Elijah's legacy

Not enough ...

2010-08-29T17:23:00.000-07:00

~Not enough time has passed; though far too much has gone by...

~Not enough hours in a day ; yet too many to get through...

~Not enough time we had with you

Missing you more with each passing minute ~ Grammie loves you ,Beans, and I will NEVER forget...

21 months

DiGeorge Syndrome general overview

2010-08-22T07:59:00.000-07:00

20 months...

2010-07-31T06:01:00.000-07:00

Dear Elijah,
Grammie misses you every day. Yesterday there was a swarm of Dragon flies in our yard. It was the most awesome thing! I knew you and Grandpa were here. Each day without you becomes harder, not easier; but little signs of you make it bearable.
I love you Bean Baby....

2010-06-25T10:11:00.000-07:00

...You never know how strong you are until being strong is the only choice you have...

Loving You...

2010-04-29T06:39:00.000-07:00

The apples on your tree are growing ... a symbol to us that life goes on...but it will never be the same. The hours that turn into days and the weeks spinning into months without you here bring no relief. The grief is still overwhelming to each of us who love you. Though 17 months have passed since you were snatched away; it feels as if it were just today. You are and will always be Grammie's Sunshine- I miss you dearly my little Angel.

My Valentine

2010-02-14T07:49:00.000-08:00

Elijah,
You will ALWAYS be my Valentine
Hanging in there... wishing you were here.
Loving you always,
Grammie

Still Missing You

2010-01-29T11:42:00.000-08:00

My Dearest Elijah,
Missing you is never ending ~ a day without you is like an eternity.
To feel the pain in your mommy and daddy and each one that loves you is almost too much to carry in my heart.
The good memories of you will have to get us through each passing day.
The fourteen months that have passed without you have been like a movie in slow motion. Each and every thought just brings us back to you. Sure do miss your beautiful smile :)
Remember how much we all love you and keep up the visits we all know it's you
Forever you are my Angel...

DiGeorge syndrome: Treatments and drugs - MayoClinic.com

2010-01-16T09:39:00.000-08:00

DiGeorge syndrome: Treatments and drugs - MayoClinic.com

A Blue Christmas

2009-12-26T07:31:00.000-08:00

Baby Beans,
It was a blue Christmas without you. All the sparkle and glowing lights could not replace the thoughts of needing you here with us.
We miss you so.
All our love to you today and always,
Mommy,Daddy,Paw-paw ,Grammie & Aunt Jo-Jo

The Year No~one Wanted...

2009-11-29T13:00:00.000-08:00

...aunt jojo loves and misses you terribly little man!

Every day without you feels like a lifetime

Dread has come with each day of this year

Mornings come way too early

Leaving you in our dreams,

Evenings can't come soon enough

Wishing another day without you gone;

Memories are all we have left of you.

The day you were born brought SO much joy into our lives,

The doctors said you wouldn't make it, but we knew without a doubt you would.

You fought and were the STRONGEST little boy our family had ever layed eyes on,

We knew you weren't going anywhere.

You fought for exactly 1 year, 1 month, and 11 days;

On November 29, 2008 we were forced to let you go

Grandpa Millard could not wait to see his little man again.

I hope Grandpa is spoiling you and giving you all the candy and chocolate in the world.

You deserve nothing but the best and it's what you should get.

Elijah Call you will ALWAYS be in our hearts, thoughts, and dreams

there is not one day that goes by we do not think about you.

We love and miss you dearly.

You will ALWAYS be our little man:)

Aunt Jojo, Mommy, Daddy,

Grammie and Paw-Paw

Just short of a year...

2009-10-29T14:34:00.000-07:00

Dear Elijah,
It's just a month short of a year without your precious smile. Whenever I think of you (everyday) I smile just thinking about all that you're doing in Heaven. We miss you more than sunshine, Baby Beans. Life will NEVER be the same without you in it but we know that you are having so much fun and doing so good now. And that you have been joined by so many we love this year. All that wanted to just hold you cannot even catch you- I'm sure :)
Be the sweet boy I know that you are and don't stop visiting us in that 'special place'.
Grammie couldn't be prouder of your Mommy and Daddy.
They are doing better and holding on to God's promises-I know you are proud of them too.
We all love you and miss you more than words can say.
All of Grammie's love to you today and always...

2009-10-19T16:16:00.000-07:00

Happy Birthday my little Angel....
Just when we thought we had lived through the hardest day ever~ another just rolled around. Not having you here with us to celebrate with cake on your face.
But we know that you are in your special place watching us from above ; and your gift is much better than cake.

We will ALWAYS love you Beans.

Love,

Grammie

10 months...

2009-09-28T19:52:00.000-07:00

It's been 10 months today, Beans, but no~one has forgotten...

You are 23 months old now and still the center of our universe. Running the streets of gold and playing around . All of the things you couldn't do here. I'm sure you're playing frisbee with that Halo of yours!

I'm using this gorgeous picture of you and Uncle Jacob, to thank you for the gift you are sending our way. A new little cousin should be here in May! We are all so excited and torn just the same... We know you hand picked him or her to help heal the pain. You'll NEVER be forgotten or far from our minds. We know you decided it was just the right time. Thank you sweet ANGEL, for thinking of us and always watching out for those in your trust.

We love you forever and ever again. Don't worry your spot can NEVER be taken.

Grammie misses you more than sunshine and always will...

Nine months without you...

2009-08-29T10:03:00.000-07:00

For almost nine months we waited to see your beautiful face...

When the moment finally arrived, you were the most beautiful boy anyone had ever laid eyes on.

For thirteen months WE thrived in YOUR light and the wonders of you.

Today has been nine months without the sweet smell of you and your loving, warm, touch our lives will never be the same because of you.

We dearly miss you Little Man.

You are our shining star and the Angel that guards us ; in our hearts and daily lives you will always be.

Missing you today and always.

Love from

Mommy, Daddy, PawPaw, Grammie,Aunt Jo~jo,

Uncle Jacob & Aunt Aubree

Are we helping?

2009-08-06T16:33:00.000-07:00

Are the blogs here or at www.elijahslegacy.ning.com helpful?

I've been so depressed lately. I miss him so much and this is the only thing I can do to keep from having a nervous breakdown. I spend so many hours searching for more information. Every day, feeling my daughter's loss, drives me more to find and share all the possible answers.

It's so scary thinking about anyone else ever having to go through this and not having the right information.

Knowledge is key.

If we can just arm one family with the proper knowledge maybe, it would feel better.

I know he was not sent and taken for no reason.

Just can't wrap my mind around all of it right now. I dream of him and see him as he should be- but also the nightmares of what was.

QUESTION-If they can engineer a "designer baby" in a petrie dish, why can't they add a chromosome to a living child?

~ALWAYS~

2009-07-28T06:41:00.000-07:00

Seems like forever since you were in my arms...

Yet I feel your presence all around me

In each breath I take

Everywhere I look- there you are

But you're not

Eight months since you've taken flight with your precious wings

Fly high my Angel

Fly close by my Angel

Love and miss you ALWAYS

~DON'T FORGET~

2009-07-01T05:34:00.000-07:00

Just wanted to remind each of you of our information site and invite everyone to visit... www.elijahslegacy.ning.com/

We have forums, groups, lots of info. on DGS/22Q11/VCFS.

Also, there is a grief group and an open chat.

Elijah's mommy has created a new blog-

www.ourlittleangel-mommy.blogspot.com/

Thanks for all your blessings towards us . I think of each of you every day.

Seven long and weary months

2009-06-29T07:50:00.000-07:00

Dear Elijah,

Try hard as I may;

I cannot forget

You've been gone seven months today...

You are Grammies Sunshine, Beans

And Paw-Paw's Little man;

Mommy and Daddy's hearts desire

We know you are keeping watch over us

And putting in a good word

Soon we'll be re-united and the pain will be

Replaced with joy.

Everyone misses you today and ALWAYS.

Love,

Grammie

Six months today :(

2009-05-29T17:08:00.000-07:00

Has it been a half a year?

Six months have crept past us in the fog of missing you.

You will always be our sunshine.

We miss you everyday.

Love and misses xoxoxoxo

Elijah Caldwell Marsh 10-18-07 to 11-29-08

NEW ! Social Network

2009-05-02T19:55:00.000-07:00

We are not moving ...Just trying to expand to help get the word out. Any suggestions would be helpful... Feel free to join in , comment, or chat :)

http://elijahslegacy.ning.com/

More helpful chromosomal websites

2009-05-02T18:03:00.001-07:00

Always taking more steps towards knowledge....

I recently found and researched these three websites and found them to be quite helpful.

www.chromodisorder.org/CDO/

www.family-friendly-fun.com/chromosomal-abnormalities.htm

www.savebabies.org/expecting/faq.html

Whatever you're looking for , we will try to help you find it. Just ask.

Prayers for Mommy

2009-05-02T05:33:00.001-07:00

Pray for my Mommy

She is the strongest person I know

I miss her and I know she misses me too

Sometimes she can't tell I'm with her

It's still hard for me to do

When I whisper in her ear

Or leave my smell in the room

I watch her cry herself

To sleep each night

And beg God to

Make it right

She is so lost without me

And struggles all the way

The pain of losing me

Gets fresher everyday

So please pray for my Mommy

It's hard to watch her cry

I love you Mommy

LOVE,

Your lil' man

~ My love for you is a journey, starting at forever and ending at never ~

Missing You today and always...

2009-04-29T19:55:00.001-07:00

Lost without your precious smile

Lost without snuggling you

Lost without you in our arms

Lost five months without you

Missing you today and always

Love and misses

From us all

Help make National DiGeorge Awarness Day a reality

One year anniversary of your lifesaving surgery 4-14-08/ 4-14-09

2009-04-15T13:50:00.000-07:00

One year ago today, we were in Boston praying for your safety during surgery.
You were such a trooper!

We are so proud of you today and always...

Today, as we still mourn the loss of you, we have not forgotten all you went through to stay with us just a while longer.

Love you always,

Mommy,Daddy,Grammie, PawPaw, and Aunt Jo-Jo

Easter from Elijah

2009-04-12T17:26:00.000-07:00

These are my footprints

so perfect and so small

These tiny footprints

never touched the ground at all

Not one tiny footprint

For now I have my wings

These tiny footprints

were meant for greater things

You will hear my tiny footprints

in the patter of the rain

Gentle drops like angel's tears

of joy and not of pain

You will see my tiny footprints in

each butterflies lazy dance

I'll let you know I'm with you

if you give me a chance

You will see my tiny footprints

in the rustle of the leaves

I'll whisper names into the wind

and call each one that grieves

Most of all these tiny footprints

are found in all your hearts

'cause even though I'm gone

We'll never truly part

Love always,

Elijah Call

Pediatric Endocrinologists in the Southern States

2009-03-29T07:05:00.000-07:00

Today, four months have passed since losing Elijah Call...
We are still unable to make sense of the lack of knowledge on the part the medical profession.

I've been doing alot of research lately.

I am including a list of pediatric endocrinologist. I don't have web addresses yet, but will post when I get them. For now, I am providing addresses and phone numbers.

MISSISSIPPI
UNIVERSITY MEDICAL CENTER, JACKSON,MS.
(DR. George Moll)- toll free: 1-888-815-2005 & 1-601-376-1545

CENTRAL PD EAST
1860 Chadwick Dr.
Suite 206
Jackson,Ms. 39204 (Dr. William Bastian)

ALABAMA
PEDS ENDOCRINOLOGY - CHILDREN'S HOSPITAL ( 205-939-9100)
Birmingham , Alabama
Drs. Hussein D Abdul-LaTif, Amy Burton, Kenneth L. McCormick, Elaine Mooreland,
Ambika P. Ashraf , Joycelyn Atchison, Whitney Brown and Gail Mick

MOBILE
USA PEDIATRIC DISEASE
Dr. Samar Bhowmick and Dr. Kenneth Rettie

GEORGIA
EMORY CHILDREN'S CENTER
ATLANTA , GEORGIA
Drs. Inger Hansen and Eric Felner

PEDIATRIC ENDOCRINE ASSOCIATES
ATLANTA, GEORGIA
DRs. Mark Rappaport, Stephen Anderson, and Melissa Carlucci

NENOURS CHILDREN'S CLINIC
PENSACOLA, FLORIDA 32504
DRs. Helen Hsiang, Mark Kummer, and Michele Zerah

May you all be blessed on your journey ...

Elijah with his Mommy and Daddy

2009-03-11T17:34:00.000-07:00

Elijah Call, Mommy & Daddy on his 1st birthday:10-18-08

Elijah Call and Mommy - 3days old Elijah Call and Daddy -3 days old

Elijah Caldwell Marsh 4-days old

New year's day 08' Elijah & Daddy

Elijah & Daddy

(official ring bearer's at Uncle Jacob's wedding)

Elijah had already wet his suit by the time these pics were taken.

Elijah Call , Daddy & Mommy at UncleJacob's wedding to Aunt Aubree 10-10-08

In my many efforts to share Elijah's legacy, I have realized that I have left out a VERY important part of his blog...His Daddy!

Sorry Chris!

I no more meant to leave his daddy 'out of the picture' , than I thought to take my next breath.

Elijah is very fortunate to have had two wondeful parents who love him more than anything.

Without Chris, I would never have had the life changing, love that Elijah gave so willingly to all of us.

For my "Beans"

2009-03-04T19:22:00.000-08:00

"Before you , my life was like a moonless night. Very dark, but there were stars- points of light and reason.... And then you shot across my life like a meteor. Suddenly everything was on fire; there was brilliancy , there was beauty. When you were gone, when the meteor had fallen over the horizon, everything went black. Nothing had changed , but my eyes were blinded by the light. I couldn't see the stars anymore. And there was no more reason for anything."

QUOTE FROM: NEW MOON

Beans,

We see the reasons now for you in our lives. You brought the sun into focus and your sun will ALWAYS shine in our lives.

Everything has changed because of you and you have given us reason...

Love,

Grammie & Paw-Paw

NEW INFORMATION

2009-03-01T08:19:00.000-08:00

As I am ever searching for more information , I spend hours reading articles and cross researching to find the ones that I think would be helpful.
These are some that I have recently read and wish I'd been able to find a year ago. I hope they are helpful to someone.

Forever searching for Elijah's Legacy...

New links: http://www.cardiogenetics.org/del22q11_guide_layout.asp (VCFS)
http://www.uptodate.com/patients (Evaluation, diagnosis & management of DiGeorge-22q11)
http://www.jkms.org/fulltext/pdf/jkms-17-125.pdf (Prenatal diagnosis of tetrology of fallot)

THREE MONTHS WITHOUT YOU NOW...

2009-02-28T15:42:00.000-08:00

Three months without your beautiful smile...

Grammie and Paw-Paw miss you so much , Angel.

Hugs and Kisses

~Life is too long without you~

2009-02-25T17:23:00.000-08:00

~ I wonder how long this can last. Maybe years from now- if the pain would just decrease to the point where I could bear it- I would be able to look back on those few short months that would always be the best of my life. And, if it were possible if the pain would ever soften enough to allow me to do that, I was sure that I would feel grateful for as much time as he had given me. More than I'd deserved. Maybe someday I'd be able to see it that way.~
FROM: NEW MOON

This paragraph from an exquisite trilogy(Twilight)sums up my misery in losing "Beans".
It's coming on 3 months now, that seems like an eternity. But also, feels so raw, that it could have only been a second ago....
I love you "Beans"

New link for grieving families

2009-02-14T19:50:00.000-08:00

Griefhaven has been a great source for conversing with other grieving families for me .

https://www.griefhaven.org

Happy Valentine's Beans...

2009-02-12T18:47:00.000-08:00

How am I ?

2009-02-12T16:37:00.000-08:00

Speaking for all of us
The world hasn't stopped turning because we are hurting...
Life goes on all around us as ours feels as though it has come to a halt.
Sometimes people don't realize that asking how you're doing just opens the floodgates.
I want to scream and say I'm not alright and I won't be alright, but I know that will make me sound like a lunatic. But , it's how I feel most days. The days pass slowly and the nights slower , when you've lost a child. You go to sleep hoping it's all a nightmare and wake up wishing it was , only to go through the same day over and over. The constant thoughts of what should have been and what could have been are consuming. Always wanting to snuggle him , watch him sleeping, hear him laughing,watch him enjoy a cookie and thinking of what he would sound like if he could talk...wishing things were different .
To be able to change things for my daughter, his mommy. To have words that would make things better like mom's are supposed to be able to do. I don't have the right words , there are no right words. I don't have the answers, somebody , please , tell me what the answers are!
Wishing the doctor would have given more thought to Elijah than to whatever could have been on his mind that day.
Rage, pain and grief... nothing can change it now.
I MISS ELIJAH CALL

Elijah Call and Uncle Jacob

2009-02-10T18:34:00.000-08:00

One of the best pictures as said by all...

Today has been so hard , Angel, we miss you more than sunshine.

We will not give up searching for your answers.

You are permanently engraved in our hearts, eyes and minds...

Love you more each moment,

FOREVER YOURS

GRAMMIE

Happy Day...

2009-02-09T21:17:00.000-08:00

My happy little "Bean baby".

Symptoms of DiGeorge syndrome - WrongDiagnosis.com#symptom_list#symptom_list

2009-02-09T21:15:00.001-08:00

Symptoms of DiGeorge syndrome - WrongDiagnosis.com#symptom_list#symptom_list

I'll be watching over you...

2009-02-09T21:06:00.001-08:00

Love,

Elijah Call

http://www.irisremembers.org/illbewatchingoveryou.html

Elijah video

2009-02-01T09:07:00.000-08:00

40 year old man diagnosed with DiGeorge...

2009-02-01T07:17:00.000-08:00

More and more, I am finding information that justifies my thoughts that there NEEDS to be more education in the medical profession about 22q deletions , DiGeorge, and all other genetic disorders. Education IS key. If more doctors understood, more can be done.
Please help me educate them...

http://www.pubmedcentral.nih.gov/articlerender.fcgi?artid=2222674

More useful information

2009-01-31T06:00:00.000-08:00

Thanks to Lindsay for providing this link ....

It has very useful information for families of children with genetic deletions.

www.vcfsef.org/articles/en/pdf/Factsheet

Elijah's legacy: Medical Needs

2009-01-14T16:24:00.000-08:00

Elijah's legacy: Medical Needs

Medical Needs

2009-01-11T05:56:00.000-08:00

Medical Needs

National Primary Immunodeficiency Resource Center

2009-01-11T05:52:00.000-08:00

National Primary Immunodeficiency Resource Center

FISH Test@Everything2.com

2009-01-11T05:18:00.000-08:00

Elijah's legacy: Always more to learn about DiGeorge/22Q DELETION

2009-01-05T20:34:00.000-08:00

Elijah's legacy: Always more to learn about DiGeorge/22Q DELETION

Another day without Gammie's "Beans"

2009-01-05T19:34:00.000-08:00

Today is the 37th day without you in my arms...I miss you more with each hour that passes.
~I don't know how to let you go, you're so deep down in my soul, it's a door that will never close...~
~Losing your way on the journey is unfortunate, but losing your reason for the journey is a fate more cruel.~ You made the journey worthwhile and now I don't know what to do.
I can feel your presence so strong, but cannot hold you in my arms.
I love you Elijah Call,
Hug Grandpa for me.
Love always,
Grammie

Elijah's legacy

2009-01-01T07:13:00.000-08:00

Elijah's legacy

2009-01-01T07:01:00.000-08:00

~...don't miss out on a blessing because it isn't packaged the way you expected it to be ... ~

Elijah's legacy

2008-12-28T20:02:00.000-08:00

Elijah's legacy

2008-12-19T15:21:00.000-08:00

Grammie loves you today and always....
You ARE my sunshine.
I miss you so much my ANGEL.

2008-12-18T19:00:00.000-08:00

2008-12-18T18:44:00.000-08:00

Always more to learn about DiGeorge/22Q DELETION

2008-12-18T08:31:00.000-08:00

DiGeorge syndrome is caused by a deletion of chromosome 22.
It is genetically inherited. Parents may not even know they are carriers.
1:4000-1:6345 children are born with DiGeORGE.
Characteristics of DiGeorge :ALWAYS a heart deformation. From a murmur to a severly disfigured heart. Other characteristics are small, wide set eyes, short jaw, small ears,poor or non-existent immune system, hypocalcemia,hyperthyroidism, slow mental development, speech(they may sound as if they are deaf) and learning difficulties,seizures, And much more...
There is a SIMPLE blood test(FISH) to determine if you have 22q deletion before you become pregnant,FATHER'S should also be tested!
Until recent years these problems were not lumped together as a syndrome.
Our daughter was born 23 years ago with 3 holes in her heart that were repaired when she was 3 mos. old.. She was small, had speech difficulties,and learning disabilities.
Not until her son was born and was tested , had we ever heard of this syndrome before. It explained alot , as we had been to many doctors over the years and recieved no answers.
Learning that Elijah had DiGeorge was just the beginning . It was so involved and no-one truly seems to understand all the factors.His heart condition was known as pulmonary atresia with tetrollogy of fallot, which is normally found in newborns during autopsy. It is very rare for a child to survive birth with pulmonary atresia because it means his heart never formed a pulmonary artery, which carries oxygen from your heart to your lungs. We immediately began to research and learn as much as possible. We kept journals on everything, constantly adding new information to our files learning how to care for him as we went. Our experience was many Dr's from Columbus,MS. TO BOSTON, MASS.who were mostly educated by the info. WE gave them. Along the way , one or two knew just enough to convince us that they knew what to do for him, but in the end basically he was a guinea pig, especially in Children's Hospital of Boston.
We were told that Boston was the only place in the U.S. that could build a pulmonary artery for him. Our experience there was awful.The surgeon,Dr.E.Bacha, used a conduit that he said would have to be replaced in 2-3 years. He seemed to know what he was doing,but the rest of the staff treated us like dumb rednecks,and my grandson like an oddity who was a perfect teaching TOOL. After 6 terrible weeks there,we finally returned home where we changed pediatricians b/c Dr. Hill, claimed to have knowledge of DiGeorge and was supposedly a high risk pediatrician. Turned out, he had NO clue, at even a sneeze he sent us running to Jackson,Ms. children's cardiac unit.After awhile of that nonsense and no help for baby Elijah we again changed pediatricians to a high risk Dr. near home. He seemed quite confident and did alot to help our ANGEL, but in the end his confidence could not save our baby.
The conduit that was placed in his heart in Boston, failed in 8 mos. and as his system suddenly shut down from Edema that took over his body and he was gone from us within an hour. Even the Docs in the E.R. hadn't a clue about what DiGeorge was, we had to explain it to them along with all of his other issuesas they were trying to save him.
This suffering can be prevented if we educate ourselves and others. There are worse things than having a sick child, having a sick child that Dr's are afraid of because they lack knowledge is worse.
ALL ob/gyn's and pediatricians should be aware of this syndrome. I intend to tell Elijah Caldwell Marsh's story to anyone who will listen.
We have lost our ANGEL, but he will never be forgotten.
Grammie will always Love you "Beans"

Elijahs legacy

2008-12-16T17:51:00.000-08:00

This story is about a very rare , very serious disorder called DiGeorge syndrome.

On 10-18-07

Elijah was born weighing in at 3#11oz. & 16 " long. Minutes after his birth, it was discovered that he did not have a pulmonary artery. This is the main artery in your heart! He was med-vac ed to jackson, ms. where he spent the next 33 days on a ventilator. Once he was regulated he was put on portable oxygen and a heart monitor + 7 medications. Soon after that he had a grandmahl seizure which led to the discovery of DiGeorge, also known as 22q deletion. Now, there is a simple test that can be performed BEFORE pregnancy to determine this syndrome. If you are a carrier you should not risk having children. Most DiGeorge babies do not live past 1 year. We were lucky, we had 13mos.& 11 days with our "Beans".

April 14,2008 , we went to Boston ,Mass. to have a pulmonary artery built. The operation was a success,but there were terrible complications and he barely weighed 6 #. After 6 long weeks in boston, we finally came home. Throughout his life, he suffered many complications. After the initial surgery, he was off portable oxygen and breathing on his own, but was on 9 daily meds 4 times a day. He did not have an immune system, hypocalcemia caused seizures,hyperthyroidism caused delayed growth and depleted his strength. He hardly ever left home , except to go to Dr. appts. Still, he was the center of my universe.

Thanksgiving 2008, he was doing very well, had not been sick, and finally weighed 10# 3oz.!

He enjoyed pumpkin pie and cranberries!

Sat. Nov.29,2008, He became adjatated, my daughter, his wonderful mother, called to ask if we could take him to the e.r. because he didn't seem right.

Upon arrival to the e.r. he rapidly deteriorated before our eyes. As his mommy, pa-pa & I held on tight and prayed to God to help him he went into kidney failure from Edema, and within 30 minutes he was gone. My sunshine had burned out . FOREVER.

The e.r. doc said he had never seen anyone taken over by edema so quickly, he said Elijah's arteies had closed up. If he had gotten a heart cath done a week before, he would be alive today.

The heart cath had been scheduled for Dec.4

Please read all you can on DiGeorge before becoming pregnant. And if you are living with a child with this syndrome, I will do anything in my power to help you get the help that you need. We were floundering about in a sea of doctors with little understanding of this horrible syndrome.

My daughter and her husband will not be able to have any other children due to this.

...... We are so lost right now and the pain is so debilitating it is hard to breathe........