Sunday, February 6, 2011

New friends and knowing

continued....


So months after they knew..... the baddest part of Rett Syndrome is kicking their babies butt. For me it was opposite. It was kicking her butt and I didn't know why.


They, of course, have questions about what we experienced. Was Abby like this? When did you first know something was wrong.?What could she do?


These are hard questions. Back then I was clueless for the most part. Did I know something was wrong with my daughter? Yes I did. Back then I didn't know I knew.


Confusing statement I know. Hopefully I can make sense of it here.


Abby was over due and was born over 9 pounds face up with an apgar of 9. I questioned why she didn't cry when she was born and they told me she was worn out. I questioned the score and they told me she was pink,breathing and responsive.


I will tell you this is the second time today I have written this. The first time I went into every detail and it ended up being a novel so I will try to condense it.


We knew we had the happiest baby ever. Everyone said so.


We knew she turned over and held her head up a few days after being home from the hospital.

We watched videos of her brother at 2 months old not being able to do stuff or be as aware as she was at a week old..2 weeks..2 months. She always seemed ahead of him in age comparison videos.


We knew that he were invited to be in a video promoting the services of the clinic she went to and everyone commented how awesome she was.

We knew...


She said her first word at 5 months and could say words in both our languages by 6 months.
She played pretend


She always had a toy in each hand


She fed herself at 6 months


She was so full of life and personality she had personal Abbyisms for different people.


She was Audra's booby snuggler


She was Mae Maes Princess


She was Bubba's wrestling Buddy

She loved to attack and bite her Nee Nee and her Billy

She shared her toys with adults and bit babies. She was a brat

She was a flirt

She loved heavy metal music and would turn the 5 disc cd player to Metallica. No matter how many times we put in other cd's she would search for them and boogie down. My Lil Rocker.

She loved to dance


She was a Daddy's girl


She was Mommy's everything

The signs....

She never cried..never..not unless she hit her face directly on something..After having a kid with colic before we were very grateful


She tremored when you woke her up. The docs called it a startle reflex


She seemed to be spoiled and lazy...I did breast feed her for 17 months. Every one decided it was my fault because I held her too much.


She had no desire to hang on. Like I couldn't put her on my hip. I know now it was floppiness and low tone. Back then I really had not idea.


She stopped sleeping at night. Nights were the worst. She would scream and scream. The answer? Spoiled. My fault. Need to make her a schedule. Spoiled brat.


She woke up one day rubbing and twisting her fingers. We thought they itched. Later that day after she looked blankly at her Cheerios and juice for 3 hours I called and asked her Dad if he had dropped her or if she had fallen off the bed and he hadn't told me.


After a few days of blankness we realized she was almost completely silent. Except for the screaming. There was no more babbling.

We took her in...They said I was crazy. We switched doctors. When I started to recount things he told me she was fine and that I had Munchhausen's Syndrome.


I flipped and they agreed to tests. Another doctor said CP or stroke. They did an MRI and ordered genetic testing. We did the MRI and it was normal. We refused the genetic testing.

Why did we refuse? Because we were scared. We didn't know what they were going to tell us and they didn't know what they were looking for.


They came back with a best guess PDD and a suggestion that I seek some Mental Illness counseling.


The rest of the story I have told a million times and am too exhausted to completely recount here again. Eventually I found it in a book. Took her to her current doc and he nailed it immediately. First tests were negative..whew sigh of relief. Backup test was positive...world came to an end.


Was she like this?? Yes Stef she was. We just didn't know why. The only difference I can see is that you had your answers before regression. Her regression caused our search for answers.

I'm here sweetie. Whenever you need me

1 comment:

stefanie (christopher) gutierrez said...

aww terri, i've been so nuts lately that i haven't done much blog reading. i stumbled over here before leaving for work... and read through your new posts. thank you doesn't seem like enough... pizza delivery? i'll be sending you pizzas for the rest of your life. i am speechless, because i am not sure if i have done the right thing in seeking you out for every little thing, because of all of the things you describe. you are an amazing mom and friend, and i love you like my sister from another mother, because you are. i hope it isn't too one-sided, that i can help you with things too... i am rich in knowledge but still catching up 'cause i am poor in experience (so far). love you lots.