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Maddy and Robby

If It Were Not For Hope The Heart Would Break

Tuesday, October 27, 2009

Mitochondrial Disease Information and Blog - mitoblog

Mitochondrial Disease Information and Blog - mitoblog


This is a new blog I found, it is interesting.
Posted by Cory at Tuesday, October 27, 2009

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About Me

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Cory
I am the mom of an 8yr old little boy, Robby, who has a Xq28 duplication. It is a chromosomal abnormality that I am the carrier of unbeknownst to me. I am also the mother of an amazing 10 yr old girl, Madison, who is the greatest big sister in the world! She was diagnosed with ADHD, Sensory Processing disorder and mild learning difficulties. She has taught me patience, something I never really had until she came along. They are both my biggest challenge and greatest reward!
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Maddy and Robby

Maddy and Robby
"Life does not have to be perfect to be wonderful." -- Annette Funicello

Robby

Robby
My beautiful boy, Robby, is 8 and was born with a genetic abnormality of unknown etiology. A duplication of his Xq28 chromosome complicated with Mitochondrial deficiency Complex 1. He is considered CP with Mild Optic Atrophy, Intermittent Strabismus, Seizures and has Autism secondary to the genetic abnormalities. He uses a walker/wheelchair and MAFO's and he is learning sign language.

Madison Marie

Madison Marie
My beautiful girl. Madison is 9 and enjoys art, music and reading. She plays softball, ice hockey and soccer. She also loves to catch butterflies, and play with her friends.

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Strength

"Anyone can give up, it's the easiest thing in the world to do. But to hold it together when everyone else would understand if you fell apart, that's true strength."



Blessed Because of You Two

As your mommy I am constantly reminded of how fortunate I am to have such wonderful children. I am grateful Madison that you are healthy, and I am grateful Robby that God has given me more time than expected with you.



I think God graced me with a horrible pregnancy with Madison to help me be thankful for the amazing little girl he gave me. I think he gave me such an easy pregnancy with Robby to balance out all the tough times that were lying ahead for me with him. There isn’t a day that goes by that I don’t think about how you two came into my life and changed it for the better. The last 10 years have been both life altering and inspiring. You have made me a better, stronger person and for that I thank you.

Love,

your mama




"Every child is gifted. They just unwrap their packages at different times." -- unknown

"You've developed the strength of a draft horse while holding onto the delicacy of a daffodil ... you are the mother, advocate and protector of a child with a disability." -Lori Borgman

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Cory Marie Frederick-Prohaska

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Seizure Meds We Have Tried

1. Phenobarbitol ( Discontinued because seizures changed)







2. Topamax (currently on and working well)







3. Keppra (Robby was on this at the same time as the Lamictal for added seizure control, but we discontinued this med due to major behavior issues)







4. Lamictal (Discontinued because seizures changed)







5. Clonipan (discontinued, caused behavior issues)







6. Zonegran (discontinued because it made him like Jekyll and Hyde, horrible mood changes)



7. Vimpat (Currently on and taken with the Topamax. Working well)







 

God Sent Me An Angel

God sent to me an angel, it had a broken wing.

I bent my head and wondered "How could God do such a thing?"

When I asked the Father why He sent this child to me, the answer was forthcoming, He said "Listen and you'll see."

"My children are all precious, and none is like the rest. Each one to me is special, and the least is as the best.

I send each one from Heaven and I place it in the care of those who know my mercy, those with love to spare.

Sometimes I take them back again. Sometimes I let them stay. No matter what may happen I am never far away.

So if you find an angel and you don't know what to do, remember, I am with you, love is all I ask of you."

Robby's Caringbridge page

  • http://www.caringbridge.org/visit/robby

CaringBridge Friends

  • Alex and Lauren

United Mitochondrial Disease Foundation

  • http://www.umdf.org

United Leukodystrophy Foundation

  • http://www.ulf.org

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