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...

Thursday, December 9, 2010

Christmas cookie pictures

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

Coleen

Wednesday, December 8, 2010

'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!!!

Friday, November 5, 2010

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

Wednesday, October 20, 2010

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

Friday, October 8, 2010

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


Friday, September 17, 2010

Bad News...

It has been a week since we heard the bad news.  We went in last Thursday for our 8 week appointment and went in for our ultrasound and there was no baby there.  The little circle and beating heart we saw at 6.5 weeks had gone.  We have the best doctor she gave us all the details and explained the process.  I went in last Friday for my DNC.  I am almost physically recovered from the procedure and am very thankful.

I know that God made my body and my body knew that there was something wrong with my baby.  It is better to happen now than in a few months.  I did not get the chance to know this baby but I know that there is a reason and am at peace.  The last week has been a little emotional but Robert and I are doing okay.  We have definitely felt the prayers that are being said on our behalf and truly appreciate them.  I have felt the Lord's mercy and grace surround me and cannot put into words how much I am thankful for a great family, church family, and friends.  I cannot put into words everything that I have been through but I can tell you that this struggle we have gone through has continued to bring me closer to the Lord. 

Eleanor is doing well...we finished her TOBI last Thursday.  What a joy she has been to see and spend time with playing, reading, and just having fun.

Thank you for the prayers we really appreciate it.

Coleen, Robert and Eleanor

Thursday, August 26, 2010

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

Monday, August 16, 2010

TOBI

We started TOBI last Friday and she has done well.  Our cough is already here and it sounds bad.  The summer cold has really never gone away.  Her nose did stop running but now it is really stuffy.  She is having a hard time adjusting to her new schedule.  She seems to be really tired while doing her night treatments but then when she gets in bed she talks for almost an hour.  Then she wakes up before she should the next morning and is ill. 

She is going through a two year old stage right now.  She is happy and then all of the sudden she is not happy with the way things are going and we have a little breakdown.   Ah, the strongwill of my two year old...I am thankful for it as it keeps her going with her fight against CF but boy sometimes it makes for a difficult day.  We have to take the good with the bad. 

Prayer for my grandmother is still appreciated she is back at the nursing home but she is still having issues.  Prayer for Eleanor during her "stage" is certainly appreciated. 

Funny Story

Eleanor went to church this week and was asking all the way if she was going to see Ms. Amber.  I told her yes...she would ask about every five minutes.  When we got to church she was ready to get to her classroom.  This is a big deal because it usually causes anxiety when we tell her she is going to church because she does not want to be away from mommy and daddy.  We opened the door and she ran right to Ms. Amber and gave her a big hug and started talking a blue streak.  This is how we left her when we went into church and she was still talking when we got back.  Such a great thing now that she does not cry when we go to church!

Coleen

Friday, August 6, 2010

Summer Cold

We have a summer cold.

Eleanor started a cold Tuesday and it has gotten worse.  We went to the doctor.  Our normal doc was not there so we saw the other doctor in the practice.  I was a little worried because as you know Eleanor doesn't like doctor's visits.  We went and she let them listen to her chest and stood on the scale without too much trouble.  Then she clung to me while we were waiting for the doctor.  He came in and she pretended to be asleep.  This actually worked in our favor.  The doctor listened to her lungs, tummy, looked in her ears (there was no screaming...this is not normal!). 

Then it came time to look into her mouth...this never goes well.  He asks her to open her mouth and she shakes her head no.  The doctor reaches in his pocket and says, "What do I have in here?!"  He pulls out a bracelet.  Eleanor starts smiling and says, "A bracelet!" He asks her again to open her mouth....do you know what....she popped that mouth open wide!  I could have hugged him.  This usually does not go well and we went the entire time without screaming!  Yeah!  He could not really find anything wrong.  We were dealing with a cold virus.  Yuck!

Tuesday night was a long night...Eleanor has spoiled me...we do not have very many bad nights.  We did not get very much sleep so Wednesday was a bit of a long day.  She continued to have her runny nose and a little fever.  Wednesday night she slept like a log!  Yeah!

She had a temp but it is gone now.  Her nose is not draining like a faucet anymore but she cannot breathe out of her nose.  We are doing saline sprays three times a day.  This seems to help but is only temporary.  Yesterday she started this lovely loud barky cough.  The CF kind that is so loud that if you are not used to it you look around for the smoker in the room.  She continued to cough through the night last night. 

This morning I finally called Nemours and talked with our nurse.  (She is back from Maternity leave!  Yeah!  We have so missed her!!) We are continuing the nose spray but are going to add albuterol to help with the inflammation. 

Prayers

Prayers that Eleanor's cold will continue to get better and she can start sleeping through the night.  Also, we start the tobi at the end of next week. 

Also please pray for my grandmother.  She has been in and out of the hospital.  There are too many issues to list but she needs your prayers for encouragement. 

Coleen

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

Saturday, June 26, 2010

ate photos soon.
Coleen
Saturday...means daddy is home! We have had a busy week with cousins, going to the zoo, seeing nanny and bubs. TOBI treatments are going well.
I will upd

Friday, June 25, 2010

Heavy Heart

I have been following a blog for the past two months called Not so bright and shiny.  (http://www.notsobrightandshiny.blogspot.com/) It is and was the journey of a brave seven year old boy named Conner.  He had CF and Prune Belly Syndrome.  He is no longer fighting the disease as he is in the hands of our Lord.  I know I have lots of prayer warriors that pray daily for my daughter.  I ask that you will pray for Conner's family in this time of grief.  There are no words to offer her, Conner's mother, I don't know how she feels but I do know that what we can offer her and the rest of Conner's family is prayer for peace and love through the grieving process. 

This disease is real, it takes lives everyday...this is just a reminder of how much people and families with CF have to go through with this horrible disease.  This stat is from her blog: CF death statistics on average are 484 deaths per year, 40 per month, 9 per week, 1 per day

Coleen

Friday, June 18, 2010

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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

Wednesday, June 9, 2010

This treatment done!

Yesterday was Eleanor's fourteenth day of treatment for her Psuedomonas!  We will go to Pensacola on monday morning for a throat culture to see if she has gotten rid of it.  Then I believe we will be back on the TOBI for 28 days since this is our "ON" month.  Prayers that the psuedomonas will be gone and if it is not that we have ways to deal with it.

ROAD TRIP!

We went to Grammi and Pawpaw's today.  Eleanor had a great time seeing her grandparents for the first time in a month!  She was so excited to see them.  She tells you about her day by asking questions.  It is so cute.  For example:  Pawpaw did you have a good lunch? Did you eat like a Big Girl? Did you want to go outside?  Her hair is also long enough to pull up in a pony tail.  She calls her pony tail her "big hair."  So she pranced around today with a pony tail to help keep her mildy cool in all of this humidity.  She enjoyed playing in Ozark and then it was back home to get here in time to see Daddy.

'Tude problems

Eleanor is going thru her period of terrible twos.  The fun of a two year old and sass with piles of 'tude sometimes make you want to go mad...just pray for Robert and I.  She is a great child most of the time but we have moments! :)

This past weekend we got to celebrate my birthday...we had a great day with Eleanor staying with Nanny and Bubs.  We also got to see some friends we have not see in a while.  It was great to see Caleb and Whitney!!  We also went down to the beach and Eleanor had the best time.  She is constant movement.  Walking from the beach to the little sand bar that was about five feet out and back.  This was repeated I have no idea how many times.  Eleanor received a great breathing treatment this time.


When we visited the beach yesterday there was NO OIL!  Please come if you have plans too...we are already seeing less people because of the news reporting.  Right now our beach is clear come enjoy it while you can!

Thanks for reading and the prayers! 
Coleen

Monday, May 24, 2010

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

Tuesday, May 18, 2010

Tuesday, May 11, 2010

CF Awareness month

May is offically CF Awareness month.  This is the time to get the word "out."  Tell  your family and friends about this disease and about how it affects those who have it.  Awareness equals understanding and understanding equals more volunteers to help raise money for a cure to this horrible disease.

We still have a little over a week for our Eleanor's Extravaganza for CF!  If you would like to donate $5 for a ticket for our prizes. Please email me at r-cguilford@mchsi.com and I will get the information to you.  For those of you who have donated thank you!  We are also having a jewelry show in Troy at TB&T this Friday, May 11th from 10 am - 2 pm.  If you are in the area come by and see what we have.  They would make great graduation presents and summer birthday presents.  All, 100%, of the proceeds go directly to the CF Foundation.

More later...Eleanor is waking up!
Coleen

Saturday, May 1, 2010

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

Friday, April 23, 2010

Pictures

We went to the beach again today...I have more pics to come.  She LOVES the beach!

Also I added flower pictures on my share site at http://www.guilfordfamilyphotos.shutterfly.com/

Coleen

Wednesday, April 21, 2010

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

Sunday, April 18, 2010

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

Wednesday, April 14, 2010

Eleanor Flowers 2010 spring.wmv

Click here to view this video

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

Tuesday, April 13, 2010

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

Monday, April 5, 2010

Pictures

I have been neglecting to post the pictures.  I uploaded them to the shutterfly site.  http://www.guilfordfamilyphotos.shutterfly.com/  There are Easter pictures and her cookies pictures.

Enjoy!~
Coleen

Friday, April 2, 2010

Enzymes and Easter

Robert and I made the decision to change Eleanor's enzymes because we were always having bad poops when we got to the bottom of the container.  So we changed from Creon to Zenpep.  This past Saturday Eleanor had the 6 BM's and I could not take it anymore so on Sunday morning we swapped back.  As I have told you that was a bad idea. 
So now that we have swapped back to the Zenpep things are finally starting to come around.  Eleanor had been getting up at 6:45 am.  (I know this sounds normal but not for Eleanor)  The combination of the lack of sleep and her body getting used to the new enzymes was quite a trying time for us.  Today we seem to be mostly over the hump...she slept until 8 this morning and has had two almost normal BM's.  We are hoping that this change will be for the best.  Please keep praying that these enzymes will be more effective than the Creon and be consistenly effective to help her to continue to gain weight.

Funny story...

We were in Publix, yes I go there almost everyday, and we were walking up the isle when she saw an older man and said, "Hi, Mr Noodle!!"  (Mr. Noodle is a man on Elmo's world)  The man looked at us like what?!?  It was pretty funny, at least to me it was.

Today after coming back from Publix I had gotten the groceries out of the car and was about to get Eleanor out when she said,"Help! Fix my arm."  Her arm had an impression from the seat belt on it.  I told her it was ok and it would go away.  She said,"Want mommy to kiss it!"  So I kissed her arm to "Make it feel better" and then she looked at me and said, " I love you Mommy!"  I wanted to squeeze her.  She is the cutest thing.  I love it when they are expressing their feelings...well most of the time!

Easter suffering first then everlasting Joy...

To receive the joy of Easter Sudnay we must go through the pain and sacrifice of Good Friday...

"At the sixth hour darkness cam eover the whole land until the ninth hour.  And at the ninth hour Jesus cried out in a loud voice, "Eloi, Eloi, lama sabachthani?"  -- which means, "My God, my God, why have you forsaken me?"

When some of those standing near heard this, they said, "Listen he's calling Elijah."  One man filled a sponge with wine vinegar, put it on a stick, and offered it to Jesus to drink. "Now leave him alone.  Let's see if Elijah comes to take him down," he said. 

With a loud cry, Jesus breathed his last.  - Mark 15:33-37

He is RISEN!!!  He is RISEN INDEED!

"Don't be alarmed," he said.  "You are looking for Jesus the Nazarene, who was crucified.  He has Risen!  He is not here.  See the place where they laid him. - Mark 16:6


I hope everyone has a great Easter Sunday celebrating the Risen Lord and his sacrifice for our sins.

Coleen

Tuesday, March 30, 2010

Time for CF

First, I would like to thank everyone who stops by to check on us.  You have made this site have over 1100 hits and counting.  We feel blessed that so many people keep up and pray for Eleanor.  We have felt the prayer and support and words will not express what they mean to us as a family.

 Now is the time of my family and I start to raise money for a cure to this horrible disease.  We joined this effort in early 2008 when Eleanor was born.  Since 2008 several new drugs have become available to the CF community.  Recently a new drug called Cayston, whose research was funded by the CF Foundations money (which really means the money you gave in the past), has been approved by the FDA and is currently available to us.  Had Eleanor not kicked her psuedomonas we would have been on TOBI one month and Cayston the next.  This drug is a BIG deal for our daughter since she has been fighting this bacteria since she was 12 months old. 

There are several drugs in clinical trials or will be in clinical trial soon that are a CURE for this disease!  Yeah!  I could go on all day telling you about the great things the CF Foundation does...but I will provide you with a link to check the drug pipeline out for yourselves. http://www.cff.org/treatments/Pipeline/

Here also is a link to the timeline of how the Foundation started and what it has accomplished since its beginning. http://www.cff.org/research/ResearchMilestones/

I know that money is tight and things are hard for every...trust me...just got done paying the hospital bills.  :)  Anything that you can give will be appreciated. 

The link to my Great Strides page is on the side of this page.  If you prefer to send a check to me instead of donating online please email me at r-cguilford@mchsi.com.  We will be selling t-shirts again this year.  You can email me with questions about those as well.

Thanks again,
Coleen, Robert and Eleanor

Monday, March 29, 2010

CF and Sputnum Culture

First the FABULOUS news!!  We had a normal sputnum culture!!  Yeah!!  I am sooooo happy!  The nurse called me this afternoon and I cannot tell you how great this is... :) Yeah!!

Now for the not so good news...Eleanor and her Zenpep did not get along this weekend.  On Saturday she had 6 BM's and the last two were really bad.  So I freaked out and changed her back to her creon on Sunday.  Well, it turns out that it is normal for her body to go thru the bad poops while her system is adjusting to the new enzymes...so it was a bad decision for me to switch her back.  UGH!  So we are back on Zenpep...pray her bottom doesn't get to raw and that her bad poops only last one day this time.

Coleen

Saturday, March 27, 2010

CF Doctor's Visit

We went to Pensacola on Thursday for our quarterly appointment to see Dr. Van Hook.  It was the regular stuff.  However; she only cried when they took her sputnum culture.  We were all so very proud.  She actually let the doctor listen to her chest and back without crying and told the doctor, "Listening to my chest!"  The doctor was very proud of her and told her that she sounded great.  This is always good news.  She weighs 27.5 pounds and is 33.5 inches tall.  They were very excited that she is continuing to grow.  When they compared her weight to her height she is in the 75% range which is awesome for a CF kid.  They like them to be 50% or above.  Now we just have to wait to see if she grows anything. 

We are trying a new enzyme called Zenpep to see if she reacts better to it.  She does okay on the creon but her stools get greasy toward the end of the bottle and we get frustrated knowing she is not absorbing the food like she should be.  So far I am not impressed...will give it a few more days.

Funny story...
She was eating dip one day last week and I left the table to get a napkin for a minute and when I came back she was sticking her fingers in the cream cheese dip, that is supposed to be for her chips, and licking the dip off of her fingers.  It was quite hilarous.

Today we had strawberries and cool whip.  She was not sure at first but then decided it was good.  So now our fruit has dip too!

Our prayer request this time is that the culture comes back free of any abnormal growths and we have kicked the P.A.  We also will be going back on the TOBI and Albuterol on April 6th...how times flies.  Pray for our routine to go smoothly when it starts back.

Coleen

Monday, March 22, 2010

Big Girl Bed

I am losing my baby!  Well, I have already lost her as she is a full blown toddler now but we are one more step toward the complete independence stage.  Yesterday we had two big milestones:
1) We went into the big kids room at church.  She screamed right when I dropped her off and then was fine.  When Robert and I went to pick her up she was sitting down playing and eating some goldfish.  She looked up and said, "There's mommy and daddy!"

2)Yesterday afternoon when I put her down for her nap she kept talking and then we heard on the monitor, "want to get out! it's too heavy!"  Robert told me I had better go check on her so I did and found...a child with one leg out of the crib one leg in as she was straddling the crib bar.  I immediately fussed at her and told her to get back in bed and go to sleep...which she did, thank goodness!

So after that experience we converted her crib into a toddler bed.  The real reason for my alarm is that we have tile floors and there is no padding if she were to fall out of the crib.  So we decided it would be better to have her roaming around her room then have to rush her to the ER.

She did good last night...although she talked until 1030.  I was scared I was going to find her on the floor but when I checked on her she was in the bed!  So very excited.  She slept until 445 and woke me up screaming...I ran in there and she was just lying in bed screaming.  We figured it was either a nightmare or she woke up and didn't realize where she was because as soon as I started her music she went back to sleep.  She woke up this morning at 800.  Yeah, the first night was a success!

She is just waking up from her nap...she went down in ten minutes in her bed like a charm.  Soooo happy!

We are losing our baby but gaining quite a little girl.  Love her so much!!

Funny thing...
I was concerned about her nap since she would be able to see around her room.  Well about nap time it got really dark outside.  I started chuckling to myself and thought Thank you Lord!!  He so knew I needed a little darkness for the start of her nap.  Who says he doesn't care about the small details in our lives?? 

Coleen

Wednesday, March 17, 2010

Cookies and Hissyfits

I decided that since everytime we go to Publix she likes the sprinkle sugar cookies that we would make some at home.  So after her nap today I cut the premade cookie dough and put it on a sheet.  We washed our hands and then got the sprinkle container.  I let her stand in the chair and she was already excited about that.  This was under the pretense that Eleanor was helping mommy cook.  So she turns the sprinkle container over and they go everywhere some on cookies, tableclothes, and the floor.  I had to help her toward the end as she was trying to push the container in one of the cookies. 

Fun right!  She was having a ball until I took the cookies and put them in the oven.  Then we had one big hissyfit!  Bless her, she doesn't understand the concept of cooking the cookies.  I put them in the oven and told her that they cookies were yucky how they were and that they had to cook.  When the timer bings it will be ready.  Nothing worked.  So, here I am thinking we will do something nice and it ends up with discipline being administered.  So we finally get calmed down and she eats the sprinkles out of a container I put some in for her while watching the cookies "cook."  Finally, with about two minutes left she looks up at the oven and says,"We have to let the cookies bake."  So I think she finally understood I was not trying to be a mean mommy!

I took the cookies out and let them cool for a minute and then took them to the table so she could look at her masterpieces.  She enjoyed this part...I did the second batch of cookies myself. (no drama needed)  I took some pictures of her eating the sprinkles and the cookies.  I will post them later.

Her cough is mostly gone...only about twice to three times a day.  Yeah!! 

A Mommy funny story....
I don't have to many moments like this but...Monday morning we got up and I decided it was going to be one of those mornings that we go get tater tots from Whataburger.  So after her vest I pack us up and call mom just to check in...she answers and says, "So how did the shot go?"  It was a OH NO! Moment....I had completely forgotten about Eleanor's RSV shot.  It was 920 and her appt was at 930.  So we made an unexpected pit stop on the way to get Eleanor's breakfast.  We only arrived 5 minutes late.  Eleanor did the best she has ever done.  She stepped on the scale without tears and took her temperature in the mouth with only one wimper.  This is the first time ever she has not screamed when they tried to take her temp in her mouth.  She only started screaming when they stuck her and I don't blame her as I know that part hurts.  So my little girl is growing up so very fast.

Family
She has had big weekend seeing her cousins from Troy.  The most fun she has had with them as they are all old enough to play pretty well together.  We even got her to share without any fits.

We also have spent time with Aunt Lulu, Mary, Nanny on monday and tuesday.  I think Eleanor wore Mary Quinn out.  She would not let her rest.  She would say,"want Mary up." or "want Mary to read the book," so Mary Quinn had a friend for two days.  We also got to see Great Aunt Harriet and Cousin Dee.  She enjoyed a lunch with them on Tuesday.

Pray for weigh gain as she did not gain any from a month ago when we got last month's RSV shot.  Hopefully she will have weight gain at her CF doc's appt next week.

Coleen

Friday, March 12, 2010

Finally Friday

Hey all,

We have had a busy week.  We stopped TOBI on Monday, Tuesday we went to the church for mommy to "work" for a little while then went into to see daddy and eat lunch together.  Wednesday we went to Nanny and Bubs for mommy to get her hair cut.  She got to swing in the sack swing that is out in the yard and I think it is one of her favorite parts of going to see Nanny and Bubs.  She also ate four of Nanny's homemade Pecan Sandies.  Needless to say, she liked those cookies.  I had to tell her there were no more cookies.  She was not real happy with me.  Thursday we had to go to the grocery store and get the doggies some food.  Eleanor got another cookie.  After thanking the man for the cookie she said, "I love cookies!"  It
is so cute because love sounds like lu-uofve cookies.  It has a big emphasis on it.

Friday Grammie and Pawpaw came down.  While waiting for them to come she had a really good breakfast.  A whole pop tart and a plate full of strawberries.  After finishing her strawberries she picked up the plate and said, "Grapes please!"  I told her that it was time to eat her yogurt we were done with fruit...she thought about it for a minute and said,"Grapes please!"  Then she smiled like it will work on mommy.  Bless her she didn't not fuss when I got the yogurt.  She ate her yogurt like a big girl and got down. When Grammi and Pawpaw got her we went to eat Mexican food.  She ate a whole bowl of "mamatoes" (tomatoes) and all of her soft taco.  Then we got done and she said, "Go to see the playground!"  The little girl remembered that the playground was close and wanted to go.  So we dropped Pawpaw off at Michaels and went to the playground.  She had the greatest time!  Grammi finally got to see her play on the playground. 

We went and picked up Pawpaw and on the way home he sneezed and from the backseat we heard, "Bless you Pawpaw."  It was too cute.

Cough...
Even though this has caused me angst...I am going to say it...it is much better.  She has not coughed very much and it is getting better.  I think the TOBI must have taken care of what it needed to because she does seem to be getting better.  We have our last RSV shot on Monday at 930 am.  Pray for her to have a smooth time during the appointment.  Then our Cf Clinic visit on 3/25 so we will find out how she is doing.

She has been a cute little girl and she is going to have a busy week.  Her cousins are coming from Troy tomorrow.  Then she will get to see Aunt Lulu and family, then Aunt Debbie and family.  After this next week she is going to think she is supposed to have people around her all the time.

Thanks for the prayers.
Coleen

Monday, March 8, 2010

Done with the TOBI ( For 28 days)

Hi everyone,

We got done with the TOBI this morning.  (as of my last blog I was a day off in my calculations)  YEAH!!  We are so happy.  This means we are back to one breathing treatment a day with, right now, three vest treatments.  When her cough goes away we can back down her vest to two times a day.  I don't know if Eleanor or I will know what to do tomorrow morning.  She is in bed, got in about 15 minutes earlier tonight, and still chattering away.  We have had several funny moments so I will go ahead and tell them to you...

We were sitting at the table and Robert had gotten up but I did not know where he went.  So I looked at Eleanor and said I guess your daddy left.  So Eleanor yells, "Daddy where are ya??" three times until a laughing Robert comes walking down the hallway.

She was dancing with Elmo tonight.  There was a segment about tap dancing and she was trying to follow them.  It was cute/hilarious all at the same time. 

She saw her saline nose spray today on the counter today and said" Want to go spray my nose?!?"  She reminds me to do it.  That is the funny thing.  What kid reminds their mom do squirt saline up their nose. She usually wants me to do each nostril twice. 

We were watching an episode of Little Einsteins at lunch and she proceeded to recite the entire episode word for word to me.  She was very proud of herself!

Not so funny thing...
We had our first adventure in bullies this weekend.  We took her to Destin Commons to play on the playground and she really enjoyed it.  She likes to go thru the tunnel that is under the lighthouse.  This time a little girl had decided to plop herself right in the middle so no one could get thru.  Well, Eleanor went in the tunnel, said excuse me to the little girl (who did not move) and then stepped over her.  In the process of stepping over her she put her hand on the girl's leg.  Well, the little girl didn't appreciate it because she screamed DON'T TOUCH ME!  Eleanor turned around and smiled at her and kept going.

That was the first time.  The second time the first girl and another were blocking the tunnel.  They would not let her in.  (Mind you I now understand how hard it is as a parent to let your kids fight their own battles)  So she went from one side of the tunnel to the other and the first little girl pushed Eleanor a little bit.  I am thinking what to I do??  Eleanor looked at the little girl, smiled, and pushed her back.  I called to Eleanor at this point and told her to come here.  She obeyed.  I have to tell you the whole time I called her I was glaring at the little girl.  I did bite my tongue but I really wanted to tell her a few things but decided it was Eleanor's battle not mine. 

The strongwill that Eleanor has been blessed with, yes I said blessed, is going to come in really handy in the next few years.  I have to say she was unperturbed by the entire situation and did so much better than I would have.

On a side note...
The spring breakers have arrived at the beach!!  One sure sign that spring is on its way.  If you are coming down be careful and remember to be nice to us locals!

She just sneezed and thru the monitor Robert and I are hearing Eleanor say, "achoo, bless you!"

Coleen

Thursday, March 4, 2010

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

Monday, March 1, 2010

Doctor's Visit

We had a successful visit!!  She weighs 27.2 lbs and is 33.5 inches tall.  This is the 50th percentile for weight and height!  I never was in either of those categories growing up.  For a kid with CF this is great news.  It is really hard for them to grow weight or height.  When I called the CF clinic and told our nurse she was very happy as well.

Many of you know I am really short...so the fact that she is in the 50th percentile for height is a BIG DEAL...so this calls for a little celebration.  Our doctor, Dr. Fitzharris, was very pleased with her progress and said her developmental skills were very advanced for her age.  Of course, Eleanor clams up when we go in there and does not show any of her spunk.  However, as soon as we got to the elevator when the appointment was over she jumped up and down and said,"Go get some french fries!!"  We always go get tater tots or french fries after a doc's visit.  (Again, you know you have a CF kid when!)

Funny story...

Last night we were at the beach house with Nanny and Bubs giving her a bath.  (We don't have bathtubs at our house so she still is in a big baby tub.)  She was enjoying the big tub and she kept flipping over on her belly.  I kept telling her that she needed to get back on her botton and sit up.  She would oblige each time but continue to disobey.  Oh the joys of a two year old!  Well, next thing I know she is laying down on her back in the tub ears submerged and giggling at me like "Look what I can do!".  For some reason she also decided that she would try to turn over.  You know what happens right?  She rolls over and dunks her head fully in the water getting a mouth and nose full of water.  Needless to say that ended her bath...funny thing is she never cried!  She wined twice as I was getting her out but never cried!!  So you now know what I mean when I say Eleanor is fearless.  She is completely fearless...

Coleen