Updates, News and stuff!

Updates:

We are still in the midst of doing our TOBI treatments.  She is doing well most of the time.  We are starting to encounter the I don't want to's.  Right now we just change up her routine and let her paint or play with playdough while she is doing the TOBI.  It seems to have worked as today she didn't want me to take the TOBI off because she wanted to continue to paint!

She is now on Prevacid once a day for her reflux.  This is a result of her bronch.  Found out that she has very bad reflux.  Interesting as she never seems to complain about it but who know that she is dealing with that she doesn't tell us. :)  She is a strong little warrior.

News:

Robert and I went to the doctor yesterday and confirmed that we are pregnant!!

This is our baby #2.  She/he measures at 3 inches and will be twelve weeks tomorrow (4/1)!  We are due on 10/14/11.  Isn't it amazing how meticulous God is??  What a precious sight it was seeing this little one kicking, stretching, and dancing around.  The doctor says everything looks normal and healthy.  "For you created my inmost being; you knit me together in my mother’s womb. ~Ps. 139:13

It is not wonderful that you can see the profile of the little face the nose, lips, chin, forehead.  The little legs.  You cannot see the arms because the baby was moving so fast.  We are very excited and would ask all of you to pray for a healthy baby and a smooth pregnancy.

Eleanor doesn't quite understand.  When we told her she was going to be a big sister she did a little dance and screamed, "Yeah!!"  She told us that she can teach it numbers, letters, and to help it drink.  I will update you with her other interesting insights as we get them.

CF Fundraising

We are in the middle of our fundraising.  I have tshirts for 15.00 and we have raffle tickets.  If you would like to just make a donation please click on this link:

http://www.cff.org/Great_Strides/ColeenGuilford7495

Thanks!
Coleen, Robert, and Eleanor
  

Pre-admin done!

I have gone thru the pre-administration for Eleanor over the phone.  It was funny talking with the lady and having to tell her about Eleanor's different meds and about her enzymes.  It was a interesting conversation...I always forget when we go a while without having to have one of "those" conversations.  I forget that not everyone knows what CF entails on a daily basis.  Since it is just second nature to me as it is our life.

We have to be at the hospital at 6 am on Monday.  Bright and early...this should be interesting!  Eleanor will be fine until we see the hospital then she will probably start crying.  I already warned the lady that she would not be happy to see them after her last experience getting an IV.  She told me Eleanor would get some happy juice and should be fine.  All I have to say is that I warned her! ;)

We are done with TOBI!!  Finished up yesterday morning, so this morning we got to go for a stroll along 30A and see the water.  I could smell the salt in the air which is a good benefit to her.  She wanted to go play in the waves and sand.  She was told to wait until it warms up.  Although we might try to go on Thursday if it warms up to almost 70! 

Keep her and us in your prayers.  I will try to update the blog on Monday afternoon to tell you how it all went. 

Coleen

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

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



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

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

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

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

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

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