Sunday, January 22, 2012

The aftermath

It is hard to describe how this past week has been. At night, after Lucy has gone to bed I have cried quite a bit. We started seeing a new and wonderful physical therapist at the Clearfield Hospital and she told me some good jthings to do to stretch out Lu's hip flexors so she will stand up straighter when she is willing to put any weight on her legs(she sticks her bum out a lot). We met a new speech therapist at the hospital also who is going to do a feeding evaluation on Lucy to make sure everything is ok enough there. We got a Z-vibe (a vibrating oral stimulation tool) and Danielle helped us get started with it to stimulate Lucy's mouth muscles for eating, talking, swallowing, etc. I got a video called Signing Time and a book called Teaching Your Tot to Sign. I am waiting to hear from the supports coordinator about where we can have an auditory test done that the doctor in Pittsburg ordered. I am on the ball and was about to pat myself on the back when I got a letter in the mail saying Lucy's medical assistance was discontinued! I had just submitted the paperwork online last weekend and I thought that it wasn't due until the last day of the month. So I looked more closely and it had actually been due on the 1st! So I called the assistance office nearly in tears and a nice lady looked it up for me and assured me that they had received my renewal application and that Lu was fine and eligible again. Holy crap! Since chad is still a temp we are not eligible for insurance at his work and MA is Lucy's only option and not even an option for Chad and I. So without the MA none of all of these things that Lucy needs would be possible and I don't read the paperwork right! For crying out loud!

But on Friday we went to our first Kindermusik class with my friend Missie and her little girl. And it was fun and that is the main point of it, just to have fun and be with other kids. It's hard to turn off my mind to the therapy that I feel compelled to do at every chance I get and I still snuck it in there a little during Kindermusik, but I don't think Lucy even knows because to her it is al justnplaying with Mom. As I was just writing this I realized that I need to unclench a little bit and maybe try to not try to squeeze therapy into every single second of Lucy's life. But it is so hard because she is so behind and maybe now we are finding out that she might not ever catch up like we had believed, but I still feel so responsible for helping her to reach her very fullest potential. But I have to just let her "be" sometimes and I have to let myself relax and just enjoy things as best I can. Well, I do enjoy things, but my mind is constantly thinking about all of these things that all of these different people are telling me to do with her and for her to help her and then I feel gulity any time I am not doing one of those things. I guess it is just a process of learning to create a balance and not feeling so panicky all of the time worrying that I am not doing enough. And I know that we do plenty and then some and that we are doing all we can and Chad tries to remind me of that often, I think it will just take time for me to understand that. The more I think about it and write it about it the crazier I feel.

Saturday, January 14, 2012

I believe...

I believe that people have the right to believe whatever they want to believe, as long as they are not hurting others.

I believe in being respectful towards others' thoughts and feelings, whether I agree with them or not.

I believe in a force stronger than us mere humans, but I do not personally believe in calling it by any specific name, or trying to assume I know much about it at all.

Again, I believe in other people's right to call it what they choose and be involved with it however they see fit.

I believe in free will and that people make their own paths and choose their own direction in life.

I believe some things "happen for a reason", but honestly I don't know why I feel that way, and I tend to believe that after the fact, when I have seen something play out in a way that seems like it was just "meant to be".

I believe in science and the facts that are presented in logical, rational ways.

I believe we have souls, or spirits or whatever you want to call them.

I do not believe in trying to figure out what's going to happen to them (our souls) when we die, but I can't bring myself to believe that all we are as humans is simply brain activity, or whatever it is people say.

*As you can see, I have beliefs than are both on the logical, fact-based end of the spectrum, but then I also believe in things for no particular reason, other than I just do, down on the more illogical end of the spectrum.

But again I will say, because I do not think I can stress it enough, I believe in letting people be with their own beliefs, and especially not trying to force your own onto anyone else.

So I obviously believe in peace... Live and let live... Love one another in perfect harmony...

I believe that genes mutate randomly. I don't know why they do it, but I don't believe that there is any predestined, special, cosmic reason for it. And that helps me to feel better. I think that a lot of people feel better a lot of the time if they think of it the other way around and believe that the universe, or god, or whatever decided that there was a reason for things turning out the way they do. But that just makes me furious to think that. It does not help me to be more accepting or to feel better at all. Like there might have been some decision by a higher power to make my daughter's life so difficult? I cannot get behind a thought like that.

I understand that it is more comforting to believe that things are out of our hands and that whatever is going to happen will happen. I will admit that it is comforting to me that there was nothing Chad or I could do to stop what has happened, because I worked so hard to take the very best care of Lucy while she was being made, and then when she came out I have never stopped trying my best. So I know it is not our fault. But none of that mattered because genes mutate...randomly. And of course we don't know for sure that is even the cause of Lu's difficulties, but it's heavy on my mind these days.

I believe in myself. I believe in my ability to make my life what I want it to be and to steer myself in any direction I choose. I believe in my ability to overcome any obstacle.

I believe in Chad. I know, 24 hours a day, 7 days a weeks, every day of every year that he is here for us and that he always will be. And so I believe in us as a team, that anything is possible and we will handle whatever comes our way.

I believe we are responsible and we will make the difference. No matter what, we will teach Lucy to live a full and happy life as we encourage her to think for herself and to let others do the same.

My new hero

So yesterday we saw a wonderful doctor at Children's Hospital in Pittsburg who helped us to get a little closer to an answer about why Lucy has the hypotonia and other delays. His name was Dr. Coffman and he is a pediatric neurologist who specializes in development and movement. He examined Lu and asked lots of questions and asked us to tell him anything about her that we hadn't talked about. He was very thorough and comprehensive and decided on quite a lot of tests that he would like to have done on her which is finally a relief because that is all we want is for someone to bend over backward trying to help us find the cause. He asked if her other neurologist had mentioned a condition called Angelman's Syndrome to us and he had not. The doctor explained it a bit to us and said that at this point, with all that he knows about Lucy and who she is and with all of the other test results, he said that it is what makes the most sense to test for right now in addition to some metabolic testing to determine if anything in that area could be causing the issues.

I will explain briefly about Angelman's, but there is a website called which has a lot of good, valid information. It is a disorder caused by a deletion of part of the maternal 15th chromosome. Common characteristics of the disorder (and the ones that Lucy exhibits) include: developmental delay that is functionally severe, lack of speech, frequent laughter and smiling with an extremely happy demeanor, motor impairments that can include tremulous limbs and jerky movements, an irregular EEG, excessive chewing/mouthing behaviors, and drooling, and constipation. Most of those things occur 100% of the time in individuals with the syndrome and some less frequently. They took her blood and we will have to wait 6-8 weeks for the tests results for Angelman's to come back and the metabolic ones will be back within a week or two. The other genetic condition that could be a possibility is called Rett's Syndrome. The doctor said this one is less likely, but it cannot be tested for until the Angelman's test comes back.

So we do not yet know what the cause is, but we have naturally been doing a lot of reading on the two different disorders and the prognosis for both includes it being a lifelong situation with varying levels of severity from mild to profound, from being able to use some words and signs and learning to walk, to possibly not ever being able to learn to do either. When I worked as an early intervention special instructor I knew a little girl whose parents were told by the doctors that she would probably not survive even a couple of days, if she lived at all and their recommendation was to terminate the pregnancy. When I left that little girl it was because she was turning three and had "graduated" from early intervention because she was too old. Her grandma was teaching her to walk. So regardless of what the doctors say the future might hold, I believe we will decide what Lucy's life will be like.

And now we wait, just like we have been waiting, but with a possible diagnosis. One that we will have to be brave and strong, and rational for. It's going to be a long couple of months.