It's the little things that count

I remember the first time M clapped her hands. It seemed like it took her forever to accomplish the goal. I think of this sweet, short moment a hundred times a week- when I'm pushing her to do more, when it seems it could be years before she ever walks on her own, or when I feed her each meal, longing for the day she uses the spoon all by herself for each and every little bite. Well today, she has given me another little moment to add to my catalog of memories that keep me going when it seems like the world is off tilt. Today, she drank from a straw!

For the first years she had a feeding tube, so she only had a few sips from a cup now and then. She never drank from a bottle. Nurses explained she just didn't have the 'sucking reflex' most babies are born with and therefore wouldn't drink from a bottle. I think it is most likely because her nasal airways are small and she is unable to breathe through them. It's not pleasant trying to suck from a bottle and hold your breathe simultaneously; swallowing and breathing at the right times so you don't aspirate or choke. No wonder she didn't want to eat or drink anything. The doctor told me most babies are naturally 'nose breathers.' He was amazed at how well she did breathing only from her mouth. But before she could leave the hospital, they wanted her to have a trach placed to give her a second path for breathing, mostly for safety reasons. I had a lot of mixed feelings about M having a trach. Most of them came from ignorance and unfamiliarity of knowing anyone with a trach or anything about living with a tracheotomy. Most of all, I was afraid she wouldn't be able to make sounds- and for a blind infant, this was a big deal. If she couldn't see and couldn't talk, how would she ever learn to express herself? And even if she could eventually have the passie-muir valve that would allow her to make sounds, would she even want to talk by then? What if it was years before she was ready for the valve? What if the early years of not being able to make sounds, made her not want to communicate much at all? I was afraid it was going to make her world that much scarier... that much smaller... But I had to trust the doctors. It was the only option they said for the time and I wanted to take her home so much. I wanted her to sleep with monitors beeping every minute. I wanted her to cuddle up in my arms, safely swaddled in her blanket and rock her to sleep each night.

There were a lot of "what if's" in the first days of M's precious life. I wasn't use to not knowing and being out of control of something so important was killing me. I wanted to know every detail of every little thing. I said the whole experience must have been God forcing me into learning about medicine. Before M came into my life, I never wanted to be a doctor or a nurse, or a biologist or anything related to medicine. She had the tracheotomy days later and within a week, we were on our way home to stay- besides the numerous doctors' appointments we had for weeks following. We brought a car full of medical equipment and supplies with us, but we still slept in our own bed every night we could.

M had the trach removed in 2007 when she was 2 1/2 years old, about the same time the feeding tube was removed. It was a year of progress! Today she still struggles to eat and doesn't chew food like most of us. But she is learning and progressing. Drinking from a straw may not seem like it is even important for some, but for M it is years of practice and learning tolerance of having something foreign in her mouth. She hasn't mastered the task yet but I know she will soon. Just the idea that she knows how the straw works by sucking on it to get the milk to come up just right, not too much or too fast, shows how much she is learning. I'm praying this is just one step closer to learning to eat solid foods that I don't have to puree first. I'm so proud of you M! You are the sweetest girl in the whole wide world!

"It has long been an axiom of mine that the little things are infinitely the most important." - Sir Arthur Conan Doyle

A little scare and some hope...

Today as we're just sitting on the couch, M feeling her braille letter tiles on her magnet board and me close beside her browsing away on my laptop, I hear her start to gag. My first thought was that she is choking on what would most likely be a small 1x1inch square magnetic tile, way too big to go down her little throat. She would sometimes put a corner of it into her mouth and chew but never has she attempted to put the whole thing in her mouth, nor any other object as far as that goes- including food! So all I could think is that she must be sick. She just drank two cups of diluted strawberry milk; maybe the box was expired and the grocery store didn't pull it off the shelf, as I had just bought them.

I picked her up and moved towards the bathroom. She was still gagging but was getting air so I figured it must be she was just sick. We stopped once we were off the carpet and onto hard floors that would be much easier to clean. She gagged and vomited more, with a little gasp for air. I stuck my fingers into her tiny mouth and felt at the back of her throat but didn't find anything foreign. I kept thinking "what am I going to do?" Were we going to need to go to the ER? She then acted as though she was finished gagging, but scared of what had happened. She has vomited many times in the past but not recently. After getting ourselves cleaned up, I went back to the tiled area to clean it too when I saw a little braille magnetic square with teeth marks on one edge.

I don't know what possessed her to finally try to eat a solid object after five years. Maybe it was an accident and she didn't mean to swallow; but a little piece of me is encouraged by the thought that maybe she is ready to bite and chew real food! Of course, we'll have to hold off on giving her objects that small again unless we're watching her every second. Most children her age know what they can eat and what they can't. M is different because she just never went through those stages in life when most children learn chewing, swallowing and what's not food. We didn't worry about it in the past because we couldn't ever get her to put anything in her mouth. All her meals are practically pureed in the blender before she eats them. Her little tongue knows how to sift out the tiniest piece of carrot or pasta. We can occasionally talk her into biting into an apple or powdered donut, but even then she immediately spits it out.

It was a huge scare and I'm sure most parents go through something like this, but I pray it never happens again. We always watch her closely and have never had a scare like this. Now that it is over, I try to look at the bright side. Sometimes the little things in life can give you the brightest day. And I am always thankful for the little things.