Thursday, July 30, 2009

Yeh just got the call!

William has been approved by insurance for his first wheelchair!

Sunday, July 26, 2009

William and Micah

16.5 months

Saturday, July 25, 2009

Tommy, what did you do today? (Last Friday)

I played at mommy's friends house.
I throw sand.
I throw sand at everybody else.
I be good al the times.
I went there and said good bye and went home.
Throw sand.
I ate an orange.

Sunday, July 19, 2009

Thursday, July 16, 2009

A friend sent me a great link for our home schooling

This link has a great list of what we are trying to do for home schooling and things we are doing with Tommy (now) and the boys (slightly now but more later). If you ever need ideas for books for presents there's a great list on this page and as of now all I have is the online ones. Now to figure out how to get outside even more!

Wednesday, July 15, 2009


Lydia Conrad
Mommy to Tommy (3yr 3/06), William & Micah (1yr 3/08)

Trouble on the tracks!

as Read by Tommy Conrad!

Train with No name

tommys new book

Micah swimming full video

Note the crying was just an act for mommy to get him out of the water.


I called the MDCP people today to see about the Money follow the person option, and they assigned me a case worker and said I should hear from the case worker in 2-3 weeks.

Better clip of Micah swim test today

Micah swim test today

Micah was babbling in the back seat

I heard him say "William, open up, AWhhh" This is often what we tell William when we're trying to feed him.

My baby forever and ever

I asked Tommy if he could be my baby forever and ever he told "I can't I have to grow up and be a Train driver!"

Tuesday, July 14, 2009

I was in tears today...

I called around to insurance, and Home Health care providers trying to get someone who could provide better care for William, and also some help with his care, as I estimate I spend 4-6 hours a day feeding him, probably should be more, and he can eat so it's not right to do surgery for him just because I don't have the time. I was in tears when I reached a pediatric home health provider after 20+ minutes on the phone with insurance only to find a provider that doesn't do pediatrics. The talked to me and referred me to a few providers that do pediatrics. I called the first one, told them our story about William eating 2oz in 9.5 hours, and that we need some assistance with his care but aren't sure how to get insurance to cover it. They said they would help and took my information. I was in tears while giving them my information because I finally found someone who could help. We talked and they are going to ask for up to 70 hours a week of PDN (private duty nursing) for William, and gave me what I needed to have my doctor fax to them. Orders for up to 70 hours, medical information, letter of medical necessity.

Saturday, July 11, 2009

Tommy Reading

We recently checked out some train books from the library, and they've become part of bed time routine. One of the book has been simple enough that Tommy's been reading it from the first time we opened it. It's called "This Train", He loves it and has been so proud to show everyone how he can read every word! And he does a GREAT JOB!

Frustration with Back-Up Childcare

I took the kiddos to the drop in child care place on Thursday because our beloved sitter, and WE DO LOVE HER TONS!!! Was sick, I'm so sad she was sick! And Tommy had problems with behavior at the drop in...and hardly ever does with the normal arrangements :(. And William had ONE oz of bottle in the morning, and about ONE oz of food at noon :(, and a cracker in the afternoon! Then they dropped the bottle at the 4:30 feeding, and based on how he cried on the way home I'm sure he had NONE of that bottle. I called the Home Health people, the pediatrician, and our speech lady, to find if there was anything we could do to provide him better care on the days I work and have to use back up arrangements as it's not acceptable for him to eat only an ounce of food in the 9.5 hours I was gone from 7:30am - 5pm.

Home health gave us the name of a program we may qualify for MDCP - Medically Dependent Children's Program. And then the name of a person to call about doing one over night stay in a Nursing Home so that we can jump to the front of the line in the program. They are apparently the only ones that cover assistance and resbite care programs for children based on the only the child's income, and Medical Need.

Micah's new Diagnosis

Micah had a Heart Murmur at his last check up, and as such it is normal for them to refer to a cardiologist for review testing to verify if the murmur indicates anything significant. At the Cardiologist they found a Moderate sized Atrial Septal Defect (ASD).

At about 3 years of age findings indicate if the defect will be large enough to require closure, ore small enough to never need closure. At this point there is no required restriction or precautions and they want to follow up in a year.

The Road Less Traveled...

Two roads diverged in a yellow wood,
And sorry I could not travel both
And be one traveller, long I stood
And looked down one as far as I could
To where it bent in the undergrowth;

Then took the other, as just as fair,
And having perhaps the better claim,
Because it was grassy and wanted wear;
Though as for that the passing there
Had worn them really about the same,

And both that morning equally lay
In leaves no step had trodden black.
Oh, I kept the first for another day!
Yet knowing how way leads on to way,
I doubted if I should ever come back.

I shall be telling this with a sigh
Somewhere ages and ages hence:
Two roads diverged in a wood, and I--
I took the one less traveled by,
And that has made all the difference

...Robert Frost

The last 3 lines say it all....

Thursday, July 2, 2009

William eating

William ate Oatmeal, and tortillas and cheese yesterday
Today he had some pees and pork roast
He's wanting to have what everybody else is eating, he's taking bites and chewing his food, occasionally he looses it, but if you poke it back in he eventually gets it and swallows. This is GREAT progress for him! He's also making more noises, and different noises (great progression towards speech!)
I'm excited what this last week has brought for him!

He's also trying to crawl, following commands about which arm to move, wanting to crawl and move.

He loves dancing with Tommy, and floating in the water of the pool, and joining right in with his brothers!

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."