Last night, after a particularly panic-inducing thought process about who would take care of the kids if we both died suddenly (which was compounded by KayTar's eating situation and her ARD meeting today and the processes I am going through to get her into therapies and on insurance and all the other little things which are maddening and yet I know how to handle), I had an epiphany.
FOOD CHART.
It is working for potty training, right?
So here is the plan, I make a chart with labeled slots that she can read on her own, for example:
Chocolate milk (Pediasure)
Baby Food
Baby Food
Chocolate Milk
Baby Food
Snack
Chocolate milk
Baby Food
Baby Food
And send her over to check it several times a day and ask her if she wants to have one and earn a sticker. If she eats and drinks it all, she'll be doing pretty well nutritionally from what I estimate, although I'm still waiting on the exact numbers.
I hope it will give her a bit of control, which she seems to crave, and a bit of incentive, which she seems to like. We can handle it as casually as this potty training thing, hopefully taking a bit of the underlying struggle away.
Maybe. Maybe not.
But it can't hurt to try, can it?
Thursday, May 22, 2008
Fingers crossed
Monday, May 19, 2008
Tail chasing
Round and round.
We've done this all before.
Over and over.
I've said this all before.
You'd think I'd be out of things to say on the subject, worried all my worries away by now. But you'd be wrong.
I feel the worry build, buzzing inside me like an electric current.
KayTar's given up the Pediasure. Today is actually day 6 of the Pediasure strike. And she is largely refusing milk too, though on a good day we can get 8 ounces of milk in, but nothing is certain. And you know, there is the long standing on again off again food strike. What can I say? The girl is nothing if not committed.
On Day 1, I thought, this is odd.
On Day 2, I mentioned it casually to the pediatrician during BubTar's well check, hoping the mere mention of it would change things.
On Day 3, I started tracking her intake again.
On Day 4, I tried to figure out the caloric value of 7 french fries and one bite of lunch meat.
On Day 5, Josh and I discussed it over our anniversary dinner.
On Day 6, I wrote this post.
If you remember, Pediasure is the only thing that stands between her and something a bit more drastic. Pediasure is where she gets the majority of her calories and nutrients. Pediasure is where she gets most of her hydration. Pediasure is also where she gets her Miralax doses, without which her stool backs up in a very, very unpleasant manner.
Thankfully, she is not shunning water, although she isn't drinking it as heartily as she once drank her Pediasure. It might not be calories, but it is fluid. And we can put Miralax in it. Unfortunately, when she used to drink an entire bottle of Pediasure and get all of her Miralax in a timely fashion and exact dosage, now we never know how much she will be willing to drink and we have to put Miralax in everything, just hoping enough gets into her to keep things moving. Things came to a standstill on Day 3, but we seem to be getting things going again.
The delicate balance is just too delicate without Pediasure. With Pediasure, I trained myself not to care. To relax. Her weight was good. She was getting her calories. She was getting her fluids. She was getting her medication. Everything else was just gravy. Now everything counts. I want her to eat. I need her to eat. When she says no, I want to engage, convince her it is a good idea. This helps nothing, I know, so I don't. But my insides are screaming, JUST ONE JAR OF FOOD! PLEASE DRINK THE PEDIASURE! PLEASE! YOU HAVE TO DRINK! EAT IT! But I don't say it. If I turn it into a battle of wills, there is no question who will win. She's winning already.
I asked the pediatrician for updated nutritional requirements, so I can see just how far off the mark she is, I'll get those later this week. Based on estimations, I'd say she's getting about 1/2 of her necessary calories, maybe hitting her minimum resting expenditure on average. It's not great, but it isn't as terrible as it could be, for sure. Even so, I just can't help but think about the possibilities, about what might happen if this becomes a long term issue, about how she is still uninsured.
Josh and I talk about it like it can be fixed. Maybe if we just... How about we try... It is helpful to think things can be fixed, if we just find the right way to approach them, but in the end, after we talk it up one side and down the other, we realize...it isn't fixable. It is up to KayTar. We know this all along, of course. We just pretend not to.
Every night before bed, we give her a bottle of Pediasure, which she promptly sends back to the kitchen, "Not THIS chocolate milk. Not CHOCOLATE MILK. Not this." She calls Pediasure chocolate milk, even though it is vanilla flavored and she hates all other flavors, especially chocolate. We bring her plain milk, and she says, "Not THIS milk. Not MILK. Not this." And we bring her water. This is acceptable. And we are reminded once again that it is up to her, that is always has been up to her, and that is what makes it all so difficult.
Just a couple of kids.
Seven years and some months ago, we were a couple of kids showing off an engagement ring in a photo booth...
Seven years ago today, we were a couple of kids getting married...
Six years ago, the two of us became the three of us...
Three years ago, the three of us became the four of us...
Happy anniversary, you.
Friday, May 16, 2008
Doors
This morning I opened one of my emails and my eyes filled with tears. It surprised me, really, that my relief was so strong it would elicit tears. I sat back in my chair, closed my eyes, and tilted my head back until the unexpected emotions ebbed as quickly as they had arrived, and I dabbed my damp cheeks with my t-shirt. I'm not really fond of tears, especially when they catch me off guard.
The email was from someone who can help us get KayTar into therapies, without cost to us. Not just the typical therapies either, but things like yoga, play therapy, pet therapy, day camps that both she and BubTar are welcome at...enriching programs that have always been outside of KayTar's grasp. It is the second time this week that I've watch a door be flung wide open for her. I also spoke with a special needs art program this week, where they teach music and dance and drama and the visual arts to these kiddos with limitations, kids like KayTar who could never keep up in a typical dance class, even though she loves to be the center of attention and will use anything as a stage, who I never really thought would be a part of those things...at least not at this time in her life. I can't tell you how many times I've looked into groups and classes for her, only to realize she isn't on par with the children in her age group, she isn't able to join a three year old class and keep up or understand. But now, here we are, looking at these options. Choices for her. Fun, exciting, enriching programs she can be a part of.
KayTar's pediatrician called me on Wednesday with a wealth of information about these and other programs. Another of her patients, a child with cerebral palsy, is involved in many of them and the mother mentioned something about their therapy program and our pediatrician thought of us and got all the contact information. (Have I mentioned how much I love our pediatrician?) KayTar doesn't have cerebral palsy, but she told the mother a bit about us and she didn't think it would be a problem to get KayTar into the programs. It could never hurt to ask, right? So we did. Thus far, the answers have all been very good.
And so this morning my eyes filled with tears without warning, overwhelmed by the ways doors can just swing open, if you only know which ones to knock on.
Thursday, May 15, 2008
Stereotypical Mommyblogging Post
WARNING: The following paragraph may contain some talk of toileting habits. May be offensive for non-mothering types.
Since Sunday, KayTar has really taken to using the toilet since Sunday. I fully believed her little Mother's Day deposit was a fluke that would not soon be replicated, but I was wrong. She has had made deposits on a daily basis since then. Yesterday was amazing. She used the toilet for both needs throughout the day. I only changed two diapers yesterday, her morning diaper and one she had a little accident in. In her defense, there was a high percentage of liquid in something that should be a bit more solid and I think it couldn't be held in, if you know what I mean. She has a little potty chart with stickers and she's really doing great with it. Today we started pull-ups, because she isn't using many diapers and I'm tired of all the fastening and unfastening. I'm not expecting miracles, fully training in any sort of time frame, but she's doing it and it amazes me. I expected this to be more of a struggle with her and here she is, exactly in her own time frame, doing things on her terms...just like always. We are doing a good bit of anticipating her needs and language can still be a bit of a barrier, but it is happening, some sort of glorious surprise. My wee baby blossoming into a creature who likes to "Do it a-self."
BubTar started an afternoon program this week and it is very strange to have him out of the house. KayTar spends her mornings lamenting his absence. Any time we get in the car she thinks we are going to get him and when we return without him, she loses her little mind. He loves it, though, and I daresay it is making him a much more pleasant chap when he does return home. He's a social creature and a half day kinder program doesn't give him enough time for adequate socialization, so this has been nice for him, I think. It is new and different and KayTar and I are chafing a bit, trying to find a new routine without his steering presence. In three weeks, school is out and it will be all BubTar all the time, and we'll be falling into an entirely new summer routine, which seems daunting right now.
KayTar has taken to a new behavior. She screams "HELP MEEEEE! HELP ME! HELP ME! HELP MEEEEE!" anytime I suggest something that she deems unpleasant. At the library, I said, "KayTar, let's go over here so I can choose a book for us." Her response? "HELP MEEEEE! HELP ME! HELP ME! HELP MEEEEE!" The library is a very quiet place, and KayTar is NOT a quiet girl. At the park, I said, "Time to head home." Her response? "HELP MEEEEE! HELP ME! HELP ME! HELP MEEEEE!" It sort of looked like I was kidnapping her. After picking BubTar up from school, I said, "Time to get in the car." Her response? "HELP MEEEEE! HELP ME! HELP ME! HELP MEEEEE!" It REALLY looked like I was kidnapping her that time. Stuffing a flailing octopus of a child into a car seat while she screams for help is probably a good way to get the police called, but luckily it hasn't happened yet. I just don't know what to do about it. I can't explain to her why it is a bad idea. She just knows is that people shout "Help me!" when they are unhappy, and so she's scripted it into her language set. This is why I was grocery shopping alone at 9:30 last night. I preferred to get it done without the screams for help and hairy eyeballs of other shoppers, and the probable intervention of the police.
I started a chore chart for BubTar this week. I didn't expect that it would motivate him, and I just started for tracking purposes, really. I fully expected weeping and gnashing of teeth in response to the theory that he should take part in household upkeep, but he's really after those stickers. I didn't think stickers would motivate him much at all at this age, but he's checking the chart often and reminding me to put them up for him. Room cleaning still elicits sobbing, but the hope is that since it is a daily chore now, it won't get to the point where he just lays in the middle of the huge Lego, K'Nex, Erector set, Bionicle mine field that used to be his carpet sobbing about how it is just too much mess and he can never, ever, ever clean it! He's also been having a little trouble staying focused on her seatwork at school, so we added that to the chart and if he can finish it every day without trouble, his stickers can earn him an end of the school year toy. Yesterday he came home very excited that he completed all of his work without any problems. It is easy for him and because of that, I think he tends to zone out and dream of Bionicles rather than phonics and math. Hopefully stickers + toy (likely a Bionicle) will be enough to earn his concentration during those boring worksheet times. In two weeks, he graduate from Kindergarten. Can you believe it?
Wednesday, May 14, 2008
That thing you do
My friend Sheree gave birth to her second child, Gabrielle, on Friday, May 9. She weighed 6 pounds 14 ounces and was 19 inches long. She is gorgeous. However, Gabby's oxygen levels were dipping and they had to start her on 60% oxygen and she is doing well. She had to stay at the hospital after Sheree was released. On Mother's Day, while one the phone with the pediatrician for an update, he mentioned that he was concerned Gabby might have Down Syndrome. Since then other doctors have examined her, and all are of the opinion that sweet little Gabby does have Down Syndrome. On top of that, the doctors did and echo on her wee little heart and there are a few holes in the wall and there is some debate as to whether they will close on their own or require surgery, possibly as early as 3 months of age!
Sheree has been given a lot of information to digest in such a short period of time. Being home without your baby, finding out about a genetic abnormality on Mother's Day, thinking about heart surgery for your baby who hasn't even left the hospital yet....it is a lot. And Sheree has started a blog! Would you all, please, stop by and congratulate her on the birth of her darling little girl and also leave some kind words of support. I've been telling her all about the amazing support to be found out in these bloggy parts, let's show her we mean business. 
Tuesday, May 13, 2008
For Mother's Day...
POOPED ON THE POTTY!
This boy...
thankfully and mercifully, WIPED HIS OWN TUSH, successfully!
And this guy...
pre-ordered Guitar Hero Aerosmith for me. Niiiiiice. He also got me Xbox points for downloading fancy new songs. Also niiiice.
I'd say it was a totally wonderful day, but that would be a little bit untrue. Josh had a migraine for half the day, BubTar was cranky as all get out (when he's cranky he LOVES to pick arguments with me, I must have a target on my forehead), and that sort of tainted the first half of the day. But overall it was great. Yummy food, lots of swimming, and family. Oh, and lots of potty milestones to go around. KayTar's was totally prompted. She always goes after her baby food, so Josh just plopped her on the potty and she went. She said, "Oh! Dat's tickley!" and "Chocolate! I WUV chocolate!" She's so hilarious. Honestly, I'm just glad it didn't end at the ER like last year! Anything would have been a success after that!
Sunday, May 11, 2008
Happy Mother's Day!
I can't believe she wasn't speaking this time last year! It shocks me every time I see an old video. My girl has just come so far!
