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...

Wednesday, January 19, 2011

Doctor's appointments and Birthday

Here's our update:

I went to the doctor on Saturday and after a chest x-ray and a flu test (doctor's tend to freak out when you mention your child has CF, its comical, to me) I was diagnosed with acute bronchitis...joy!  I have never coughed so much in my life but I would not complain since my little girl coughs all the time and keeps a beautiful smile on her face.  I am happy to report with the new antibiotic that I am feeling 100% better and sounding about 75% better. ;)

Eleanor went to the doctor on Monday.  We went in hoping we were not going to have to go into the hospital.  You see, she has been coughing for no reason and that is not normal or good for her.  She did really good.  She weighed in at 29.9 lbs and was 35.7 inches tall.  She is continuing to increase in weight and height but it was just not a huge jump like before.  She let the doctor (this is a new CF doctor to us...she likes him) listen to her chest and "tickle" her ears.  She did keep asking when it was time to go...she always likes that part the best.

I can't remember if I posted this or not but we were taken off TOBI because we had no psuedomonas cultures three times.  This was GREAT!  But not really...let me explain...we know that psuedomonas is going to be her battle and have accepted it.  So when we were negative we were excited but when we were taken off of TOBI we were concerned.  She had not been sick in almost a year and we felt that main reason was the on/off TOBI for 28 days.  We had no TOBI for November and December.  Mid-December Eleanor starts a snotty nose and congestion.  No problem, right!  Get Cipro in her and she gets better.  Cipro is out of her system and now we have a snotty nose and cough.  YUCK! 
Did I mention that December would have been the ON TOBI month???

Are you wondering where I am going with this... Here it is....
We were hoping the doctor would be willing to let us try the TOBI again before that hospital visit had to occur.  GUESS WHAT?  He did...I know we are quite weird to want another treatment for our daughter but the record, for her, has shown TOBI works. 

So we are on TOBI again.  YEAH!!  She is still coughing but seems to be doing better.  After the TOBI we are going to go in and have a procedure called a Bronch done.  More on that later...

Please pray that the TOBI helps whatever is wrong with her and that the upcoming procedure goes smoothly. 

ELeanor's birthday is the 28th of the month and she is sooo very excited about it...I will keep you updated on the party and what my two year old almost three year old has to say about it. :)

Your prayers, as always, are felt on a daily basis and truly appreciated!
Coleen, Robert, and Eleanor

Friday, January 14, 2011

New Year News


We have been very busy around the Guilford house.  We had a great Christmas and New Years's.  Even though all three of us were sick and on antibiotics the week of Christmas.  This was Eleanor's first year where she knew exactly what was going on at Christmas.  We left Santa cookies and milk the night before and sang Happy Birthday to Jesus on Christmas.

Eleanor's cold didn't really go away when her Cipro was over...so we have a doctor's appointment on Monday to see what is going on.  We did do a culture that came back ok but she is coughing and sleeping A LOT...which is good in some ways and bad in others.  Those are two classic signs (for her) that she has psuedomonas.  Prayers that we will be able to figure out what is wrong with her.

I still have my cold that will not seem to go away.  I now have a very annoying cough that will not go away it was kind of made worse by our trip to Glendale to see the Auburn Tigers win a National Championship!!  I yelled a little too much. (OOPS!) Now I have a bad cough and cold...

Will upload some pictures of our adventures in Arizona and our Christmas. 

Eleanor did enjoy some grandparent time while we were in Arizona...I think everyone had a fantastic time!

Prayers for Eleanor's appointment on Monday and that my cold will get better. 

We are fixing to ramp up for the Great Strides walk season soon...will have more on it later.