'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 and NEWS!

I have not kept my blog up like I should lately.  Sorry about that!  I am going to do better...

TOBI

We are doing quite well with Eleanor's TOBI but her cough is absolutely horrible!  We were in O'Charley's the other day and she coughed (well one of many times) and the people who had just been placed next to us asked to move.  Like they were going to "catch" what she had.  THE NERVE of some people!  Since we have decided that CF is not going to be our identity I did not get up and tell the man that I was 100% sure that my daughter would not get him sick.  Robert handles these situations better than me...I was steamed for about five minutes and then decided not to let him ruin my meal.  I guess my point is that I understand people are still probably concerned about the H1N1 virus and all but if you have ever heard Eleanor or any CFer cough you know that it does not sound like a normal cough.  :)

Moving on...
Grami and Pawpaw came down visit this week and we went out to eat twice yesterday.  Eleanor asked to go to get cheese dip and tomatoes when they first got here.  (it was almost lunch time)  She loves to eat her cheese dip, chips, a whole cup of tomatoes, and taco meat.  The lady at the restaurant remembered us from last time and personally asked Eleanor what she wanted.  Eleanor told her Cheese dip, tomatoes, and taco meat!  We were eating our meal and the lady came back by and Eleanor decided she would share a tomato with her.  The lady took the tomatoes from Eleanor's little hand and told her thank you.  Then she ate it!  She did this twice.  As you can tell Eleanor did not take after her parents...she does not meet strangers!

Last night we ate out at Carrabba's and at the end of our meal when we were about to leave our waitress came up to the table and told us bye.  Eleanor said, "Bye!"  Then looked at the waitress and said, "I want to give you a hug!"  I wish I had a picture of the waitress' face...it was priceless...she was not quite sure if Eleanor really meant it.  So she asked Eleanor, "Do you want me to come give you a hug?"  Eleanor responded, "Yes!"  So the waitress came around the table and gave Eleanor a big hug.  Eleanor then said, "Thanks!"  The love of the Lord certainly shines through this little 2.5 year old.  There is no other way to explain it!  The power of the hug that she gave that waitress was tremendous.  We left the waitress with the biggest smile she had on her face all night!

IN OTHER NEWS!

In other news, part of the reason I have not been posting so much is because I have been soooo tired lately.  I would just crash when Eleanor would go down for her nap.  Some of you probably already have it figured out. Eleanor is going to be a BIG Sister on April 19, 2011!  We thought we were 8 weeks but after the appointment today we found out that we are actually 6.5 weeks along.  The doctor was please with the way the baby looked on the ultrasound.  We go to see her again in two weeks to make sure we are still progressing along like we should.  We didn't tell everyone until 8 weeks with Eleanor but we decided to go ahead and tell people now. 

Please pray for the baby that the Lord would put his hand on this baby the same way he covered and protected Eleanor while she was in me.  I know I will feel better after the first trimester is over.  We covet your prayers and will share updates as we get them.

Thanks!

Coleen

Oh Eleanor!

TOBI

It seems like we are on TOBI forever this time.  She had the psuedomonas back at the end of May so we were on it for 14 days and then had a week off.  So now that we have about I don't know 10 days or less left it seems like we have been doing this forever (to tell the truth). Her cough is horrible and sounds like a 50 year old smokers cough.  I guess the benefit is that she has the nicest ab muscles I have ever seen on a two year old!

She is so cute and easily complies with her treatments.  She has picked up on the fact that when I list what we are going to do I go from one finger to the next.  So now she does the exact same thing when she is repeating what she thinks we are going to do.  She will say while her left index finger is on her right thumb. We are going to do the abby. (finger now moves to the index finger) do our vest, (finger now moves to the middle finger) and then our TOBI.  She pretty much knows her daily schedule because we are so routine oriented.  Every now and then she forgets one but she does pretty good for a 2 year old. :)


OH Eleanor!

When she does something that is wrong or she thinks she is going to get in trouble for she says, "Oh Ellleannnorrr"  She drags her name out.  Where did she get this from, well if you must know, I say it.  She takes everything in and then repeats.  Like last night, Robert was out of the room and Eleanor seemed to be having troubles with obeying.  I asked her," Are you going to obey or not?" Eleanor replies (with a smile), "Or not!"  My fault for asking her an open question like that.  She is just too smart sometimes.  Don't worry we had a talk about what would happen if she did the "or Not!" and she was happy to obey.

Lessons from God through Eleanor

Can't you just hear God saying, "Oh (insert your name here)! I know I can He probably says it quite often in my case.  He continues to teach me things thru this little spitfire that he has blessed us with and sometimes I am too stubborn to listen and I can just hear him chuckling and saying O Coleen! But what is so comforting it that is He is the God of second chances!  Eleanor likes to watch Jonah by VeggieTales and was asking about Jonah and the whale.  We had a long discussion about second chances and then she said,"so Jonah doesn't have to be scared about it."

That's right God in his mercy and compassion gave Jonah who fled to the opposite end of the known world gave Jonah a second chance to do His will.  Even thought he fled from God's will (see Jonah 1:2-3),  God pursed him...But the Lord hurled a powerful wind over the sea, causing a violent storm to threatened to breack the ship apart ~ Jonah 1:4. 

Funny how this next verse so correlates with me some times.  You would think in all of the wind and horrible weather Jonah would be awake...no verse 5 and 6 recount that Jonah was soundly asleep and that the captain had to go wake him up!!  How many times is God calling us and we are so involved in the me, me, me that we can't hear his voice. 

There are so many more lessons to be learned from this book but I thought I would share just a few that through Eleanor's innocent questions the Lord has helped to answer my prayers.  It is nice to know that we "don't have to be scared about it" either when we mess up.  We can know that God is the God of second chances...

Also Eleanor has started asking where is Jesus at night time because when I put her down to bed I say, "Mommy loves you, Daddy loves you, and Jesus loves you!" her reply is,"Where is Jesus?" I tell her that Jesus is everywhere and He is always here with her.  This is when she repeats in the sweetest voice, "Jesus is everywhere!! He is here!"

Coleen

Build-a-bear photos

Picking out Ellie

Watching Ellie get stuffed

She just kissed and gave Ellie her heart.

Holding Ellie and Ellie's pet dog in the car.  She ate with Ellie as well.

Loving on Ellie

Eleanor is now sound asleep with Ellie.  The first time she has not slept with Elmo in almost a year.

She was cute we could hear her talking to Ellie in the monitor.

Good night everyone.

I hope you have peaceful dreams.

May we all have the joy that Eleanor has.

Coleen

Funny Comments by Eleanor Guilford

At Build-A-Bear where we built a cute little bear named Ellie and found Ellie a dog that says #1 Dad.  She said the following:
You get a heart to put in the bear before it is sewn up.  She kissed it and then gave it to the lady.  After the bear was sewn up she said, "Where did the heart go?"  We told her it has in the bear like Eleanor's heart was in her.  Then she looked at Robert and said, "Inside like Daddy's heart."  The rest of the evening she commented every now and then on where the bear's heart was...one time it was, "See it, do you see it?!  It's in her belly!"

The cashier ask her if her Daddy was #1 (as on the little dog we bought).....Eleanor pointed and said, "My daddy's name is Robert!"

Then we went to eat at O'Charley's and she told the waiter the following things:

I went to the car to get a coloring book she told him, "Your mommy will be right back!"
The next time he came she said, "I want a bagel please!"  She thinks the rolls there are bagels.
When I squirted the ketchup on the plate (it was almost empty) she said, "the ketchup pooped!" She said this really loudly three times before we could get her to stop.  She is potty training now and is very interested in bodily functions.  The waiter brought us some more ketchup and he said I noticed that yours was empty.

As we were leaving he said can I get you anything else?  Eleanor replied, "I want a banana please!!"

I share these little tidbits so you can see the joy we experience with Eleanor everyday.  I will upload pictures of our visit hopefully later tonight.

Coleen and Robert

We back and we have updates!

Hi everyone,

I know it has been a while since my last post but we have been crazy busy lately.

We went to both Grandma's on Mother's day...Eleanor had lots of FUN!
Then the next weekend a jewelry show (jewelry by my sister!) at Troy Bank and Trust in Troy, AL.  We raised over $500.00 for CF in 4 hours...so excited.  Thank you to everyone who gave!!
On Saturday off to Birmingham to see Jennifer on Senior Recognition Sunday...can't beleive she is going to graduate this Thursday!!

Life was hectic but fun and then on Sunday Eleanor got sick. :(   She emptied her stomach contents at my mom's house after she had gone to sleep.  She was so cute though...all she wanted to do was go back to sleep.  Her episodes woke her up three times and all three times she went back to sleep after a pj change and a bed sheet change.  She gave Grami a workout!

On Monday we made it home and she seemed to recover and we even went to the beach on Tuesday with Daddy.  She had such a blast!! 

Wednesday, well, it was a really bad day all around.  She acted horribly and wednesday are the days that it is just the two of us all day.  Needless to say, when bedtime came I was past ready. 

Thursday she woke up with a low grade fever so off to our peds dr it was.  She had a sputum culture done after much angst and we didn't really know what was wrong.

This weekend she did pretty good...she had no stamina on Thursday or Friday but when she saw Nanny and Bubs she acted a lot better.

Today I get a call from the doc's office and we have cultured PSUEDOMONAS AGAIN!!!  So frustrating does not even begin to express my feelings.  We were in the hospital in January for it and it was supposed to stay away!  I guess nobody told the PA that.  So starting tomorrow we are on TOBI for at least 28 days it may be a month and a half.  We are also going to be on the oral antiboitic Cipro for 14 days.  TOBI means albuterol and this means five breathing treatments a day with the Cipro twice a day and vest twice a day.  UGH!! 

The GOOD news is that we have some way to treat the bacteria...the bad news is that she shouldn't have it!  I know you all pray for her but we will need lots of prayer over this next month as she is not always happy sitting still to do her treatments now and she is quite ill-tempered because of the PA.

I do have a funny story...
We get home on Monday and Eleanor and I have the following conversation...remember she is not yet 2.5 years old yet.


Eleanor: I want to go bye bye!
Me: Where do you want to go?
Eleanor:  I want to go to the grocery store
Me: Why do you want to go to the grocery store?
Eleanor: I want a cookie
Me: You want a cookie, what kind of cookie?
Eleanor: a sprinkle cookie to eat!  Yum!

Also after struggling with Eleanor for A WHILE at the doctor's office to let them look at her throat (which we never accomplished) the nurse says okay Eleanor I'm done, can I have a hug?  Eleanor looks at her and then gives her a big squeeze and while she is hugging her she says ooooweeee!

Then we go out in the hallway and she walks up to her doc and gives her a hug.  She is so sweet!  I think she was saying nice to know you but I am leaving now!

One more!  This Saturday we had gone outside to draw with chalk and we came inside first then Robert came in and when he came in she looked at him and said," Daddy what are you doing?" Like it was her business what he was fixing to do...

Anyways, sorry for the long post but I wanted to update you since it had been a while.

Coleen

Eleanor, drawing, and CF Friends

While at the beach the other day, Eleanor discovered that she can draw in the sand.  Today we thought about taking her to the beach...that was before the weather turned out to be so bad.  We wanted to get down to the beach just in case this oil does come our way.  We are not only concerned about the economic impact but the health impact for our daughter if it does come to our shores in south Walton.  Going to the water was not meant to be though. 

I bought Eleanor some sidewalk chalk at Michael's on Friday and stocked up on bubble solution as Grami bought her a bubble machine to have so I do not have to constantly blow bubbles when she is out front swinging.  Out front we went, bubble machine going and chalk in hand.  Eleanor had the biggest time.  Our neighbor's kids came over to play in the bubbles with her.  She turned our gray porch into a white and yellow piece of art.  I took pictures but I have to upload them.  I will get them up to let you see her.  She was also covered in yellow and white chalk it was a funny sight!

CF and CF Friends

Eleanor is almost done with her TOBI treatment for this 28 day cycle.  YEAH!  Her cough is back with a vengeance.  We are dealing with it and are hoping it will subside shortly.  Pray for her cough and that it is only the TOBI and nothing else.  I would also like to add three names to your list to pray.  Taylor (16), Megan (11), and Lacy (18 months).  They all have CF and are dealing with different issues right now.  I know that their families would appreciate all the prayer they can get in lifting up their children.  It seems like the people with CF in my area have been hit pretty hard of late.  So any extra prayers you can send up are appreciated.  This disease makes your family grow.  Once you met a fellow CF Mom you learn about their children then you want the best for them as well.  I hope that makes sense!

Will update with pictures soon.

I do have a quick funny story...

Aunt Ashley got Eleanor a 2.5 tall Elmo doll.  Today Eleanor sat him up on Robert and took her food from her kitchen and "fed" Elmo.  She would tell him to finish chewing or all done with that.  Here Elmo time to have your tomato.  She did this for about an hour.  Robert and I got some very good laughs.

Coleen

Free Fun CF Treatment

Today was a first for us.  We went to the beach TWICE!  I took Eleanor to walk around 30A and the lake where the beach house is located.  It is a 1.5 mile loop during which Eleanor chit chats about the birds and flowers and anything she sees or think she sees like pigs!  What an imagination...anyways, we are done with our walk today and I decide let us go see if she will like the sand and beach because last year she didn't really get into the sand. 

I carry her down to the water and take off her shoes.  The first time her feet get wet she looks like hmmm...so I tell her she is such a big girl that the water feels good...well she starts laughing.  With one hand firmly gripping my index finger we walk up the beach so the water can "get" Eleanor's toes.  She tries to sit down in it but we are not in proper attire.  So we leave...not without a fit, but with a promise to come back.

At 5:30 pm today we go back to the beach dressed in our new Elmo Tankini.  First funny thing is she is upset that her belly is not covered by the bathing suit but gets over it quickly.  She also doesn't appreciate the sunscreen spray but decides it to is okay especially when mommy does it as well.  On the way to the beach I hear, "Going to the Water!  Does it feel good to your feet!?! Want to Splash!"  We get there and, as it always is in the evening it is breezy as Eleanor calls it.  We get to the water and Eleanor is chattering because she is cold but she doesn't want to leave because she wants the water to get her toes.  We go from a death grip on my finger and splashing water with one hand to sitting on the shore a few feet from where the waves break splash and throwing sand.  Every time a wave would get her she would say want more...and of course another wave would come and she would splash and say it's bathtime!!  She had the best time and did not want to leave but we did not have any fits this time.  We also took about half the sand with us in her diaper and swimsuit.  It was home to take a bath right away.  She also went to sleep faster tonight...she was a tired little girl.

I guess I should address the title of my blog this time.  A study done on surfers in Australia showed that their lung functions were higher than those CFers who didn't surf.  So they now have vials of Hypertonic Saline (basically sterile salt water) for people to inhale to help with their CF.  Here is the link if you would like to read a story about it: http://research.unc.edu/endeavors/spr2006/salt_cf.php  The salt in the water helps the disconnect that the gene causes and really helps people with CF cough the junk that is in their lungs out and up and lowers infections.  So everytime we go to the beach it is a free fun treatment that Eleanor doesn't even know she is getting. 

The second time we went when she was sitting in the sea spray she coughed a lot and one time she coughed twice really loud and hard she looked at me and said,"OH excuse me!"  It was precious.  She was a precious sight.

Thank you Lord for your beautiful creation that we miss so much and do not enjoy because "we have to get things done."  Thank you for Eleanor and her precious disposition.  She makes me proud to be a mommy and proud that she can enjoy what You have given us and is in our back yard.

Coleen

Funny Story

Eleanor has been quite the card today.   We were eating supper and I needed to wash the dishes (because our dishwasher is broken) and so I put on those gloves to protect my poor hands so they won't dry out and Eleanor see them and starts whining.  She says, "Mommy going to clean clean."  At first Robert and I thought that she was talking about me cleaning the dishes but then she says,"Clean, Clean and turn turn."  So now we realize that she is remembering me doing her IV meds over two months ago!  She has too good of a memory.  So we assured her that mommy was just cleaning the dishes and that Eleanor did not have to have any medicine.

She has also started saying some funny things like she is playing with the Wonder Pets sticker and picks up the Lenny sticker and says, "Is this Lenny...it is Lenny, I guess."  Who knows where the I guess comes from. Or she will say, "Want to watch the Wonder pets...okay you can watch the Wonder Pets."  She asks the questions and then answers them herself.  It is funny listening to her carry on a conversation with herself. 

We were watching a Little Einsteins episode tonight that has the music from the Flight of the Bumblebee on it.  While the music plays they sing, Flubadubaduba, flubadubadubaduba and shake their hands and head and then the whole body.  So Robert and I are watching her and she is shaking singing the song.  It was hilarious!  Probably funnier in person than on here but I thought I would share.

Hope everyone has had a great weekend.
Coleen

This is what Eleanor looks like after smelling the flowers!

I thought I would share what my daughter looked like after she insisted on smelling the flowers in our yard!  As I was taking the picture she was saying I see daddy!  I guess she thought he was in the camera.

Coleen

CF fundraising and funny things

We are kicking our fundraising into high gear.  Our team is holding a drawing and there are many prizes but the big ones are six different vacations to one of the Resorts at Oaseas Resorts in Panama City Beach and South Walton.  I will have a flyer to post soon.  We are printing the tickets now.  Each ticket is $5.00 and if you would like to buy one email me r-cguilford@mchsi.com.  All proceeds go directly to the CF Foundation and are tax deductible.

Also, I have some funny stories about Eleanor...

We have started our TOBI routine again and she is being such a big girl she is actually sitting down and letting me strap the mask to her head and watching a show.  She is just precious with it!!

The other night we were eating and Robert accidentally knocked a small vase over spilling some water.  As soon as he it did it we heard, "OH Man!"  So now you know what we say at our house when we make mistakes.  Robert and I couldn't help but laugh. 

She loves to eat fruit and I was feeding her strawberries, pineapple, and kiwi.  She kept asking for more of eat but when she got to the Kiwi she said, "I want more gooey."  Robert was chuckling because that is how he would describe it.  "Gooey is good," was the next thing we heard.  All the things they say.

She is continuing to do well with a very little cough that is due to the medicine.  She is coming off her RSV shots for the year and is getting a little stuffy so I spray her nose with that saline mist bottle to help her.  You would think you were giving her candy or a cookie because when I say time to spray your nose she gets all excited and runs to her pink chair.  Then, she just sits there while I spray her nose.  Twice in each nostril and then she usually asks me to do it again.  How funny!

Pray that she continues on her TOBI cycle with only a little cough and hoarse voice.    Thanks for all the support and prayers we feel them everyday.  I especially felt them yesterday!

Coleen

Thursday Update

After the doctor's visit I took her and my husband's advice and stopped the milk battle.  I no longer try to push a cup of milk in her in the mornings.  It has definately made our mornings much easier.  Now she gets a milkshake everyday or half a large one I should say.  Robert and I make her a shake and here are the ingredients:
1/2 c. heavy cream
1/2 c. whole milk
1/2 packet of a CIB chocolate
1 c or more of ice cream
a good handful of M&M's or what ever cookies we have

Then we blend.  I have no idea how many calories but I do know that she loves it.  She called it her ice cream shake.


Eating like a Big GIURL!  (that is how is sounds when Eleanor says it)

Nanny and Bubs were down for her visit and they brought me some toddler plates.  I cut her hot dog up into small pieces and put it in front of her with a fork.  I did not know what to expect because up to this point I had been feeding her.  It is not that she couldn't do it...it is because I am a control freak.  There I said it!  I don't like huge messes, etc.  Well, she ate like a big girl.  She stuck the fork in the hot dog pieces and ate them.  After she was done with that we had crackers and dip.  (cream cheese of course!)  She ate that all by herself as well.  So we had success and I finally got to eat at the same time without my food getting cold.  Not that I minded because I would rather starve then Eleanor go hungry, but it was a luxury that I have not been used to since January 28, 2008. 

At the end of the meal I told her to clap her hands for herself because she ate like a big girl.  I did a repeat at supper.  She had chicken nuggets cut into small pieces and I put her tomato dip (ketchup) on the plate.  She speared the chicken with her fork and stuck it in her dip and then into the mouth.  Robert took some pix but I have to upload them.  It was sooo cute.  Robert and I both enjoyed a supper together without force feeding Eleanor.  So we have made another step of Eleanor growing up.  She now thinks that she is supposed to feed herself all the time.  So another step in independence for her.

Her cough seems to slowly be getting better.  She has been a little more relaxed these last few days.  Not as energetic but she doesn't have a fever so I am just watching her.  Oh, when to be a mommy and when to be a nurse. 

We are almost done with the TOBI...YEAH!!  We finish on Sunday and are off until April 7th or 8th.  We go for our follow-up visit with Dr. Van Hook on March 25 so we will have something to report after that.

Funny things....

We were getting ready to go to the beach house and I was finishing up getting her cold stuff together and she apparently thought I had lost something again because she looked at me and said, "Mommy where's your purse?"  I could only laugh and tell her it was not my purse I had lost. 

She also loves her Daddy's favorite breakfast.  Bacon and dinner rolls.  Robert would put a piece of bacon in a little bit of a roll and hand it to her.  She would say Yummy more bread. 

Last night Robert picked her up for her bath and she looked at me and said, "Mommy come on." 

We were at the grocery store today and she was eating her cookie.  Gotta love Publix they give kids free cookies.  It is a lifesaver for me.  I was putting things in the cart and she was giving me a running commentary on what it was.  Oh Crackers!  There's the celery!  Oh look at the bamanas!  She would occasionally turn around and try to pick something out of the cart and put in her lap.  I would tell her no touch eleanor.  Well after about three times in a row I said, "What does mommy say?"  She looked at me and said," NO Touch!"  I held back my smile.  She is too funny.  She knows what is right but just can't quite help herself sometimes.

All for now,
Coleen

9 times, 9 times, it is 9 times

Hey everyone!

Well the Guilford family has been a busy one.  I told you we are up to nine treatments a day.  This is how our day goes.  Up between 8-830am then vest and albuterol (or "abby") as Eleanor likes to call it.  Then we eat breakfast.  This has been a struggle.  She used to drink a cup of whole milk with Carnation Instant Breakfast and Heavy Cream but now she is completely refusing it.  I can get her to drink maybe a 1/4 cup of chocolate milk but that is it.  This is very stressful for me as I do not like her not having what she needs and the battles have caused much stress. :(  After breakfast I let her run around then we do the TOBI it last about 20 minutes.  Next is our first saline nose rinse.

Then we have a break for a while.  She gets to play and then we eat lunch and nap time.  After nap time she gets to do her vest and "abby" again.  Then a snack if she gets up in time.  Now she gets to play while I figure out what is for supper.  I have not done well cooking of late.  There seems to be no time between her treatments and my work for the church next thing I know it is 445 and I have nothing ready to fix. 

Robert has been great helping with supper...he calls and says he is bringing something home.  This past week the grandparents were all down so it helped me have a break.  Anyway,  I was rambling, after supper we do her "abby" around 730 then bath and pulmozyme, vest, and TOBI.  Final treatment of the day is the saline nose rinse.  At this point it is usually 9 and we have a sleepy girl.  Funny thing is we put her in bed and she will sometimes talk until 10-1030. 

I guess that is why I have not found time to update you.  But I wanted to get on this morning to let you know I have not forgotten about the blog. Robert and I are tag teaming church...I went last week and he went today as he also teaches Sunday School.

Funny things...

I have a few more you would not say to "non-CF" child....

Keep running it will make you cough and feel better. 
Finish up your ice cream shake so you can have some strawberries.
That was a good cough.
Eat two more bites of your cookies and you can get down.
More cheese dip then you can have some tomatoes (or "mamatoes" as she calls them)

Eleanor sayings...
Ready to do the "abby"...
Time for the TOBI...
Want to spray the nose (then she goes and sits in her pink chair and waits for her saline rinse)
Daddy I teted...to which Robert responds Thanks for sharing eleanor.

She is as resilient as ever and I am glad as there are days when I am certainly ready to throw in the towel.

We have a doctor's appt on Monday just a normal well check with her ped doctor.  So I will let you know how that goes.

Pray for her cough, our food battles and she has a smooth appointment tomorrow...

His Grace is Sufficient at all times for me,
Thank you Lord,
Coleen

Here's the update on our life...

I know it has been a few days...here's the scoop.  Eleanor is coughing more and more each day.  She coughed a lot this morning with Robert.  I called Pensacola and we are to up her Albuterol treatments to three times a day with her vest up to three times as well.  I do not know if something is going on or not but her BM's are throwing her nap schedule off.  Robert put her down at 1:45 today and she fell asleep at 400pm.  This is the same thing she did yesterday.  We are both concerned that her coughing may have something to do with it.  She doesn't cough when she sleep so I don't know.
Yesterday...she threw up in the nursery...not really sure why but Mrs. Polly had to clean her up and bless her she didn't even call us to come get her.  We really LOVE Mrs. Polly and the love she shows Eleanor.  The unsettling part is that the throw up was mostly mucus.  She has not done this ever.  The good thing is she needs to get the mucus out but this just all seems to be happening so sudden.  Since we just got out of the hospital with the IV treatment we are both concerned that something else is going on. 

On the lighter side...
Things you never thought you would say to your kid....No, you can't just eat the icing you have to eat the cookie too.  And: No, you have to take a bigger bite of your cookie.  Never dreamt that I would encourage her to eat her junk food.  Also, we got her RSV shot today and she weighed 27 pounds.  Yeah!! This is more that is about two more pounds than we weighed a month ago. 

Pray that her cough is just the antiboitics loosening up the junk that is in there and nothing else is happening with her.  Pray that we can get her BM's back on schedule so she can take a nap at a decent nap hour.

Coleen