Since going off gluten a little more than four months ago, Olivia has grown over an inch and gained almost five and a half pounds. Four months. Five pounds. So, while she was never symptomatic, the celiac was obviously interfering with her ability to properly utilize what she was eating. Either that or she just had one hell of a growth spurt.

Her A1c is 7.2, which is respectable for someone her age and is lower than the day she went on the pump, but is higher than it had been in the last year or so of multiple daily injections. Disappointing. But she was sick a lot this winter and we did struggle with getting everything dialed in when she first went on the pump. Still.

In other news...Four? Four beats the hell out of Three. No contest. I am already loving Four. This was a hard winter for us and I am going to lay a lot of that at Three's door. Three was massive day-long tantrums. Three was exceedingly unreasonable. Four dislikes warms baths and is into screaming and fit-pitching, but Four can talk about Four's feelings. Four and I have been having fun.

Sawyer is not yet crawling, but did say his first word on Mother's Day...bye-bye. Sawyer is going to be my "get into everything" baby. He's the Ninja. You don't know how he got under that table or what that thing is that's in his mouth, but he did it with a quickness. My already light blog posting is sure to fall off to nothing when he starts crawling and walking.

her last day as a three-year-old...

 

 

 

Olivia: "Momma, I think that the Easter Bunny is going to come in our house, clean our kitchen and hop on down the bunny trail."

Bring it, bunny.

"Hey, Mommy? Tomorrow can I watch that movie again? The one I watched with Miles and Ivy? Peas in a Can?"

"Peas in a Can? When did you watch a movie called Peas in a Can?"

"Today. You know...the one with Tinkerbell and the alligator and Hook."

"Oh right. That Peas in a Can."

"And what are you thankful for, Olivia?"

"Mommy and Daddy and Sawyer. Oh, and fairies and princesses. And reindeer."

Olivia had her endo appointment last week. I was dreading her A1c. Her numbers haven't really been out of control (except for the post-bedtime high that seems to arrive every night when her Humalog wears off), but I feel like diabetes management has not been top-of-mind recently. Her A1c had gone up, but only slightly from 6.9 to 7.1. I know that we have been the cause of that and I know that we can get it back down.

I was also dreading the appointment because they were going to take blood this time. We have talked about doing it for the last couple appointments, but it got pushed back each time. They would take three vials for the celiac screen, cholesterol, etc. The last couple of weeks have had O at the doctor a lot for general unpleasantness and I didn't want to put her through this, but I did want it out of the way. She cried a lot but held very still and got it done. We were glad it was over and I almost didn't give it another thought once we got out the door.

But the nurse practitioner called yesterday. Four out of five of the antibodies for celiac were positive. Four out of five. Positive. Celiac disease. And the numbers are so out of whack, so high, that there is almost no question, even though Olivia has been exhibiting no symptoms.

Part of me is just mad as hell. Just pissed. It all just seems so ridiculous. Like a cruel joke.

Another part of me is just trying to get on with it. Accept it and start thinking about how to get Olivia to eat more vegetables.

We still have to see a GI doctor in a couple of weeks and I have a lot of research to do. Apparently we are not supposed to change her diet until she has a biopsy, but since the treatment is the same regardless of whether or not the bowel has been damaged and we hope we have caught this early, I intend to question the need for the procedure.

It feels like I have all these pieces scattered all over - O's diabetes, this celiac panel, immune system issues that have come up for Marc and me - I don't know how to put everything together and keep us all healthy. And in the back of my mind, there is this: what about Sawyer?

Can't type. Too busy with laundry. One of Marc's co-workers gave us two huge bags of clothes that his daughter had outgrown and I am under strict orders to have everything washed by the time Olivia wakes up in the morning. Sigh.

Don't get me wrong. The clothes are adorable and we are grateful to have them, but Hair and Wardrobe have become a bit of an issue lately. Olivia has long held firm opinions about what she wears and I am a big-time "pick your battles" kind of mom, so it has not been a problem. Perhaps you have seen the child with the headband AND the three pigtails AND the barrettes wearing her pajamas underneath a dress? Yeah, she's with me. As long as it is weather-appropriate, I am almost always cool with her picking out her clothes. What I am not cool with is helping her into one of these get-ups, only to have her decide an hour later that she was wrong...this is not today's get-up. Today's get-up was to consist of tights, socks, two skirts, something with a hood and that one barrette with the ladybug that she had that one time. I used to indulge this when it didn't involve the elaborate coifs, but I am over it now.

It was at one time a major battle to get a brush near O's head and I am grateful that we have moved beyond that. I am not very good with the ponytails and the pigtails and the braids, but I do enjoy spending the time with her each morning as I put her hair up. Once it's up, however, the hair can't just be up; it can't be disturbed and it can't be "shaky." "My ponytails are SHAKY!" We hear a lot of this - meaning that her ponytails aren't tight enough and that she needs to take everything out and have you start over again. And she has gotten pretty neurotic and tyrannical about it. I find myself constantly checking my pockets for hair accoutrements. Heaven forbid she want a pink rubberband when I only have a blue.

So. We had to have a little sit-down last week. We gently suggested that perhaps too much time was going into all of this prep each day and that there was going to be a limit to how many times a day she could change her clothes and how many times a day she could take her hair down and expect someone to put it back up. And it went over pretty well.

But then The Bags showed up. You should have seen her...there were so many stripes to be paired with dots. Several pieces had kitty cats all over them! And fruit...she loves fruit! And does that one have an ice cream cone on it? She was over the moon. Guess I know what we'll be doing tomorrow.

Olivia has started asking when she won't have to take insulin anymore. I tell her that people are working very hard for a cure and when they find that cure, she won't have to take her medicine. If she seems in the mood for more, I talk about the pump.

At any given time on any given day, I might call Olivia's name, only to be told, "I'm Hannah." Hannah is her alter-ego. Hannah is a mom or Hannah goes to school. Olivia asked me again today about not taking medicine and when I finished my answer, she said, "Well, I'm Hannah. And Hannah doesn't have to take insulin."

Exactly what kind of Southern accent do I have?

"Mommy, what is that?"

"Hmm. OK. Well, that's his penis."

"What's that for?"

"That's how he pee pees."

"Daddy has a penis."

"Yes, boys have penises."

"But girls don't have penises. What do girls have?"

"Girls have vaginas."

"Oooh." (big smile) "Kind of like pajamas!"

Good friends. Big laughs.

 

 

 

 

Marc recently requested a sample Omnipod in the mail. They sent us one which has the real inner workings, so the weight is the same, but rather than insert it with a needle, one can peel a backing off and put it on like a sticker. As part of his effort to get Olivia to let him put it on her, Marc has been showing her videos on YouTube of other children and their pumps.

This afternoon, she asked me to watch the video about Samantha with her.



Lost it. Completely. I was barely able to hold things together enough to make it through and take a break in the kitchen.

It's really important that we act enthusiastic when she meets other children who also have diabetes, children who have pumps, but it can be almost soul-crushing to hear your three-year-old say, "Mommy, she has diabetes...just like me!" as though it were the most exciting thing.

Also soul-crushing? The first two minutes of this video:



No parent should have to do these things to their child. No child should have to endure it.

There is no cure for diabetes. Yet.

We will not be raising money for the JDRF's Ride for the Cure this year, but we are walking in our local walk. If you would like to donate to Team O, please follow this link.

And then she was three...

 

Olivia started swimming lessons last week and I don't think I have ever seen her so excited. She shrieks, she kicks, she is the first person in line to go down the slide into the water. She's never the first in line to do anything, but she loves her some swimming.

 

I was so glad to see her like this. I needed to see her like this, because frankly it's pretty much been a 24-hour scream-fest around here lately. Although the screaming has nothing on the hitting. Olivia has long been a hitter, but things have progressed lately. Today she hit me twice with a closed fist and once in the back. With a broom. Her little play broom, but still. I have been a bit at my wits end as my "Hitting Hurts" speech has not been cutting it.

I don't know if it is new baby anxiety. She's been asking to sit in her high chair and telling me that the baby can't use it. I wanted to talk about her behavior with our nurse practitioner yesterday, but once she saw that O's A1c was 6.9 (!!), all she really had to say was, "Yeah, she's almost three." And I know that it can be a tough age. She's trying to assert some control. Over me.

Despite the broom and the fit about wearing my make-up...and my jewelry...and the one about socks, today did go better than yesterday and I think that is because I was able to keep myself together a bit more. If I can just ride it out, not raise my voice, keep repeating the same thing, she does seem to eventually burn out. It takes awhile; she has a lot of what the book I bought yesterday in a weepy, desperate plea for help calls "negative persistence." Indeed.

With all of this going on, I have hardly allowed myself to think about the baby. Other than the occasional "This poor kid. His sister is going to eat us both for lunch."

Update: What do you know? I already posted this here six months ago. Except I was more eloquent, wasn't pregnant and had a vacation on the horizon. Yikes.