untouched, icing loaded cupcake in front of her! She's never had one so I am not sure what she was thinking as she looked at it. When Kayla talked to her, AJ just told her excitedly that she had a cupcake for Mckenna! Have I mentioned she amazes me? She came home and went straight for the dark chocolate for her treat too. I was good with that. I figure she sat there, stared at a cupcake with no other treat in reach, did not complain and waited patiently until she got home!

On the health front, I am happy to say that so far she has stayed healthy. Woo Hoo! She has been great behavior wise and looks better each day. She is back to hungry at appropriate times helping to choose appropriate foods and totally satisfied when done. I even had her at the pool yesterday and another mom commented on how athletic she was! Part of me wanted to hug her and tell her how hard we have worked for years... I wanted her to know the joy of watching AJ grow and accomplish such great things. I wanted her to feel the amazement of the blessing of those moments... I just smiled though, and politely agreed with her. Never quite sure when to spill forth and when to just smile...

Kayla's Home!!!

2011-12-17T18:10:00.000-08:00

Kayla came home and her first order of business was a 'Kayla Day' for Ayden Jane.

It doesn't get any better...

Carnitine Craziness

2011-12-16T16:33:00.000-08:00

The other day when I received AJ"s lab results, the carnitine was still pending. Now our history with carnitine is that we supplemented but the blood work last April showed it to be low. We could have tried to increase the dosage, but her dose was already pretty good for her weight. Instead we decided to mix the forms of carnitine a bit to see if we could get a better uptake from it. I went from 1 cap a day of carnitine fumarate 500 (CF) to 1/2 cap of CF and 1/2 cap of carnitALL 600. So, all in all, not a big increase in quantity. The CarnitALL has a mixture of carnitine including CF, but the big change is that it has some acetyl carnitine. Well, we went from low to just barely out of range high. Perfect!

It just shows again how her little system just has trouble sometimes absorbing certain nutrients as well as using them. The iron, one form changed nothing, the other worked wonders. B12- the forms seem to help differently... I guess I'm a bit geeky as I find it fascinating and wish I could understand the whys! In the end, I am just happy to have options and doctors who are willing to guide my crazy ideas.

Lab Results

2011-12-12T06:48:00.000-08:00

Ayden Jane's lab results are in. On one hand they are awful. On the other, there is a lot to learn from them.

Ayden Jane's IGF-1 level is through the roof! Upper limit for reference range for her age is 284 and her IGF-1 came back 521! We did a few other tests and there are clues throughout that show that Ayden Jane has just not yet recovered fully from being sick. The poor kid!

I suppressed my first inclination to ... PANIC! at the idea that her IGF-1 is so high. I took a deep breath, thought through all the labs and e-mailed them to Dr. Miller.

I have to say that when we had them done on Tue. I thought that Ayden Jane was back to her old self. This weekend I would have to say there have been significant improvements even since Tue. in behavior, attention span, interest in food, sleeping.... More proof that this kid is having a hard time putting the illness behind her completely.

In the end I think there is just a lot to be learned from the whole thing. Ayden Jane has always shown a bit of this whole mess when she gets sick, but it is usually short lived and she returns to her old self. We saw when she was tiny that little illnesses just took her body a long time to fully recover from. Now we can see it in lab work as well and know that I am not just crazy and thinking I see things!

Basically, Dr. Miller explained it something like this: Illness causes insulin resistance due to inflammation in the body, so she felt more hungry (inflammation = blocked receptors for insulin in muscles, liver, and brain = high insulin levels in the body = low blood sugars when insulin peaks at inappropriate times = insulin resistance = brain doesn't get complete message of satiety = increased hunger) and the insulin resistance causes increased insulin levels in the body which increase IGF-1 levels which is why hers are so high.

So, my next question was what to do in the future to keep this downward spiral from tumbling out of control? One possible answer is that a steroid should be given (likely at a minimum dose) when she first shows signs of illness to keep the inflammation under control and stabilize blood sugars. I need to ask if this is all related to CAI issues in PWS or if this is just a quirky Ayden Jane thing.

We plan to rerun the labs after the Holidays. Dr. Miller recommended to have her healthy for 2-4 weeks to be sure the labs are valid. Here's hoping for a healthy Christmas!

Ginger Bread House

2011-12-07T15:46:00.000-08:00

At preschool today, Ayden Jane's class decorated ginger bread houses. Mrs. Jai made little houses out of graham crackers and icing. The kids were given bowls of candy and bowls of icing to use as glue. Now, a PWS parent might think this was a completely inappropriate project. And for some kids with PWS, it may have been. I have to say, however, that Mrs. Jai told me ahead of time, picked a day I was sure to be able to come to help and then set the whole thing up for success.

She started by explaining to the whole class how they were to decorate the houses. She showed them how the icing was our glue and to use the knife (plastic of course) to put it on the house. She told all the kids that the candy was to decorate the whole house. She told them not to eat the candy while they were decorating and she would give them a piece when they were done. Ayden Jane was at a table for 2 with a little friend and me to assist.

The girls had a great time and I can honestly say that I did not even have to tell the girls once not to eat the candy. They were all about the decorating! It was a great OT project as it was not easy for Ayden Jane to use the knife to get the 'glue' out of the bowl and then blob it on the house where she wanted. In the end it was great fun, stress free and when the teacher gave the kids a piece of candy at the end, AJ had a piece of dark chocolate and never even mentioned all the bright colored candy (and there was A LOT).

Just one of those days that seemed way more 'typical' than PWS. I love those days...

Fall

2011-12-03T19:23:00.000-08:00

I know it's December, but here are some visions of Fall.

The pumpkin patch with St. Peter's!

Thanksgiving Feast at St. Peter's

Playing in the leaves with Mckenna.

Crawling through,

Loving being buried

Mckenna just being Mckenna...

What Did You Say?

2011-12-01T18:31:00.000-08:00

Glad to say that Ayden Jane has continued to be her generally happy self. Looks like we have put this yuck behind us for good. Now, we have to do a bit of food work to get back to our lean self. Ayden Jane is definitely carrying a couple of extra pounds. It does not slow her down and I don't think it is a trend other than from being sick. I do think I need to get rid of them, or at least have her maintain and grow into the extra pound or two. I am not going to do much of anything other than maybe try to cut a few bites here and there for now. Next week we will finally get the chance to test her gh levels... so depending on what happens with that I may change my plan. For now, I am just glad to have my sweet, silly little girl back.

On another note, Gary has been telling me he thinks we need to get Ayden Jane's hearing checked. It drives him crazy how she says what, pretty much every time you tell her something. Thing is, she is saying what before you even finish. Also, I have started to answer the 'what' with my own question. What did I just say? She can 80% of the time tell me what I just said. She has not given herself time to process whatever was said so she is already saying 'what'. But it is not because she didn't hear it. Now as to the processing issue? It may be a bit slow, but I think it is more likely that Ayden Jane has just developed a habit of saying 'what' or 'why' to make sure she stays involved in the conversation until she can form the ideas in her head into words.

The other one with this is the asking repeatedly. For example, she will ask in the morning about what she has that day. The more things listed for the day the happier she is. At some point before we head to school I will give her the run down. We will take this weeks busiest day as an example. Ayden Jane had school, 9-12 then was staying for 'lunch buddies' until two. (Lunch buddies is her favorite thing on the planet) Noah picks her up and takes her home and puts her down for a nap with Daddy (who is already sleeping) When she wakes up she has horses and then this past week we went from horses to Noah's basketball game. As I tell her everything planned she jumps up and down, repeats them... 2 min. later she asks, do I have lunch buddies today? 2 min. later she asks do I have lunch buddies today?.... You get the picture.

So, here is how I have started dealing with it. I will ask her what I told her when she asked the first time. She will answer me with the correct answer. I then tell her she doesn't need to ask anymore because mommy will not change the plan without telling her. She jumps up and down and skips away without asking again.

Not sure that it is totally a PWS thing, but I think a typical 4 year old thing with a dash of PWS anxiety sprinkled on top.

Preschool

2011-11-28T16:55:00.000-08:00

Even with all the being sick this fall, Ayden Jane really didn't miss many days of school. The original cold came on the weekend and since the sinus infection and even the walking pneumonia weren't contagious we let her go every day she was up for it.

I have been totally distracted/exhausted/frustrated with all the behaviors... I have not paid much attention to what she has been learning. Now that she is better I am realizing that I have missed a LOT! She was lining things up and started counting them. There were 15 and she counted them perfectly! Wow, I knew she could count to 20 and that she got the idea of counting objects, but I had no idea she could count so many objects in a row with no problem.

It made me really listen to her today and the words. Oh the words.... They are getting bigger and the sentences more complicated.

So, what do they do at preschool? Here is a sample from today. I went to pick AJ up a few minutes early today like I do on Mondays to head to speech. When I got there AJ was working on a ball of playdoh. There were buttons hidden in it. Ayden Jane had to squish the playdoh to find all the buttons. Talk about OT! Once she found them she chatted with her teacher about them, describing them... Then she had to take them one by one and count them as she put them in a little container.

Did I mention I love her preschool!!???

Fingers Crossed

2011-11-27T19:41:00.000-08:00

Well, I am a bit afraid to say it out loud, but I think Ayden Jane is returning to 'normal'. Not sure what that means, but it makes me happy. We had a pleasant day on the soccer sidelines today. She traveled well, played well at the playground, handled food like a champ... Was just easy.

When we got home she played outside for quite a while. It was dark, but with the Christmas lights on the trampoline just played. She was in and out a lot, but I didn't pay much attention. It was so cute when I finally went out to see just what she was doing. I took one look at the trampoline and had to laugh. It was covered with, well, everything. She had lugged stools and a stroller, babies and balls, she even had batteries out there. When I asked what all the stuff was for she told me that the little girl (one of her toys) was having a party. It was a lot of work and adorable. I tried to take pictures before we brought it all in, but it just wouldn't work.

I wish I could figure out what causes the difference in Ayden Jane when she is sick. It just has me fascinated. Sure is nice to be on this side though. We are looking at the start of Noah's basketball season and lots of Christmas things to do. Not sure I could handle it all with the out of control AJ of the past couple of weeks.

Thanksgiving

2011-11-25T06:01:00.000-08:00

I wish I felt, at the moment, like writing a glowing epistle of how thankful I am for all our blessings. I am sure I could start and pull off a truly convincing post and I would mean every word. At the heart of it all, I recognize how blessed we are with family, friends, jobs and of course how well (in general) Ayden Jane is doing. How did I truly feel at the end of Thanksgiving?

Like holidays will never be good again. Okay, that's harsh. Maybe more like they will never be easy again. I definitely see the need to change how we 'do' Thanksgiving. I, actually, have had it ridiculously easy for Thanksgiving. My mom takes care of the meal at her house and we just go spend the day, relax and enjoy talking, football and food. We try to clean up a bit after the meal so my mom can relax a too. Peaceful, quiet...

Enter Ayden Jane. It's not even really the food that is the challenge. Ayden Jane was really pretty good about that. She is just so high maintenance. She is a busy little thing that has a really hard time just hanging around. I spent the better part of the day dealing with all things AJ. By the end of the night she was attached to me like velcro and her behavior was getting pretty crazy. In the end, she completely lost it and we left in tears. Happy Thanksgiving.

I am thinking that some serious outdoor activity is going to have to be priority for the first half of Thanksgiving Day. This year we were distracted with the need to pick up some new furniture, so there was car seat time and sit around time, although there was some time at home with swings and trampoline available. I also know that AJ is not really herself yet. She is feeling better, but her little system has not yet returned to proper balance. Basically, she is a sensory seeking, energy filled tornado of activity. Just can't bottle that up all day and have it end well.

Noah the Great

2011-11-20T19:52:00.000-08:00

Ayden Jane is slowly getting better. I would say she is still hungrier than usual, but can handle the word no. She is able to play and has an attention span, just that she cannot play by herself yet. She is a bit itchy, bouncy, touchy... sensory seeking, but handling it. She is talking CONSTANTLY and often about nothing, but it is really clear! Guess it helps to get all that junk out of your head. I guess the best way to sum it up is that she is feeling better and returning to her old self, but she is HIGH maintenance. I think I spent all day Fri. and Sat. keeping her occupied.

Enter Noah the Great. I could hardly even get a shower this morning, the house was a complete wreck. You know the way a house gets when the kids have been sick a while. I had a list of things I needed to do and I work tomorrow. Noah returned from spending the night at a friends, took one look at me and offered to take Ayden Jane to church with him. Wow. I needed to go to church, but a whole morning to reorganize? I turned on the christian radio station and dove in!

I managed to get the house straightened up, several loads of laundry in and improved my mental status greatly!! I fed the kids when they came home and then Noah the Great took AJ and Mckenna swimming! I cleaned Ayden Jane's room, managed more laundry and saw the light at the end of the tunnel when it was all said and done.

The cute part of it all was that Ayden Jane just totally attached herself to Noah. He was completely her hero. She wanted him to eat with her, sit by her, listen to her, get her milk for her... Noah hung in there and made Ayden Jane and I both deliriously happy.

I Like This Kid!

2011-11-19T08:15:00.000-08:00

Wow! Ayden Jane is dramatically different! She had her moments yesterday, but I'll gladly take it over the behavior of the days prior.

Last night Gary was off from work so we decided to head up to the mall with AJ and Mckenna. It is actually a bit of a hike from where we live and we have never gone there often, but rarely would be the word to describe it since AJ entered our lives. She always hated the stroller, wanted to walk (at the speed of .001 mph), stare overwhelmed at everything and has NO fear of wandering off. Not that she would talk to strangers or even consider going willingly with someone she does not know, but if she sees something interesting... zoom! She suddenly moves at the speed of light and as quiet as a ninja. She can vanish in the time it takes you to blink! She also has this amazing ability to slip through a crowd, dodging everyone.

So, last night we decided to risk it with AJ feeling a bit better and quite a bit older. She was awesome. She did not get upset about not buying everything she liked. (lots of prep work on that one of course) She walked the entire time staying right with us and asking to go see things that interested her. Whew! She had a great time which, of course, means we all had a great time.

It's funny how little things make or break your sense of ever feeling 'normal'. I am sure it is the same with all families with special needs kids. Things as simple as Christmas shopping as a family and enjoying it.

Trouble

2011-11-16T19:46:00.000-08:00

It's official. Ayden Jane is TROUBLE when sick. I was on the phone attempting to help Gary with something. Within the 10-15 min. conversation Ayden Jane set off the car alarm, used the stamps as stickers and climbed up on the counter and emptied a bottle of red cough and cold medicine all over everything. Believe me, the rest of the day was about the same! Shortly after, it was time for PT. It was 90 day eval. time so I wasn't too worried about her not feeling great. Let's just say she was challenging.

I did also manage to get her back to see the doctor today and he is treating her for walking pneumonia. Great. Zpack and steroid here we come! I really want my sweet funny kid back to stay.

'di'

2011-11-13T12:12:00.000-08:00

Well, that week went fast!

Biggest things we have been dealing with in Ayden Jane over the past 4-6 weeks. (loong time) Is a yucky nose thing. It started a ways back as a cold. After a couple of weeks we took her in and the antibiotics loosened up a ton of... okay I won't go there. Still, even after the antibiotics were done we were/are left with a yucky nose. It is all nice and clear and no fever or anything. Ayden Jane has also slowly returned to herself with personality and behavior. Trouble is, still the runny nose cough...

I guess we will head back to the pediatrician before long if AJ cannot finally put it behind her. grrr. As far as the very slow recovery in energy, metabolism, personality... Dr. Miller has given us a script of cortef to try if (and we all know I mean when) she gets sick again and cannot seem to rebound.

Also, I have decided it is time to check gh levels. I can't pinpoint why, but last I was at our local endo we felt it was too soon to check them but that they would likely need a check before I returned. The past 2 increases I knew by looking at AJ it was time. This time I am really not so certain, but she is just growing up so fast and I can't read her as well as when she was little. We will also check carnitine levels to see if the changes we made in April corrected the carnitine deficiency. I added some acetyl carnitine to the carnitine fumarate we were giving her... Also we will check thyroid since she was borderline in April and she is high risk both from family history and PWS. Finally, Dr. Miller asked us to run a cbc but I am not sure what that is for other than just a general check.

On another front, Ayden Jane rides horses. It is therapeutic horseback riding and is hopefully keeping scoliosis at bay. Her horse for the past year has been Tamara. Tamara got a cold about the same time that AJ started with one, but last Tue. when we went we found out that Tamara died. It is a longer story than that, but that is the end result. Now, combine this with the fact that AJ cannot wrap her brain around the death of the father of one of Mckenna's good friends. I still haven't told AJ about Tamara.

Don't judge. This is the conversation I had the same day with Ayden Jane about L's dad. Mom, where is L's dad? Me: He is in heaven with Jesus. AJ: Can he come back and visit L and give her a hug? Me: No, but he will watch L grow up and smile at how funny she is. AJ: Why does he live in heaven now? Me: because he died. AJ: Just because he 'di' he has to live in heaven? Me: yes. AJ: Mckenna 'di' but she doesn't live in heaven. Me: Mckenna didn't die. Do you mean like in the video game? AJ: No, Mckenna 'di' and she still plays with me and gives me hugs. Me: When did Mckenna die? AJ: you know, when it was hot outside Mckenna 'di' in the pool. Me: (finally catching on) Mckenna diVe in the pool. L's dad dieD. That means he is dead. AJ: Oh, you mean like the dead bug?...How L's dad get dead?... yes, I spared you many laps before I ever caught on to dive and yes, there is what felt like another hour to the conversation where Ayden Jane used the word dead about a million times... Longest car ride EVER.

What if I Don't Want To

2011-11-06T07:38:00.001-08:00

So lately, Ayden Jane had declared war. Sort of a behavioral war. It is so hard sometimes to determine what is PWS behavior and what is a 4 year old challenging authority behavior. I guess in the end we treat it about the same so it doesn't really matter, but I know that the PWS variety is less within her control so it gives me a bit of sympathy for her. Not enough to let her get away with everything, but maybe at least enough sympathy to have a little bit more patience.

I guess what it comes down to is that the root of her behavior is typical, but the intensity is definitely aggravated by PWS. Yep, that would be how you spell Tantrum. (Note the capital T) We have not had a tantruming child in any of the other 3 and it is not one of AJ's endearing qualities. I am thinking it is here to stay, at least for a little while. Good new is that she seems to save these episodes for us. At least that spares her teachers!

Example of her expressing her independence. This morning she was in our room. She was stepping on something I could not see and I didn't like the sounds of it. I told her to please stop. She looked at me as if I had a hole in my head and kept going. I told her again ... She looked straight at me and said, "What if I don't want to?" Grrr. She was picking fight number 3 and it was just 9 am. When I moved to see what she was stepping on, it turned out to be a toy of hers. I told her that we did not treat toys that way and to pick it up and put it away in her room. Again, "What if I don't?" So, you guessed it. The toy is now living where she can not play with it and she spent some good old fashioned time out time. Of course, we had to endure the sobbing injustice of losing a favorite toy....

She totally 'gets' it. Later she said, "look mom, I am taking good care of my toys. Can I get the ark back yet?" (Don't worry, I did not cave to the cuteness) Also, at one point she asked me, "Mom, why you the boss?" Hey, at least she is willing to recognize it as fact!

Saturday

2011-11-05T19:23:00.000-07:00

Well, it was a pretty typical Sat. around here. So what does typical look like? Ayden Jane was up way too early. You know... before the sun... with no school or work to rush off to. So we flipped on the tv and she curled in for a bit.

Of course, that didn't last too long so it was up and off to make some breakfast. I often feel a bit like the old Dunkin' Donuts commercial. You know, the guy dragging himself out of bed and mumbling, "time to make the donuts..." Only here it is "time to make the eggys." The trouble was that this morning Ayden Jane did a great job taking supplements and eating her fruit, but just had no patience for the eggs. She escaped without eating them as we prepped to head to Walmart for some grocery shopping.

At Walmart she did great until the end when we had major melt down. (remember the eggs she didn't eat?) She was truly hungry, the underfed brain, can't rationalize hungry. It amazes me what a difference a good amount of protein for breakfast makes in her day.

We made it home from our big shopping adventure and began to get ready for Mckenna's soccer game. Ayden Jane needed a nap, but it just wasn't in the cards. Problem is that when she does not get a nap she is, well, difficult. You know, mischievous, disobedient, looking for trouble. She locked herself in our bathroom and would not listen to Gary when he told her to unlock the door. Yep, no more doorknob.

She survived the ensuing wrath and we made it to the soccer fields. Of course, my plan included her sleeping on the way... not her plan. Luckily, she had 2 friends at the field and she amazingly played with them for a good hour straight before she announced she was hungry. I gave her some nuts to snack on and after she ate a few and had a bit of down time she was right back in the middle of the games.

Next up? Supper with Grandma and Grandpa on the way home to celebrate Mckenn's fall season. (She played awesome by the way.) Sitting at a restaurant after a big day with no nap... a little risky. Add in that it was a pizza place (you know, a place where everyone eats pizza but her!). She and I split a chicken sandwich with a side of tomatoes and Mckenna gave her some pepperoni. It went great. I remember a couple years back when things like going out for pizza seemed impossible! Now, we just work around it and Ayden Jane is so used to how she eats it is just not an issue. Relief! She did get quite squirrelly by the end but I think hang in really well. Whew, finally to bed.

So what's on tap for tomorrow? I'm too tired to worry about it. All I know is that I am not looking forward to her waking up bright and early. Especially since after setting the clock back it will be an hour before bright and early!

Small Acts of Kindness

2011-11-04T15:20:00.000-07:00

Not sure where this post is going to go, just feel like there is much to say.

First up is preschool. Ayden Jane loves her preschool and I love how loved she is when she is there. She is blessed with a teacher that see all that she CAN do and is patient when AJ tries to tell long stories and gets stuck. You know, like the old record players did. Ayden Jane is tenacious when it comes to getting her point across, but it requires patience on the part of the listener and when you have a classroom of little people I am sure it is hard to just let the world go on around you and wait for her to get it out.

I went inside today to pick up AJ because I had a couple of little things to take care of. When I did so, I got to chatting with her teachers. The conversation turned to how great AJ is doing and how she is right there with all her peers. It's funny, I almost cannot believe them. I mean, my job is to find all the weaknesses and work on them. How can that translate to her being right with the pack? Surely they are missing something. Yes, I, apparently, have also been brainwashed by therapy.

Then there are the other parents. We (PWS parents) all know that Halloween pretty much stinks as far as holidays go for PWS. It was amazing, though, when I went through the little bags Ayden Jane brought home from school. One bag had playdoh and some tatoos. There was a little bendy black cat and some purple vampire teeth from someone else. The one that really made me smile was the one with a little orange Halloween pad and pen, something else I can't think of right now and 2 small pieces of dark chocolate. Why does that melt my heart?

The mom who put this together called me about the party. I told her we were not able to come but thanked her for checking. (we had a genetics appointment) She didn't stop there. She went on to tell me how sweet AJ is and how she loves to chat with her. She asked me, politely, why AJ has dietary restrictions... I answered and she kept asking questions and truly wanted to know. No glazed over eyes or other signs of 'too much info'. Then, she showed how she had listened by going out and getting something special she knew AJ could have.

As heart warming as that is, what is more amazing is that she is not the first or only mom who has been so kind to us. Who has reached out beyond their own hectic days of raising little ones to do something extra special for AJ.

Somehow, I need to find a way to let all these people know what there small acts of kindness mean. They do it so openly, they truly could not imagine being any other way. I don't think they have any idea the lack of kindness and even cruelty out there for special needs kids. Or just the stress that exists when you raise a special needs kid. I guess that's what makes it so amazing. They are just wonderful, caring people who God has placed in our lives. I can only hope that one day, I can find a way to give them a glimpse of what they mean to our lives. Then, hopefully, get my own life organized enough to do the little things for others.

Phone Talk

2011-11-03T18:01:00.001-07:00

I ended up working a bit late tonight so when I got out I called Gary to see what they were up to. Mckenna actually answered the phone and we chatted for a minute. Then Gary got on the phone and we chatted. When he was done we had our plan of attack arranged and he hung up.

Shortly after that the phone rang. It was Gary calling me back. I figured he just thought of something else, but instead, Ayden Jane was obviously feeling left out. She wanted to talk on the phone too.

When we talk, I get so much of what she says by expression or context I did not know if I would catch what she was talking about on the phone. I mean, I have never talked to her on the phone, she is always with me. She was so cute. She told me a few things about her day and sounded so grown up. Honestly, she sounded like Mckenna! It was amazing. Made my day.

Happy Halloween

2011-11-02T09:01:00.000-07:00

This year I can truly say Happy Halloween because it went quite smoothly, PWS and all.

I don't think Ayden Jane really had a clue of what we were doing last Halloween nor do I think she remembers any of it. Now that she is a big 4 yr. old, she is very aware of what is going on! She and Mckenna were thing 1 and thing 2 for Halloween. (Hopefully a picture will come soon) They talked a lot about the costumes which we mostly just made. Ayden Jane was sooo excited because she loves to watch Cat in the Hat on PBS.

Halloween finally came and she was quite excited. Apparently, however, I had never really stopped to explain what we would DO. She woke up and asked, is it Halloween yet? I told her it was but not until dark, you know, after nap. So she of course wanted the days agenda so she could keep track and be sure she didn't miss it.

She did not have school but we did have a well child check. (I know, cruel thing to do on a holiday) After that we had speech, then lunch, then nap and after nap we would get Mckenna from her after school art class and get ready for Halloween. Hopefully a busy enough day to keep her occupied.

All went well until nap ended. She literally came sprinting down the hall after nap and said, "NOW is it Halloween?" I reminded her we needed Mckenna then stalled by asking her what she was going to do for Halloween. Here is her response and the ensuing the conversation:

AJ: We are going to the haunted house.

Me: I don't think there is a haunted house.

AJ: Yes there is, I saw it on TV (thanks Arthur, the one time she watches)

Me: Well that's just on TV. We don't have that around here. We go trick or treating.

AJ: What's that?

Me: You and Mckenna will dress up and go to the neighbors. When they answer the door you say trick or treat and they will give you candy. (sounds really crazy when you say it out loud)

AJ: Ummmmm. I will tell them I don't eat candy and they need to give me something else.

Me: No, you collect the candy and then you can trade it in to the Great Pumpkin and get a toy.

AJ: (Long pause) Cool! Is it Halloween YET?

In the end it all worked out great. Ayden Jane ran after Mckenna and her friend for nearly 2 hours. She only started to consider trying the candy when she was tired and hungry and we realized we did not bring a snack! She was thrilled with her Monkey George Memory game she traded for and we played a round before she was so tired she could not function.

Happy to have Halloween behind me for one more year.

College

2011-10-30T19:08:00.000-07:00

We have the unique experience of having Ayden Jane in 3 yr old preschool, but also a freshman in college and a junior in high school who is looking at colleges. Of course, Mckenna is sandwiched in between and just watches and learns.

Kayla is doing awesome at Clemson and loves it. The college search for her was not too challenging as she knew what she wanted, applied and waited to see who wanted to give her the most money. Basically, she wanted to go to a big university with lots of medical stuff and opportunities for research. Clemson was not her first choice, but we can totally see now it was the best choice.

Noah is very different. He wants to play soccer in college and is good enough to play at some division 1 schools from what we have seen. He, however, is not really that worried about playing for a big school on a huge stage, in fact as we have been in this process, he has learned quite the opposite. He wants to go to a small school. So, the search is on. It is fun and exciting. Of course, I have no idea where the money will come to make his dreams come true, but we will worry about that in a couple of years.

I makes me stop and wonder sometimes, what will this time of life look like for AJ? Is it possible to dream of college shopping? Dare I dream so big? Heck yea. Nothing wrong with dreaming.

I Like This Kid

2011-10-28T19:02:00.000-07:00

Wow. It has been a heck of a week and Ayden Jane has been driving us nutty. She has had this cold way too long and although we were supposed to head to MUSC today for a genetics appointment, I decided it was time for the pediatrician. The cold lingered about 2 1/2 weeks. The first 2 days were nasty and then it settled and seemed to be mild and no big deal. Mckenna's cold ran the same course so no worries.

Then came the end of this week. AJ started a yucky cough... of a cold gone nasty. Now, I used to panic a bit when she seemed sick because so many PWS kiddo's don't show much in the way of typical symptoms and then when they head in to the doc are shocked to find out how sick the little ones are.

Hopefully this week will serve as a lesson to me as to what Ayden Jane's symptoms are! 1. Wanting tons of attention and seeking it by consistently making the wrong choice for behavior! 2. HUNGRY. She has been constantly asking for food. Not normal for AJ. 3. In capable of playing independently. 4. In 'overdrive'. She needed to sleep due to illness but somehow the illness had the opposite effect and she was classic overtired/wired. 5. panicky.

Enter antibiotic - my friend. She took a dose this morning and about 3:30 this afternoon, she slept.... and slept. 3 hours of off and on sleep, but mostly on. When she woke and ate supper she was like a different kid. We LIKE this kid. She even went out in the dark to swing on the swing set and sang to herself, "I swinging in the dark, dark night." She took a long bath by HERSELF and was as happy as a clam. She was patient and went to bed without any difficulty. She did not ask for any food. Who knew 1 dose of antibiotic could work such wonders!

Now the science geek in me wants to solve why does being sick make AJ, well (just gotta say it like it is) very PWS like. Hungry/food seeking, behavior problems, poor sleep, anxiety driven. Definitely need to mull that one over.

Busy Kid

2011-10-22T19:36:00.000-07:00

Gary is awesome with all the kids. For the past few years, though, he has had to work, work, work so that we could survive financially and keep me home. It has taken him a bit out of the day to day stuff with Ayden Jane.

Me returning to work has been a crash course. We were talking tonight before he went to work and he was saying how busy she is. Basically, it comes down to the fact that she does not watch TV or do anything static like that for any length of time. I can get about a 1/2 hour out of her in the early morning so I don't have to get out of bed right away, but that is about it.

She does love a mission and will 'work' for a good while. Also, if she is outside she can find lots to do. In the house, though, she is into everything. Now I do think that the cold she has right now is decreasing her attentions span even more, but it is just a part of her. There is no taking your eye off her even for a minute!

I mentioned that AJ is not feeling great. Actually, she and Mckenna have the same cold. They started with the stuffy noses last weekend and this weekend they both sound a bit like it is heading toward the lungs. Oddly, neither one of them gets sick very often but they sure picked this one up at the same place. I see a trip to the doctors office coming early this week if things don't improve tomorrow. Of course, it will be interesting to see how I pull that off with jury duty on Monday and work on Tue.!

Wednesday

2011-10-19T18:15:00.000-07:00

Ayden Jane is adjusting to my return to work, well for the most part. She does ask a lot of questions about what she is doing 'today' and what I am doing 'today'. She keeps close track of who is picking her up... Last Friday, at the end of my first week (okay, week with me working) she was exhausted and bailed on going to school. Instead she fell asleep for a bit in the morning and then we went to walmart to do some grocery shopping.

This week I worked Tue., then Wed. morning she balked at going to school. We went but were a little late. As we walked to the door AJ fell to pieces and started to tell me she had a headache and needed to go home. NEVER has she wanted to leave school. I think it was a bit of panic as we got to the door and they were all in circle... not the way it looks most days when she gets to school. I just took her down the hall and had her tell me the names of her friends. (their pictures were above their hooks) Then I told her if she did not feel well we could go home but we would be going to bed and I would have to call Jen (PT) and tell her AJ was too sick for her to come. Ayden Jane had gathered herself and she immediately told me she was not sick any more and she trooped off to class. Whew.

After school we came home and had soup and cleaned up a bit. Ayden Jane was... well I could call it goofy or I could call it difficult or I could even just call it down right disobedient. Mostly, I think she was just looking to get my attention. My full attention. Every second of my attention. Hmmm that working thing maybe? I chose the play into it and give her lots of extra silliness route and she came right around.

Jen came and Ayden Jane did awesome for her. Jen first got her up on the big exercise ball and worked some serious strength and balance stuff then she moved to some fine motor stuff. This video is AJ working on learning to cut. I don't think you can see it, but she was opening and closing her mouth along with the scissors. It was hilarious!

Extraordinary

2011-10-16T17:18:00.000-07:00

Mckenna had a bike a thon at school today. The kids were to ride laps on a 1 mile course. Ayden Jane wanted to do it too. I brought her bike, and figured she would ride a bit and then declare herself done. So off we went on the big loop. She pedaled that little bike the ENTIRE loop. Yep, she biked the full mile. There was no stopping her. She pedaled and honked her little horn. Lots of the kids knew her and cheered her on as we went. So awesome.

After we came home we were sitting around waiting for everyone to get ready for supper. Ayden Jane was running around, singing and just being excited and goofy. Then she managed to flip over backwards off a footstool she was sitting on. We saw it. Well, we saw her feet go up and we heard her head hit the wood. She cried a bit but not a for long. I asked her to come over to me so I could see her head and make sure she was okay. She walked over and I noticed a little trail of blood under her chin. I started to look for the source and realized it was also under her right ear. Oh wait, it is coming down from her hair... Wow, there is a LOT of blood.

Turns out she hit the top of her head on the corner of the hearth... Ayden Jane just stood there as Kayla was wiping blood off her. No problem with all the bloody paper towels. She chatted with Gary who had the soaked through paper towel on the top of her head. Gary got the bleeding stopped and we skipped the ER... this time.

Oh, and dinner was great.

What a Week

2011-10-14T11:11:00.000-07:00

Well, I took the plunge and am back to work. Well, sort of. I am working Tue. and Thurs., so not too much. This week though Gary had tons of over time (desperately needed) and I was to start. Hmmm. Tue. Ayden Jane stayed at Lunch Buddies at school. She was so way beyond excited. Sort of like, Mom, why do you always pick me up? I want to stay with my friends... Finally!

Noah picked her up from school and brought her home to a waking Daddy. Gary collected Mckenna and met me at McDonald's to trade/hand over AJ so we could go to horses. Ayden Jane did great with all of it. She told Noah in the morning, "Noah, be sure to not forget to pick me up. You do know how to get to my school, right?" AJ skipped the nap that day and was still great.

Wed. was our usual. School, PT/OT, nap and playground time during soccer practice.

Thurs. I left by 6 to head out of town for training for the new job. Gary was in charge of getting everybody off to school. First time. All went smoothly. Next he picked up AJ from school, gave her lunch and then sent her to grandmas for the afternoon so he could go to work. Mckenna joined them after she was done at school and I picked them up at about 8:30 when I got back in town. No nap again!

Fri. total exhaustion hit. We skipped school and took 2 naps! Then Kayla came home to visit!! Woo Hoo!!

Sat. we hit the beach with Kayla and she walked and walked and climbed out on the groin, splashed in the water and had a great time. She was so excited to see Kayla that she never stopped talking. It was so fun.

So far I think Ayden Jane is loving me working!! LOL.

Clemson

2011-10-12T10:30:00.000-07:00

Kayla and Ayden Jane in the tigers eye. It was homecoming and this was a huge tiger float.

Last Saturday we went to the Clemson football game. Some very nice friends gave us their season tickets for the game (since they couldn't attend) and we took our whole crew plus 1 off to the game and to see Kayla for the first time since she went left for college! As you can see it was a sea of orange and we bought our first orange shirts just for the occasion.

This place redefined the word loud.

Here are our girls enjoying the game. Go Tigers!

Kayla, Noah and friend post game. (and Gary's left arm)

Here is AJ rolling down the 'hill' in the stadium. The players run down it before the game and the students sit on it during the game, but after the game, it turns into a great play place.

Awesome trip and Ayden Jane was a real trooper.

My Little Monkey

2011-10-10T07:00:00.000-07:00

I have mentioned several times about how much Ayden Jane loves to climb. I think doing this is pretty amazing for any just turned 4 year old let alone one with PWS! She was so excited that she could do the whole thing all by herself, she must have gone through it 20 times in a row. Crazy kid.

Happy 4th Birthday!!

2011-10-04T17:53:00.000-07:00

Well, here is the creation! Definitely a first attempt and not so pretty, but tasted awesome. Gary had a great time pulling it off and Ayden Jane LOVED it! Actually, Mckenna is pretty sold on this version of a birthday cake herself! The fruit is not exactly dipped, it was more drowned, but truth is, AJ only ate a couple and was so into the presents it was not an issue.

Big girl blowing out the candles!

Grandma and Grandpa get big hugs for coming over and bringing presents!

On the big day, we kept things simple. Ayden Jane had been so over the top for several days about her birthday and we had 'celebrated' at school so on the actual day we just did a simple family 'party'. Basically, grandma and grandpa came over and we had 'cake', sang happy birthday and opened presents. It was great.

Ayden Jane loves to answer the question, "how old are you?" And is just overall thrilled to have reached age 4.

Swimming = Sanity

2011-09-30T19:21:00.000-07:00

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

2011-09-30T18:17:00.000-07:00

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!

Sensory Craze

2011-09-27T19:00:00.000-07:00

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.

Thinking

2011-09-24T18:46:00.000-07:00

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.

Friends

2011-09-21T17:09:00.000-07:00

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

2011-09-21T08:02:00.000-07:00

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.

Stuff

2011-09-20T19:01:00.000-07:00

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!

Schedule

2011-09-15T18:04:00.000-07:00

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)

2011-09-15T14:00:00.000-07:00

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.

Jump Highers

2011-09-13T19:27:00.000-07:00

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.

One Small Step

2011-09-12T19:29:00.000-07:00

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)

http://onesmallstep.fpwr.org/dw/users/aydenjane/williamsburg

Growing So Much

2011-09-10T18:28:00.000-07:00

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!

Clemson

2011-09-06T17:58:00.000-07:00

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.

Into EVERYTHING

2011-09-04T20:17:00.000-07:00

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!

Super Hero AJ

2011-09-03T19:12:00.000-07:00

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.

Bee's Three's

2011-08-28T18:49:00.000-07:00

I have been meaning to write about the first week of school. A few things (remodeling, hurricane...) have kept me from being able to focus. I guess it is just hard to explain so every time I started, well, I stared at the computer and then worked on something else.

It starts more with the day before school. It is the first I have seen Ayden Jane get nervous or anxious or whatever. In some ways it was really cute because it was totally in anticipation of something great. Some of the ways it showed up, though, made me a little nuts.

First there was the crying. AJ is not usually a big crier. I think she cried more in 3 days than she did in the first 3 years. It was just evidence that she was emotionally on the edge of the cliff and any little thing could send her hurdling over. Normally when she gets upset enough to cry it is pretty short lived. You guessed it. She managed to cry so long she forgot what she was crying about. It was pretty funny when I asked her, with admittedly a bit of frustration in my voice, why she was crying and she just blurted out, I don't know!

Secondly, she she she she is stuttering bad. It's likely not a true stutter. Often times she will repeat 5 or 6 words in a long thought several times until she can finish it. Here is an example, "after grandma and grandpa come to my house can we go to the beach and to the pool?" That's what she FINALLY says. Usually she will get stuck at a point like this, "after grandma and grandpa go, after grandma and grandpa come, after grandma and grandpa come to my house, we we we , after grandma and grandpa come to my house we can go to the beach and to the pool" Helping only results in starting the process over....

Thirdly, independence rules. I am quite sure that independence is a positive way of looking at the need to control. This becomes evident when she is stressed. Open a door to a store? She will do it. Touch the door and she will close it and start over. She wants to pour the milk, carry EVERYTHING, get in her car seat herself in HER time frame, choose who does things for her she can't like get the bath ready... The list definitely goes on.

Definite temper tantrums. Pretty sure they were more mild than the ones I wanted to have though!

Yes, it carried it's way into school. Absolute melt down because we sent in extra clothes. "I a big girl. I NOT have accidents. I don't need to bring clothes!" Tears, no consoling, completely heart broken that the school could not comprehend she was a big girl... I tried lots of things to help her not take it as a personal attack. All the kids have to, its just a rule, it is in case you spill paint or something on you... Nothing helped. Then I got smart. The extra clothes are in case the clothes you wear get itchy and you need new ones. BINGO. She bought it. Another melt down as she had to hold the teacher's hand coming down the steps. It's a rule. Every kid holds the teachers hand... "but I a big girl. I can do it myself, I won't fall...."

When we asked about school afterwards she just couldn't tell us much. Not a big surprise. I know her receptive skills are in over drive. Each morning though she was soooo excited to go. She was non stop talk and motion in the evenings after school because of all the input she received at school. I don't know what I would have done with her without the pool! Amazing how just swimming it out helped calm everything. Words came better, she could focus for more that 2 seconds, she was just calm. Sort of like the disorganized storm inside had all calmed and she was back in control of her little body. By day 3 things were much improved.

Tomorrow starts a new week and a 5 day one at that. Wish us luck!

Whew!

2011-08-26T18:01:00.001-07:00

You might think I am referring to the passing by of hurricane Irene, but not so much. The hurricane went north of us just dumping us with lots of water and a bit of wind. Thankful to be spared this one. It did make me think about the need for some real emergency plans with Ayden Jane and the need to have supplements, foods she can eat, gh.... Definitely need a really good cooler in case the power goes out!

What really has me happy to sit for a minute, however, is the room painting/rearranging. I absolutely LOVE Ayden Jane's room. She is so happy to have her own (okay, any) room. It was adorable today to watch and listen to her as she happily gathered her belongings from the living room and settled herself in the bedroom. "I love my new room Mom" So sweet.

Kayla and Mckenna now share a room. My mom took us shopping and we found some great bookself/cubby type things at Home Depot. They came with fun colored bins to mix and match. We used those to move Mckenna into Kayla's room. She is mostly settled and it all fits pretty well. Hopefully it will still fit well when Kayla comes home from college!

Noah's room got a good cleaning and a bit of painting. He is still unsure of just what he wants to do in there but I am sure his creative side will come up with something.

Gary and will shortly have a room to ourselves!! Yippee! I still have a lot to do in our room including moving all of Ayden Jane's clothes... into her new room but I can just feel the space about to expand.

The only part I am a bit concerned about is what Ayden Jane will do if she wakes up at night. I think Gary and I will have to sleep with the door open and I definitely need to get a baby gate (that is easier to maneuver than our current one) to put across the hallway. Basically, we have one hallway back to all the bedrooms so I figure as long as we block it off, Ayden Jane will have to get one of us up if she needs anything.

I guess like everything else in PWS, with independence come some dangers. You know like the fact that she already fell from the top bunk in her new room today and climbed the new cubbies and tipped them on herself. Uggg.

School's Back!!

2011-08-24T20:20:00.000-07:00

Ayden Jane returned to school this week. She is in the 3 yr old preschool class at St. Peter's, the same preschool she attended last year. It is a wonderful place and AJ loves it. It has been interesting though...

I think that the newness is just a lot for Ayden Jane to handle. She is doing really well, according to her teacher, and is ridiculously excited to go to school in the mornings. She has been really CRAZY in the evenings this week though. I am thinking there is just so much new input coming at her during the day, she just cannot process it all. Luckily swimming seems to be doing the trick and has really settled her down.

We painted her room today! She is finally getting a bedroom. When we asked her what color she wanted her room to be she answered loud and without hesitation, "purple.... and a lot of colors." So, purple it is and we will look for some wall decals or stencils to add other colors. I am thinking daisies and butterflies... I will post some pictures when we are done.

Endocrinology

2011-08-20T17:11:00.000-07:00

A few days ago Ayden Jane had an appointment with our 'local' endocrinologist Dr. Clark. It is a 2 hour drive so I am not so sure how local she is, but she is definitely worth the trip.

Ayden Jane was a bit grumpy by the time we got to talk to Dr. Clark, but that did not keep her from doing great. She grew a HUGE amount since our last visit in Feb. She measured 41". Her height percentile has gone up to 80th which I would guess places her about where she would be if she were non PWS. The other 3 kids were 85th and above percentile kids. As for weight, she weighed in at 37 1/2 pounds. That places her around the 60th percentile for weight. Her BMI was (15?) and places her around the 45th percentile. I'd say pretty awesome for a kid with PWS!

She asked about her motor skills and it was exciting to be able to say she swims, rides a bike, swings by herself...

Speech is great in the vocabulary portion, but we talked about some of the articulation issues and the occasional stuttering. Things that the impending return to speech will hopefully get back in line.

I described the sensory piece we still definitely see...

We talked fine motor and the challenges ahead with handwriting, cutting...

We talked about whether or not to check IGF 1 levels and decided it was not necessary now, but to call her and let her know when I felt it was time. I usually 'see' the need to bump gh in Ayden Jane when it is time. Dr. Clark explained the importance of bone age. I assumed they checked it to be sure gh is dosed correctly. I asked her about it (it was done in April and AJ's was perfect) and learned that part of the trouble with added weight is that it can cause the bones to age early and therefore close the growth plates sooner. This, of course, results in stopping the growth early.

We talked about the iron and the B12 and the other supplements and what I think I see from them.

She asked why I thought AJ was doing so great. Did I think it was the diet, the supplements, therapies, something else... In the end, I am thinking it is all of the above. There is benefit from each piece that we are doing. Then there is the genetics underlying all of these things. So, I would say that Ayden Jane has a genetic make up that would likely have been very lean and athletic and high metabolism (that is my body type). Add on top of that giving her foods that her body is good at using and the supplement support. Add the iron and B12 to smooth out some of the neurology and she gets pretty close to typical development. The amazing thing to me is how tenuous the balance can be at times. Lack of exercise and she is crazy, the wrong food and she is spacey, lack of supplements and the "PWS pause" comes back and she just cannot think or react quickly.... Stop therapy like speech this summer and we slide backwards. The list goes on.

I have to say, I love how much the current package is helping her but I sure hope that some of the incredible research out there will make it a whole lot easier to maintain that balance and give us a little wiggle room.

Hope in the Little Things

2011-08-14T13:49:00.000-07:00

Hope for the future can be seen in the little things.

This morning Ayden Jane and I went to church. She headed to a preschool class for 3 year olds. As usual, I noted on her name tag, "no goldfish" and found the teacher to show her Ayden Jane's little backpack with snack. They pretty well know the drill, but I always reinforce. Then, toward the end of the service, I was in a hallway (yes, not actually in the service but that's irrelevant, lol.) and could see the playground out the window. Ayden Jane was on the swings with five other 3 and 4 yr. olds. She was swinging away, grinning ear to ear and obviously singing. Most of the other kids needed to be pushed... and AJ was flying high. Then she stopped and went to climb and slide and walk the balance beam. She was so happy and just fit right in with all the other kids. It was the sort of scene a mom of a special needs kid dreams of.

After church we went to Habaneros for lunch. It was Kayla's birthday and we had not planned to celebrate 'til Thursday, but Gary's schedule... Anyway, we got AJ a grilled chicken fajita quesadilla. Basically, a soft, slightly doughy tortilla with grilled chicken, green peppers and onions. There were chips and queso on the table and AJ never once asked for one. Then when her food came I just gave her the plate. Usually AJ shares with us and we give her a plate with bits from everybody. In that case there is nothing she cannot eat on the plate. Ayden Jane opened the quesadilla and began to eat the peppers and things with a fork. She cleared it out and then said, "I all done, I don't eat the bread mom. Wow, my belly is full!"

I think I will have pleasant dreams tonight.

22 Years

2011-08-13T16:35:00.000-07:00

Yep. Yesterday marked our 22nd anniversary. We did not really celebrate, but we will eventually. Just sooooo much going on right now. Gary will work through Monday night then he is off until the following Sunday. During that time we will get Kayla off to college, celebrate her 18th birthday and the 3 other kids will start the new school year. We are 'giving' each other a major spring cleaning, bedroom (at least something in all 4) redoing, closet cleaning out, we have been in one house long enough that we need to throw half of what we own out sort of 2 weeks.

I am so excited. I keep threatening to rent a dumpster and fill it! Don't get me wrong, most of what we own is second hand... so it is not do to over shopping. We have just spent so many years just getting by and collecting, well, things others no longer had use for but we were thankful for. We have been in this house for 15 of those 22 years and I think there are closets I have not seen the back of since we moved in. YIKES!!

Anyway, the cleaning house includes Ayden Jane getting a room of her own. I am not sure if she or I am more excited! Okay, I admit it. I am more excited. She has been sleeping in our room, which is not really a problem, but her toys are EVERYWHERE throughout the house. Ayden Jane is also ready to have a place to play. She disappears into Mckenna's room from time to time now, but I am thinking when it is all hers she will really love it. Mckenna and Kayla will share a room, but with Kayla away at college it shouldn't be too tough on either of them.

So, 22 years of marriage and we have one who has successfully made it to adulthood, one in the throws of teenage years, one preteen and little AJ heading off to 3 year old preschool. Yes, you may laugh now. Looking back, I can remember the days before kids, with our 2 little ones, then as they grew and we added sweet Mckenna. It seems both so long ago and yet just yesterday. Now, with our home full to the brim with entertainment, energy, love... it is hard to imagine life having taken any other path. Here's to a wild ride of the first 22 yrs. Hopefully the next 22+ will be as filled with good times, blessings and laughter. I'm happy to skip the heart ache, but willing to accept it as part of the ride and thrilled to know that our little family will hold tight to God and each other and triumph through it whatever comes our way.

Will Sugar Break Me?

2011-08-12T19:29:00.000-07:00

Ayden Jane has been asking a lot of food questions lately. Not in a hyperphasia sort of way, in a very appropriate sort of way. She is just really curious about why she cannot eat sugar or bread... and some people can. We talk a lot of how we eat food to make us grow strong and healthy, and sugar and bread does not make her grow strong and healthy. So, the other day she asked me, "will sugar break me?"

Hmmm. Tricky question to answer. In a way, those things would 'break' her if given frequently... I, on one hand, don't want to feed into the anxiety that is often part of PWS and have her flip out if she gets a dose of sugar. I also don't want her to have a cookie, not explode and then decide that all she has been told is a lie. It's just not that simple. I have seen the effects carbs from grains and sugar have caused. She becomes slower. Slower thinking, slower moving, just over all slower processing. (of course, she has only had a dose of these on rare occasions). Then that question is followed up by, "will sugar break Mckenna?"

So, what do I say? I told her that those things would not 'break' her, but they would not make her feel good. That she would not be able to run, jump, think or talk as well. That she would not have as much energy. I feel bad, but there is a part of me that hopes she feels awful the first time she sneaks a cookie! We talk about how she eats, including the fact that she has to eat a few bites of something with protein. There are still times that I have to insist she eat! I am glad about them and use them to teach the need to keep our brain and bodies fueled. She gets it. The other day she came and told me, "my belly isn't hungry but my brain needs a snack." We talk about food that will make her brain and body work best.

We also talk about learning to say our words better and getting new 'yellows' (orthotics) for her shoes to help her legs grow strong and make her run fast. I still have not used the term PWS to explain why all these things apply to her, but no one else. For now, she accepts that mom says that's the way she is made. The time is coming but I hope that when it comes, it will just be a name for what she already understands about herself. She is daily understanding that food is for fuel, exercise is necessary for fun and for feeling good, working hard at things means mountains can be climbed, family will be there every step of the way, supplements and shots are just a part of life like brushing your teeth... and a host of others.

Definitely wondering how that conversation will go. I am sure as she grows she will go through times where she accepts PWS and times where she sort of rebels against it. I just don't want her to ever let it define her. She is Ayden Jane, a unique, funny, high spirited little girl. That is what she will always be first. I want PWS to just be a foot note in her life. You know, by the way, she eats a little funny because of this thing called PWS.

Big Changes on the Horizon

2011-08-07T18:56:00.001-07:00

The big change in our household is Kayla heading off to Clemson. She leaves in two weeks and we are all excited for her. It will be interesting to see how Ayden Jane grasps the concept. Kayla has sort of been preparing all of us this summer by staying quite busy and not being home too much. LOL. The last time she came home after spending the night with a friend, Ayden Jane asked her all excited, you come home from Clemson?!

Ayden Jane knows that Kayla is going, but it is hard to grasp the time frame. You know, it's not like she has great calendar skills yet! So today when she was asking Kayla about it again, I told her Kayla would be coming home when Christmas comes. Of course, she will be home before that and I will likely have to explain why it is not Christmas yet, but it was the only way I could think of to get Ayden Jane to think longer term!

For the past 2 years, Kayla has been driving and Kayla and Noah have been sort of taking care of each other. They had their own transportation and each other to go and do with when I have been off to horses or at Mckenna's soccer... It will be great for Noah to be able to have the car and get where he needs to go, but it will be a bit sad that he will not have Kayla to do much of it with. As a parent, it has been a pleasure to watch them grow up together and cheer each other on. They are siblings, so it is not all joy, but they do get along amazingly well. At Kayla's volleyball games, Noah was always her biggest fan. Kayla made sure Noah got out of the house on time for school... They can surf together for hours, literally. Today they were in the ocean from about 8:30 am to 5 pm. The only reason they came out was because they knew they were expected at Grandmas for supper! Their personalities are opposite but they bring out the best in each other.

Big change 2 is that Noah will be getting his license soon. The car will be his and he will have a lot of responsibility on his shoulders. I head out the door in the morning with the little ones to get them to school and he will have to get himself out of bed (and not fall back in after I leave) and get to school. He will will be driving... He will be on his own at times and other times he will need to take charge of Mckenna or AJ or errands. It is Noah that we will be visiting colleges for... He is ready, but it is still a big change.

New teachers and classes for Mckenna and Ayden Jane. The big change for them, however, it that we will be rearranging bedrooms!!! More on that in the coming weeks.

Feet

2011-08-06T19:48:00.000-07:00

So, school is starting soon and that means it may be possible to get a pair of shoes on Ayden Jane. Last years shoes are finally too small. I know, count the blessings of PWS as they come and not going through tons of shoes could be one of them. It is, however, time to get some new shoes to head back to school in. After all, they do require them....

Her old shoes, affectionately known as her 'jump highers', have an orthotic. I am not exactly sure if there is a name for her particular one, but we had Mr. Alan custom make them for her feet. I pulled them out and asked Jen, our PT (life saver), if we were going to continue with them, get new ones or if we might possibly be done with them?

Jen had Ayden Jane stand barefoot (as she always is...) without them and then stand in them. Ayden Jane definitely supinates (sp?) her right foot and pronates her left foot without them. Not horribly, but enough to benefit from some correction. When Jen had her stand in her orthotics, she felt that the supination was corrected well, but the pronation definitely needs more support. Ayden Jane has broken down the old ones in that area...

End result? We have an appointment with Mr. Alan on Tues. to see what he thinks. He may be able to sort of rebuild the old ones, or he may make molds for some brand new ones. Either way, Jen is thinking this will be her last pair! Yay. The really nice thing is that Ayden Jane is only to wear them part of the day so that she can continue to work the intrinsic muscles in her foot. Soooo, wear them to school from 9-12 and then maybe for a bit in the evening. No pressure and naturally an easy balance of shoes and barefoot.

Swimming Fun

2011-08-05T19:07:00.000-07:00

Well, this pretty much sums up half of our summer. The other half has been at the beach! I will do my best to get some video of that as well.

In this clip, Ayden Jane is swimming away from Mckenna who is 'it'. It is AJ's version of sharks and minnows... Ayden Jane is so proud of the fact that she can swim in the 'deep deep' (9 ft.) that I think she wears everyone out swimming back and forth. It is too cute when all the kids are in playing games and she is so sure she is playing too.

Pictures from our Trip - Thanks Kayla

2011-08-03T17:21:00.000-07:00

It was a looong car ride, but Ayden Jane was great.

The back seat got a bit crazy at times:)

But generally found ways to keep entertained.

There was lots of time in Texas to play with big brother Noah.

Yes, Ayden Jane LOVES this and no one can launch her like Noah. (Look close and you can see Mckenna's legs)

Love this picture!

And Noah loves his baby sister

Kayla and Ayden Jane taking their own pictures. So that's how the photographer gets in the picture!

And oh, so much swimming fun thanks to Uncle Ken's hard work on the pool.

What DO you say?

2011-08-02T16:04:00.000-07:00

This has been on my mind for a long time, but I have had a hard time finding words. Well, words that don't sound a bit mean or something. Recent tragedy in the life of good friends just brings it to the point where I just have to try.

Rotten things happen. Sometimes, life sucks. The unthinkable becomes reality from time to time. No one gets a free pass, but in most cases we find ourselves on the end of wanting to help the person in crisis but having no clue what to say or do. I know that's the case for me anyway. I am, quite frankly, not good with words. Well, words, in person, when emotions are involved I am just plain horrible with. I do not have the gift of coming along side and comforting.

When Ayden Jane was born and then even more so when diagnosed, well meaning people shared their sincere words of compassion.... They landed, often, on my heart as well intended but entirely irritating. Sorry, I am not trying to offend, but honestly, if one more person told me that it was because Gary and I were such great parents that God chose us for the responsibility of AJ, it was going to get ugly. Another favorite, we were perfect for her because I was a special needs teacher. Then there is always the, "just be glad it isn't worse."

I could go on, but the point of this is to try to offer insights from someone who has had the unthinkable happen. First of all, in the case of rare genetic disorders or I would presume any illness, take the time to learn. It is such a relief to talk to anyone who has a clue what I am dealing with.

The second biggest thing is that I loved the offers of help. Problem was that most of them came in the form of, "tell me if there is anything I can do." But when I was in crisis, I didn't really even know how to ask. You just get through each day one moment and a time and asking for help requires planning which you just don't have the energy for.

So, hopefully I have not offended anyone of the awesome people that were here to help us. Just wanted folks to know to spare a few the platitudes and allow your friends to feel life stinks. Make your words let them know that you agree life stinks and you will walk the rough road with them, long term. And, probably more near and dear to my heart, be specific in your offers for help. When a friend is in crisis you may be able to see needs that will come better than they. They are in day to day mode. Don't say, "I would be glad to bring a meal sometime, just let me know." Say, "for the next month I will bring you a meal every Wed." Call when on the way to the store and ask if there are a few items you can get for them, then pick up a few extra things just because. Don't tell them to call you if they need someone to watch the kids, tell them that you are free on Thursdays and would love to have little Johnny come swim with you. Tell them Monday is laundry day so you will be by to pick up a few laundry baskets... You get the picture.

PWS Family

2011-07-25T20:11:00.001-07:00

Often times when we are connecting online... the families who are affected by PWS often refer to themselves or are referred to as one big PWS family. There are some definite things that cause us to feel like a family. None of us asked to be a part, just like we are born into our own families, we were born or are related by birth into the PWS family. We are connected, like it or not (and by the way I have to say I have loved getting to know our PWS family!).

Just like family, we are closer to some than others, but we deeply feel the pain each other suffers and we love to rejoice in each others triumphs. It amazes me how hard it is to hear that a little one is struggling with hunger issues, scoliosis, behavioral issues... you name it. Not to offend my friends who have all typical children, but seriously, it is ridiculous how it pains my heart to hear of the struggles our PWS kids. On the flip side, it can make my week to hear about how a little one finally has thrown aside his walker and is daily transforming into a full time, gettin' into everything walker. (Go Dean!)

I find myself a little bit addicted to cheering these kids on, praying for them, doing what we can to raise money for research. I sometimes wish I could just travel around and visit all of them. Since that isn't happening, I will just continue to enjoy pictures, stories and the connection we have walking this crazy journey.

So, to all those of you who are part of this journey because your personal family has been touched by PWS, I will be cheering for you! For all of you who are walking this journey with us simply because Ayden Jane has stolen your heart BLESS YOU. We can use all the help we can get.

According to AJ, All is Good

2011-07-23T17:34:00.000-07:00

So I think I am ready for school to start back. I have thoroughly loved the summer days with no appointed times or schedules... but I am ready for a schedule. Ayden Jane is getting 'antsy' with the same old stuff we do and is getting into everything as a result. She has come out of this last little developmental spurt so funny and full of energy and life. It is wonderful and exhausting!

Today we picked up the house and then went surfing and to the pool. We left about 12:00 for the beach and did not get home until about 3:45. Nearly 4 hours of swimming! Ayden Jane took a little nap with Daddy for about 30 min. and then we went to the mall to do a few things. She was literally running up and down the mall giggling with glee. She never wears out.

At home she is getting more and more independent. Well, if that is possible! She wants to get her own food, wear sweatshirts in 100 degree weather, climb the shelves if the mood strikes. She feeds and waters the dog each day and honestly thinks she is helping when we wash Sadie and give her hair cuts. AJ just has her own opinion about EVERYTHING. And is sure there is nothing she can not do. I know that her spirit and determination are a big part why she is doing so great but at times I just want her to get into the car seat the direct easy way and let me buckle it!

She has been adorable lately, however, with asking about why God made her. She has totally latched on to the fact that she is special and loves to ask what makes her special. Then she goes through our family asking about why they are special and how God makes every body different and special and why.... Then she usually switches gears to why we have a big family and how lucky she is to have a big family and how Daddy loves her and Mommy loves her and Kayla... you get the picture.

I guess I see why she is such a positive, confident little kid! She knows there is nothing she can't do and that she is special and everybody loves her. Wonder if that will stick through her teens.

The After Trip

2011-07-20T19:52:00.000-07:00

Since we returned on a Monday, we managed to get both horseback riding and PT in this week. I figured that would be a good thing after such a long ride. Past trips have made it clear that car seat time is not really Ayden Jane's friend.

So last night we had horses. Ayden Jane was awesome. There is another little boy in the class, J, who Ayden Jane really likes. J is an adorable boy who is a bit older and does some pretty cool things on his horse. AJ sees J doing something, she has to do it! It is good because the things that J is working on are very similar to AJ and he is a bit more capable so AJ really pushes to do what J can do. She worked so hard and was so proud of herself.

Today, came PT. I was expecting that the trip would require at least one PT session to be devoted to 'fixing' the car seat trauma. Instead, Ayden Jane did great! She still attempts to rotate a bit, but she was doing some great work. After some good gross motor work Jen really got down to some fine motor stuff. Basically, strengthening those fingers to get writing. It was very cool. Jen taped her last 3 fingers down so that AJ had to really work the index finger in the position Jen wanted. They did patterns with clothes pins and then Jen transferred it to using a marker. Once she freed the middle finger for a bit of added support, Ayden Jane was doing pretty well with her grip writing. It was some good hope for me as I have seen AJ really shy away from writing.

So, I think the wild spurt has ended (2 weeks once again) and it looks like Ayden Jane is ready to learn volumes. I am not sure what was connecting, but it seems like a very age appropriate developmental leap. Hard to say, but language has improved in her ability to really converse back and forth about a topic. Also, her interest in reading and writing has jumped. She seems to be able to more smoothly connect skills as well, for example, she can steer around anything now when riding her bike and carry on a conversation at the same time. In the past 2 weeks she has improved in her swimming to where she is now swimming across the pool, doing handstands on the bottom like Mckenna and is even trying to do strokes.

We're Back!

2011-07-18T19:53:00.000-07:00

What a great trip. All four kids were awesome. We were packed into our Ford Freestyle which was great, but not really intended for 18 hour trips with a family of 6! Especially when 4 of them are full adult size including two guys that are 6' 3".

The kids were able to spend some time with their grandparents, cousins and aunt and uncles. Also they met Gary's cousins (not sure what relation that is to our kids). They listened to stories of Gary and his family times with cousins... They learned a lot about his family and what a nutty but loving bunch they were/are.

Ayden Jane was so funny the last night as the stories and laughter were going on around the table, she was on the floor playing with her beads. I went and told her it was time to clean up and get ready for bed. She asked if all the stories were done yet. Then told me that she only laughed once but wanted to hear the rest of them. I really was surprised because I didn't know she understood what was really happening. I mean, sure it was a big group of people she hadn't met before talking and laughing. But somehow she knew this was special.

She was so open and talkative with her grandparents. I was a little worried she would play the shy routine and not talk much... She acted like she has been around them her whole life. By the end of the trip Gary's sister Linda (whose house we were staying in, Thanks Linda) noticed Ayden Jane's volume was much louder. Yep, by the end she was quite comfortable.

So here is to a great road family road trip to see family. Not sure we will be able to wrangle all our kids in the car for another family reunion by the time one comes up again, but this trip was a good one.

Speech Therapy and Letters

2011-07-16T09:57:00.000-07:00

We decided at the end of the school year to take the summer off of speech therapy. I was curious how it would go, but confident that we would not lose too much ground even if it proved that the benefits of therapy have been bigger than we thought!

So how has the experiment gone? We can positively say that the speech therapy is a necessary part of Ayden Jane's life. We are lucky in that, for Ayden Jane, ST is for articulation only. I don't believe a break in therapy is possible for those who are dealing with apraxia or other more whole language delays.

Basically, we find that we are asking Ayden Jane to repeat herself more and more these days. That is something that we, as those who spend a lot of time with her, did not have to do last spring. I can't put my finger on what sounds are getting left out or replaced or 'mushy' but I find myself asking her to say it again... and again. Luckily Ayden Jane is not getting frustrated by this and I get a kick out of how, on the second or third 'say it again' she usually get louder. Like she thinks we just can't hear her or something.

Her word order is often strange and she still uses pronouns incorrectly more often that correctly. (or maybe I just notice cause it sounds so cute) For example: Sadie not give me she ball. or Her want me to give she a drink.

The poor articulation does not, however, deter AJ from increasing her vocabulary. She is good at using big words (if you can understand them). Some off the top of my head are: supplements, eventually, frustrated, patiently, annoying, actually, determination.... She is just a parrot and understands words and loves to use them.

Ayden Jane is also getting very interested in letters and books and reading. She is constantly on the look out for the letters in her name. She is good with recognizing them and is interested in how the letters make words. As for writing them? Wow is that an area that we will have to really work on. I will leave that for a future post.

Travel

2011-07-14T16:34:00.000-07:00

Well, I have several posts rolling around in my head, but no time to get the all out. I will start with how travel has been.

We left home EARLY on Tuesday morning. We made it to Atlanta by about noon and hit the water park at Six Flags. Ayden Jane was good but very ready to get out by the time we got there. The big kids took off for the giant slides and there was lots for Ayden Jane sized kids. We found a couple of slides for kids over 36 inches and AJ just knew she was finally a big kid. She was soooo excited! She and I walked the hill and stairs to the top and slid down the slide on our mats over and over. I was getting tired and she was going strong. She had the best time. It was a great day.

We stayed until the park closed at 7 and Ayden Jane managed to hang the whole day and then stayed awake in the car for another hour or so! She is just loving having her whole family together. She kept asking, "is everybody going to Texas? All of us?" Not sure where she thought we might leave somebody, but it has been so cute.

The only draw back to traveling with Ayden Jane has been the fact that she does not watch tv. Yep, 18 hrs in a car and she basically refuses to sleep or watch movies! We have taken turns entertaining her and she has traveled amazingly well. I am sure that there will be some residual effects on her balance... that Jen will have to correct but so far so good!

Have to admit I am not really looking forward to the return trip though.

Surfin'

2011-07-10T18:34:00.000-07:00

Today, I spent at least a solid hour doing this!

It was hilarious as Ayden Jane rode the boogie board in she had a fan club watching her. The first 200 times she jumped up and down with excitement cheering for herself and with her fan club. (the fan club was a group of very nice ladies on vacation and just getting the biggest kick out of AJ) Gary came just at the end when he was placed on call for work so he managed to see the last few and catch this video. Yes, that's me in the water.

Wild Child

2011-07-07T05:26:00.000-07:00

Ayden Jane seems to be on another one of her crazy spurts of... out of control energy and determination that is completely maddening, adorable, fascinating, exhausting, remarkable, frustrating... And entirely exciting because it usually means some new developmental leap is on the other side.

You'd have to look back a good ways to find descriptions of earlier leaps. When she was younger both the tornado behavior and the spurt were even more visible but there were definitely some similarities between those days and the past few.

Let's recap. Tuesday, Jen was even weighting her down with ankle weights to get her to slow down on the moon shoes. (something proprioceptive...) Still she was a bit uncontrollable as she was moving before she was thinking and there was no stopping and redirecting her. Jen had to make some pretty great catches as AJ was going way too fast. We were trying to get her to do some static work. Yea right. It was pretty funny to watch and made me feel a little better that even the baby whisperer was having trouble with her.

Wednesday. I went running in the morning and by the time I returned Gary was done with her! Well, done with the tornado of destruction and the 2 massive wipeouts because she would not slow down. He said, "she tries to do things she can't and goes at it so fast and hard she takes out everything in her path. If she would just slow down and listen..." Yep, apparently he is Marlin too. I took Ayden Jane and Mckenna to the safest place I could think of, Leaps n Bounce. Yep, a padded play land because we both sort of needed a padded room. Mckenna would come to get a drink and AJ was right behind her saying, "come on Mckenna, lets go leaps and bounce..." After a couple of hours of that I thought she might nap in the car on the way to Mckenna's swim team practice. Wrong. When we got home, I traded her off to Gary who took her for a swim. 2 hours later and after she had learned to swim (not pretty, but effectively) across the deep end, they returned.

Thursday has come and gone. We kept busy all day including a swim this afternoon. Still, after nap, we had 2 spills and she was climbing all over me. I took her to the play ground and she did all the climbing she possibly could. Once she was done she came home and played calmly and sweetly with her toys. The need was filled for the moment. It is just so strange to watch and I am so curious what connections are being made in there! Will it be obvious? Will it be physical, speech related, cognitive? Who knows. I guess it is exciting enough to just know that, although her developmental leaps are still not always smooth, they keep happening.

Bedtime Stories

2011-07-03T18:42:00.001-07:00

So every night when it is bedtime, Ayden Jane picks out 2 books. One for me (or Gary) and one for her. I am instructed to read mine first, which means read it to her. Then it is her turn to read to me. I am not sure when this tradition started, but it is very cute. She has a couple of books like Brown Bear, Brown Bear where it works pretty well. Many of the books though, her rendition is fascinating. It is a mix of spot on and no where close.

Tonight, however, well, I'd say, it umm... left me speechless.

The book she 'read' was Shaoey and Dot. It is a story by the Steven Curtis Chapman family in honor of the adoptions of their little girls from China. The story goes that a lady bug finds a noisy bundle and then stays with the little baby at the orphanage until her family adopts her. Okay, so that was the ridiculously short version. As the lady bug watches over Shaoey and sorts out where they are, how they are cared for... this line comes in: "She started to fly, then the little thing cried as if saying, "Please don't go away!" Ayden Jane's version is "please not leave me". Dot (the lady bug) stays with her, of course.

They stay together through baths and feeding and napping and crying... Then the day comes for Shaoey to get a family. The book is a read aloud book and is a long, sweet poem so it is not straight forward. Here is an example right before she 'gets her family':

"But, then, there's a cry that's the saddest of all,

Infact,it's unlike any other,

It comes from a deep, empty place in your heart

That can only be filled by a mother.

"And after today, I will never again

Hear that sad song coming from you,

You're getting adopted, you're getting a mother,

And you're getting a family too!

I have always thought it was cute but was not sure how much Ayden Jane really understood about it.

Then she 'read' it to me. She came to the end and said, "I missed a page. She needs her family." I went backwards page by page for a few pages and she got excited, "there it is. She have a new family. She has a family forever." Next, AJ dropped the book and grabbed my face (to make me look her in the eyes up close) and said, "will you always be with me? please?"

Yes, I squeezed her tight... and assured her that I love her and will always be with her and we will all always be her family. She just astounds me at times. She does a good job of expressing herself and uses a wide variety of vocabulary, but every once in a while there is a glimpse of just how deeply she understands things.

Beach Pictures

2011-06-28T19:35:00.000-07:00

Gary was able to hit the beach with us today. Yep, that meant I could safely take a camera!

These are just a taste of the endless wave jumping Ayden Jane loves. As you can see she has a lot to say to those waves!

And of course, she is not about to hold anyone's hand out in the waves.

Here comes a big one!

Come on waves, where are you?

This is a really off center picture of Mckenna surfing. They were tough to catch today so I will have to get more of her soon.

Gary and Mckenna enjoying the sand and a good chat.

Meanwhile, Ayden Jane has work to do.

Nemo

2011-06-26T19:30:00.000-07:00

So, I believe that I am living my own version of the Disney movie Nemo. Ayden Jane is obviously Nemo. She has a nagging disadvantage, (note to self: find a fun name for PWS, like lucky fin) but a huge heart and an unbelievable amount of determination. Me? I am Marlin. I find myself sounding like him multiple times a day, "You think you can do these things, but you can't Ayden Jane!" I won't, however, pin the roll of Dory on any of my friends.... although I am sure there is a comparison there about being guided by well meaning medical folks that might feel a bit like Dory as they try to piece together this crazy syndrome. I know that I feel at times like they are speaking whale.

Ayden Jane is not touching a boat in the open sea, but she is interested in touching a moving vehicle in a parking lot. I don't have to cross an ocean (although somedays it seems like I am) to save her, but she can be a full time job.

The courage and determination in the kid are astounding. Nemo is also an appropriate name as the crowning accomplishment so far this summer is that she has learned to swim. She has been working hard at it and if you have followed at all you know that she has plunged fearlessly ahead. The breakthrough has come! Tonight, she swam toward me and when she stopped to take a breath she managed to get going again. She was so excited she sputtered, "i taked a breath and keep on swimming." Sure enough she was able to repeat it and I would now call her a swimmer.

Go Nemo Go! As for my part? I will do my best not to sound like Marlin. Can't promise I won't be thinking like him though.

I Do It Myself (and I mean everything)

2011-06-26T08:35:00.000-07:00

So lately, Ayden Jane has been trying my patience. I mean more than usual! She so ridiculously independent it is enough to drive us both crazy. Mix a bit of I have to have things done my way, in my order... and AAAHHHH.

Let's start with getting in the car. She has to go to the opposite side, open the door herself and climb across the seat. Of course, we have to check out every scrap of everything we can find as we cross the seat and discuss it in detail. Once her little bottom has finally hit the car seat she will panic if you touch the straps first. She wants to strap herself. 20 min. later you are on your way.

How about lunch time. She will make great choices, but insists she get them out of the refrigerator, she will choose which spoon... All the while major spills are narrowly averted...

Clothes? Hard enough to get her to wear any, but don't even think about picking them out for her. The only thing you will assure when suggesting an article of clothing, is that particular item will not go on her body today!

At the playground she wants to climb the highest slide, monkey bar... and wants you a 1/2 mile away to prove to you that she does not need any help. Pool? Her greatest delight is when she swims away from you.

She will push herself to do anything that big kids do. It is a part of her that helps her overcome so much and I am thankful for that, but it would be nice to just take a breath and relax for 2 seconds.

I know, I know, she is 3. Either just being younger with my others at age 3 made it easier, or Ayden Jane is just the most strong willed of the 4. Whichever the case may be, it is exhausting!

HOW DO I KNOW?

2011-06-24T07:45:00.000-07:00

It is well known that food, to some extent at least, rules the lives and homes of those with PWS. Now, life for us has been pretty easy in terms of food, but I am frustrated this summer. Ayden Jane is great about what she eats. She does not question that she does not eat foods with sugar in them like candy or cookies... and she knows she does not eat bread or goldfish... She is great about it.

What I have been running into is that she has been telling me a lot lately that she is hungry. She loves fruit and with all the fresh fruit in season we have lots of it in the house. Now if my other kids wanted to eat 15 servings of fruit a day I would consider it a miracle and tell them to go for it. Not so much for Ayden Jane. She also wants nuts and other things she knows are on her list of foods that are good for her.

Here is where I am stuck. We have been doing lots of swimming ect. and maybe she is truly just burning off so many calories that she needs the extra food. But maybe it is the beginning of her belly playing tricks on her and just telling her she is hungry when she does not need any more calories to burn. HOW DO I KNOW? We have had a few pretty big melt downs over food. Is it PWS or is it a hungry kid? HOW DO I KNOW? It is heart breaking to think that she feels hungry and I have to say no in order to keep her safe and healthy. It is just cruel, though, to think she is hungry because I am not meeting her nutritional needs. HOW DO I KNOW?

Ramblings

2011-06-22T16:20:00.000-07:00

First off, the big bloated belly has resolved. It did so over a couple of days where all Ayden Jane wanted to do was drink and she pottied more in 48 hrs. than she does in a normal week! I have no idea why it came or why it went. I guess I will leave it as an unsolved PWS mystery for now and worry about it if it continues to randomly occur.

Next up, PT today. Jen is happy with how back to symmetrical Ayden Jane is but she definitely has some work to do on the hanging belly. Ayden Jane hangs her belly on the ligaments in the front and has managed to stretch them out pretty well. She has enough trouble with this problem and then went through the massive belly thing and wow. It is always fascinating to watch Jen work with her on this stuff. She started by having her stand with her heels up on a notebook. (elevated her heels). At first AJ could not even balance properly, but once she figured it out, she was standing beautifully with her back straight instead of swayed. It is another way to approach getting her to stop locking/hyper-extending her knees. They they moved on to lots of belly work and Ayden Jane looked much better. I am guessing that new orthotics in the fall when we go back to school (and actually wear shoes) will be necessary.

On other fronts, Ayden Jane's swimming is getting amazing. Today for the first time she was jumping in the water (slightly over her head) and coordinated getting a breath. She has jumped in the past but just held her breath the whole time and could not figure out how to breath when she came up. I am really hoping this will translate into being able to take a breath while swimming. (Hoping to get some help getting pictures soon!!)

Speech. This summer is our first ever break in ST since Ayden Jane started at 15 months. Last fall we transitioned to the school district for speech and Ayden Jane was doing great. We talked about whether to continue services over the summer and we agreed that we should take the summer off. Now, I don't know that taking a summer off of speech is an option for a lot of families because the speech is working on language/communication skills like vocabulary and expression. For Ayden Jane speech is just for articulation. I was really wondering myself how she would do without it. Let's just say, we (the family and extended family) all agree that AJ has lost some articulation skills. It is not horrible and I am not ready to call Mrs. R, but I will be glad to get her started again. I think AJ will be glad to get things going again so she doesn't have to repeat things so many times! I am sure she will quickly get back on track so I am not really worried, but I can say I am glad to know that it is a totally worthwhile hour a week!

Getting Away and Coming Back

2011-06-19T19:28:00.000-07:00

First the getting away. I have had very little opportunity to go... anywhere without Ayden Jane in the past 3 1/2 years. Now, I am not really complaining, just stating the facts. AJ is quite portable and she has traveled lots of places to see ball games ect. She loves to go, so whether it is shopping or swimming or errands, she is up for a trip. Handing over the reins to all things AJ is never an easy thing for several reasons. This trip, Gary was able to get off work and Kayla and I headed to Clemson for new student orientation. It is always interesting to get some perspective when away and then return. I say interesting because it is both good and bad.

First of all a shout out to Clemson. Kayla had decided in April or May that was where she was headed, but I still had not seen the school. It was a great trip and I was really impressed with the school. The orientation was smooth, the campus was great and I think I am ready to go back in time and 'do college' all over again. Seriously, it was just a great experience to see all the opportunities that Kayla will be able to take advantage of. I know I am supposed to be heart broken that she is leaving us, but I am really just so excited for her to start her next chapter it is hard for me to feel bad for me. Sure, I will be anxiously awaiting her return home for a visit and tell us about her grand adventures... but she is going to be so happy there, how could I not be happy for her. She will be missed, but she will always be such a part of our lives...

I was surprised that I actually missed AJ during the 2 days. I guess when someone is with you 24/7 it is not surprising that you miss them when you are away. Mckenna and Ayden Jane had such a great time with their Dad though. He treated the couple of days like a mini vacation.

Since I have been back, I can see that Ayden Jane is definitely dealing with the belly bloat. I have not done much to ease the problem yet. I am guessing that dairy is the likely cause. I think maybe she had a bit too much yogurt and cheese with Daddy in charge. We will see how the next couple of days go.

It has made me stress over Ayden Jane's eating. Then I just get mad that I have to stress over Ayden Jane's eating. Then I head down the road, mentally, of all the things that may cause Ayden Jane's life to be a challenge. Okay, just plain hard. The anger that she has to live with this thing, the guilt and frustration that I cannot take this burden from her, the stress of feeling like every meal, every min. of the day will make or break her future. (yes, I know that it is completely irrational!)

I know that things have gone all to well for us. I am thrilled that this is the case, but it does not erase the pressures and worry of raising a special needs child. Just sort of makes you roll along almost believing that she is not a special needs child and then you get hit all over again with the emotions of learning that she is, indeed, a unique gift to be handled with special care.

Okay, tomorrow I will start to address the belly bloat from a dietary stand point and see what I can do. Guess it is time for a quick weight and height check too just to make sure things aren't more in the other sort of big belly direction.

Epic Fail

2011-06-14T09:30:00.000-07:00

That would be how Mckenna would describe Ayden Jane's attempt at swimming lessons. If you've followed along this summer you know Mckenna swims on the swim team. Ayden Jane and I watch most days for the hour she is swimming and we were going to have Coach Fabio take a look at what Ayden Jane's got so we could see about helping her be a bit safer in the water. (okay, so help ME) Yesterday, he had a break at practice and invited AJ to come in with him. She was hesitant but went with him. Ayden Jane completely shut down and even freaked out a bit. If you had never seen her in the water before you would think that it was her first time!

I asked her afterwards what her trouble was. She said the pool is a little bit loud and scary. I guess it being an indoor pool with lots of kids swimming.... She has a point. Anyway, she proceeded today to swim really well in our pool and seems no worse for the wear. Although, I think Coach Fabio is convinced she was scared by him.

Plan B is to go swimming with Jen and her crazy crew. Jen, as well as being a competitive gymnast, taught a bit of swimming in her day. I think between the 2 of us we can get Ayden Jane to take that breath and then there will be no stopping her.

Looking Forward

2011-06-12T20:40:00.000-07:00

One of the joys of parenthood is looking forward toward what type of person your child will grow into. Will they be driven to run things, will they be more servant oriented, will they be academic or more of a hands on kid... Yes, it is somewhat the question of what will they do, but beyond that. I truly enjoy thinking about the possibilities my kids have before them and the potential within them. The picture changes and either broadens or narrows as the child grows. No pressure to make them into your picture, more in a trying to figure out the picture as small pieces are revealed.

I guess Kayla going off to college next fall just kicks this sort of mind wandering off. It is pure joy with her because she knows generally what direction she is going and has all the discipline and skills to get herself there. With Noah, a rising junior it is fun in sort of the opposite way. It is so wide open because he just doesn't really know what he wants. Mckenna? We all love to think about what she may do in like. She is dripping with brains, beauty and creativity. Whatever she decides on she will most definitely succeed.

When it comes to Ayden Jane it is a strange little game. Obviously she is too young for us to really have any idea what her long term interests will be. But for me to try to picture her just after high school.... College? A job? Will this nasty Prader Willi Syndrome take her joy? Her zest for life? I guess it is just that constant collision of what AJ's life is supposed to be like and what our actual experience is. Some days I can picture her being able to handle PWS well enough to just take it in stride, go off to college and have a great future. Other days I worry about being able to care for AJ when she is older and we are OLD. I think I most worry about her finding her purpose here and happiness. Which really go hand in hand if you think about it.

Yucky Posture

2011-06-09T19:11:00.000-07:00

Well, we had PT today. Last week Jen was noticing the wierd posture Ayden Jane has started. In fact, her response when looking at Ayden Jane was, "UGGG." I will try to describe what AJ is doing but I am not promising anything.

Ayden Jane is shifting her weight to her right side, locking/hyper extending her knee and rotating her body so that her left shoulder back behind her a bit. Jen took stickers and put them on each shoulder. Then we had AJ stand and look in the mirror and told her she needed to be able to see both stickers. Ayden Jane could not see the left one and really had no awareness as to how to make it come forward. We worked on it for a bit last week but did not get far. That was the day that Ayden Jane was starting to feel really puny...

Now to this week. I was sort of hoping that her not feeling well was contributing... but alas, she still does not look good. Jen tried to get to the root from a couple of different angles. Basically, Ayden Jane is just REALLY good at compensating for muscles she does not particularly like. We spent a lot of time with our feet on a line pointing straight ahead and throwing and catching a ball a bit to our right. Jen did several things to get at the root of why she is doing this and I am not sure she knows yet, but what was interesting is that Ayden Jane seemed to be much better after some good stretching on the left side. I am guessing that the tightening of the left side is not the cause, but more from a bad habit that is in turn making the bad habit harder to break...

Anyway, this week we are handing things to Ayden Jane to her right, throwing balls to her right, coming up behind her and getting her to turn her head over her right shoulder to look, swinging a bat to improve rotational control and stretching the left side a bit. Also, sitting criss cross apple sauce to stretch the outside of the right leg that wants to internally rotate which is likely the start to the whole body rotation. YUCK.

I am so glad we have Jen. She knows Ayden Jane so well and does such a great job of noticing the crazy little things that seem to come with growth in Ayden Jane. It amazes me how Ayden Jane can do so much, climb so well, swim so well... and yet anything that requires static posture she is lousy at! That seems to be where the low tone really shows up. I guess I need to find some yoga for kids around here. Hope we get this straight soon so we can get on with teaching some new skills!

Swimming Like a Big Kid and Kites

2011-06-08T18:06:00.000-07:00

So today after Mckenna's swim team practice I spoke to her coach for a minute. He is a bit hard to have a poolside conversation with because he has a Portuguese accent and the pool area is noisy... but I was trying to ask him what he might be able to do with Ayden Jane. Basically, she is on a mission to swim out to the middle of the pool with no plan on how she can possibly return to solid ground. She also likes to swim to the bottom of the 3 1/2 feet and wait to see how long it will take me to get her... You get the picture. I just don't think that putting her in swim lessons for a 3 yr old is going to help much. I also don't think she will be able to listen well enough or have the motor control to put her in with older kids. I don't know if you can actually teach a 3 year old to swim 'like a big kid'. That is what I was trying to ask him. Anyway, he suggested that I put AJ in a swim suit and then after practice next week he will take a look at what she can do and what he might be able to teach her.

Ayden Jane was really cute when coach Fabio was trying to talk to her. She just looked at him and then just as we were done and he was starting to turn and walk off, she looked at me, grinned and said, "he gonna teach me to swim like a big kid?" I sure hope she is capable! It would definitely reduce the stress of pool time this summer.

This evening Gary was put on call so we decided to head out to the beach for a nice evening swim. The ocean was rough and the breeze was chilly so Ayden Jane was finished swimming before Mckenna. Gary stayed in the water and helped Mckenna surf and AJ and I watched a couple girls fly kites. Ayden Jane was fascinated with them. She just watched (and asked questions) and enjoyed. Yes, Gary promised her he would take her to buy a kite tomorrow. How can you say no to that sweet little voice. She was telling him all about them and asked with lots of pleases.

Summer Fun

2011-06-06T17:28:00.000-07:00

It has been 5 days on the antibiotics and Ayden Jane is still very junky. We went to the beach for the past couple of days to do a sort of natural saline therapy. It has helped, but there seems to still be so much in there. I think if she is not cleared up by the end of the week I will have to take her back in.

As for the beach, Ayden Jane LOVES it. We were there yesterday and she was having so much fun. She asked me if we can go surfin', every day, forever! There are no words for how happy I am that she is a beach bum through and through!! Mckenna is 10 and now loves to surf so she loves the beach and to have them both happy at the same place is awesome, but to have them both happy at the same place and that place be just a mile down the road and my favorite place.... what more could I ask for! (Okay, so maybe to be able to actually read a book there once in a while would be nice but I'll take what I can get!)

Ayden Jane has started to 'surf'. Actually she is riding a boogie board, but she thinks she is surfin' so I go with it. I help her get up on her belly on the board and balanced. Then give her a push into the wave and she rides it in! Well, usually. She has taken her share of spills, but she comes up happy every time. It is adorable and exhausting on both of us. She also loves to just go out waist or so deep (on her) and jump the waves. She tends drift out to chest depth, but a good size wave sends her back. She will allow me to stand close by, but does not want me to touch her! I figure it has to be some sort of therapy because it is hard work out there.

I do need to get my act together and start to really work some fine motor skills. Ayden Jane's attention span for sitting still and working those things is not good. She will always start things like coloring or cutting with enthusiasm, but gets frustrated very quickly and wants to move on in no time. It is strange to me. She will work soooo hard and soooo long on gross motor skills but just does not like to work the fine stuff. I am hoping to get into a bit of a routine where we can get the wiggles out with swimming.... and then sit down and really get some quality time on the fine motor. We shall see.

Pneumonia

2011-06-04T06:27:00.000-07:00

Ayden Jane has been remarkably healthy through her first 3 1/2 years. No ear infections and only a few nasty colds. She even made it through the first year of preschool! Well, it seems her downfall has come in the form of inhaling water! She loves to swim and her favorite game lately is to swim away from me and have me chase and catch her. Only problem is that she is not a good enough swimmer to laugh and swim at the same time.

Now for the bad parenting part of the story. This happened on Monday afternoon. I thought something was odd the one time she came up... but she was undeterred so I just left it alone. She was coughing some that night and into the next day Tue. but was acting as normal as ever and I just figured she needed a break in the swimming. Wed. came and by afternoon, during PT we started to realize something was not quite right. We finished PT, put AJ down for a nap and then I took her to Jen's house so she could play with the kids during Kayla's graduation. When I picked her up she was running a fever and sounded AWFUL. Jen was worried too, so I promised to take her in the next morning. As for that night? AJ came with me to Kayla's graduation party. She fell asleep on the chaise by the pool. It is rough being a 4th child, but I just really wanted to be at the party!

Sure enough the next morning the doc heard something he was not happy with in the right mid lobe so on the antibiotics we are, but the x-rays looked okay. That was 2 days ago. Ayden Jane is feeling much better in that her energy and personality are coming back to normal, but she has sooooo much junk in her it is amazing. The cough is horrendous and her ribs HAVE to be sore. Hope she clears all this stuff soon!

In other news, IT IS SUMMER!!! All the kids are out of school!

In PT on Wed. Jen was NOT happy with a weird posture thing that AJ is doing. I doubt it is related to the pneumonia, but I guess I can hope. She is rotating so that all her weight is on one hip (the right one). She ended up taping one leg, but with everything else going on I think we will have to get to the bottom of it next week. Crazy tone. It still just does not like to stay on and it seems AJ devises ways to allow as much tone as possible to be turned off when she is static. Especially during growth spurts... Glad I have Jen to keep her evened out!

Food and Singing and Swimming

2011-05-31T20:32:00.000-07:00

Things have been a little crazy around here lately. Okay, crazier than usual. Most of that is not related to Ayden Jane, but I will do my best to throw out a few AJ stories from the past week.

First up? Last Sunday we were at church. Ayden Jane leaves for children's church and the nice lady who was escorting and teaching the program does not know Ayden Jane. AJ takes 'guatemala', her little back pack Kayla bought for her on one of her mission trips there, with her snack in it. I told the woman that Ayden Jane could not eat whatever snack they were having and to just let her have the almonds in her back pack. I totally forgot to mention drinks. I returned to discover that the kids had been given lemonade to drink with their snack. AAAAAHHHHH!!!! I asked the woman about Ayden Jane and she told me that, "Ayden Jane said she could not have lemonade because it has sugar in it. She had water." Holy Cow!!!! I was so proud of my little one. What 3 yr. old on the planet turns down lemonade and asks for water?

Next, singing. Ayden Jane has been really into singing lately. She is actually pretty good for a 3 year old, but even if she wasn't it is ridiculously cute to listen to little ones sing. Today's song was her own version of a classic. Yippidee doo da, Yippidee A, my oh my what a beautiful day. Plenty of sunshine gettin' in my way.... I guess it actually makes pretty good sense when the heat index is 105 outside!

Lastly, we have spent most of the past 2 days in water. It is both wonderful and exhausting! In the ocean, she took her maiden voyage into boogie boarding. It was awesome!! I helped her get on her belly on the board and once she was comfortable with the balance I pushed her into the wave. Yes, I dove after her, I am not entirely crazy. She loved it!!! She managed to stay on and ride the wave in. She was hooked! At the pool she attempts to spend as much time under water as on top. She will jump in a swim to me, let go of the pool noodle and swim to me, leave the steps and .... The only problem is that she thinks it is even more fun to do these things when I am not looking!! She was even on the steps the other day and asked me to go get her pool noodle floating out in the water. No sooner did I go one way to get it she took off swimming in another direction! Problem is she can only swim as far as one breath can take her!!

End of School Wrap Up

2011-05-29T09:14:00.000-07:00

It is the end of yet another school year. With one graduating from HS this year, there have been a lot of school years ending!

Kayla is 17 and graduating on Wed. She is amazing. She has worked hard in school and is more than prepared for college. She has managed to pull in enough academic scholarship money to be able to attend Clemson this fall with no loans. Now that is an accomplishment! I have to say that it has been a lesson for me as well. She continued to do daily what she could, both academically and in service to a local after school program. She knows that we have made choices that have kept me home and Gary and I unable to provide much of a college fund. God has blessed her. Here is the evidence. (I consider it evidence rather than coincidence) I looked on line to get the estimated price tag on the year at Clemson and see where we stood with what she had in scholarship and gift from family. Total online estimated? 20,200 Total it looks like she will receive? 20,200! Now I realize that there will be added expenses... but how cool is that!

Noah recently turned 16 and is completing his sophomore year in HS. It has been one of those years that has combined the good the bad and the ugly. You know, a teenage year. He is a great kid with a tremendous future wide open for him. He has a passion for life and I cannot wait to see where he goes in life. He is not sure (ie. has no clue) what he wants to do long term, but is pretty sure he wants a soccer ball at his feet for as long as possible.

Mckenna just turned 10 and is finishing up 4th grade. She has had a GREAT year. She loved her teacher, had a good class and has all around enjoyed this year. Well, with the exception of having to get up early every day... She has developed a love of writing and is discovering her more creative side. Mckenna is a great combination of Kayla and Noah.

Ayden Jane has completed the 2's class. I have pretty well covered that, but I had to include the picture below. Mckenna took it at the end of year program for the school. That's our girl!

Summer's a Comin'

2011-05-22T17:35:00.000-07:00

Yesterday we started the day slow. It was supposed to be a clean/play around the house sort of lazy day. Then I got a call from a friend who was looking for someone to join her and her kids at the beach. It didn't take much convincing! We were sunscreamed (sunscreened) and at the beach between 10:30 and 11. I figured we would play for an hour or two and then go home to rest because Ayden Jane had a birthday party to go to at 3. Well, we left the beach about 2. I figured we could go late or skip the party... We came home and had bit to eat and Ayden Jane was ready to hit the party. Okay, I figured we'd go, and just stay a few minutes 'til AJ started to melt down. We left the party at 5:30!! And that was under protest!!

After we came home we had some supper and went for a walk. I put her bike in the wagon to walk down to the 'smooth road'. AJ pulled the wagon most of the way, rode her bike a good amount (3/4 of a mile?) and then sprinted down the road so far I had to send Mckenna after her on her roller blades! She did not finally give in to sleep until 9 pm. I love it that she has so much energy, but it is going to be one long summer if I have to provide that much activity every day!!!

I have to say, the birthday party was interesting for me. A couple of HUGE accomplishments. First of all, I had some great conversations with the other mom's. I know a few and have chatted PWS with them early in the year. I was nervous then and had no idea if the way I planned to handle snacks, parties, friendships, school, even life for AJ at that point was going to work. I had the chance to talk to several mom's who were previously unaware of Ayden Jane's diagnosis. They had heard their children talk about AJ, had seen her in class... and had NO idea there was anything different about her. Now that is a compliment! They had heard of 'allergies' that AJ has or something like that so I filled them in. I have to say they are amazing! It is not really grand conversation to listen to me drone on about PWS but they were so genuinely interested in her. It strikes me how different it is now to talk of PWS. I used to feel the need to tell people to keep AJ safe or something like that. I guess out of my own fears. It almost panicked me in the past if people felt she did not seem any different because I just knew (or so I felt) that one wrong move from a well meaning but unknowing adult would somehow make her explode or ruin all we had worked so hard for. Sounds silly now, but I imagine some of you know exactly the feeling I had. Yesterday, it was different. I had no panic, no desperation. Just great conversation.

The second amazing thing at the party was AJ. She had to be exhausted, but she did not melt down at all. She was not terribly interested in jumping in the baby pools... but, of course, had been at the beach for hours before hand. She got on the swings and pumped her little heart out though. The amazing part comes in the food category. There were a couple of tables of food, none of which Ayden Jane could eat. Just as you would expect at a kids birthday party, all crackers, chips, gold fish... and 2 birthday cakes. Ayden Jane did not even look twice at the table. She came and asked me for nuts, she knows I always have something for her, and I gave her a little bowl of pistachios I had in the back pack. She climbed up in a chair and ate them while everyone else had cake, ice cream and ice cream cones. She was thrilled with a bit of diet coke and then went and played some more. More than I could have ever dreamed!!

Now for a few funny AJ stories. She loves the flowers we planted. She has been soooo patient waiting for them to grow. She went out front the other day and a minute or two later I went out to check on her. She was sitting next to the flower sprouts. I asked her what she was doing and she told me, "I just watching my flowers grow. It a little frustrating."

Today, I had quite the argument with AJ. She was again, out front playing with Sadie, watering her flowers.... Next thing I know she comes in and is getting Mckenna to take off her shirt. I was not really paying attention and just sort of assumed that she had gotten wet watering the flowers. I then 'tuned in' and realized that AJ had no pants on! I asked her where they were and she told me they were in the front yard. When I went out, sure enough, not outside by the house, but way out in the front yard were her shoes, pants and underwear. I told her she could not go outside with no clothes on. She informed me that she wanted to jump in the sprinkler and did not want her clothes to get wet. I told her she could play in her 'big girls' and shirt or her bathing suit but she had to have something on. She protested greatly that she did not want to get those things wet because they did not feel good wet. She just wanted to go nakey! I knew better than to cave on this one or we would be spending the entire summer that way! It would get a little embarrassing at church and the grocery store...

Catching Up

2011-05-20T18:30:00.000-07:00

Hang with me on this post. I have had about 100 things go through my head lately that I wanted to write about and I have no idea what order they will come out in!

Here is a cute one to start with. The last day of school for AJ a friend in her class gave all the kids a gift. It was a simple plastic cup with a piece of chalk, a little toy and a blow pop in it. I just happened to be there a bit early so I was there when she discovered it above her hook. She took one look into the cup and said, "look Mom I got a toy for me and candy for Mckenna! Can I give it to her when we get home?" I could have cried to see that she genuinely never even considered that she might eat the candy and that she was genuinely so happy for Mckenna.

Next up, still about food. Guess there is no escaping that... So, if you have followed for a while, you know that AJ does not eat grains or sugar. We do not, however, require the other 3 kids to follow that rule. Now, I am not saying that they sit around and flaunt a cookie or cupcake in front of her or anything, but they don't hide out in the other room either. It has happened over time, not planned, just happened, that I am sort of AJ's ally. I didn't even realize it was happening and then at dinner the other night I heard it straight from Ayden Jane. "Noah, you eatin' bread with supper? Momma and I don't eat bread." And another time when one of them had some candy, "Is that candy? Momma and I don't eat candy." Hmmmm. It does make sense that she is comfortable with an ally at her side. For the record, I do not stick to those rules after AJ's bed time, but I am happy to eat like AJ and be her ally when she is around.

Carnitine. I am happy with the increase so far. Ayden Jane has had a nasty cold so it has been a bit difficult to judge things like sleeping well through the night... but I know that she has been mentally quicker. Jen even noticed it right off when she came Wed. Her body does not yet respond fast enough to her quicker brain so she has trouble with running into things a bit and no patience for slowing down and improving quality of movement. I don't think that is necessarily a bad thing, just a temporary side effect that she will overcome. For example, after swimming tonight she sat quietly worked a fine motor activity independently she has never been able to do well with help. It just took a lot of energy release and deep sensory input to prep her.

I will try to do better, but with Kayla graduating and Mckenna's birthday on the horizon it will be a challenge.

Trike-A-Thon!!

2011-05-16T05:46:00.000-07:00

Such a great day. I love our preschool for so many things. This is just one of the things that shows their heart. They do a trike-a-thon for St. Jude's Research Hospital. They make a big day of it for the kids, setting up a track to ride around, the fire trucks come a spray them, the coast guard brought a boat, police help direct 'bike traffic' and cheer the kids on, face painting... it was a great day. Here are the pictures!

At the start! Ready set RIDE!

Rounding the turn...

Kayla at her side, she can keep going!

So proud of herself.

Well done Ayden Jane!!

Hanging out after the hard work was done.

Just for fun.