Thursday, August 24, 2006

The Waiting Continues...

Today we had our ECI consultation for KayTar. Basically, we signed a lot of paperwork and set up a lot of appointments. She has three evaluations (speech, physical, nutritional) scheduled for September, with a fourth (sensory) to be scheduled soon, as well as her neurologist appointment, MRI, and well baby visit. Two months ago, I thought everything was okay. I had some concerns about KayTar's development, which is one of the reasons we switched pediatricians, but I had no idea the depth of the problems we were facing. Her pediatrician had never voiced a single about her development, in the year and four months we had been seeing him. I noticed things here and there that weren't quite right, but because he never mentioned it, I assumed I was being "that mom"...the mom who worries about everything when there is nothing to worry about, the mom who should have the parental controls set to keep her from Googling anything and everything under the sun that could be wrong with her child. When we went to our first appointment with the new pediatrician, she noticed all of the things I was concerned about within ten minutes of being with KayTar. We treated the ongoing constipation she had been experiencing, and set up a second appointment to discuss the delays.

KayTar is eighteen months old. She is still on an all baby food diet, because she cannot tolerate anything thicker than a Stage 2. She loves to "eat" things like crackers or cookies, but she spits out all the pieces. If a piece sneaks by her, she gags and throws up. She cannot even tolerate table foods like mashed potatoes. She is not walking or standing independently. She only started crawling on her hands and knees in the last month. She is currently only saying two words, "Go." and "Sit." She had more words in her vocabulary, but has lost them. She used to say things like "Mama." "Dada." "Bubba." "Dog." "Diaper." but she doesn't anymore. She has just recently learned to play with a few of her toys appropriately, things like her Dino Ball Drop and her stacking rings, instead of just mouthing the pieces or banging them together. She cannot follow commands, ie. "KayTar, come here." or "Roll me the ball, KayTar!" She is still very much an infant in a toddler's body.

On top of the developmental delays, she has begun having seizure-like episodes. She had her first one in May, and we were unsure of what was happening. Her previous pediatrician tested for meningitis, which came back negative, and never followed up. About a month ago she had a second episode, and then a third, two weeks after the second one. They seem to be progressing.

When I walked into that second appointment with the new pediatrician , my whole world changed. There was so much information to absorb that it just wasn't possible...for days after, I kept waking in my sleep, remembing bits and pieces of what she had said. "The delays are significant and we have to find the answer." At this point we are still waiting. We have had blood work taken and results returned. It is not chromosomal or metabolic. We had an EEG while we were in the ER for her third episode. It came back abnormal. I asked our pediatrician what our possibilities were at this point, and she said physical problems with the brain. It could be a structural defect, perhaps something didn't develop right prenatally, or it could be a tumor. We don't know. If the MRI is inconclusive, we still won't have an answer. September will be a long month.

After that appointment, I quit my job. I am now a SAHM, or rather, KayTar's administrative assistant. I keep her calendar and a notebook filled with contact names and phone numbers, along with appointment locations, instructions, and times. I am here to spend all the time I can with KayTar, and my older son, BubTar, and to keep things as normal as I can for both of them. Its amazing how one moment can change the entire course of your life. I can handle it changing my life, but I don't want it to change the lives of my kids. They deserve to enjoy their childhood and not have to worry about big things like this. I am thankful that this experience has taught me how to live in the moment. I don't spend my days fretting over the future, about things I can't control. I spend my days loving these kids and soaking up every moment and memory I can with them, because in the end that is all that really matters.

3 comments:

Raehan said...

My heart goes out to you. Keep us tuned, okay?

Psycho Kitty said...

What Raehan said. This might sound bizarro, but there's a lot of support in Blog land. I hope it finds you, honey.
Thinking of you,
PK

Juris Mommy said...

After reading what you and your family are going through I feel a little ashamed of everything I have been writing about in my blog. While I worry about whether the other kids at school will like my boys and whether I have passed a silly test, you have much more important things going on in your life. You have really given me something to think about.