Saturday, July 22, 2017

B12 Continued

So, Ayden Jane had the b12 shot a week ago. this week was a busy one and she handled it beautifully. She continued to sleep later in the morning which was nice. She had art camp in the mornings from 9-12 each day and enjoyed that. We finished out her last couple swim team practices of the year on Monday and Wednesday and she went to a wild and wacky evening program at a local church from 6-8:30.

A couple of the nights she was wound up from the fun and just kept on going until after 10. I sure wish we had received the shot before we went to camp a couple weeks ago. She was just happy and easy about everything.

Mckenna noted how happy Ayden Jane seemed. Ayden Jane told me she can sit and rest quietly without falling asleep. I think the hand rubbing thing and constant talking were often to keep her awake and alert.

I am frustrated with myself for waiting so long to try it. I mean, we did/do so many things to give Ayden Jane's little body the best amount of energy it can summon. Over the years the little boosts from all the different things added up to keep her running well. A simple once a month shot would have been nothing to add to the craziness. Lab values don't show a need and she still had a big response to it. Weird.

It is all a good reminder that I want to continue to look for things to power Ayden Jane. That 'doing well' is awesome, but it doesn't mean we stop the pursuit of doing her best. So many little things will change in this process of Pitolisant and growth and learning. She has come so far and we discover new surprises every week.

Soon we go on an actual family vacation. My big kids have made it clear that we have deprived them of such their entire lives. Mind you, we live at the beach and they have had a pretty great life. So here's to Busch Garden's Williamsburg and the water park! I think she will have the energy to wear us all out.

Monday, July 17, 2017

B12 Shot

We have given Ayden Jane a lot of oral b12 over the years. A. Lot. There are several old posts from years past where I worked though what seemed to work for her. In the end, we found that cyanocobalamin gave her a sort of wild, almost over stimulating burst, while methylcobalamin helped her sort of organize all that crazy energy and use it for good.

That puts together what took me a while to figure out. Various times along the way I have talked to Dr. Miller about b12 shots. I nearly went for it a couple of times over the years, but how do you know? I finally bit the bullet a few days ago.

It was ... interesting. The first day was rough! I expected AJ to have extra energy, if anything. Instead she was extra whiny, extra itchy, and extra tired. There were tears because she was tired but couldn't sleep. She cried through lunch with the big kids. I finally got her to go swimming for a little while - my best solution for most things Ayden Jane - and she found a friend and had a good time for a little bit. Then she was suddenly done and wanted to leave. I think she was a little dizzy or something. At least the water had calmed her down and when we got home she was asleep by about 6:45. Amazingly she slept straight through until 7:30 the next morning.

Since then, I have noticed decreased hunger, no rubbing her hands (a little habit she had been doing when she was tired), and she got cold. She was shivering in a chilly restaurant and came out of the ocean saying she was freezing and needed a hot shower after swimming for just a minute. The same kid that has been swimming in the ocean since March!!

I'm not entirely sure what to make of it all, but I am guessing there was some need that the b12 is not filling so once a month it is.

Saturday, July 15, 2017


Monday through Thursday this week, Ayden Jane went to camp. I went too, as one of the parent chaperones. Ayden Jane did amazing. Four full days of nonstop action. The days started at 6:30 and did not end until at least 10:30 pm. She had a few moments where she struggled, but I thought she would just crash at some point before camp was over. You know, fall asleep in a moment of free time or curl up in a corner during the late night activities.

I watched her ... There she was, acting like a typical kid. Dancing and singing. Playing all the games. Following the instructions, getting to all the groups she was supposed to, living by the moment as nothing was predictable, interacting successfully with other kids her age, managing her meals in the cafeteria and snacks. The joy on her face as she was learning how to be a typical kid.

What I really wanted in the moment was to be able to enjoy/rejoice with someone else who completely gets what a miracle the entire thing was. I mean, it sounds a little crazy to get over the top excited about your kid being average if you haven't lived the special needs world. And quite honestly, she was average when she was truly firing on all cylinders. There were plenty of times she was just hanging in there, but that was just as exciting! It's not like she was doing something amazing. She did not win a Nobel Prize nor did she make an Olympic team but I wanted to celebrate like she had done both. I will never be able to put into words the millions of subtle miracles that were taking place in front of my eyes.

Six months ago I would not have imagined she would successfully go to camp. I mean I would have let her go. I would have chaperoned but I envisioned it would be a painful experience for me. Watching as she struggled to keep up and not be able to no matter how much effort she put in. She would have cried... likely several times. Not from being homesick or even from other kids being "mean" as she couldn't communicate effectively or follow directions. They would have been tears of frustration. Tears of exhaustion. Tears of confusion and misunderstanding. There would have been activities missed because she would have needed to sleep. She would have willed herself through it and enjoyed some of it, but it would not have compared to how much she loved camp this week.

Tuesday, July 4, 2017

Fun Parent

A lot of my thinking has always been done on the run. As in, while I am on a run. Lately, I have spent more time on a bike as part of working back to being able to run. Although my thoughts are not as clear, at least I am having some. This post is an attempt to express some of the thoughts rolling around in there on a recent ride.

Sometimes I think back to the mom I was with my first 3 kids. Even the person I was with my first 3 kids. The things I did, the friends I had, the life we had as a family. There was always a lot of laughter. There was always a lot of activity. There was always a lot of chaos - and I mean good chaos. I guess the best way to express it was a lot of joy. Lot's of friends, lots of kids ...

Now, I'm not suggesting that joy left the building once Ayden Jane came along. Trust me, there is still plenty of laughter, plenty of activity and plenty of chaos. At the same time, however, the more serious, goal-oriented nature I have took over. I now had a mission. It started with the basics of getting her feeding enough to come home. Then it was milestones....

Preschool, then grade school... always striving for something. Always having an extra piece of baggage. At times it was worry, at times it was responsibility, at times it was just extra stuff to do, extra planning required.

I realized as I was thinking on my ride, those are lifting. School - just not that worried, she can keep up now. Planning - if I'm not prepared with snacks ect it's no big deal, she can wait. Energy - she has plenty for any place we go. Social skills - she's learning fast and blending in better each day. Conversation - no more need to help 'translate', she can communicate effectively because she can keep up with the conversation.

I didn't know I was still feeling the strains until now that they are lifting. It makes me ready and excited to have FUN. I'm looking forward to our coming vacation and am hoping that Gary is not the only fun parent :)