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...

Saturday, July 31, 2010

Summer video

video

Results

The results of her culture are in: she only has normal flora growing!!! Yeah, this means no psuedomonas!  We are so excited!

We have been busy once again while we are off of the TOBI.  We went up to help Nanny since she has not been feeling so well and then back home where we went to build-a-bear to get another outfit for Ellie courtesy of Nanny.  I still have to take a picture of Ellie's fancy new dress but I will and post it.  She is very fancy!

I some pictures and videos I will upload and share soon.

Coleen

Monday, July 26, 2010

Clinic Visit

We just arrived back home from our clinic visit.  In most ways it was a great visit, but Eleanor does not like going to her appointments. 

On the way over she knew that something was not quite right.  She kept asking Robert and I when we were going to go home.  When we pulled into the parking lot at Sacred Heart and we told her that we were going to see Dr. VanHook she lost it.  She started crying and saying she wanted to go home.  Bless her, all she remembers is getting her picc line out and the pain it caused.

After we assured her there would be no "ouchies" and that Ellie would have her chest listened to show Eleanor how easy it was she calmed down and did okay...until we got to the receptionist desk then she started crying again.  We did some talking and distracting the tears subsided. 

The nurse came out to get us and she did fine through the listening for her heartbeat, her O2 stats (99), her height (34.8 inches) and her weight (28.7 lbs).  However, taking her temperature in her ear did not go well.  We got through it and went to our room.

Dr. VanHook came in and she listened to Ellie and pronounced her healthy and Eleanor was then ready to go home!  She was not ready to take her turn with the stethoscope.  We just talked with Dr. VanHook about her appetite, BM's, new enzyme's, and the new psuedomonas drug.  Eleanor is in the 75th percentile on the BMI (body mass index) chart and that is awesome for a child with CF! 

Eleanor then decided to talk with Dr. VanHook about her animals and a summary of what we have done this summer.  She did finally let us listen to her chest.  Dr. VanHook is so very patient with us.  Daddy held the stethoscope to her chest and back and we were done.  Her chest sounds great!

Then the BAD part comes.  She knows the man who takes her culture's voice.  She heard him in the hallway and started crying. Poor thing.  Robert and I had to hold her down and we finally got her culture....I do NOT like those!

After we were done Glen, the man who does her cultures, asked for a hug and she went and gave him one.  It was all okay now that it was over.  She even gave him a high-five.

We had a good visit.  We are now just waiting on the culture results.

We went to the Gulfarium the other day, I will post about it soon.  Eleanor had a blast!

Coleen

Monday, July 19, 2010

Bad day

Have you ever had one of those days that you just wanted to start over again....well, today would be that day...

Here are some things I am thankful for:

1. a loving husband who drives back home when I do stupid things to be our hero!
2. a portable DVD player that distracts Eleanor from the situation at hand.
3. The occasional breeze the Lord sent while waiting for the afore mentioned husband.. :)
4. Cell phones
5. texting
6. Eleanor's perfect disposition
7. being able to act silly when you really are not feeling like it
8. a car that runs
9. the joy on Eleanor's face and the fact that throughout the entire event she knew nothing was wrong
10. Word World

On a better note...

We are done with TOBI!  We finished it on Friday morning so we will have a little over 20 days to relax before we start it again.

Hope this finds everyone having a blessed day,
Coleen

Friday, July 9, 2010

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

Sunday, July 4, 2010

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
Just visited build a bear. She loved it! Her bear's name is ellie.

Thursday, July 1, 2010

Rainy Days equal Sunny Times at the Guilfords

Rainy Days

It seems to always be raining this week.  It sometimes makes you wonder if that is how God is feeling right now?  Sad that even though our area, our nation, is in the mist of a crisis people still refuse to believe in Him. 

CRISIS!! UNEMPLOYMENT!  OIL SPILL!!  Sorry for the yelling but it seems that this is all we hear anymore...which is why I cannot and will not watch endless hours of FOX or any other shows out there.  Yes, I do keep up with current events thru the internet and at least while reading I don't have to listen to people yelling at each other.  It seems like they think that by yelling it will help enforce their message.  It, unfortunately, doesn't.  I know how we got ourselves into this mess.  By not standing up for what we believe and not spending daily time in God's word and prayer.  HELLO!!  Don't you think HE is trying to get your attention?!?  Ugh!  Oops, what did I say about yelling.  Sorry! :)  So in these times when you are feeling like no one cares remember these:

"Before they call I will answer, while they are still speaking I will hear." Isaiah 65:24

"When I am afraid I will trust in Thee" - Ps 56:3

= Sunny Times


Well, sorry for the rant. I know that the only way to God is thru Jesus Christ His Son. I just pray that people will see the JOY He gives our family and understand what it means to truly have peace in the midst of a crisis. It really has been raining here this week. Even though the rains came the sunshine in our lives has not gone. We have the Anders down this week and it has been a huge blessing to our family. Eleanor loves her cousins, Aunts and Uncles! She loves to play with her cousins. Joshua helped Eleanor to fly...


 
She was putting on the charm...see that grin!
 

She is the sunshine!  Today since is has been pouring outside I was trying to think of something fun to do inside.  We found a tent that Aunt Lulu and Aunt Becky gave her for Christmas and put it up!
Here is my little butterfly with her bracelets on in her "tower" as she calls it...


 
We ate lunch in the tent and she even wanted to go in the tent for her nap.  She is peacefully asleep in her toddler bed right now.  I know we will be spending more time in her "tower" when she wakes up.
This little butterfly is why I cannot let the worldy things get me down.  She is a gift from God to our family and shows me more about Him every day.
 
CF News
 
She is in the midst of her 28 day cycle.  We are on day 14, I believe, so our TOBI cough that comes it back and it sounds absolutely horrible.  I know that it means the TOBI is getting the junk loose but I know her tummy muscles have to be tired.  Through it all she smiles and plays like nothing is wrong.  This is her life...CF will not rule it.
 
Jesus looked at them and said, “With man this is impossible, but with God all things are possible.” - Matt. 19:26


Next CF Appointment is July 26th.


Coleen