Tuesday, September 30, 2008

Food Triumphs

We're really riding a high in the food progress department here. As mentioned the other day, Eva is eating new things. Yesterday, I was eating a salad and she said, "Mommy? Eva try salad?" So I gave her a bite of lettuce and stuff on my fork. And SHE ATE IT! My god. Then, if that wasn't enough, she asked for more. She probably had 8 bites before she was done with it.

Tonight, she had a broth-y soup with curly pasta, beans and carrots. I've learned from a Speech Language Pathologist (SLP) that this is the most complex texture to learn. Kids (babies and toddlers in most cases) learn to eat purees first, then solid finger foods. After they master that, they can combine the two, like a broth-y soup with chunks in it. It's liquid, but there are surprise non-uniform bits to chew.

I honestly felt some days that we'd never get to this point. Just like it felt like she'd never want to/be able to walk on her own. After working every day for three and a half years, it's easy to get discouraged. Think about it. Three and a half years. Every single day since the first day of her life, we have been struggling with feeding. She had a naso-gastric tube (feeding tube thru her nose to her stomach) for the first three months of her life until she was able to drink enough milk from a bottle to sustain her. Learning to eat, drink and tolerate textures is not something you can take a break from for a few days and come back to when you're not feeling frustrated, despondent, hopeless, worn out, at a loss, unable to see the goal, emotionally exhausted and tired of dealing with these struggles over and over and over and over. For Eva, the textures of foods have been the issue, plus the normal not-wanting-to-try-new-things that most little kids have. She's been able to manipulate a spoon/fork for some time now and has had a good chew, tongue movement and swallow technique for months.

So we keep at it. We remind ourselves regularly to not make mealtimes stressful, which is very VERY hard sometimes. We adhere to a mealtime routine and give her choices to feel more in control--which bib? which placemat? water or milk? what kind of cracker? We have her stand on her chair and help us cook, even if there isn't much she can do, just to keep her involved. We talk about our food: what it tastes like, the texture, the temperature, the sign(s) for it, where it comes from. I tell her everything that is in a meal, down to the spices and herbs. We give her some bit of what we're having but we don't make her try it or say she has to finish her plate. More recently, we started to talk about being hungry and full and what food does for our bodies. All of these things we've learned as we've gone along, after things have backfired and we've found ourselves struggling over every single bite.

This summer, our wonderful SLP gave us the idea to give Eva one new thing at meal time (we started with blueberries because we'd just gone blueberry picking with her) and she had to pick it up, kiss it goodbye and put it in a bowl. The idea being that she'll get a bit of the taste/texture/temperature on her lips, feel safe with it and eventually put it in her mouth. Some days she wouldn't even touch the new food, even though she knew the routine and would say it. After getting used to kissing it, we moved on to licking it and then putting it on her tongue before putting it in the bowl. It seems tedious because it is tedious but breaking things down into tiny steps is what she needed. And it worked. Things are coming together in her body and in her brain and she is making huge leaps. It makes me want to weep with joy and relief.

I am so grateful for the outstanding Speech Language Pathologists, Occupational Therapists, Physical Therapists, Teachers, and other parents who have educated us on how to help our girl and listened to our frustrations and encouraged us to keep moving forward.

I hope that I can provide encouragement and hope to someone reading this who is struggling to get through one more day.

Our Trip to the ER

Well, I guess there's a first time for everything. Eva had her first trip to the ER for an injury yesterday. She's alright now but it was a traumatic experience for both of us.

She and I were leaving the PT waiting room yesterday morning after therapy. A helpful little kid was closing the waiting room door behind us. I had hold of one of Eva's hands and the other hand was in the hinge side of the door jamb, which I didn't realize until she started howling when the door was almost closed. Her ring finger was a mangled bloody mess from the last joint to the tip and she was screaming. I was panicking and crying and shaking, too. The CNP staff put a bandaid on her finger to hold things together and I calmed down enough to drive home. I called Jerry and had him call the doctor's office to see if we could get her in right away. They were unusually booked so we three headed to the ER.

After x-rays and too many people looking at her finger (in her loud opinion) it was determined that her finger was NOT broken; that the skin from her last joint to the nail bed was ripped off and a bit of the root of the nail was pushed up. She'll probably lose that nail and the new one will likely grow in with ridges in it. There wasn't much they could do to repair her finger so they wrapped it up with a lot of gauze and sent us home.

The ER staff were wonderful and we didn't have to spend a lot of time there, just over two hours. Eva's highlights were being helped by a dear family friend who works there and seeing the helicopter land. I hope that's what she remembers from the experience. And to not put her hand in the door jamb again.

Saturday, September 27, 2008

3 New Tricks

It's an energetic fun time in our house right now. Not only has Eva's speech skyrocketed since school started a few weeks ago (she sometimes speaks in short, complete sentences), but she has three pretty cool new tricks.

1. Suddenly, she likes to eat whole pasta and vegetables with some kind of saucy/buttery stuff to hold it together. This is a MAJOR accomplishment for a kid who didn't want to eat anything wet if it wasn't smushed. And she's eating it with a fork!! Chewing, swallowing, no choking and asking for more.

2. Eva's been arranging things (cups, crackers, blocks) into the shape of a face. "Nose...eye...eye...ear...ear..." What a huge thing to be able to visualize something in her head, and manipulate things to make that thing in front of her!! Genius!

3. Now, this one is HUGE HUGE...Eva is W-A-L-K-I-N-G!! She's been taking 4-6 steps between people for a few months, and now she's going all over the house. Like, from the bookcases, around the couch, steps over a toy and goes to the table! All on her own! Or down the hallway, thru her bedroom door, around some clutter and over to her bed! From the car, thru the garage to the door to the house! Sure, she still walks with her arms cocked out to the sides at odd angles and I try to not hold my breath watching her but I must say, I'm am beyond giddy. This is such a big deal. I'll post a video of it when I get one.

Monday, September 22, 2008


I heard this story on All Things Considered (NPR) this afternoon while I was waiting in the car during Eva's speech therapy session. Not only did the details this man expressed ring to familiar and true to me and our experience, but I thought: the more stories of families raising children with special needs that are out there in the mainstream media; the more citizens are educated and enlightened about the challenges we parents face and the many ways our lives are just like theirs--the less I feel alone.

I feel more understood as a parent, and more accepted as a family. This is what it means to be supportive of our family and those like us. We are all families--special needs or not--working as hard as we can to raise beautiful, compassionate and intelligent children.

Thank you for taking the time to educate yourself a little more and to share this with the people in your life.

Saturday, September 20, 2008

My Summer Vacation...by Eva (as told to Mommy)

Well, now that the weather has turned soggy and dark and I'm back in school again, it's time to reminisce about my summer vacation...

Mommy and I spent several days visiting Uncle Tommy at the beach. It was like a big sandbox and I loved to play in it and watch the waves...I helped Mommy tend to her roses...and rode my bike in the driveway... I took my very first sailboat ride. I liked it pretty well and want to go again...I was very busy helping Mommy cook in the kitchen with my "stand up" chair...We had our yearly visit with a lot of family from my Grandpa Moen's side. Mommy's cousin and kids came all the way from China! My Great Uncle Allen is a lot sillier than people think he is...Mommy and Daddy took me to watch a softball game. That was the greatest thing ever! I LOVE sports!! Oh! And the Olympics were on TV! I LOVED the Olympics--especially swimming and diving...Mommy bought me a new flower sprinkler so I conducted many physics experiments with it in my pool...Mommy and I had a picnic at Hovander Park...and she taught me how to use the camera. See? Daddy and I went with Mommy to get another tattoo...I figured out how to use my stool to reach the light switch!And I played at the park with my friends; visited my Papa, Lala, Grandma, Eric, Uncle Brent, Aunt Caasi, Cousin Porter; learned how to say my name and my Mom and Dad's names; and learned thousands of little things about the world. AND, most exciting, I am walking all by myself! My record is 13 steps, unassisted. I still prefer to scoot, but I can stand up from the ground and walk and can creep around furniture. I'm still a little nervous about it all, but everyone gets really excited when I do it, so I guess I'll keep doing it!

I'm a busy little girl and I had a busy, fun summer. Now I'm back in school and I'm a constant chatterbox and curious little girl. I hope you had a fun summer, too!