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, March 31, 2011

Updates, News and stuff!


We are still in the midst of doing our TOBI treatments.  She is doing well most of the time.  We are starting to encounter the I don't want to's.  Right now we just change up her routine and let her paint or play with playdough while she is doing the TOBI.  It seems to have worked as today she didn't want me to take the TOBI off because she wanted to continue to paint!

She is now on Prevacid once a day for her reflux.  This is a result of her bronch.  Found out that she has very bad reflux.  Interesting as she never seems to complain about it but who know that she is dealing with that she doesn't tell us. :)  She is a strong little warrior.


Robert and I went to the doctor yesterday and confirmed that we are pregnant!!
This is our baby #2.  She/he measures at 3 inches and will be twelve weeks tomorrow (4/1)!  We are due on 10/14/11.  Isn't it amazing how meticulous God is??  What a precious sight it was seeing this little one kicking, stretching, and dancing around.  The doctor says everything looks normal and healthy.  "For you created my inmost being; you knit me together in my mother’s womb. ~Ps. 139:13

It is not wonderful that you can see the profile of the little face the nose, lips, chin, forehead.  The little legs.  You cannot see the arms because the baby was moving so fast.  We are very excited and would ask all of you to pray for a healthy baby and a smooth pregnancy.

Eleanor doesn't quite understand.  When we told her she was going to be a big sister she did a little dance and screamed, "Yeah!!"  She told us that she can teach it numbers, letters, and to help it drink.  I will update you with her other interesting insights as we get them.

CF Fundraising

We are in the middle of our fundraising.  I have tshirts for 15.00 and we have raffle tickets.  If you would like to just make a donation please click on this link:


Coleen, Robert, and Eleanor

Monday, March 14, 2011

Bronch Results

We received the Bronch results in several different batches so I have waited to post until we know all of them.  The day of the bronch went well.  Eleanor only had a little anxiety...mostly about seeing the guy who does her throat culture.  She was very happy when we said that she would not be seeing him today.  We saw our doctor and all the pre-op nurses.  Eleanor even walked off with the anesthesiologist without even looking back.  So before the procedure Eleanor did wonderfully.  A wonderfully comforting thing happened right before she was taken down.  The doctor came in and talked with us and said, "Do you mind if I pray?" "We would love that!", was our reply!  How awesome...to know that the person whose hands she will be in wants to pray before the procedure...calm and peace were given to us from the Lord.
We waited about 30 minutes and the doctor came back up and said that she looked better than he expected.  (Yeah!) He saw no signs of any problems and what secretions she did have; he sucked out.
Now we were led back to her room where she was waking up.  This part did not go as well...the meds made her a little angry.  She was not happy to have an IV in her foot.  She tried to pull it out several times.  Let's just say that when we left the hospital and finally got in the car we were wondering what child that was that woke up from the procedure.  She did start acting normal when we got to the car and proceeded to talk and tell us she was hungry.
That afternoon she was on the couch playing with Bubs Ipad when she just up and fell asleep on me.  THIS NEVER HAPPENS.  We figured it was just the after effects from the procedure.  Well, she got goosebumps all over her then proceeded to get hot...like on fire hot.  We took her temp and it was over 102.  So we called the doctor and were instructed to give her some tylenol to help.  We could definitely tell when it kicked in.  She was up and talking again like her normal self.  The fever went away with the medicine and when she woke up the following morning she pronounced herself well!

The results of the test were really good.  Her first culture came back normal...this would have been the one to show if she had any pseudomonas.  The second culture which would have told us if she was growing any fungus or mold came back normal!  The third one which tells us if she had acid reflux came back positive.  It measure 4+ which is on the high end.  It is weird because we have never noticed it but then it was mentioned that it can cause a cough.  Hmmm...wonder if that is what causes the unexplained cough sometimes.

Her labs came back good except her Vitamin A level was low again.  We will be taking an extra dose of the vitamin to help bump it up.

Those are our results!  Praise the Lord we received a good report.  It could have been must worse.  We are very thankful.

Thank you for your prayers and support.  We are already back on our 28 days of TOBI.  She is handling it really well.  She is such a trooper!