I should keep a helmet in my car

There are three parking spaces at our pediatrician's office that slope down to enter and then back up as you park. Parking in any of the three means that my rear bumper is very nearly on the ground and the lift gate will be at head smacking level when it is open. And every single time I park there I very nearly knock myself out both coming and going. Every single time. It has become sort of a personal challenge when I pull in and see that those spots are open and also some 3 aisles back. I can do this, this time I will not walk into a headache. And then I do. And on the way out it is worse because I have sort of a lift and quickly pivot move that helps me get the stroller into the van without hurting myself. And so I am focusing on the lift and the pivot and then smack, I also have to focus on not dropping the stroller. And as I am trying not to drop the stroller or the 'f' bomb I always tell myself that next time we are parking 3 aisles back. That happened today.

Today was the sort of day that makes me happy I like a challenge. Mya had a pretty rough evening last night with an out of nowhere vomit and choking spell that took a good hour of on and off suctioning to clear. She was super irritated in the arm pumping in pain sort of way and we just could not figure out what was wrong. We did finally get her to keep down some tylenol and get some sleep but I had a pretty good feeling that she was not going to wake up well. I was scheduled for Ella and Clayton's preschool conferences first thing but I thought that maybe they would be cancelled for the weather. They called about 30 minutes before to let me know if they were still on. Would I still like to keep the time? As I am thinking about my sleeping child and the portable suction that needs a new part so must be rigged up with random tubes and the other 2 children that I will have to dress for the weather and the snow and salt that will collect on the stroller wheels and make its way onto my jeans during the pivot I hear myself saying 'yep, we will be there, I am waiting for a call back from the pediatrician, but I think we can still fit it in'.

It's almost like I walk into the lift gate on purpose. And I totally did. I ended up suctioning in the parking lot of school standing in the sub-freezing temps and then again midway through our conference. The timing worked out to get to the pediatrician right after our already scheduled play date was supposed to start so I just dropped the maniacs off on the way. I learned between my concussions that Mya has a pretty gnarly ear infection, which doesn't really explain the vomiting but whatever, and then we returned to the play date. She proceeded to sleep but then also to choke on her peanut-filled breakfast in my dear friend's nut allergy home. Like really, not a good day for my lady. We finished the day with over-exhausted 3-year-olds waking up from naps just in time to be 5 minutes late to swim lessons. And so I am decompressing but also thinking that tomorrow we will definitely be parking 3 aisles back. Or maybe we won't leave the house.

and a happy new year

Facebook has this year in review deal that I finally clicked on the other night. I came upon the video of Clayton escaping to Ella's crib the day before we were planning to switch them to big kid beds. It was January 4, 2013. I can't believe that was only a year ago. It feels like ages. Their little voices, their hair, their faces, they have changed so much! The crib sheets and dollies strewn across the floor, defiance in their eyes. Okay, maybe they haven't changed that much. And the next video was Mya's laugh from March. The light in her eyes and that precious giggle we do not take for granted. The fact that we caught a moment like that on video is simply priceless because so often with her we just don't know when it will come around again. In so many ways Clayton and Ella are moving forward and in some ways Mya is too, but so much of her development just keeps looping back around. She was doing something in March that we may not see in January. We may never see it again. And as hard as we fight it there may not be a thing we can do to change that. Sometimes I have a hard time putting my finger on what it is about this parenting journey that is the hardest. But watching that video makes me think it is the not knowing. We don't know how much of this next year she will be awake. We don't know how often we will see that light, how many smiles, how many laughs. We don't know what we will lose or what we will gain and how many times. We also don't know if there is a simple fix mixed in with all of these competing factors.

We are in a sleeping patch, and also sort of a puking patch but the sleeping is the current focus. I have been getting her up between 10 and 11 and bringing her into the living room where, if she ever did wake up she promptly falls back asleep. Then she is out until close to 2 when she spends an hour keeping me and the suction machine on our toes. This child does not wake up well. Anyway, focus. Tonight she was able to stay awake until after 8. So this begs the question (or it does if you open your big mouth and mention it to the nurse that is asking) is it really okay that between and 10 and 2 and starting at 8 that she is sitting amongst her family and not in her room hooked up to oxygen and forced air? Do we want our daughter in her room for most of her day? Do we want to keep her from school? Do we want to keep her siblings from activities? Do we want to send equipment with her everywhere she goes in case she falls asleep? Can we opt out of all future life defining decisions? I feel like we have handled some big ones. Isn't there some sort of quota?

So often you hear someone point to some milestone as the thing that makes it all worth it: a child that finally walks, a toddler's first I love you, the delivery of a healthy baby. But what, I always wonder, if you never met that milestone? What if your child never did walk despite all your efforts, or your kid never had a first word because they were not born healthy? Is it still worth it then? Some people move forward and some people loop around and some people step back. I have stopped trying to make it all balance out. All I know is that Mya is loved. She knows it too. Even when she is not smiling and even when she is not giggling and even if we never catch another milestone on tape, absolutely, without a doubt, I know that she knows it too. Maybe THAT makes it all worth it.

Christmas recap

We had a fun year! Santa delivered. And mostly Clayton was excited that he got what he asked for. I say mostly because Hot Wheels really needs to start making mini vans. Purple minivans. Not sure. Unfortunately Santa didn't also bring him what Ella asked for. I guess Santa should have know to do that but the Santa that comes to our house is still in training. So when we are well rested we are pleased with the purple car and the silver car and the yellow thing with jacked up tires that sort of looks like it could be a van but isn't purple because the elves ran out of that paint, and when we are nearing nap time there really isn't anything that could make us smile anyway so there ya go. Ella got her Cinderella princess and is still in princess heaven so mostly she is tolerating Clayton stealing the toys he asked for on the 26th that Santa failed to bring him. Miss Mya scored a new lounge chair and some comfy socks along with relatively good health. Christmas blessings all around.

My favorite Christmas memories:

• Getting them really excited to leave cookies for Santa and then forgetting to leave cookies for Santa.
• The record-speed gift opening session.
• Vomiting in the new chair within minutes of receiving the new chair without ever actually getting vomit on the new chair
• Mexican food and day after Christmas lights
• Putting up decorations together
• Hearing them recite 'Twas the Night Before Christmas' every night for a month
• Giggling about Santa being on his way
• Hearing versions of Christmas songs coming from their room
• Their first Christmas program 

'the tallest tower the world ever saw'

Happy lady

We've gotten lots of smiles these last few days. This coming on the tail end of a little cold has been very encouraging. I kept Mya home from school on Monday because she still had some congestion and was needing a lot of suctioning in the morning. On Tuesday she seemed to wake up much more smoothly and so I decided to drive her to school to give us a little more time to get her going.  I got the phone call from the nurse about 45 minutes later saying she was laboring to breathe.

So far she seems to be getting better and was able to get back to school yesterday. But even with the cold we have been pleased with her alertness. I feel like she is starting to anticipate steps in her day. At bed time on several occasions she has turned her head and looked directly at us when we were getting her mask set to put on, like 'oh no here it comes'. This also means she is fighting it more but the awareness is encouraging. She is more consistently reaching for toys on her back and moving her hand to locate her switches to keep music playing. She is also starting to express hunger with some lip smacking and responds when you start messing with her g-button. I just love that we are seeing her make these connections. It makes me wonder if the new diet is making a difference in her health and comfort.

The blended feedings are still going really well. She has tried so many food and is keeping everything down. She even got to eat a traditional Thanksgiving meal with the family, in perhaps a non-traditional way. I am looking forward to sharing Christmas dinners with her.

We miss you!

To my sorter of pills, this is ridiculous. Who ever decided a quarter pill three times a day was an appropriate solution never had to scrape baclofen dust off her fingertips. Thank you for managing this role. Mya thanks you for remembering the Miralax ever night, and curses her mother for forgetting. Thank you for splitting the mid-night wake ups. I am not sure how long she beeped the other night but I did have a very vivid dream that incorporated its need. And this morning when her bag was still full and the pump will still running...just not pumping... there was no one to vent to. How many more different parts of this day could possibly require peer review? To my partner in face-mangling crime. Thank you for helping me get her onto bipap every night, and for those days when it is just done before I have a chance. Sometimes a mama needs a break from repeating 'I am sorry but you really need this'. To my carseat installer, my front step shoveler, my Target runner, my bedtime story reader, bonus boo-boo kisser, my mail retriever, my trash bin hauler, my leaf raker, my dish washer, my co-enforcer, my puppy pajama laundry mover, my big baby finder and my smoothie maker, you are appreciated. With the help of some amazing friends who imagined the need and offered to just be here this week we have nearly made it out unscathed, but we are very glad we will be having you back. Fly safe and enjoy your time.

Don't worry, I will let you have this job back.

Winter arrived while you were gone, but Mya is ready!

Cheese! Hey guys, smile. both of you. look at the
camera. Clayton. Ella. Yo. Ok fine.

Burpees are no joke

....except sometimes when the dude in the TV tells me I have to do 10, I do just kinda laugh cause he can't see me doing only 7.

It is hard to explain how many thousand directions my mind goes in a day. My maniacs are alternating excessive cuteness with excessive frustration. Mya is bordering on healthy and very nearly doing superbly well but just barely on this side of something is up. And as I try to appreciate the closeness to superbly well and focus on the cuteness over the frustration I am thinking of the something is up. Something is always up. Something is always...except. She is doing so well in school except when they can't get her to wake up. She has been eating so very well and keeping it down except for the hour I am trying to get her off to the bus stop and that one hour is like a marathon and a sprint sprinkled with some burpees. And I tolerate burpees but man am I glad when they are loaded on the bus with a precautionary pile of burp cloths and a lighthearted warning about why they are there. Hehe, no really if breakfast comes up just catch it with these. She has been so very healthy except for that morning junk which is progressing to the evening junk. Oh and also it is virus season and we know what these next months may hold. The seizures seem to be slowing down except the sedation is speeding up and the smiles are harder to find and just sometimes I think that maybe the seizures aren't really slowing down. She is sleeping pretty well except for the first hour after you tuck her in and that she occasionally wakes up choking or screaming for no discernible reason. And on the topic of the maniacs, the frustration of the 3 second window you have between a smoothishly sailing afternoon and IT-IS-WAY-PAST-NAPTIME is very real but that is called living with three-year-olds. All of this other stuff is not. Some day we will laugh at the absurdity of the preschool meltdown. As much as I try to validate the other experiences as just part of raising a special needs child there is no spin that I can come up with that makes living with a revolving 'except' any less stressful.

I had a meeting today in which someone asked me what my number one goal was for Mya. I want her to be awake, alert and healthy. For, you know, like the majority of her days. I'm cool if she sleeps at night. I do that, too. Simple, right? SO RIDICULOUSLY HARD. When she is present she is doing such awesome stuff. So if you could pull out your magic wand, I want more of that.

Operation Feed My Child

The experiment in real food is going phenomenally well. I have even been able to give Mya a small meal before school most days. In the past I have been too fearful to fill her belly before putting her on the bus and so I am sure she was just starving by the time she got home in the afternoon. She gets two 60cc syringes full of food for each of her afternoon and evening feedings and a single syringe in the morning. At her best on formula we were running her over an hour and most lately for the better part of the day. Now she gets a whole syringe over a few seconds and then we come back about 15 minutes later with the second. No gagging and no choking in a full week, unless you count the mornings after her formula feeds. This means we can work with her in the afternoons, she gets to be in different positions more often throughout the day and she gets to be held at night again.  It is a little more work for me to come up with a meal and force it through our $20 Walmart blender but she is now my best eater. She gets a balanced diet of food I can pronounce and she eats it all. Mostly she is just eating some variety of what we eat, in perhaps less desirable combinations. Chicken salad-peanut butter-apple sauce smoothie anyone? Tonight she had chicken fajitas with us down to the homemade tortillas and refried beans. I've been filling this child with seizure meds that don't stop seizures and formula that makes her sick for so long that it is nice to give her something good for a change. Thank God for the internet and the fantastic network of moms I have found. Next up, tracking down a dietician who is on board and a blender that plays a little nicer with homemade tortillas. We can do this Mya.