Tuesday, May 31, 2011

madie and her hands...

There are few frequent things that Madie does with her arms and hands allllot..kinda wanted to share some of the things..maybe there is another kiddo who does the same things and we can put our mama heads together and maybe come up with anything interesting..yeah? this first one I call "Ooone Question"

this one kind consists of her pointer and thumb in mouth and other hand just comming in for more..sometimes produces impressive hand fart.

This one is the full arm twist with one hand kinda "warmin up" the thumb I have tried to twist my arms so and it kinda hurts! She is very hyper flexible due to her poor muscle tones...:( But the positions she gets into are sure pretzel like!

This one also produces impressive hand farts as well...a very common one along with the arm twisters..

then this is just cutie patootie in the chair on the front porch. She will also put her hands behind her head and sometimes rub both ears or just one ear as in this case..She will aslo put her hands behind her head when she is sleepy..she sleeps like that sometimes.
I pray that Madie will catch on to anything useful with her hands...they are such tools that you and I take advantage of and simply USE when we do things..but in my madies case that "simply USE" just does not register. Along with many other things. Its one of the many frustrating challenges that we face with madie. along with her lack of eating, her lack of physical abilities, being non verbal aside from squeals, loud screams, bbbbbbbb's, Bah bah bah, Ah Ah Ah Ah, huffy puffy noises, crying and wining, cough noises, hmmm cant think of others but you get it. Oh and Giggles. She can sure Giggle.
I have mentioned alot that we never really had a firm Diagnosis on Madie...lennox gaustat? West Syndrome? Retts? (although I have not seen her loose any skill..such as sitting or catching her fall when she topples over...but no new recent skill eaither...) Do we just label her as "Seizure Disorder" have JUST seizures done all this and made madie the way she is??Am I supposed to just sit back and think that.."oh if the seizures go away she will catch up like crazy" And just Wait? and lug around a soon to be FIVE year old?? I want sooooo badly to donate her Kimba Spring Chair to a family that needs it...that or melt the thing in a huge fire! Maybe donating would be better huh? that bad boy cost almost 5 grand!! We were blessed that insurance covered most of it and Birth to Three covered the rest! But gosh if there is a young boy or girl who is being wheeled around in some pice of crap stroller cause insurance is being jerks...well here ya go! But unfortunately my Madie still needs it and she is already getting allllmost too big for the seat that is on it. (you can interchange the seats on the wheel bases..) I dunno just throwing thoughts out there....Im probably rambling too much. just kinda lost in my thoughts and concerns this morning. I try not to think TOO hard about Madies future I just TRY to take one day at a time.
Saw a little girl at the grocery store looking at the nearly dead flowers they were selling and she had a moment of sniffing them and made a face...LOL her mom calmly told her to come on into the store to hurry up...that little moment almost made me cry. just those little exporing moments of little girls. so cute. I long for that explorative child who would drive me crazy and keep me movin.

HAd an Ok Memorial Day weekend...really wanted Hubster to take the kiddo while I whisked away to the cottage to TRY to relax but he was swamped with school work and said he would get nothing done if I left her...sigh. A part of me wanted to be super selfish and tell him that it was not my fault that he left allll this work for the BBQ weekend that I so desperately wanted to get away too...But the other part of me just sucked it up and took her.
It was really really hot. Like sit in your chair and sweat hot. Madie was a grump most of the time unless being pushed in stroller or carried. I also think she had to poop as well... which can bring on some miserable times. I finally got her to bed that night and I went to bed too I was so drained. Listening to the sounds of the others hanging out but was so tired I did not care.
But But BBQ was delicious! We had some great eats. :)
It was just Hot.
Summer is here for sure in CT. We have 19 Days till we take our trip to Outer banks too! Madie has a Neuro Follow up the week before and school ends on the 15th.
I guess that is all for now...my brain is done spitting out thoughts. Any thoughts on the hand things would be great :)

1 comment:

Dawn said...

Taylor also has a lot of different hand movements. She has one that a bus driver named "playing with butterflies". She sort of puts her hands up in front of her face and wiggles her fingers back and forth. It's kind of hard to describe.

They diagnosed Taylor with Lennox-Gastaut because she had the "signature" seizure brain wave pattern. I know the seizures can cause a lot of delays and lack of development, but with Taylor also having the Trisomy 9p, it's hard to say what is seizure caused & what is caused by the Trisomy. I do know that there seem to be a lot more development in some of the kids with just the Trisomy 9p & no seizures, but who really knows what's what?

I know that sometimes it's just nice to have a diagnosis so you can at least sort of know what you are dealing with.

Thank you so much for your sweet comments on Taylor's blog. They are much appreciated. Can sorting is still one of her favorite past times. *smiles*