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...

Tuesday, October 4, 2011

Eleanor is going to be a Big Sis this Friday!

We are pretty much moved in now and a good thing too because baby boy is scheduled to arrive this Friday! I went to the doctor today and my blood pressure was a little high when I arrived but after laying on my left side it went down.  Doctor says when I am this late in the pregnancy (will be 39 weeks this Friday) and the blood pressure starts getting high it is time to have the baby.  So I will report to the hospital on Thursday to be induced on Friday morning. 

I am ready for him to arrive and for Eleanor to see him.  She has been asking when his birthday is going to be for a week now and now we can tell her.  We would have never been able to plan it like this but this Friday is my Grandma Shank's birthday (she died almost a year ago) so this is already a special day and it will be even more special when he arrives.

Keep us in your prayers on Friday and I will do my best to get his name and picture uploaded when we get home.


Tuesday, August 23, 2011

Moved but not quite moved in...

Well, we have moved and are now in Hartford, AL.  This moved happened so fast that it is still hard to believe that we are in Hartford.  Two months ago if you have told me that I would be in Hartford in August, I honestly would have thought it was crazyiness.  Robert was offered a job opportunity in the town he grew up in and after much prayer and wrestling with what we were to do we felt it was the Lord's will that we move back to Hartford.

It was a VERY hard decision to make since it meant uprooting our lives with me being 7 months pregnant. Leaving our church family and friends behinds was very difficult for all three of us, but everything has worked itself out according to His plan.  Eleanor misses her friends but is having a ball up here in church.  There are several girls her age she loves to play with at church.  You didn't think she was going to have a hard time finding friends, did you? :)

Another benefit is that Robert's work is only three minutes down the road.  He was driving 45 minutes one way when we were in Florida.  We get to enjoy much more family time as he comes home for lunch and get home a little after four in the afternoon.  I have to say it is wonderful to spend more time together as a family.  Speaking of family we are now much closer to both set of grandparents and I believe that it makes both sets very happy.  Eleanor is getting used to seeing her grandparents on a weekly basis rather than a monthly basis.  This truly makes my heart happy.

We are settling in up here and trying to get everything in order for baby boy's arrival.  He is doing well.  My last appointment was on August 9 and he weighed 3.5 lbs and changed from head down to transverse (parallel to the ground).  He seems to change back and forth between the two positions making me rather uncomfortable sometimes but what a wonderful feeling it is to feel him move inside of my belly!!  Prayers that he will turn head down and stay that way.  My next appointment with my new OB is next week.  I will let you know how the appointment goes.

Eleanor is super excited about having a baby brother come.  She keeps talking about how she is going to change his diaper and teach him his letter, numbers, and on and on...  It is quite funny to listen to.

Last but not least, Eleanor had a CF appointment at the end of July and she had gained three pounds and grown a few inches.  Her culture came back normal so we are praising the Lord for such a good report.  Keep her in your prayers as she continues to adjust to her new home and surroundings.

Thank you for your prayers,

Tuesday, July 5, 2011

It's been three months!

So after three months of no blogging I thought I would let you know we are still here!  I have not had an abundance of time lately to blog but wanted to update you on several things.

Eleanor is doing good.  She has had a busy summer.  We have gone to birthday parties, the pool, Gulf World, the beach, and spend the night parties.  I think the last is her favorite one!  She starts her round of TOBI tomorrow.  Everyday she talkes about her little baby brother and what she is going to teach him!  What she is going to teach him varies on what mood she is in but all of it is very funny!!

Speaking of her little brother he is due on October 14 and right now I am currently 25 weeks.  His ultrasound for his growth back at 16 weeks showed everything was on track and looking good.  We do have one glitch.  For some reason I only have one artery and one vein in the umbilical cord.  You are supposed to have two arteries.  They say it can cause slow growth but he has always measured above average at every ultrasound.  Please help us pray that this will continue to not be a problem and this little boy in my belly will be big and strong.  We know the Lord has good things for him just like he has for Eleanor.  My next appointment is July 19 and will have another ultrasound.  I will update everyone then.

One more piece of exciting news!  We raised over 51,000.00 at the Destin CF walk this year!  Thank you for all of your support of not only Eleanor but of all of the kids and adults who suffer with this disease.


Thursday, April 7, 2011

Easter crafting with Eleanor

Easter crafts!

Today we went to our favorite craft store, Hobby Lobby, and hit the sales on Easter eggs.  Tonight after supper Eleanor and I did some crafting.  Eleanor told me what she wanted and mommy cut and hot glued!  We have an Easter Cow, Bunny, Moose and Chick.  I know that cows and moose do not really fit the theme but she was sure that was what she wanted to make!  This is such a fun age.  I love being able to craft with her like this.  It adds another thing for us to look forward to!  We even manage to get this in on TOBI nights like tonight.  Like I have said before Eleanor has CF but it doesn't have her.  We will never let CF define who she is or control what we do.  I love that she received some of her mommy's genes and likes to make things.  This is going to be fun!

Other news
Tomorrow (april 8) we will be thirteen weeks!  So excited everything has been going well.  I just seem to have to pace myself because I tire out much faster than normal. Eleanor is cute and continues to talk about what she is going to "teach" the baby when it gets here!  LOL!  It will be a sight to behold.

Thank you for the prayers and continue praying for us it is felt daily!

Coleen, Robert, and Eleanor

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!


Tuesday, February 15, 2011

Pre-admin done!

I have gone thru the pre-administration for Eleanor over the phone.  It was funny talking with the lady and having to tell her about Eleanor's different meds and about her enzymes.  It was a interesting conversation...I always forget when we go a while without having to have one of "those" conversations.  I forget that not everyone knows what CF entails on a daily basis.  Since it is just second nature to me as it is our life.

We have to be at the hospital at 6 am on Monday.  Bright and early...this should be interesting!  Eleanor will be fine until we see the hospital then she will probably start crying.  I already warned the lady that she would not be happy to see them after her last experience getting an IV.  She told me Eleanor would get some happy juice and should be fine.  All I have to say is that I warned her! ;)

We are done with TOBI!!  Finished up yesterday morning, so this morning we got to go for a stroll along 30A and see the water.  I could smell the salt in the air which is a good benefit to her.  She wanted to go play in the waves and sand.  She was told to wait until it warms up.  Although we might try to go on Thursday if it warms up to almost 70! 

Keep her and us in your prayers.  I will try to update the blog on Monday afternoon to tell you how it all went. 


Wednesday, February 9, 2011


Here is our T-shirt design for 2011!!  We FELL IN LOVE with this design because it just embodies many things for us.  Can't you just see Eleanor floating away with a big smile on her face?!? 

Please let me know if you want a shirt.  They are $15.00 each.  They will be printed on white t-shirts.  You can email me at r-cguilford@mchsi.com let me know how many and what size you would like. 
A big shout out to Andy Stein at who is printing the shirts for us.  He has a little girl who has CF as well.  Thank you!!

WE are doing well right now...still on TOBI but going to be off soon.  Received a call today and Eleanor has been pre-registered for her "procedure" on the 21st.  All is going well.

I will soon have a link to my CF page for those of you who would like to make a donation on behalf of Eleanor this year.

Thank you for all of your support!!
Coleen, Robert, and Eleanor

Monday, February 7, 2011

Date has been set...

We have set a date for Eleanor's bronch.  It will be President's day.  She will not be told about it until right before.  I know this seems bad to some of you but she still cries at the thought of visiting the doctor's office.  Now, mind you, she is a big girl and the tears stop after we tell her what they are going to do.  She recites listen to my chest, to my ears, show them my teeth, and then we will be all done!!  Most of the time this is what happens and thankfully we have not had any shots during our last few doctor's visits.

However, this time I cannot tell her that.  She will have to get another IV (if you recall last time they did this she "spilled" all over the nurse).  I have trust and FAITH in God that all will go well, but I simply cannot tell her about it now and have her tear up everytime we talk about it.  She is just so smart and has such a great memory. 

We have to check in at 6:30 am and the outpatient procedure will begin at around 8:00 am.  She will be asleep for this procedure.  Most people with CF call it a "bronch" but medically it is called a bronchoscopy.  Now some of you are going to be tempted to google it to see what it is, that is fine.  Do know that there are all different types of opinions and articles that can be misleading on the internet. 
Basically, they are going to thread a scope either thru her mouth or nose into her lungs to look at them.  They will be able to see how much mucous she has in there, how her actual lungs look and to take a sample of her mucous from her lungs that will be more accurate than the throat cultures she gets every quarter.  ( those are about 70% accurate) It will give us a good reading about how we stand.

Please pray for Eleanor and for her wonderful CF doctor that will be performing the procedure.  It is an outpatient procedure so she will not be staying the night.  We will get to come home afterwards. 

We are still on her TOBI and will end right around Valentine's day.  Bless her, she has been a little trooper.  She got to play with some friends last night and she is worn out today! At least it is in a good way.

More later,

Friday, February 4, 2011

Eleanor's birthday

Click here to view these pictures larger


Happy Birthday to Eleanor!!

Wow my baby turned three!  It is really hard to believe that she is three...really hard.  Last year at this time we were in the hospital for Eleanor's first PICC line and IV meds.  So, um, we were just a LITTLE happy to be planning a party and not be in the hospital.  We did come close to going in this year but thankfully for now we are just on TOBI.

Eleanor's birthday ended up being more of a weekend then a day...we celebrated Friday, Saturday and Sunday.  It was lind of like two birthday's in one for her.  To say she had a blast would be an understatement.  Friday we celebrated with family.  Aunt Becky and Joshua and Camille, cousins, from Auburn came down to celebrate with her.  Nanny and Bubs helped celebrate as well.  We opened family presents (Robert and I decided we probably got too many presents.  Then we decided it didn't matter because last year she was in the hospital)

Saturday Aunt Ashley and Uncle Stuart came down from Troy with her cousins, Brody and Lauren.  Unfortunately, Grami and Pawpaw did not get to come because he was in the hospital having tests done. :( They were missed...please keep them in your prayers.
Her friends came over and we had pizza (requested by the birthday girl) and cake (picked out by the birthday girl).  Then we opened presents. 

Now it was off to Build-a-bear to have a party their.  They all had a blast!!  I think everyone was excited about it and left with a new friend!!

I am in the process of uploading pictures right now.  When I get them up I will post the link. 

We are extremely thankful to all of the people out keep us in their prayers even when we are "well."  We learned that things can and usually do happen quickly with CF.  Keep  her in your prayers as we will have a procedure called bronch soon.

Other things...
 She is learning bible verses and has been quite cute with them.  We are on our third verse and she is reciting them very well.  So proud...we want her to have these written upon her heart at an early age so she can recall them when she gets older with no problem.

Sorry for the long blog...but thanks for reading!

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.