9 times, 9 times, it is 9 times

Hey everyone!

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

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

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

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

Funny things...

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

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

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

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

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

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

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

Playground pics

http://guilfordfamilyphotos.shutterfly.com/You can view all of the playground pictures at by clicking on the  above link where we have our Shutterfly share site.

Coleen

Eleanor's cough again...

Last time I told you how her cough was getting better.  Well, as soon as she woke up from her nap that afternoon it was back with a vengence.  Robert and I took her back to the playground on Saturday just to keep her active and help get the junk out.  It did the job and we took some pictures I will have to upload and post for everyone to see. 

I am going to have to place a call into the doctor tomorrow as her cough is getting worse.  We have not missed a treatment of anything and are getting her to run around to help "pound" her lungs.  The coughs are definately productive but she has not coughed this much ever.  It is almost constant now.  She can sleep without coughing for the most part.  I don't know what is going on but we are hoping that maybe the junk has been loosened up and now she is getting it out.  For CF a cough is not supposed to be bad but it is when they normally don't cough.  Prayers are needed for this...

Funny things...

Eleanor has a pair of Elmo clogs and she has worn them to the playground both times we have gone.  All the other kids seem to notice them and she is cute as she will point to them matter of factly and say "Elmo shoes."  On Saturday we went and a little boy had a pair of sweats on that had Mickey Mouse (who she also loves) on them.  He came up to her and said Elmo!  She looked and him and pointed to the Mickey on his pants and said, "Is that Mickey mouse?  It is Mickey Mouse!"  She was too funny.  She followed the little boy and his sister around playing with them most of the time we were there.  They also had the water fountain on and she decided to pay it a visit.  She came very close to getting wet.  Robert got there just in time or we would have had a soaking wet child.  Wish you could have seen the face she gave us...it was like Haha I know I am not supposed to do it but I wanted to see what you would do...she is quite a corker.

I will post the pictures soon,
Coleen

Eleanor and the playground

We went to the playground at Destin Commons today...I know you are wondering why I took her out when she was junky sounding.  I knew that there is a good chance of pounding and getting the junk in her chest stirred up if we went to the playground...so off we went.  She has not been to this one in a while and can now play on it better.  She was too cute!  We got there and this little boy was jumping off one of the sea creatures they have.  ( I will have to take a picture and post sometime so you can see the playground)  She started hopping up and down saying Jump! Jump!!  She was sooo excited to see other kids. She like going thru the tunnel that went under the lighthouse...she liked it so much I stood back and watched her.  Well, she was apparently having such a good time that she forgot about me for a few minutes and then I could see the look on her face.  It was like 'Oh Wait! Where's my Mommy?'  So I called out her name and she smiled and kept playing.  She is so independent but still wants to know where mommy is. :) Make me feel good.  She played well with others and she didn't cry when I told her it was time to tell the playground Bye Bye!!  All the way to the car she was saying "Bye Bye Playgroung see you later."

She amazes me sometimes...you know that a two year old doesn't always behave properly but today she did perfect.  I was so proud.  We will have to go back when the weather is pretty another day so she can play and interact with other kids.  She is definately going to be a social butterfly.

Her cough is getting a little better.  Not coughing as much as she has been...she still sounds raspy and you can tell the junk is in there but it must be getting out because she seems to be getting better.  She is taking a relly good nap today.  She went down at 2:10 and it is 4:40.  I am going to have to wake her up in a minute so she will sleep tonight.

I hope everyone is having a great Friday!
Coleen

Cough

Eleanor's cough is steady at eight to ten times a day.  To any of you it would probably sound like we let her smoke since her birth...it is really deep and crudy (don't know if that is a word) sounding.  She is actually getting better at coughing to clear her voice when it becomes raspy.  The clinic told me that most all of their cfers are having this problem right now.  Since she is on the TOBI they do not think it is psuedomonas again.  To help clear the mucus and combat the crud she has we have gone to three vest treatments a day and three albuterol or "abby" as Eleanor has started calling them.  So that equates to three vest treatments a day and let's see...6 nebulizer treatments a day.  Oh the joys of life!!
You would never be able to tell she doesn't feel good as she is in constant motion but you can tell that it is taking a toll on her a little bit. 

THANKS for the PRAYERS!!  Yesterday we had a normal day...she went down for her nap and only talked a little bit.  YEAH!!!  Today she slept until 830 but is now down at 230 for her nap.  I put her down around 200 so she talked for a little bit and then gave it up.  Her BM's seem to be getting back to our normal schedule.  Yeah!!

Funny things...
Eleanor has now discovered the cheese in the spray can called "easy cheese" yes the stuff you healthy people probably cring if your kids ask for.  She loves it on wheat thins.  I am glad as it is a good treat to have during lunch that is a break from the same old stuff.

I forgot to post the other day Eleanor can now sing Twinkle Twinkle Little Star by herself.  She has been singing it with us for a while but now sings all by herself. She also sings "Baby Jesus" that's "Jesus Loves Me" to us.  Also Robert and I have been singing the ABCs to her since she was about two months old.  On Sunday she sang the her ABCs at supper out of the blue.  All letters and in correct order.  Robert and I were completely speechless.  She amazes us everyday.

I will keep you updated on her cough...now to do some work for church,
COleen

Here's the update on our life...

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

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

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

Coleen

Prayer

I have been up late working on my "work."  I just wanted to post really quickly...Eleanor started coughing again today.  Even though people with CF are supposed to cough it usually means something is up and I concerned that it is the psuedomonas.  We won't find out until March 25th but if you have a minute to shoot a prayer up about her cough it would be appreciated. I don't want the picc line and IV antibiotics to be for naught.

Thanks!
Coleen

Lunch with Daddy and Snow?

We had lunch with Daddy today.  It always makes the day better when we go see him!!  Believe it or not they are predicting us to have SNOW!! I will believe it when I see it.  If it does snow I will post a picture.  I have had several people tell me they tried to leave comments and can't if you know what I might have done wrong email me r-cguilford@mchsi.com to let me know.

Hope everyone is staying warm!

Give Praise in bad moods and good moods

I am going to tell you ten things I am thankful for since I have not been in the best mood today I think I need to remind myself what I have to be thankful for.  (If you know me well I would make you do the same if you were in a funky mood)

1.  I am thankful everyday that God loves me!  An undeserving, sinful person...he continues to provide grace and shows his mercy to me in life when I think I can no longer handle it.

2.  I am thankful for my husband who loves me all the time, puts up with me and all of my fabulous quirks.  Trust me I have too many to list.

3.  I am thankful for the little girl named Eleanor who is a joy in my life even when she challenges me.  She brightens my world and reminds me how I must look to the Lord sometimes. Also, for the laughter she brings to our lives. 

4.  I am thankful for my family.  As big as it is there is always a funny story or two to hear...also for the love shown by all of them.

5.  This may sound weird but I am thankful for Eleanor's cystic fibrosis.  It has brought me closer to the Lord and to my husband.  It would have been easy to get mad and thrown in the towel but that is not how the Lord made me and I am a better wife, mother, person for the trials cystic fibrosis has brought into my life so far.  I would not change it for anything.

6.  I am thankful for the body of Christ I get to worship with on Sunday mornings and the friends the Lord has provided to me.


7.  In today's times I am thankful that my husband has a job that he likes and for the most part enjoys going to everyday.  I know that not everyone is in the same boat.

8.  I am thankful for technology.  Without the internet and email the CF battles would be harder to deal with.  The technology keeps me in the loop with what is going on in the CF world and keeps me in touch with other CFers and CF Moms.

9.  I am thankful for working appliances.  I went a month and a half without a washing machine and during that time my refrig quit as well.  It is nice to have creature comforts we take for granted everyday.

10.  I am thankful for the little things...like eleanor's attitude with her treatments, another solid BM today!!, my parents and in-laws helping dog-sit when we were in the hospital, being able to spend my life loving and caring for Eleanor. 

This is not an exhaustive list at all.  It was just what first popped into my head.  Remember when things are not going your way or you are just having a bad day.  Count ten blessing the Lord has given you or give praises to him try five if you can't find ten.  After you look at your list you may just realize how much you are loved and cared for and snap out of it. :)

First day post PICC Line

Eleanor slept until 845 this morning.  She is still staying awake until 1030 because she is not used to going to sleep earlier.  I know after about a week she will get back into the routine.  We woke up this morning and did our routine.  Except after breakfast I am supposed to give her the TOBI treatment and in my fog this morning I gave her the Pulmozyme.  No harm done I usually give her Pulmozyme at night time in this part of the treatment.  So I had to give her the TOBI right before nap time and it put her a little behind going to sleep.

Funny story...I was changing her clothes this morning so we could go to the grocery store and she started wimpering.  I was not really sure why then it hit me she thought we were going to the doc's office.  So I told her we are going to Publix to get some food and get you a cookie!  She looked at me and smiled the biggest smile and then said COOOOKIEEE!!  All I heard on the way to the store was "I am going to get a cookie!"  We get to the store and she asks the man "Please cookie" and "Thank you" then proceeds to look at it for 5 minutes like it was something she had never seen before.  She takes a bite and then decided she doesn't want it.  So we brought home a cookie with one bite out of it.  At least it provided a distraction while I shopped!!  It's the small things we have to be thankful for....

Also ( you will notice I will talk about her BM's on her sometimes; soon I will post and tell you why I have to watch them so closely)  we had a solid normal BM...YEAH!!!  Finally, it has been two weeks.  Only a CF mom could completely understand my joy but feel free to do a little dance with me as well.

She is still asleep for her nap right now.  I hope everyone is having a great day!

Praises,
Coleen

Eleanor's picc line is out!! Yeah, praise the Lord.  She did not like the tape coming off but after that she did great.  We are home and she is out!  It is almost 5 and she is still asleep.  I will have to wake her up in a few minutes so she can sleep tonight.
Now we will be back to her daily routine. She is now going to be on Albuterol (twice a day), Tobi (twice a day for 28 days), Pulmozyme (just once!) and her vest twice a day for 15 minutes.  We do her tobi on 28 days then off 28 days.  Her next appointment in Pensacola is on March 25.  They will culture her again and will (hopefully) will find out that the psuedomonas is gone and the iv treatments worked.
I will keep everyone updated thru this blog...that is all for now...will post later.