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.