Welcome to the life of Eleanor Guilford! She is a sassy, cute three year old who loves to run, read, and ramble on about anything...did we mention she just happens to have CF? Follow our struggles, triumphs and everyday lulls...

Saturday, June 26, 2010

ate photos soon.
Saturday...means daddy is home! We have had a busy week with cousins, going to the zoo, seeing nanny and bubs. TOBI treatments are going well.
I will upd

Friday, June 25, 2010

Heavy Heart

I have been following a blog for the past two months called Not so bright and shiny.  (http://www.notsobrightandshiny.blogspot.com/) It is and was the journey of a brave seven year old boy named Conner.  He had CF and Prune Belly Syndrome.  He is no longer fighting the disease as he is in the hands of our Lord.  I know I have lots of prayer warriors that pray daily for my daughter.  I ask that you will pray for Conner's family in this time of grief.  There are no words to offer her, Conner's mother, I don't know how she feels but I do know that what we can offer her and the rest of Conner's family is prayer for peace and love through the grieving process. 

This disease is real, it takes lives everyday...this is just a reminder of how much people and families with CF have to go through with this horrible disease.  This stat is from her blog: CF death statistics on average are 484 deaths per year, 40 per month, 9 per week, 1 per day


Friday, June 18, 2010


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Finally Friday

Hey it's Friday!!  Eleanor and I started it off on a good note, actually it was on two good notes. :)  We went to the beach this morning and had a blast.  She is quite the fearless girl when we go down to the beach.  Spent an hour running around in the surf and on the sand.  Getting it everywhere...it's cute to see her run around with sand all over her knowing that in a few years it is probably going to bother her...then again maybe it won't who knows??

The other good news we received this morning is that her sputnum culture came back normal.  YEAH!!!  We are so excited that it came back normal and for now the psuedomonas is gone.  We start our TOBI treatments again this evening for another 28 days.  Pray for Eleanor as our compressor seems to have slowed down a bit and we are trying to "fix it."

In a bit of non-cf news my Grandmother in Ohio seems to be having up and down days.  She is 90 years young and her faculties have not left her.  She is just in need of some up-llifting prayers.  She fell about a week ago and she also has a kidney infection.  I think there is something else that is not quite right.  If any of you prayer warriors out there could uplift Mary Shank it would be much appreciated.  How do you tell her you love her and that she is thought about when she can't really talk on the phone and isn't getting on the internet?  I guess by good old snail mail. 

Thanks for stopping by...I will update our TOBI progress again soon.


Wednesday, June 9, 2010

This treatment done!

Yesterday was Eleanor's fourteenth day of treatment for her Psuedomonas!  We will go to Pensacola on monday morning for a throat culture to see if she has gotten rid of it.  Then I believe we will be back on the TOBI for 28 days since this is our "ON" month.  Prayers that the psuedomonas will be gone and if it is not that we have ways to deal with it.


We went to Grammi and Pawpaw's today.  Eleanor had a great time seeing her grandparents for the first time in a month!  She was so excited to see them.  She tells you about her day by asking questions.  It is so cute.  For example:  Pawpaw did you have a good lunch? Did you eat like a Big Girl? Did you want to go outside?  Her hair is also long enough to pull up in a pony tail.  She calls her pony tail her "big hair."  So she pranced around today with a pony tail to help keep her mildy cool in all of this humidity.  She enjoyed playing in Ozark and then it was back home to get here in time to see Daddy.

'Tude problems

Eleanor is going thru her period of terrible twos.  The fun of a two year old and sass with piles of 'tude sometimes make you want to go mad...just pray for Robert and I.  She is a great child most of the time but we have moments! :)

This past weekend we got to celebrate my birthday...we had a great day with Eleanor staying with Nanny and Bubs.  We also got to see some friends we have not see in a while.  It was great to see Caleb and Whitney!!  We also went down to the beach and Eleanor had the best time.  She is constant movement.  Walking from the beach to the little sand bar that was about five feet out and back.  This was repeated I have no idea how many times.  Eleanor received a great breathing treatment this time.

When we visited the beach yesterday there was NO OIL!  Please come if you have plans too...we are already seeing less people because of the news reporting.  Right now our beach is clear come enjoy it while you can!

Thanks for reading and the prayers!