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...

Thursday, August 26, 2010

Updates and NEWS!

I have not kept my blog up like I should lately.  Sorry about that!  I am going to do better...


We are doing quite well with Eleanor's TOBI but her cough is absolutely horrible!  We were in O'Charley's the other day and she coughed (well one of many times) and the people who had just been placed next to us asked to move.  Like they were going to "catch" what she had.  THE NERVE of some people!  Since we have decided that CF is not going to be our identity I did not get up and tell the man that I was 100% sure that my daughter would not get him sick.  Robert handles these situations better than me...I was steamed for about five minutes and then decided not to let him ruin my meal.  I guess my point is that I understand people are still probably concerned about the H1N1 virus and all but if you have ever heard Eleanor or any CFer cough you know that it does not sound like a normal cough.  :)

Moving on...
Grami and Pawpaw came down visit this week and we went out to eat twice yesterday.  Eleanor asked to go to get cheese dip and tomatoes when they first got here.  (it was almost lunch time)  She loves to eat her cheese dip, chips, a whole cup of tomatoes, and taco meat.  The lady at the restaurant remembered us from last time and personally asked Eleanor what she wanted.  Eleanor told her Cheese dip, tomatoes, and taco meat!  We were eating our meal and the lady came back by and Eleanor decided she would share a tomato with her.  The lady took the tomatoes from Eleanor's little hand and told her thank you.  Then she ate it!  She did this twice.  As you can tell Eleanor did not take after her parents...she does not meet strangers!

Last night we ate out at Carrabba's and at the end of our meal when we were about to leave our waitress came up to the table and told us bye.  Eleanor said, "Bye!"  Then looked at the waitress and said, "I want to give you a hug!"  I wish I had a picture of the waitress' face...it was priceless...she was not quite sure if Eleanor really meant it.  So she asked Eleanor, "Do you want me to come give you a hug?"  Eleanor responded, "Yes!"  So the waitress came around the table and gave Eleanor a big hug.  Eleanor then said, "Thanks!"  The love of the Lord certainly shines through this little 2.5 year old.  There is no other way to explain it!  The power of the hug that she gave that waitress was tremendous.  We left the waitress with the biggest smile she had on her face all night!


In other news, part of the reason I have not been posting so much is because I have been soooo tired lately.  I would just crash when Eleanor would go down for her nap.  Some of you probably already have it figured out. Eleanor is going to be a BIG Sister on April 19, 2011!  We thought we were 8 weeks but after the appointment today we found out that we are actually 6.5 weeks along.  The doctor was please with the way the baby looked on the ultrasound.  We go to see her again in two weeks to make sure we are still progressing along like we should.  We didn't tell everyone until 8 weeks with Eleanor but we decided to go ahead and tell people now. 

Please pray for the baby that the Lord would put his hand on this baby the same way he covered and protected Eleanor while she was in me.  I know I will feel better after the first trimester is over.  We covet your prayers and will share updates as we get them.



Monday, August 16, 2010


We started TOBI last Friday and she has done well.  Our cough is already here and it sounds bad.  The summer cold has really never gone away.  Her nose did stop running but now it is really stuffy.  She is having a hard time adjusting to her new schedule.  She seems to be really tired while doing her night treatments but then when she gets in bed she talks for almost an hour.  Then she wakes up before she should the next morning and is ill. 

She is going through a two year old stage right now.  She is happy and then all of the sudden she is not happy with the way things are going and we have a little breakdown.   Ah, the strongwill of my two year old...I am thankful for it as it keeps her going with her fight against CF but boy sometimes it makes for a difficult day.  We have to take the good with the bad. 

Prayer for my grandmother is still appreciated she is back at the nursing home but she is still having issues.  Prayer for Eleanor during her "stage" is certainly appreciated. 

Funny Story

Eleanor went to church this week and was asking all the way if she was going to see Ms. Amber.  I told her yes...she would ask about every five minutes.  When we got to church she was ready to get to her classroom.  This is a big deal because it usually causes anxiety when we tell her she is going to church because she does not want to be away from mommy and daddy.  We opened the door and she ran right to Ms. Amber and gave her a big hug and started talking a blue streak.  This is how we left her when we went into church and she was still talking when we got back.  Such a great thing now that she does not cry when we go to church!


Friday, August 6, 2010

Summer Cold

We have a summer cold.

Eleanor started a cold Tuesday and it has gotten worse.  We went to the doctor.  Our normal doc was not there so we saw the other doctor in the practice.  I was a little worried because as you know Eleanor doesn't like doctor's visits.  We went and she let them listen to her chest and stood on the scale without too much trouble.  Then she clung to me while we were waiting for the doctor.  He came in and she pretended to be asleep.  This actually worked in our favor.  The doctor listened to her lungs, tummy, looked in her ears (there was no screaming...this is not normal!). 

Then it came time to look into her mouth...this never goes well.  He asks her to open her mouth and she shakes her head no.  The doctor reaches in his pocket and says, "What do I have in here?!"  He pulls out a bracelet.  Eleanor starts smiling and says, "A bracelet!" He asks her again to open her mouth....do you know what....she popped that mouth open wide!  I could have hugged him.  This usually does not go well and we went the entire time without screaming!  Yeah!  He could not really find anything wrong.  We were dealing with a cold virus.  Yuck!

Tuesday night was a long night...Eleanor has spoiled me...we do not have very many bad nights.  We did not get very much sleep so Wednesday was a bit of a long day.  She continued to have her runny nose and a little fever.  Wednesday night she slept like a log!  Yeah!

She had a temp but it is gone now.  Her nose is not draining like a faucet anymore but she cannot breathe out of her nose.  We are doing saline sprays three times a day.  This seems to help but is only temporary.  Yesterday she started this lovely loud barky cough.  The CF kind that is so loud that if you are not used to it you look around for the smoker in the room.  She continued to cough through the night last night. 

This morning I finally called Nemours and talked with our nurse.  (She is back from Maternity leave!  Yeah!  We have so missed her!!) We are continuing the nose spray but are going to add albuterol to help with the inflammation. 


Prayers that Eleanor's cold will continue to get better and she can start sleeping through the night.  Also, we start the tobi at the end of next week. 

Also please pray for my grandmother.  She has been in and out of the hospital.  There are too many issues to list but she needs your prayers for encouragement.