Sunday, December 11, 2016

Ellie's First Post

Hi, My name is Ellie and I am starting to blog for the first time :)
This is me. 
I am 10 years old, in 5th grade and live in Massachusetts. I have a dog named Tillie and a brother named Will.
10 years ago on today my family brought me home for the first time!!!!!And my mom and dad just showed me the video of my mom moon walking out the door of Boston Children's Hospital with me for the first time. My parents can be strange!! WHO WALKS BACKWARDS OUT OF A HOSPITAL??????

I have broviac CVL  and I am the 23rd person on Omegaven, and I am still on Omegaven.
I went to clinic this week and I had a DEXA Scan. I had to lay on this table and a machine went over me. It was not scary!! Clinic is NOT SCARY!!!
 I enjoy playing Minecraft, watching television, and horse-back riding. Do you have Short Bowl too??  I'd like to hear from you.  
More to come, see you later!

16 comments:

k8land said...

This is so cool! Great to hear from her.

Jennifer Leichter said...

Spelling champ!! Great start Ellie

Barbara Meagan said...

Awesome, Ellie!! Keep it up!

Stephanie said...

Hi Ellie, thank you for sharing your story so far and look forward to hearing more! I work with your mom at ThriveRx and an adult on TPN. When I first got sick I started blogging too and really enjoyed it. It's surprising how much your story and thoughts can inspire people all over the world so keep it up!

Karen Petterson said...

Hi Ellie! This is going to be fun for all us blog followers - thank you for taking it up again from your parents! What is a DEXA scan?

Beth Brogan said...

Ellie!!! Great first blog post. I can't wait for more. That moonwalk made a lot of people very happy! <3 <3

Kate said...

This is Awsome!! (You really are a good writer) We all love you from Maine

Izabela said...

Hi Elle, what a great idea to start posting. My son Timmy is 3 years old and also has extreme SBS. We live in Poland (Europe). I hope that some day he will start to blog with me. It is great to hear that clinic is not scary :)

Dave Allison said...

I am proud to have a Facebook blog friend who is as brave and beautiful as you are.

Erin Johnson said...

Hi Elle,
I think it is so wonderful that you are starting a blog! I went to Elementary school with your mom and we became great friends! When I was in eighth grade I had two surgeries removing 2 feet 6 inches of my small intestine. I wished I had someone to reach out to that went through a similar experience. You are so brave!

Erin said...

Hi Ellie! I'm so glad to hear from you on this blog. You met me a long time ago, when you were 4, but you probably don't remember that. I don't have short gut, but my daughter, Blaise, does. She's in 2nd grade now and she doesn't need TPN or a g-tube any more, but she does have to eat a ton to keep growing. I hope fifth grade is going really well and that your family has a fantastic holiday! (PS Your parents are strange, but just think how boring life with normal parents would be!)

Jill said...

Hi Ellie, my name is Jill - I know your mom and dad from when we all lived in the FL keys driving boats, snorkeling and having fun. I think it is the coolest that you are contributing to your blog. I look forward to sharing it with my kids, Lila (age 9) and Colby (age 7) - kind of similar to you and Will. I think you're pretty awesome - keep it up!

Anonymous said...

Hi Ellie - so nice to hear from you! I started reading this blog in 2008 when my son was in hospital with SBS. It gave me a lot of hope to see that you were jumping over your hurdles like a champ! I can't wait to read more. My son will be 9 in January - he was on TPN for 18 months and was g-tube fed until late last year. He was a 29 weeks prem and he lost 50% of his small intestine and his ICV due to NEC.

Warmly,

Susan in Canada

Tasha said...

Hi Ellie. This is the Batesole family. We have 4 boys. 10 ( 5th grade like you) 8, 6 and 3. Bryer our 3 yr old has short gut and a broviac like you. Thanks for sharing. ❤️

Anonymous said...

Hi Ellie, my name is Alex and I am 12 years old. My mom has been reading your parents blog ever since you were little. I also have short gut syndrome. I have had it all my life. I have a Hickman CVL which is exactly like a broviac just a little bigger. I am on TPN 7 nights a week and on lipids 1 night a week. I also have a g-tube for feeds at night. I have made progress in lowering my TPN. I hope your test went well and happy holidays!

Unknown said...

Ellie, you are exceptional! Thank you for writing!

We just took our baby (with her broviac and ileostomy) home from the hospital at 6 1/2 months. I wish we would've taped it like your parents. I think I tried moon walking, too!!

Love from Pittsburgh!