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...

Monday, May 24, 2010

We back and we have updates!

Hi everyone,

I know it has been a while since my last post but we have been crazy busy lately.

We went to both Grandma's on Mother's day...Eleanor had lots of FUN!
Then the next weekend a jewelry show (jewelry by my sister!) at Troy Bank and Trust in Troy, AL.  We raised over $500.00 for CF in 4 hours...so excited.  Thank you to everyone who gave!!
On Saturday off to Birmingham to see Jennifer on Senior Recognition Sunday...can't beleive she is going to graduate this Thursday!!

Life was hectic but fun and then on Sunday Eleanor got sick. :(   She emptied her stomach contents at my mom's house after she had gone to sleep.  She was so cute though...all she wanted to do was go back to sleep.  Her episodes woke her up three times and all three times she went back to sleep after a pj change and a bed sheet change.  She gave Grami a workout!

On Monday we made it home and she seemed to recover and we even went to the beach on Tuesday with Daddy.  She had such a blast!! 

Wednesday, well, it was a really bad day all around.  She acted horribly and wednesday are the days that it is just the two of us all day.  Needless to say, when bedtime came I was past ready. 

Thursday she woke up with a low grade fever so off to our peds dr it was.  She had a sputum culture done after much angst and we didn't really know what was wrong.

This weekend she did pretty good...she had no stamina on Thursday or Friday but when she saw Nanny and Bubs she acted a lot better.

Today I get a call from the doc's office and we have cultured PSUEDOMONAS AGAIN!!!  So frustrating does not even begin to express my feelings.  We were in the hospital in January for it and it was supposed to stay away!  I guess nobody told the PA that.  So starting tomorrow we are on TOBI for at least 28 days it may be a month and a half.  We are also going to be on the oral antiboitic Cipro for 14 days.  TOBI means albuterol and this means five breathing treatments a day with the Cipro twice a day and vest twice a day.  UGH!! 

The GOOD news is that we have some way to treat the bacteria...the bad news is that she shouldn't have it!  I know you all pray for her but we will need lots of prayer over this next month as she is not always happy sitting still to do her treatments now and she is quite ill-tempered because of the PA.

I do have a funny story...
We get home on Monday and Eleanor and I have the following conversation...remember she is not yet 2.5 years old yet.

Eleanor: I want to go bye bye!
Me: Where do you want to go?
Eleanor:  I want to go to the grocery store
Me: Why do you want to go to the grocery store?
Eleanor: I want a cookie
Me: You want a cookie, what kind of cookie?
Eleanor: a sprinkle cookie to eat!  Yum!

Also after struggling with Eleanor for A WHILE at the doctor's office to let them look at her throat (which we never accomplished) the nurse says okay Eleanor I'm done, can I have a hug?  Eleanor looks at her and then gives her a big squeeze and while she is hugging her she says ooooweeee!

Then we go out in the hallway and she walks up to her doc and gives her a hug.  She is so sweet!  I think she was saying nice to know you but I am leaving now!

One more!  This Saturday we had gone outside to draw with chalk and we came inside first then Robert came in and when he came in she looked at him and said," Daddy what are you doing?" Like it was her business what he was fixing to do...

Anyways, sorry for the long post but I wanted to update you since it had been a while.


Tuesday, May 18, 2010

Tuesday, May 11, 2010

CF Awareness month

May is offically CF Awareness month.  This is the time to get the word "out."  Tell  your family and friends about this disease and about how it affects those who have it.  Awareness equals understanding and understanding equals more volunteers to help raise money for a cure to this horrible disease.

We still have a little over a week for our Eleanor's Extravaganza for CF!  If you would like to donate $5 for a ticket for our prizes. Please email me at r-cguilford@mchsi.com and I will get the information to you.  For those of you who have donated thank you!  We are also having a jewelry show in Troy at TB&T this Friday, May 11th from 10 am - 2 pm.  If you are in the area come by and see what we have.  They would make great graduation presents and summer birthday presents.  All, 100%, of the proceeds go directly to the CF Foundation.

More later...Eleanor is waking up!

Saturday, May 1, 2010

Eleanor, drawing, and CF Friends

While at the beach the other day, Eleanor discovered that she can draw in the sand.  Today we thought about taking her to the beach...that was before the weather turned out to be so bad.  We wanted to get down to the beach just in case this oil does come our way.  We are not only concerned about the economic impact but the health impact for our daughter if it does come to our shores in south Walton.  Going to the water was not meant to be though. 

I bought Eleanor some sidewalk chalk at Michael's on Friday and stocked up on bubble solution as Grami bought her a bubble machine to have so I do not have to constantly blow bubbles when she is out front swinging.  Out front we went, bubble machine going and chalk in hand.  Eleanor had the biggest time.  Our neighbor's kids came over to play in the bubbles with her.  She turned our gray porch into a white and yellow piece of art.  I took pictures but I have to upload them.  I will get them up to let you see her.  She was also covered in yellow and white chalk it was a funny sight!

CF and CF Friends

Eleanor is almost done with her TOBI treatment for this 28 day cycle.  YEAH!  Her cough is back with a vengeance.  We are dealing with it and are hoping it will subside shortly.  Pray for her cough and that it is only the TOBI and nothing else.  I would also like to add three names to your list to pray.  Taylor (16), Megan (11), and Lacy (18 months).  They all have CF and are dealing with different issues right now.  I know that their families would appreciate all the prayer they can get in lifting up their children.  It seems like the people with CF in my area have been hit pretty hard of late.  So any extra prayers you can send up are appreciated.  This disease makes your family grow.  Once you met a fellow CF Mom you learn about their children then you want the best for them as well.  I hope that makes sense!

Will update with pictures soon.

I do have a quick funny story...

Aunt Ashley got Eleanor a 2.5 tall Elmo doll.  Today Eleanor sat him up on Robert and took her food from her kitchen and "fed" Elmo.  She would tell him to finish chewing or all done with that.  Here Elmo time to have your tomato.  She did this for about an hour.  Robert and I got some very good laughs.