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...

Friday, November 5, 2010


October Updates

Where to start...it has been a hard month.  We lost two more family members in October.   Robert's Aunt and my grandmother passed this month.  This world lost two good Christian ladies.  However, they are no longer suffering and are with Jesus.  We rejoice for them!

Eleanor was on TOBI this month and it was a hard TOBI cycle this time.  It started off rough with a cough after only a day and a half and the cough is still with us.  It also seems to have sapped some of her energy.  If you didn't know her you would probably think I was crazy but she is more run down after this cycle.  I am happy that it is doing its job but am ready for a cure so we do not have to do this....

We went to the pumpkin patch in Niceville at the UMC.  Eleanor had a blast!

She was smiling really good in this picture.  She also went to the Peanut Festival with her Daddy, Nanny, Bubs, and cousins.  I have uploaded these pictures on my share site. http://guilfordfamilyphotos.shutterfly.com/

We also added a hamster named Cassie to our family.  She is a black bear hamster and Eleanor loves "to take care of her."  She does not get to play with her a lot right now as Cassie is a baby hamster but as she grows it is going to be an interesting journey.

The Clinical trial for the combo of the two drugs to cure the DF 508 gene has started.  If successful this could be it!!  To say we are excited is a HUGE understatement!  :)  Please pray that these trials are successful and that the FDA will approve the drug after the trial is complete.  I will definately be keeping everyone updated on this trial.

We go to our CF clinic visit on Nov 16th.  We are praying for a smooth visit as they are always stressful on Eleanor...

Eleanor Moments

There have been soooo many I can't list them all but here are a few highlights.

While I was gone to my grandmother's funeral in Ohio, Nanny and Bubs came down to keep Eleanor while Robert went to work.  Robert called his mom to hear hysterical laughter on the other end.  Bubs was on his hands and knees trying to open the magnetic door to our entertainment center so he could turn on the sound system.  After the laughter stopped he heard Eleanor say to Bubs, "Let me help you Bubs!"  Robert proceeded to tell his mother how to get it open...only to hear mid-conversation..."See that's what I am talking about!"  Eleanor had opened the door for her Bubs.  It was quite funny. :)

She has this habit of just laughing not fake laughing but infectious, belly laughing...
We were on the way home from the ice cream store (we went since she had a good day potty training) and Robert and I were talking in the front seat.  All of the sudden we heard laughter from the back seat.  We still have no idea what caused it...maybe it was just between her and God.  It only took about fifteen seconds before we were all laughing so hard we were all crying...those are the moments that no money can buy!

She also loves to sing, she will break out singing all the time...her new favorite is No More Monkeys Jumping on the bed.  But we were singing Jesus Love Me and she said, "I love Jesus!"  Then she wanted to see Him.  So we talked about Jesus and how he can come into our hearts...you could see those wheels turning.  Later that day she looked at me out of the blue and said, " Jesus is in your heart (pointing to my heart) and in my heart (pointing to her heart)." 

Not sure it gets any better than that!

Pray for my family and my extended family in our season of loss.  Pray for Eleanor that she continues to grow not only physically but spiritually.