Feb 2011 Beach

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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. 

Coleen

T-shirts!!

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

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,
Coleen

Eleanor's birthday

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Birthday!!!!

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!
Coleen

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