Thursday, May 22, 2008


We had our ECI evaluation today, and of course William qualifies.  William ranks at a newborn level, and for as bad as his tests were, he is doing amazing is what they keep telling me.  Someone that already has CP sometimes their head or arms or legs etc cannot be moved, and when he is asleep he is very loose compared to other babies that are worse.  

Currently they don't duplicate services he's receiving else where, and he's getting OT, and ST else where right now, so they are going to do monthly service coordination, which means they will come out monthly and give suggestions for ways we can work with him in addition to the OT and ST and also check on him monthly to make sure he doesn't need more therapy.  Also, once the home nurse visits are done they can have a nutritionist come out and check his weight and make recommendations for him.  

Currently I'm suppose to go back to work around June 4th, but my husband and I have decided that I will stay home longer for William and pay for insurance with COBRA, as FMLA runs out after June 4th and at that point Raytheon will cease to pay for my insurance benefits while I'm on leave.  I would give anything for William to not have these struggles, but as there's nothing at this point we can do to change that we as a family are going to do what's necessary to insure his health.  At this point we feel it's best if I stay home longer to ensure he's eating and doesn't have to go back to the hospital for more NG feedings if he were to not eat well for a care provider.  


Unknown said...

I know how expensive COBRA coverage can be, especially for a family of 5. It's too bad that the FMLA leave is only 12 weeks. I hope someday that American employers will allow moms a one year LOA like they do in other countries. I hope you didn't have to completely resign....some employers will offer an extended "personal" leave of absence and allow you to continue benefits by paying the premiums that would have normally been deducted from your paycheck.

The boys look so sweet in their pictures. Keep up the good work!

Unknown said...

I always forget to sign my comments. And now with an imposter around I want it to be known that I don't agree with "anonymous".

Maria S.
Gianna's mom

Anonymous said...

I am glad for you all that eci is going to be able to be of some assistance. I think you are making good decisions and that the boys are so cute and looking more and more alike. Also, Tommy looks so cute painting too. I know he had so much fun!

Anonymous said...

What is an ECI? I know you've probably written about it, but I was just curious.

~Lydia~ said...

ECI is Early Childhood Intervention it's a program funded by the state through the school districts that is to get kids caught up that are behind and provides OT and ST and PT (Occupational, Speech and Physical) Therapies. Its to help kids with speech delays and other delays/problems. They bill insurance, and wave co-pays and take whatever insurance pays them as payment in full.

Mother of a "Special" Child

When I was young, I'd often say,
I'd like to be a mom someday
While playing with my baby doll,
I thought that job's not hard at all

I'd have a baby, maybe two,
a girl in pink...a boy in blue
Well I grew up and sure enough,
I'm now a mom and gosh it's tough

The baby that was sent to me,
was born with disabilities
At first I'm frightened through and through,
there's much to learn to care for you

This wasn't in my plans at all,
when I was young and played with dolls
Your mind and body were so weak,
you might not ever walk or speak

So much special care required,
I'm often scared and often tired
As months and years go slowly by,
I smile a lot but sometimes cry

To watch you grow and not complain,
though you endure your share of pain
Oh, how I'd hold you and I'd pray,
that you'd be healed and whole someday

But I knew that was not to be,
not physically or mentally
And so I taught you best I could,
your progress wasn't very good

But then one day I realized,
as I gazed into your loving eyes
That I had learned so much from you,
determination...courage too

A love so unconditional,
it floods my soul and always will
I'm proud to say I gave you birth,
for you're an angel here on earth.

God Choose a mother for a "Special" child

Most women becaome mothers by accident, some by choice, a few by social pressure and a couple by habit.

This year nearly 100,000 women will become mothers of handicapped children. Did you ever wonder how mothers of handicapped children are chosen?

Somehow I visualize God hovering over earth selecting his instruments for propagation with great care and deliberation. As He observes, He instructs His angels to make notes in a giant ledger.

"Armstrong, Beth; son. Patron saint...give her Gerard. He's used to profanity."

"Forrest, Marjotie; daughter. Patron saint, Cecelia."

"Rutledge, Carrie; twins. Patron saint, Matthew."

Finally He passes a name to an angel and smiles, "Give her a handicapped child."

The angel is curious. "Why this one God? She's so happy."

"Exactly," smiles God, "Could I give a handicapped child to a mother who does not know laughter? That would be cruel."

"But she has patience?" asked the angel.

"I don't want her to have to much patience or she will drown in a sea of self-pity and despair. Once the shock and resentment wears off, she'll handle it."

"I watched her today. She has that feeling of self and independence that is so rare and so necessary in a mother. You see, the child I'm going to give her has his own world. She has to make her live in her world and that's not going to be easy."

"But, Lord, I don't think she even believes in you." God smiles, "No matter, I can fix that. This one is perfect - she has just enough selfishness." The angel gasps - "selfishness? is that a virtue?"

God nods. "If she can't separate herself from the child occasionally, she'll never survive. Yes, here is a woman whom I will bless with a child less perfect. She doesn't realize it yet, but she is to be envied. She will never take for granted a 'spoken word'. She will never consider a 'step' ordinary. When her child says 'Momma' for the first time, she will be present at a miracle, and will know it!"

"I will permit her to see clearly the things I see...ignorance, cruelty, prejudice....and allow her to rise above them. She will never be alone. I will be at her side every minute of every day of her life, because she is doing My work as surely as if she is here by My side".

And what about her Patron saint? asked the angel, his pen poised in mid-air.

God smiles, "A mirror will suffice."