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.

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

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

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

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

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

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

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

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

Small Acts of Kindness

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

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

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

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

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

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

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

Phone Talk

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

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

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

Happy Halloween

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.