At 14 cents a pop

In 2011: I changed roughly 3,833 diapers. If I only changed half of them. 1,095 had poop in them. I'm guessing half of those came in the week that will forever be remembered as 'the fire butts'. I joined a gym and went twice. Well, 3 times if you count the 5 minutes I worked out this week before Things 1 & 3 had their meltdowns. I heard my new name for the very first time from the sweetest voice there is, my first born. I held my daughter as she turned blue 3 times and helped her pull it together again. I learned about gastroenterology. I mastered the art of boo-boo kissing. I turned 30. I witnessed 2 crazy kids transition from army crawling to almost running. I started a blog to record the madness. I celebrated 3 first birthdays. I visited the ER twice. I came to terms with my dislike for dolls. I left the state three times. I sat helplessly through around 3,650 seizures. If I only saw half of them. All of them were damaging. I helped teach tiny people to say please, stand on their heads, find their noses and to kiss their sister daily. I danced like I was not yet 2, and was out-danced by those who are actually not yet 2. I rediscovered Sesame Street. I threw away enough food to feed 3 families. I watched babies turn into toddlers. I made more new friends than I have since my first year in college. I witnessed a first laugh and the return of a smile. I ran for sight. Well, walked really. I drank out of a sippy cup. I learned there really is no limit to the number of times you can ask the question 'can we share' when you really know the answer is 'not quite yet'. I read a bazillion books but most of them had pictures. I talked to one 911 dispatcher. I went trick-or-treating. I celebrated 6 years of marriage. I laughed more than I have in a very long time and far more often than I cried. I call it a win. Except for the seizures part. Get outta here.

Happy New Year!

The 'We survived Christmas' edition

First a little nostalgia because I can't resist an opportunity to bust out the chubby cheeks.



Babies First Christmas - 2010



Babies 2nd Christmas - 2011

So Mya was asleep in our Chirtmas card (this isn't it, check your mailbox to see if you are loved...just kidding I will post the winners below). And I am okay with that because that is a pretty decent representation of 2011. If you have ever tried to get 3 children to look at the same place at the same time you might understand just the tiniest spec of our frustration. Now add in there a child that is fully alert about 2 hours out of the day and never on schedule, but normally while her friends are napping. I think we got a good picture of each of them at some point during the Chiristmas season, so that makes me happy. And if I was any good at photo shop I would probably be able to do something with that. But for the forseeable future I think I will just settle for having one child look at the camera without any fingers up the nose. Smiles are a bonus. These things are to be expected, I hear, when dealing with the tiny humans.

I will say Christmas went off without a hitch. It was the longest day of gift giving that any of us have ever experienced. And we didn't even jump houses. We just dawdled, and headed to church, and some of us took some naps, and ate a few times and opened gifts in between. And in the end we realized the whole deal could have been handled for about $7.99 and the donated garage gifts from next door. Wrapping was unnecessary. They were unimpressed. Also, I hear, to be expected. Last year was the year of the box. So next year, here is the plan: Clayton gets a truck, pre-loved is fine. And Ella gets some mardi-gras beads leftover from our wilder days. Ok, we never really had wilder days. But we have beads. Mya gets another Mylar balloon. If we get really desperate we could re-inflate one of the 15 we have laying around the house. But I guess they might go and grow on us, so I may need to re-evaluate the plan.

The 'in case I got lazy before your name on the Christmas card list' posting of the winning photos (note these were taken just prior to the great fight over the little red button toy episode here, I never got any further cooperation from the troops):

Merry Christmas from the sweetest little people around (before you try to take their toy).

But you can have a lollipop made out of lard

If you have ever met me, or more specifically seen my eating habits, you will understand how much this latest plan is going to kill me. If you haven't, here I am in a nutshell: I have things like wheat germ, flax seed, spinach, soy milk and whole wheat flower occupying my refrigerator. I eat them on purpose.

So, here we go. We are starting Mya on the ketogenic diet in 4 weeks. It is a super restrictive high fat, low carb and protein diet that has been proven to be as effective as certain medications in controlling or (hopefully!) eliminating seizures. In fact, once you get to where we are standing, where several medications have failed, it actually gives you the best odds of success. Something like 10-30% of kids get seizure control, which is huge considering nobody starts the diet if a medication could be found to work. They don't really understand how it works exactly but you basically force the body to burn fat to use as energy rather than carbohydrates. The theory is that you are actually altering the brain chemistry which, for some kids, is enough to eliminate seizures altogether. It might be several months before we know if Mya one of those kids.

They will start her off on a 3:1 ratio, which means 3 grams of fat per every one gram of combined carbohydrates and proteins and then adjust from there. We will be restricting, weighing or measuring everything that enters or touches her body, down to toothpaste and lotions. And we will try not to complain too much because we get to use a formula and, as you might imagine, the diet is a whole different deal for kids who take everything by mouth and enjoy foods that are not covered in oil or washed down with heavy cream. Imagine explaining to your 5 year old why she can't have a banana but she can have, and must finish, a sucker made out of oil. Delectable.

This also means another hospital admission. We do love hospitals. This one should only be 3 or 4 days to watch for side effects and to monitor if it is working like they expect. And we get to be prepared in advance and arrive with a healthy child which is far superior to our prior admissions. So, here we go. Say goodbye to your blackberry pie Mya, and mom and dad's sanity. Pie and sanity are overrated.

Still working on the Christmas card

But the photo shoot time was not lost...

Well that sucked

We are in the process of looking for strollers for Mya. Ella and Clayton are getting close to being able to cart their own little rears into buildings for doctors appointments or quick visits and will certainly be nearly there by the time the thing is ordered, approved, passed through the processes of Early Intervention and insurance and shipped to our door. Currently we are making due with cradling her in the pumpkin seat stroller attachment (straps removed because she has long since outgrown it) but her feet stick out the end and getting her in there, especially in the double stroller, requires a bit of finesse. I think it is time. So, I confess, I have been putting this process off. Have you seen the strollers out there for kiddos with needs? The look so....orthopedic...enormous...well so much like a wheel chair. They scream my child has special needs with their straps and there supports. They are heavy and bulky and take up half of your car. And in reality, for a lot of our outings we will still be needing a stroller for the crazies, so where in the world is this thing going to fit? Next week we are going to see 5 of the lighter weight varieties and a couple of them actually look pretty cool. And that is what Mya needs. Cool. So I am praying one of those will work...the best.. AND be approved. Because with 'cool' also comes quite the price tag. And, as I will not be the one paying for the thing, I doubt the powers that be care as much about Mya's status on the playground as the bottom line.

And speaking of things I did not want for my child. A very nice gentleman just delivered her suction machine. When discussing her admission and our goals for her our response was something like this: We want to leave this place with our daughter and her g-tube. We do not want her room to resemble a hospital room. We want to be able to lay her in the middle of the floor and let the little people crawl all over her. We want to treat her like we treat Ella and Clayton. Like a kid. And so it begins. We actually did get to leave the hospital without any add-ons but in our visit to the pediatrician this afternoon she said she was ordering us suction. And yes, it is just suction, and it can only help her, and we only have to use it when she is sick but it just is starting to feel like a very slippery slope. Next time, and our confidence that there won't be a next time is about the size of a freeze dried pea, it will be oxygen, and the time after that a pulse ox. And before we know it we will be monitoring everything and we will be better equipped than our doctor's office. Oh, wait. We already are. They don't have suction there. I guess it is better that these things come gradually. That way they can become your everyday and the next step doesn't feel like such a change. It give us time to make room on her dresser for some machines and a space in the car for her wheel chair.

And now she is coughing. Last night I would have let her cough. Now I am wondering if I need to go suction.

The happy lady is home!

Get this thing off my face!

An update for those who are wondering...

Mya is looking a lot more comfortable this morning. It seems whatever viral infection she got a hold of (not one of the 5 they test for) is on its way out of her system. They discovered probable pneumonia in her...of course... partially collapsed left lung yesterday and have started antibiotics. That combined with the respiratory treatment she gets every 4 hours (hates it!) seems to be clearing her lungs up pretty well. She is actually moving air on both sides this morning which is a definite improvement. They have her on bipap, which forces air into her lungs through a big ol' mask (again, hates it!), but we have been able to avoid intubation on several occasions. So while she can still complain, because I sure would, there are some blessings to be counted. They started weaning her off of bipap this morning and if all goes well she will be down to only nasal cannula by tomorrow. We still have a ways to go to get her healthy and home, but I am starting to feel like we won't be living here forever.

Isn't there a drug for that?

When Ella and Clayton get sick we use words like runny nose and junky cough. They might get some Tylenol and we keep them from playing outside if it is kind of cool. When Mya gets sick she takes it to a whole new level. We call it respiratory distress. The pediatrician asks if I am comfortable driving her to the ER or if I would prefer an ambulance. We not only land in Children's Hospital but on the floor for the most acutely ill of the acutely ill.

I lost count of the number of times today someone asked me (prefacing the question with 'We are SOOO not there yet BUT') if we had considered how much we would intervene, if we had discussed intubation, if it should come to that if we wanted them to do everything that could be done. And don't get me wrong, we are not naive. We have had these conversations. We do not live in a bubble. There is a team of doctors at our disposal whose role it is to help parents like us make decisions like that. This was just the first time that subject was broached in connection to a cold. A cold that Ella and Clayton had last week. I think they each got one dose of Tylenol. It kicked in and then they jumped on the couch.

Pray for Miss Mya. I think she will be just fine this time. But she is pretty miserable.

My Ella Grace (the 20 month old maniac)

OK, technically I am late on this post as she is 21 months and 1 day old. But who is counting:

Ella has started spinning. Until she falls over or runs into the wall. Either way she laughs. She has mastered the crawl onto the ottoman. And she figured out it is fun to stand up in the middle of it. She started sneaking things into nap time. So far she has managed a cell phone, a puzzle piece and an animal cracker. The animal cracker was still whole in her palm at the end of the nap. Her new favorite time of day is 5 am. Lalalalalalala. Laaaaaaaaaaaaaaa. And Clayton responds: hehehehe. We respond: go back to sleep. And she does. 

She is 20 months of the sweetest thing on the planet. She wants to have her hand kissed if she falls down and gets hurt, or if she just falls down and might have gotten hurt. She is patient and sneaky, stubborn and opinionated. She will steal a sippy and scream when it is recovered but quiets quickly when you explain, hey, in all fairness, that was his. Then she steals it again, just because it is funny. Clayton does not find it is funny. She thinks a mirror in a book needs a forehead bump and her favorite songs come from the dancing Santa. She pouts. She hugs. She explores. She loves beads, and scarfs and funny hats. And of course, ketchup. She likes to feed her doll and mix pretend cakes and dance to familiar tunes. My future teenage terror, I will remind you of all of this one day.