Saturday, April 23, 2011

Still Progressing

Well I'm happy to say that M walking last week was not a fluke! She has continued practicing every day in the living room and is getting better. She is attempting to stand up independently, without holding on to anything. She has been trying this for a while now, but I think it is just recently that she has realized what exactly it is that she is trying to do!

Mealtime is going so much better lately, as well. I have started bringing up eating about 30 minutes before it is actually time to eat. This is giving her time to think about it and know that it is her decision to eat instead of being forced. Even if she isn't ready a half hour later, I let her wait and tell me when she wants to eat. I just have to be careful not to let her fill up on liquids, as she would do this all day long most days given the chance! Her favorite meal lately has been my own adaptation of my favorite sandwich which we call "turkey guacamole." I simply put a few slices of quality turkey lunch meat, an avocado, a small ripe tomato, and a little fresh chopped cilantro in the food processor and blend til it is almost a puree, but still thick. I often had organic baby cereal- rice or oatmeal- to thicken the mixture even more. M likes a thick, but smooth texture the best. We are slowly adding a few more textures and slightly larger chunks of food every couple of weeks to slowly transition her into learning to chew solid foods. We are also working with chewy tubes to practice the chewing motion of her jaw. I try to make it into a game so she doesn't feel like she is always working so hard! Sometimes it seems like everything is work for her, besides watching TV or drinking her cup.

It often makes me sad to think that maybe she isn't truly experiencing being a kid. Only adults should have to go through the trials and tribulations she has had to deal with in her first few years. But then I see her smile from ear to ear, and hear her laugh and giggle for no apparent reason; and God reassures me that she is happy as can be. My heart quits tugging and mind goes back to work figuring out how to give her the world.

Monday, April 18, 2011

First Steps - MISS M IS WALKING!

Yesterday was a day I will remember forever. I've written of this kind of day before. But yesterday was extra special because it marked a huge milestone for my Miss M! Yesterday, she walked. I wanted to write this last night, but am now remembering why I didn't - tears of joy!! I have waited years to scream this for all to hear and to celebrate with us. M is six years old now. It has taken her quite some time to get where most children do rather quickly. But we all knew she could do it and last night she proved it!

I cannot do justice in describing how I'm feeling inside. In some ways, it is almost surreal. I haven't stopped smiling since about 6pm last night. My dreams were filled with her laughter and giggles of knowing she made such an accomplishment. Before it was always dreams of what it would be like when she finally did take those first few steps all on her own. But now it is reliving those moments over and over again. It would make me happy to have that same dream night after night. I could never be upset or sad again. And to be honest, I think it will take quite a lot to knock me off this pedestal of happiness I'm on right now!

I could try to describe it to you, but again, my written words would not do justice to the miracle that I witnessed last night with my precious little girl! With that, I share this video clip with you! Enjoy!

Sunday, April 3, 2011

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