Bounce!

I got to visit Mya at school today. Her speech therapist wanted to go over what they have been working on in terms of communication so that we can make sure we are being consistent at home and seeing her in action seemed to be the best way. I can do these things now with my new-found mom-dom. Mya was tired and so we spent a lot of time trying to get her eyes open but I still saw some great stuff.

So here is what I know: she is trying very hard to communicate with us. It is our job to pay attention to how she is doing that and to be patient. It is also our job to give her new ways to show us what she means. When we finally get our jobs done her joy and relief is palpable. It reminded me so much of when Clayton was first starting to talk. We knew he was trying to tell us something but for the life of us we could not make out the words and he would get so frustrated. But when we started asking him to point or look at what he needed and we were finally able to get there, we could just see the relief. Like, finally! That is what I have been trying to say. Mya must feel like that all of the time, only she can't point or gaze to indicate what she really means. Her therapist had her in her lap and was bouncing on the exercise ball. She got to where she was grinning from ear to ear. And then they would stop and wait. And sure enough Mya would move her arm or her leg for more. It was just a fraction of an inch, but it was consistent. And in the split second after her arm moved and her therapist called out that she saw it, that she wanted more, but before she began bouncing again that look of relief crossed her face followed quickly by the smile. You guys get it!

And so we are building on the arm and leg movements. We added a switch placed on her arm where her movements would set off a pre-recorded message 'bounce'. And she very purposefully and consistently activated the switch to ask for more bouncing. Mya is communicating and I am so proud of her.

I finally did it

I am a mom, a full-time mom. I no longer have a 40 minute commute to calm my nerves or a padded income for all of the what-ifs. There are a lot of what-ifs. I no longer have a safety-net and a built in go-to backup for doctor's appointments. There are a lot of doctor's appointments. I no longer have the world's greatest nanny, although she will tell you that she is never really going away. But she is one of us now for as long as she will have us. I am no longer a part-time actuary trying to decide whether this is the right path for me. Because I took a calculated leap and now I am a more-of-the-time mom. I am pretty sure they will challenge me. I am pretty sure there will be days when I long for my cubicle. I am also pretty sure that this is the best decision for this family at this time. I am excited to get on with my mom-ness. I did finally just pay off my Math major. Why not put it to better use.

I know I am being played. I am okay with it.

Bedtime was 2 hours ago. After the first trip out to the bathroom (a full 48 seconds after I tucked them in) the next hour was filled with quiet voices. I couldn't quite decipher what they were discussing but it sounded pretty intense. Then there was silence for a little while and I thought they were out for the night. Finally, I heard what sounded like little feet outside of their door and so I waited for the little voices to follow. And it was quiet. So I investigated. 20 fingers and two faces were peering out of the dark room. Hi Mommy! Followed quickly by: we need to go potty.

Now they are singing Ol' MacDonald had a farm with a quack quack here and a quack quack here..on repeat. I should tell them to go to sleep. But someday these two maniacs won't share a room and I will wish for this again so I am going to give it two more minutes.

C: We can sing it one more time and then we have to go to sleep.
...
C: That's the last one
E: I want to sing it one more time
C: Me too
...
...
And something is hilarious. And now we are fighting over one more time again. And 2 mintues is up.
A: GO TO SLEEP

Where are you planning to keep all of this?

B: Guys, why are we out of bed? Do I need to close the door?
C: I was giving Ella a hug.
B: Oh. Okay then.

I think I was under-prepared for what the oxygen man was leaving. It is a giant suitcase-sized machine and a long tube that hums and thrumps all through the night. And it is just the beginning. As he was walking out the door he turned and looked at Mya, sleeping so comfortably in her chair. It is only for a little while, he said, until you are feeling better. He didn't really understand what he was leaving either. It isn't for a little while. This is our new temporary normal, only to be replaced with a new and more intense temporary normal at some point down the road. It doesn't get easier. And that's what we keep hearing, right? That this journey we are on is a descending roller-coaster. It has its highs and lows but once it drops it never really makes it up as high again. I am not really sure how you bottle up that little nugget of reality when it hums and thrumps you to sleep at night. But that is what we are trying to do because all three of these kids are pretty fantastic right now and I want to do more than just handle today.

my feet are getting too big for these baby steps

C: Mom, what is this red thing?
A: That is a candle.
C: Who gave it to you?
A: I don't know buddy, it is pretty old. I probably just bought it somewhere.
C: I think Mimi gave it to you.
A: Okay, that's possible.
C: Thank you Mimi... Mom, Mimi didn't say you're welcome.
A: Well Mimi is at work, so she didn't hear you.

I guess we are adding oxygen to the routine. Mya did another overnight oximetry study a few weeks back to see if her day sleeping could be connected to something going on at night. Her saturations were hovering around 88% for most of the night even while on bipap. The doctor wants to try her on a liter of oxygen at night through her bipap and see if that brings her up. They say that 88 really isn't all that bad, below where they set the alarms when you are inpatient, but not by far. But that was a good night, and we are already forcing air into her lungs. I asked for her also to get a continuous monitor for us to use at home. If the child needs to be on oxygen I feel like I should know where her saturations are on a more regular basis. We won't use it all the time and will set the alarm lower than 90, but I need to be able to check her, especially as we head into winter.

The state told us she wouldn't qualify for the medicaid waiver until she is older. All 3-year-olds require round the clock supervision. She really isn't all that different. Right. All 3-year-olds have a hospital room in their house. Thanks.

Words like 'nexterday' make my heart happy

We are wrapping summer up in fine fashion. Mya finished week 2 of the new school year and is getting great reports from her therapists and teachers. She pulled the wake-up-from-what-seemed-like-a-permanent-fog-just-in-time-for-school bit again this time around. Which is great, and perplexing. I haven't even heard from the nurse yet. 2 weeks is a record. In speech they are working on finding her consistent responses. They are using a program called 'Make Every Move Count' as a beginning communication program for her. The idea is to find a predictable response that can be used to allow her the most control over her environment. She is doing a lot of vocalization and kicking (and smiling!) when she is at her most alert. I have had really great success with using 'more' and waiting for her vocalizing. She is especially receptive when there is food involved, sugar specifically. Smart girl. She is also consistently activating switch toys at school so we are very excited for this school year and pray we can keep up the alertness and make progress on her goals. She is so capable!

And this reminds me, I never posted the sucker video. And I will...as soon as I can get it to upload.

My favorite conversations from today:

E: It is Tayton's turn to nap in Mya's bed today, but nexterday it is my turn. (arm fold, stern face and head nod)

C: Daddy, I need to tell you something.
B: Okay, what's up?
C: I love you

C: Thank you for making me frog peas mommy. Thank you for making me lunch mommy.

I take no responsibility for their outfits.

the love!

I guess this is hope

I suddenly feel so very small. I feel like we are standing by and watching and doing nothing to stop the seizures. Like they are consuming my little girl before my very eyes. Which is crazy because we are not just standing by. But nothing is working. They keep coming back and she is suffering for it. We have a plan which involves going down the list of meds and balancing the chances of success against the chances of side effects and when they don't work we move on. It's like our own little science experiment, only it isn't an experiment, it is real life. Our plan sucks. We have been watching for liver failure and vision loss and fighting 22 hour sedation. I was trying to have faith and trust we are doing all that can be done. And then the latest news hits the news and it feels like what we are trying isn't enough. This news is supposed to mean that there is hope but all it is doing is making me feel very very angry and defeated. These kids that have failed all of these meds are finding relief. So very many of these kids. Their seizures are stopping or slowing down and they are having virtually no side effects in a world of giant life threatening side effects. They have found their miracles. And it is out of our reach. We do not live in a compassionate state. Politics are standing in the way. And the more I dig into the politics the angrier I become.

So if you missed CNN last night I invite you to watch the following. And while you are doing that imagine that you are watching it from my chair, with your daughter on the floor between you and the TV, little Charlotte on screen in the videos of the seizures she USED TO HAVE, and your daughter on the floor having her very own at the same time. And after you do that I dare you to vote against medicinal legalization the next time it comes up on your ballot. These kids, our kids, are desperate and it shouldn't matter what state they live in. We shouldn't have to move and we shouldn't have to break federal laws to fight for quality of life. It isn't a joke, it could be a real chance. And it is ridiculously misunderstood.

CNN Video

Just don't read the comments. Wow.