Monday, November 26, 2007


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Monday, November 19, 2007

What to do?...

OK... so Friday was Evelyn's MRI. The procedure itself went well. She was sedated and slept through the whole scan process. Afterward 2 people came in to draw the blood. They tried both arms and only got 1 tube of blood; she ended up blowing out a vein. They had to call in an IV nurse with a special needle to try again. We got Evelyn back to sleep and then the IV nurse showed up. Now just to let you know... they needed to fill about 10 tubes of blood for the 12 tests that were ordered from 2 different doctors. The first people got 1 tube and after 2 tries in both of Evelyn's ankles the IV nurse only got 1 tube! I refused to let them poke her again! She was sedated but would wake up and cry while they were tryng to draw the blood. Poor thing was so hungry and tired too because they made her fast for the MRI. No idea why! So now I have to take her back to the hospital to have the 12 blood tests done, and this time she won't be sedated! I don't know if I can handle that. I am starting to question myself. Is all of this really necessary? Maybe she is just a happy baby that doesn't want to walk? Maybe she will talk one day. She's in therapy. Perhaps I should just let the therapist do what they can to help her. I don't want to traumatize my child anymore than I already have. I'm just not sure what to do! The MRI did come back with normal results. So thats one less thing to worry about. I have a call into her pediatrician to see if maybe we can take a look at her legs physically. Maybe by a pediatric orthopedic who can determine if there is a problem with her legs. I always said her one leg seemed weak or less invlolved than the other. When she crawled at 12 months she would push with one leg like a sea turtle and drag the other behind her. So maybe there is something wrong with her legs like I said months ago. The doctors haven't really addressed that issue, they mainly focus on her brain, sensory issues and speech... along with her lack of walking. But I just don't know. Doctors don't know everything and sometimes things get overlooked. But I hate to feel like a hypocondriac too. God I hope I am doing the rights things by Evelyn. Will I ever know for sure?!?!

Thursday, November 15, 2007

Evelyn's big test tomorrow

I'm a bit nervous. A bit anxious as well. Friday is Evelyn's big test day. We've been trying to get this test scheduled for 2 months! Tomorrow morning... bright and early she will finally go. Part of me worries if I am doing the right thing. What if something goes wrong? But they do these tests all the time. It's just a MRI; no big deal. But they have to sedate her. We're not using anesthia (sp), just a liquid medication that will make her sleep. They will do the MRI scan and then draw blood. The neurologist has ordered 4 blood tests and her pediatrician has added a couple more to the list. She should wake up from the test as if she took a nap. The nurse told me she may act wobbly or drunk the remainder of the day. I am not looking foward to watch her body lay so still on the table of that scanning machine. And of course the fear... what if she doesn't wake up?!?! OMG! I'm getting more nervous than anxious now. The anxious part wants to know if these tests show anything conclusive. Is there a medical reason why her development is so slow? Is there something in her brain or body that is keeping her from walking? And why won't she talk or form letter sounds? If these tests come back negative then we only have the road of therapy ahead to help her. But if there is something more we can do to help her... than I want to know! She is my baby. My little angel. I want her to have a full, happy, productive life. For that I need to do anything and everything within my power to help her. So I will brave the giant MRI machine with her. I will hold her while she drinks this nasty sleep medication. I will comfort her as she drifts off to sleep. I will kiss her boo-boos from the bloodwork. And I will insist on fast results!! I hope and pray everything goes according to plan tomorrow.

Wednesday, November 14, 2007

Blogs of the past...

Sometimes you like to look back on the past. Things you have done, thought or felt perhaps years or months ago. Well, as some of you know this not my first blog. Nope... I have gone down this road before. So I thought that I would share my previous blogs with you.

The first one was started before Evelyn was born.

And the second, more recent, is from myspace.


Tuesday, November 13, 2007

The things we do for love...

I hate motorcycles. Always have. My Father drove a Harley for years and I never had the desire to get on and go for a ride. Even my brother, when he got into the whole motorcycle thing. I was just always afraid of them. Afraid of the danger. I had visions of my head splattered all over the pavement... not a pretty picture! When I was a little girl I witnessed an horrific motorcycle accident and I think that is where my fear started. It didn't help when I received a call at work one day from Nancy at Wuesthoff Hospital (and yes I remember the conversation in complete detail) telling me that my brother had just been brought in from a motorcycle related accident. I never want to relive a phone call like that again! My stomach sank and I barely remember sitting down, but luckily the chair was under me. After nursing my brother back to health for several weeks he again rode a motorcycle. I could never understand the power these things held over people. What was the attraction? Now you can imagine my surprise when my husband tells me he wants a motorcycle. Over my dead body!! I made every point in the book about we have young children that need their father, we can't afford an accident or for him to be out of work. Not to mention the added expensive of a third vehicle in the household. I was very clear with my arguments but nevertheless, one day he went and bought a japanese, rice-rocket, sport bike. I was livid, to put it mildly. I threatened him not to come home, that it was "the bike or me". He reluctently agreed to sell the bike. I'll admit, it killed me to see him so miserable. This bike made him so happy! Why? It was a machine. It couldn't provide him love and comfort. It wouldn't keep him warm at night. But he would just go out riding for an hour or so. He was so peaceful and happy while on that thing. For 3 months we tried to sell it. Listed it in the cycle-trader, posted fliers and used word-of-mouth. No takers. Lots of people wanting to trade or make payments, but no... I wanted it gone. I wanted the headache gone. I wanted my husband back. I felt this machine coming between us. He made new friends and wanted to go riding with them, where did that leave me. Home with the girls, thats where. He would beg me to go ride with him. I was too scared. Then he threw out a phrase I could not argue with. "Don't you trust me?" Well of course I do. So one day I got up the courage to ride down the street with him. Just around the block and back home... THATS IT! When we got home I said... maybe just down to the end of the island and back. I guess I kind of liked it. It took a couple more weeks until I braved going on the main roads, but I did. And in going on these little rides with him I realized something. I discovered why people enjoy this so much. When you're on a bike you feel so free. Almost like flying. The wind in your hair. Surrounded by nature. Just me and Russell on the bike and feeling so close to each other. Very intimate in fact. I'm still scared of the "what-ifs" and the visions of body parts on the highway still pop into my head, but I love my husband. I love him enough to put my fears aside and join him in something he loves. Because it makes him happy. He even has both girls falling for this motorcycle thing. Keilani begs to go for ride on it to the bus stop and Evelyn likes to play with daddys helmet. This giant piece of metal which once almost destroyed a marriage has wormed it's away into the affections of our family. Who knew?!?!

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Monday, November 12, 2007

Sticky note hell...

Those little yellow squares of sticky paper have become a staple in life for me. Much like the human body needs food and water to survive... I need sticky notes. As I sit an type this I am looking at 11 of these yellow squares. Each one lists an appointment for each of my girls. They hang on either side of my computer monitor in chronological order. After each appointment I take that note down and move the rest up into place. The next in line for tomorrow afternoon, followed by one for Wednesday morning and then Friday morning. I have become a slave to these sticky notes. If there is something I need to remember, it has to be written on one of these note pads. Even something as simple as a birthday needs to written down so I don't forget to wish someone a happy day. I carry them in my purse along with a pen so I can write notes down on the go. My life used to be more easy to manage than this. I could remember distant relatives birthday's and anniversaries with ease and now.... I am lucky I can remember to breathe at times. I'd like to say it's "old age"... but I am not old. I guess it's only due to the fact that my life has just become more complicated over the years. Especially with Evelyn's many appointments, it seems she must meet every form of specialist on the planet and have a million tests done to her. Plus the weekly therapy sessions... it's enough to drive a person insane! And yes... I think it's starting to happen.

First post....

You have to begin somewhere, right?!?!

I'll have to be honest with you.... I don't have much experience or time for blogging. But I am trying to look at it as therapy for me. I work full time, have a husband I barely get to see, 1 daughter in kindergarten that needs constant stimulation and 1 daugter that needs.... special treatment. My oldest, Keilani is my prodigy child. Always asking questions and always has something to say. She is a sponge with knowledge and I gladly share it with her. Evelyn is our baby girl. She is almost 18-months but is developmentally still only 12 months. She is forever with doctors, specialist and therapists to help get her to her appropriate age level. I'd give anything to hear her talk to me and to see her walk! Even though I know one day I will be telling her to stop running through the house and to sit down and be quiet. But for right now.... I just want her to do it. My husband, Russell... is a sweetheart. I seriously lucked out and got myself a great husband, father and friend.

So I will use this blog as a journal to vent my thoughts on life through my eyes. Between work, appointments and trying to there for my family & freinds.... you will be there too. I encourage comments and look foward to receiving them!!