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. 

BIrthday
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

New Year News

Hey,

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.

WAR EAGLE!!
Coleen

Christmas cookie pictures

www.guilfordfamilyphotos.shutterfly.com  I have uploaded her Christmas cookie pictures.  She was quite funny doing it.

Coleen

'Tis the Season of CHRISTmas...

I have so many things to update you on...  WARNING IT IS GOING TO BE LONG!

First...we lost another member of my family the day after Thanksgiving.  My dad's mother passed away literally almost a month to the day of my mom's mother.  What a tremedous season of loss this has been in our family.  The encouraging news this that one day we will get to see them again one day in Heaven and I look forward to that day.  This comforts me more than any of you could know.

Second....
Eleanor went to the Georgia vs Auburn game and had a blast.  This would be the first time in her 2.75 years that I skipped her nap ( I am a schedule person!!).  The game started at 2:30 as most of you know... we were not sure how this would go...

She could not have done better she was a doll during the ENTIRE game.  She colored and read books with all of our help. (Nanny, Aunt Debbie, Jacob, Jessica and Uncle Scott)  We thought we might have to take her to see Bubs and the Ipad at half but she did just great.  She was good on the way home as well.  Didn't get to bed until 9:45 and had been awake for well over twelve hours.  It was a blessing!!

Thanksgiving has come and gone...I want to tell you that I am thankful for my entire family and for my support group that I have.  The year would have been really bad without them.  Thank you all who pray for Eleanor on a daily basis.  Please keep those prayers coming we feel them.

Since it is the Christmas season Robert and I have read the story of Jesus' birth to Eleanor so we can start from the beginining of her life to know that Christmas is about Jesus.  She has been quite cute.  She is constantly wanting to know when she gets to see him?  Can I go to the birthday party for Jesus?  (Yes we will be having a birthday cake for Jesus on Christmas.)  The greatest one is: Are we following God?  She is truly remarkable and reminds me daily of our walk with Him.

She is, however, very excited about her visit from Santa.  At Thanksgiving she was thankful for Santa, Jesus and her family.

Last night we make cookies.  She decorated them and also helped me cut them out with the cookies cutters.  I will upload those pictures and link them so you can see her at work.

Finally, we went to the doctor mid-November and she weighed 29 lbs. and was a little over 35 inches tall.  She gained a pound but grew so the doctor was pleased.  The greatest news of all was that she doesn't have Psuedomonas any more!!  No more TOBI for now... we are so very thankful to get a break.  Hopefully it will stay away for a while until then we are going to enjoy our break.

Remember why we celebrate CHRISTmas... it is called CHRISTmas for a reason.
Coleen  OH and by the way WAR EAGLE!!!

Updates...

October Updates

Where to start...it has been a hard month.  We lost two more family members in October.   Robert's Aunt and my grandmother passed this month.  This world lost two good Christian ladies.  However, they are no longer suffering and are with Jesus.  We rejoice for them!

Eleanor was on TOBI this month and it was a hard TOBI cycle this time.  It started off rough with a cough after only a day and a half and the cough is still with us.  It also seems to have sapped some of her energy.  If you didn't know her you would probably think I was crazy but she is more run down after this cycle.  I am happy that it is doing its job but am ready for a cure so we do not have to do this....

We went to the pumpkin patch in Niceville at the UMC.  Eleanor had a blast!

She was smiling really good in this picture.  She also went to the Peanut Festival with her Daddy, Nanny, Bubs, and cousins.  I have uploaded these pictures on my share site. http://guilfordfamilyphotos.shutterfly.com/

We also added a hamster named Cassie to our family.  She is a black bear hamster and Eleanor loves "to take care of her."  She does not get to play with her a lot right now as Cassie is a baby hamster but as she grows it is going to be an interesting journey.

CF NEWS
The Clinical trial for the combo of the two drugs to cure the DF 508 gene has started.  If successful this could be it!!  To say we are excited is a HUGE understatement!  :)  Please pray that these trials are successful and that the FDA will approve the drug after the trial is complete.  I will definately be keeping everyone updated on this trial.

We go to our CF clinic visit on Nov 16th.  We are praying for a smooth visit as they are always stressful on Eleanor...

Eleanor Moments

There have been soooo many I can't list them all but here are a few highlights.

While I was gone to my grandmother's funeral in Ohio, Nanny and Bubs came down to keep Eleanor while Robert went to work.  Robert called his mom to hear hysterical laughter on the other end.  Bubs was on his hands and knees trying to open the magnetic door to our entertainment center so he could turn on the sound system.  After the laughter stopped he heard Eleanor say to Bubs, "Let me help you Bubs!"  Robert proceeded to tell his mother how to get it open...only to hear mid-conversation..."See that's what I am talking about!"  Eleanor had opened the door for her Bubs.  It was quite funny. :)

She has this habit of just laughing not fake laughing but infectious, belly laughing...
We were on the way home from the ice cream store (we went since she had a good day potty training) and Robert and I were talking in the front seat.  All of the sudden we heard laughter from the back seat.  We still have no idea what caused it...maybe it was just between her and God.  It only took about fifteen seconds before we were all laughing so hard we were all crying...those are the moments that no money can buy!

She also loves to sing, she will break out singing all the time...her new favorite is No More Monkeys Jumping on the bed.  But we were singing Jesus Love Me and she said, "I love Jesus!"  Then she wanted to see Him.  So we talked about Jesus and how he can come into our hearts...you could see those wheels turning.  Later that day she looked at me out of the blue and said, " Jesus is in your heart (pointing to my heart) and in my heart (pointing to her heart)." 

Not sure it gets any better than that!

Pray for my family and my extended family in our season of loss.  Pray for Eleanor that she continues to grow not only physically but spiritually.

Thanks,
Coleen

Pumpkin patch and TOBI

Today we went to a pumpkin patch with our some of our friends.  Eleanor had a blast!  I will upload some pictures so you can see the joy on her face.  We have been busy lately going to football games, and other events so I have not had much time to blog. 

We have been on our TOBI and it seems to be effecting her more this time than last time.  She wakes up with a raspy voice in the morning and seems to be coughing more.  It is a good and bad thing for me.  This is what the TOBI is supposed to be doing but in the back my mind I keep thinking did she have something?  Did I miss it? 

She is so active now and we are finally able to get back outside so we have definately been exposed to more germs but we cannot live in a bubble.  I cannot keep her locked inside either.  To see the joy she experiences when we go to the park and play with her friends or just go outside to swing.  Words cannot describe it.  So, I am telling myself if she did have something the TOBI is just doing its job and getting rid of it.

I will try to post the pictures of the pumpkin patch tomorrow.

Coleen

Back again...

It has been a whole month since I posted.  Well, we have been busy during our off TOBI month.  We went to the Park, played outside on the porch, and went to visit Nanny and Bubs.  We have so much to be thankful for and I cannot express the gratitude I feel for everyone's prayers over the last month.  I promise you the prayers were felt and I still feel them.  Thank you to the prayer warriors!!

It is late so I will try to get on and post more about what is happening in our life but I wanted to share a few pictures...

 Giggling with Bubs in Hartford

Sitting with her "friends" in Hartford 

                                                        Playing the IPad with Bubs.

                                                Wearing Daddy's hat while Tail gating.

                                             What a precious picture with Cousin Jessica!

First Waaaar Eagle! Hey! She had a blast!

We have started TOBI again. Her cough is back after a day and a half.  I know it is working but I do not like the cough!

More later,

Coleen