Eleanor update

We are offically on Cipro!  Yea and boo!  So happy we can get it in her body and get the Staph infection out.  Boo that her tummy has already started hurting.  We are doing probiotics to help her but just pray that they work for her throughout this 21 day regimen we are on.

Eleanor didn't take a nap today or yesterday and it seems to have caught up with her.  I am pretty sure that those of you who know me know that I really like her to take a nap when she is not having trouble with anything.  She just acts better because she is more rested.  I KNOW, I know she is four but her body is different than most four year olds.  Now that she is fighting this infection in her lungs she seems to be more tired.  Ever since she started the Cipro her cough seems to have gotten worse and she just seems to be a little out of sorts.  All of that to say that two days of no napping means a tired, ill little girl. 

Since she didn't take her nap today I announced that she would go to bed early.  As any of you CF Mama's know out there that can be quite an undertaking!  She normally goes to bed around 9 - 930.  Tonight she was in bed at 815.   I was quite sure we would have some moments where she would come out of her room with the normal excuses as to why she could not go to sleep.  However, she went straight to sleep.  Not ONE peep from her!  This tells me how tired she was.  She rarely does this and tells me just how much of a toll her CF is taking on her right now.

Please pray for her body to rest and repair itself while she is asleep and that she will take her naps so she can feel normal.  I pray that she wakes up tomorrow morning and this good nights rest helps her to feel rested and great in the morning.

Much Love,
Coleen

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

Finally Friday

Hey it's Friday!!  Eleanor and I started it off on a good note, actually it was on two good notes. :)  We went to the beach this morning and had a blast.  She is quite the fearless girl when we go down to the beach.  Spent an hour running around in the surf and on the sand.  Getting it everywhere...it's cute to see her run around with sand all over her knowing that in a few years it is probably going to bother her...then again maybe it won't who knows??

The other good news we received this morning is that her sputnum culture came back normal.  YEAH!!!  We are so excited that it came back normal and for now the psuedomonas is gone.  We start our TOBI treatments again this evening for another 28 days.  Pray for Eleanor as our compressor seems to have slowed down a bit and we are trying to "fix it."

In a bit of non-cf news my Grandmother in Ohio seems to be having up and down days.  She is 90 years young and her faculties have not left her.  She is just in need of some up-llifting prayers.  She fell about a week ago and she also has a kidney infection.  I think there is something else that is not quite right.  If any of you prayer warriors out there could uplift Mary Shank it would be much appreciated.  How do you tell her you love her and that she is thought about when she can't really talk on the phone and isn't getting on the internet?  I guess by good old snail mail. 

Thanks for stopping by...I will update our TOBI progress again soon.

Coleen