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Mi historia

Our Sweet Baby....We love you forever....

May 30, 2007-July 27, 2008

Landon had Leigh's disease, a mitochondrial disease.  Please read his story to learn more about our sweet boy.

Landon's Hope 2011
www.umdf.org/landonshope
http://www.onetruemedia.com/shared?p=5d3b601f49b78121c58e96&skin_id=601&utm_source=otm&utm_medium=text_url



Landon was born a very healthy little boy.

At 2 months we noticed he had stopped gaining weight. Over the next few months Landon's want to eat had decreased and was extremely uncomfortable after eating. I struggled to get him to eat 3 ounces at a time and he definetley was not getting the intake he needed. Landon babbled jealously at his big sister, we saw a few smiles, but not consistant, he was diagnosed with Failure to Thrive.

At 3 months of age Landon had his first over night hospital stay and nothing was found, he started to act better and eat a little more. At this time we were referred to A GI specialist at Children's Hospital. At 4 months Landon had a endoscopy and ph probe placed for 24 hour monitor for reflux. It was then determined that he had sever reflux. He was started on prevacid and we noticed a increase in appetite and he was mostly taking in 5-6 ounces per feeding. Unfortunatley this lasted only a few days, at which time he started vomiting and stoppe eating all together. He was admitted to Children's. Within a few days Landon was diagnosed with Renal Tubular Acidosis and we were told he would outgrow this by age 4-5. After talking with our local pediatrician and Landon still not tolerating foods, they then started the process looing for a metabolic condition. He had elevated lactate and pyruvate, which was consitant with a metabolic disorder. Neurology was called in and were suspicious since Landon had lost all skill he had previously had. An MRI was done. After Landon's MRI, we were visited by the metabolic team at which time we got the devestating news that Landon had Leigh's Disease. A terminal disease, no cure, and no treatment. We were told our sweet boy would live only a few short years, if we were lucky. We took Landon home after the month stay at the hospital and loved him up as much as humanly possible. Landon was TPN dependent and we did get a few more smiles from Landon. He developed sezures in Feb 08 and it was a downward spriral from there. Though we were under the care of hospice, we were hoping to spend a few years with our sweet boy, though we knew we might not be soo lucky. May 30, 2008 we celebrated Landon's first birthday and planted a tree in the backyard in honor of him. July 27th 2008 at 815AM Landon grew his wings and flew home.

Landon touched more people in his short 14 months than most do in a lifetime. He is forever with us in our hearts.

Below is the link to a montage I put together in honor of Landon's precious life.

http://www.onetruemedia.com/shared?p=5d3b601f49b78121c58e96&skin_id=601&utm_source=otm&utm_medium=text_url

Fuente

Tami Weatherby posted a new journal entry.

Thank you to everyone who volunteered, sponsored, donated, and participated in Landon's Hope.  The day was as wonderful as it could have been.  To everyone who joined in ... Lea más

Tami Weatherby posted a new journal entry.

Thank you to everyone who volunteered, sponsored, donated, and participated in Landon's Hope.  The day was as wonderful as it could have been.  To everyone who joined in ... Lea más

Tami Weatherby posted a new journal entry.

HAPPY BIRTHDAY LANDON.....WE LOVE YOU........................ Lea más

Tami Weatherby posted a new journal entry.

Wishing all the mom's out there a Happy Mothers Day.Cherish everyday you have with your children, family and friends.I wanted to share a picture of Landon's tree, we ... Lea más

Tami Weatherby posted a new journal entry.

Hello,Exciting news!!!!!!! We have the fundraiser put together. It is a 5k walk-a-thon. The UMDF has set up a website for me. You can register online to walk, if you are ... Lea más

Tami Weatherby posted a new journal entry.

I have been pondering on what to write for a few days. We have been doing good, the "new normal" is taking place. I think the fact that life will never ... Lea más

Tami Weatherby posted a new journal entry.

Good Morning,We put the Christmas tree up last night. Paige was soo excited to get it up. We made our own ornaments this year and put pictures of both her and Landon on ... Lea más

Tami Weatherby posted a new journal entry.

Hope eveyone had a great Thanksgiving. Paige and I took a trip with my sister and my neice and nephew and my dad to Kansas City. My mom had to work so she flew out for the ... Lea más

Tami Weatherby posted a new journal entry.

Hi all,I have put a photo of the Rock Star in the photo section. Time seems to be going by fast, although it feels like years since I have held my sweet boy. The grief has ... Lea más

Tami Weatherby posted a new journal entry.

The picture above is from Halloween last year. He was in the hospital still undiagnosed at that point. I had come home for the day to spend Halloween with Paige. My mom ... Lea más

Tami Weatherby posted a new journal entry.

Please help spread the word about the need for federal funding for mitochondrial disease research. Send a letter to your federally elected official today! You can click on ... Lea más

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