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

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

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 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

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

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

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