Preschool

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

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

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

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

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

Fingers Crossed

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

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

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

Thanksgiving

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

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

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

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

Noah the Great

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

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

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

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

I Like This Kid!

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

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

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

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

Trouble

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

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

'di'

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.