Thursday, December 30, 2010

She's Back

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

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

Wednesday, December 29, 2010


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

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

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

Monday, December 27, 2010


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

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

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

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

Saturday, December 25, 2010

Red Dye?

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

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

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

Thursday, December 23, 2010

James Island Festival of Lights

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

(Mckenna is in yellow)

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

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

Sunday, December 19, 2010

Christmas Break, just the beginning

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

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

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

Mckenna is so excited about Christmas it is awesome.

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

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

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

Tuesday, December 14, 2010

HOT, don't touch

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

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

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

Monday, December 13, 2010

Hustle and Bustle

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

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

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

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

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

Just cute.

The reindeer in the adirondack chair just cracked me up.

Wednesday, December 8, 2010

Frigid Temps. and the NEED to get OUT

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

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

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

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

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

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

Tuesday, December 7, 2010

Humor and Imagination

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

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

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

Sunday, December 5, 2010

Raising Teenagers

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

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

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

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

Friday, December 3, 2010

School Happenings and Aching Legs

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

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

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

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

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

Wednesday, December 1, 2010


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

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

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

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