Saturday, December 31, 2011

Happy New Year!

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!

Thursday, December 29, 2011

Tuesday, December 27, 2011


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.

Sunday, December 25, 2011

Christmas Eve

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?

Wednesday, December 21, 2011


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.

Monday, December 19, 2011

Christmas Vacation

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...


Saturday, December 17, 2011

Kayla's Home!!!

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

It doesn't get any better...

Friday, December 16, 2011

Carnitine Craziness

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.

Monday, December 12, 2011

Lab Results

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!

Wednesday, December 7, 2011

Ginger Bread House

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...

Saturday, December 3, 2011


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...

Thursday, December 1, 2011

What Did You Say?

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.

Monday, November 28, 2011


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!!???

Sunday, November 27, 2011

Fingers Crossed

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.

Friday, November 25, 2011


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.

Sunday, November 20, 2011

Noah the Great

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.

Saturday, November 19, 2011

I Like This Kid!

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.

Wednesday, November 16, 2011


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.

Sunday, November 13, 2011


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.

Sunday, November 6, 2011

What if I Don't Want To

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, November 5, 2011


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!

Friday, November 4, 2011

Small Acts of Kindness

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.

Thursday, November 3, 2011

Phone Talk

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.

Wednesday, November 2, 2011

Happy Halloween

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.

Sunday, October 30, 2011


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.

Friday, October 28, 2011

I Like This Kid

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.

Saturday, October 22, 2011

Busy Kid

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, October 19, 2011


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!

Sunday, October 16, 2011


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.

Friday, October 14, 2011

What a Week

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.

Wednesday, October 12, 2011


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.

Monday, October 10, 2011

My Little Monkey

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.

Tuesday, October 4, 2011

Happy 4th Birthday!!

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.

Friday, September 30, 2011

Swimming = Sanity

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

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

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

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

Happy Birthday Eve

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

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

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

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

Tuesday, September 27, 2011

Sensory Craze

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

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

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

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

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

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

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

Saturday, September 24, 2011


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

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

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

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

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

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

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

Wednesday, September 21, 2011


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

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

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

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


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

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

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

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

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

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

Tuesday, September 20, 2011


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

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

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

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

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

Thursday, September 15, 2011


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

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

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

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

Thursday: school, Mckenna and friend, Soccer field

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

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

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

Jump Highers (continued)

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

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

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

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

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

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

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

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

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

Tuesday, September 13, 2011

Jump Highers

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

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

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

Monday, September 12, 2011

One Small Step

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

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

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

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

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

Saturday, September 10, 2011

Growing So Much

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

Tuesday, September 6, 2011


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

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

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

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

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

Sunday, September 4, 2011


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

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

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

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

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

Saturday, September 3, 2011

Super Hero AJ

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

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

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

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

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

Sunday, August 28, 2011

Bee's Three's

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!