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...

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.


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.


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?? 


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.

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.


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.

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.

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!"


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,

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...