Wednesday, November 11, 2009

Further Thoughts on Plan B

You should see Miss Ella, strutting all around with her extra-cute hair cut and new glasses. Her purple glasses had been abused and battered more times than not and were forced in to an early retirement. I'd stuck with the same frames for her for the last 4 pairs - in purple, of course. It was her signature. When she was a baby, people would stop us and say "I remember her from the glasses!" It was a serious step-up from "I remember her from the feeding tube!"

And now she is sassy as ever, with transition lenses and all. It's the perfect distraction to keep people from noticing her recent weight loss. She was getting so big, growing so fast and then in an instant, she is swimming, hiding behind the mass of fabric.

We decided several weeks ago to try and wean her off the feeding tube. Her 26lb self had made it to the 25% percentile. I was more than overjoyed. But, it was time.

Her feedings skills have drastically improved in the last few months. We are not sure if it was our prayers or her tongue or what, but this kid can eat. In her former eating life, we'd give her scrambled eggs because they are good for her and she likes them. But, after chewing them for a while, she'd leave us a pile of a quiche-like substance. She'd get a napkin and wipe out her mouth, take a drink of water and eat again. I try to give her space when she eats, let her eat wherever and whenever, not worrying about the mess till the end. But, it was hard not to cry and stress as she spit all her precious calories and nutrients on little piles on the floor. And so as her skills increased, we knew the Pediasure must decrease.

Week 1, she had the flu. Week 2, she made up for week 1. Week 3 she didn't seem quite so hungry. Week 4 was a weigh-in. I've been bracing myself for the weight loss she would experience this time around, but knew it was the cost of doing business. We've controlled all her gaining so far and now we are letting her take over.

Almost 2 pounds. Crap.

But this does not deter us from trying, as "this is to be expected." But on days like today, where she refused to eat, I found myself fighting with her about food. And when the anger wears off, I am sad and anxious. Ella just has to figure it out, eat like a normal 2 year old and her parents have to let her. (that's the hard part.)

First Day of School - August 2009

In other news, my kids both started preschool this fall and are in love. The weekends are no longer fun, as they don't include school. Owen has so many friends, has learned so much and can almost write his name: NOW.
Owen "Now" Liskey - Age 3, School pic 2009

Sometimes I feel like my name is NOW, too.

Ella has a little harder time with telling me about what she did at school today. I'm not sure who her friends are and if she can say her names. I do know that she is loved by her teachers and the kids in her class make her feel so special as she enters the room. It has been a good experience for her so far.
Ella Liskey - Age 2.5, School Pic 2009

But, her teachers have told me that recently she has become self-conscious and stopped attempting to talk at school. She doesn't want to say anything "wrong." That broke my heart. These kids are the exact same age as her, but are talking in complete sentences. It's hard for me not to notice when I'm around a talking toddler who is younger, but talks better. I try so hard not to compare or get mad, but it is damn hard. I was a bit surprised that she noticed, really.

And so I rushed her back to the dentist to see if she all-of-the-sudden had a frenulum that could be snipped to free her trapped tongue, but she didn't. And I've been asking around, calling, stressing about ways/contraptions/procedures to make her tongue grow, but there isn't any. And I even checked in to that medieval torture they do down at Riley Hospital to see if I would have done that when she was little if it would have made a difference and they don't know. Thankfully, her SLP slapped me around a bit with that one and reminded me that I'd never have forgiven myself if I'd let them sew her tongue to her lips for a couple years. She was right.

I just want to drink coffee and yell out the F word. Lots of times.

But, then, when I feel like I'm going to have a M-E-L-T-D-O-W-N, this strange peace falls over me like a blanket and I remember that I am not alone. God still hears and sees, even if I forget to pray. He still knows my heart and my worries, even if I don't say them aloud. I often have to remind myself of the miracles we have already seen, like the healing of Ella's eyes. For further proof, her eye doctor said last week, "I can't even believe these are the same eyes!"

Plan B.

If He can do something impossible like make her optic nerves grow, why can't he stretch her tongue just enough to grow in proportion to her body? Plan B is the new Plan A.

My heart gets lighter when I share my burdens with you. Even if you don't know me, thank you for reading. Thank you, if you do, for praying.

I think we need to be better at sharing each others burdens, helping each other through the muck.

Like MckMama's baby Stellan, who flat lined and almost didn't make it this week, you should see her prayer map of where people all around the world are praying. Carrying that burden with her.

And like Olive Hope, a sweet girl belonging to friends of one of my favorite friends, who was born premature in Thailand. There are many times when she shouldn't have made it, but has pulled through. Her parents, Rusty and Lynnette, are missionaries in Thailand. There are many people that have been helping to carry their financial burdens, as their health insurance has ended up being more of a bother than a help, capping at $25,000! Those of you with kids who were in the NICU know that only covers a few days! But, some good Samaritans have donated money and are paying for a commercial flight for them back to the states--with an entire team of medical personnel on board! That kind of love and generosity is unbelievable! But, they still have many financial needs. Check out their auction blog or join their Facebook group: Praying for Olive Hope.

Taking on a small piece of someones burden costs us nothing emotionally, but for the family you help with prayers, gifts, money, time, meals, etc, it is the world. I know from experience, of course. It's what love is about. It helps keep the world in one piece.

It may be one ugly, cracked, glued-all-over, mangy looking piece, but at least it's one piece

6 comments:

Jenj said...

awww...angie. My heart breaks for Ella & your family. Keep your head up and, even tho my problems with Will are different, I tend to drink coffee and cuss a lot too :)

Sam said...

Oh, the good Lord keeps you busy, sure enough! It's great to hear that Ella is moving off that feeding tube and starting to own her eating.

Owen "NOW" Liskey . . . yeah, that's Mr. Big Personality, all right :-D

Still Learning Life said...

That was really good. You're right, we all have our own struggles. Some might be greater than others, but chances are, someone out there is going through something just like you. When you reach out to do something for someone else, no matter how small, it seems to somehow help heal your own pain or struggles a bit as well as someone elses.

Jessica Fuller said...

Love the part about Owen's name. Zane had name issues when preschool first started, too. He wanted his to be zanE. Or maybe you already read about that? Sorry.
Anyway, I don't think I've even met your kids or "seen you in action" but sounds to me like you are an awesome mom! Such a great example to the rest of us (even if you do cuss) HA!

Rebecca said...

Wings of Hope (I think they are based in Missouri) is the name of a charity that transports sick children. I don't know if they can or on schedule to help the family in Thailand, but just in case. Now you know.

My son is 2 1/2 and doesn't say much. It breaks my heart to hear other parents having actual conversations with their 2 year old kids and mine has problems with "Want Juice". He's had a developmental therapist and speech therapist since he's been 13 months old. I've been fighting like crazy to get him physical therapy but his crazy orthopedic says it's too soon and he's too fragile. Doctors!!

Rebecca said...

His orthopedic won't approve physical therapy and without a prescription from the doctor for PT the early intervention can't do it.

He's about to age out of First Steps. We are in Missouri.