Backspacing and Blank Screens

Tonight as I sit here at the computer, I’m telling Rob that I just can’t seem to get my thoughts down in a blog post. It’s as if I have much too share, but every time I begin typing I quickly hit backspace, backspace, backspace until there is nothing but a blank screen again. I suppose this so-called “writer’s block” is running parallel with Lola’s undetermined diagnosis. We had one before and although lissencephaly was a hard diagnosis to swallow…at least we had one. But now Lola’s medical life has taken another unexpected turn when the lissencephaly diagnosis was retracted by a MRI performed here in the U.S. It’s as if someone is hitting backspace and all we are left with is yet another blank screen. I guess...
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Knowledge is a Powerful Tool

My apologies for not writing about our VIPS experience sooner, but our week was busy with work and on Thursday, I had my non-functioning gall bladder removed. Each day I am feeling better, but the hardest part about the surgery is not being able to pick up my own child. As I was being prepped for surgery, the doctor told me I couldn’t lift anything over 10 lbs for four weeks. I giggled and replied that I had a 15 month old at home. His serious look did not change as he repeated his instructions. So I may get a hernia from the deal, but in all honesty, what mother could not pick up her own child? A week ago Thursday, Ann Hughes from VIPS-Bloomington (Visually Impaired Preschool...
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First Steps Evaluation

In the world of a one year old, they don’t know that it is actually their birthday. They may understand that their parents are ridiculously cheesy for some reason, they may be excited about the presents they get to open and they will especially love the cake they get to indulge in, but for the most part…it’s just another day. So when we were asked if today would be a good day to have the therapists come out to evaluate Lola, we happily replied “yes”. Two therapists came to our house at 10:30 this morning to take a look at Lola. They simply wanted to observe her as she played all while asking us numerous questions regarding Lola’s life. We told them all about Lola’s long medical history...
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The First Step with First Steps

Yesterday the intake coordinator for First Steps came out to the house to enroll Lola in the program. First Steps is an early intervention program that is funded by the State although you are required to pay something based on your income (if not covered by insurance). They believe that every child (from birth to three years) with a disability or developmental delay should be provided the services they need to help them excel in life. Under Federal Law, every family has the right to an evaluation, but not every child will be allowed into the program. There are certain criteria that the child must meet in order to be approved for services. The child must be developmentally delayed by 20% in two areas or 25% in one...
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Adjusting

How are we enjoying the United States? Well I must say it feels pretty good. I love the family feel, the whole spirit of Christmas, the simplicity of certain things, the bargain shopping, all of my vegetarian food (I ate a meatless Kielbasa last night – wait that sounded very dirty!) and I especially love our little home. It feels right being here, but it does not come without its downfalls. As of right now, it will take Lola almost two months to receive therapy through First Steps. TWO MONTHS! This is supposed to be an early intervention program funded by the State…notice the word “early”. I was outraged hearing it would take an intake coordinator two weeks to see Lola, another couple of weeks to see if...
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