Rainy day blues...with UPDATE

Usually, we love rainy days. It means a chance to lay on the couch in our jammies and do homeschool while snuggling. Today however, we are still in our jammies laying on the couch but this time nursing a fever.

Elena had a fever yesterday afternoon along with a headache and runny nose. She seemed fine all day and then all of a sudden she was crying and not feeling very well. The fever would not go down overnight with the help of medicine. Today we called the CF doctor. He suggested a stronger medicine to help get the fever down. It seems we have broken the fever and now we are enjoying lunch with our siblings while watching Phineas and Ferb on the iPad.

The doctor thinks we may be dealing with a virus. We are keeping a close eye on her to make sure it doesn't turn into something else. We know all too well how quickly things can change for Elena.

Sometimes I feel silly posting stuff like this. It may not seem or sound like a big deal. And usually it is not. However we have had so many times when it changes very quickly and turns into more serious stuff. Many of those times I post nothing. Then I wish I had the prayer support of my family and friends. Learning from my mistakes I am posting now :-)

Pray it's just a virus that passes quickly. As of right now it sure seems that way. Thank goodness!


and the UPDATE as of today 2/23/2013...its a virus.  Ethan got the fever and sickies within 12 hours of Elena.  Elena's fever is gone and everyone seems to be doing so much better!  Prayer for Elena has always been so amazing!  Answered prayers allowed us to bring Elena home with us from the hospital almost nine years ago!  Prayers (unanswered and answered) rock our little Goodrow Gang world!

CF Superhero!

Check out Elena's video she produced to help recruit runners and donations for CF fundraising teams 65Roses and rosebuds!
http://youtu.be/QcOrI_l3TM8

You can make donations using Elena's link here http://www.razoo.com/story/Goodrow-Gang

or on our family blog at www.goodrowgang.blogspot.com

Don't forget to click "like" cause you are REALLY gonna like it!!

Why we participate.

Before Christmas, Elena and I learned about a little boy her age that lived in Kentucky.  He was trying to break a Guinness World record and receive more than 30,000 Christmas cards.  He reached his goal and surpassed that with a whooping 700,000 cards!!!  Elena was happy to participate by mailing a card to Dalton and signing it with a note, "Hi Dalton, I'm Elena.  I want to break a Guinness World record one day, too!  I hope you do it!  P.S. I'm eight and have Cystic Fibrosis like you.   Praying for you!  Love, Elena".

We learned on Sunday that he went to Heaven on Saturday night.  Our prayers are with this young family.

When I learned the news, I talked to my kids about the loss like I do all others.  We talked about all the wonderful things Dalton accomplished.  We discussed how his body is perfect now and he can breathe easy.  We then ended the conversation like we always do, "How exciting it must be for him to be in Heaven with Jesus!"  The kids all nod in agreement with giant smiles on their faces, we say a prayer for the family and continue our day.  This time however, Elena asked, "How old was Dalton, mom?"  I froze up and Joel answered for me, "We don't remember?" 

We are not ready for her little mind to have to contemplate her own life expectancy.  She has been to enough CF events and heard about too many losses in our CF community so she knows people can be taken from this world what seems like too soon because of Cystic Fibrosis.  However, we don't think she has made this connection to herself...yet.  We know the day is coming that we will discuss this with her.  She is too analytical in her thoughts (MUCH like her Daddy) to let this conversation slip by without more thought. 

We attend Cystic Fibrosis fundraisers, we join CF committees, we spend time with CF families, we create CF fundraisers (actually Elena did that!), and we immerse ourselves in helping toward the cause of raising money to help CF patients and their families.  We do this because it helps them, it helps Elena, but it also helps Joel and I feel like we are doing something!  We don't want to feel like we are allowing CF to take over our family.  Volunteering, fundraising, and participating helps us while helping others.

Please consider donating towards the cause by visiting HERE.

 

Got Kids or nieces/ nephews or grandchildren that are Pre-K and up (yup, no upper age limit..so come join us Grandparents! ) Join Elena's CF fundraising creation, ROSEBUDS on March 9th 2013 by visiting HERE and select Rosebuds. This year we are trying something new! It is a race like the TV Amazing Race!   I know parents, Aunts, Uncles, Grandparents...EVERYONE can participate and EVERYONE will have fun! Our family will be there and we would LOVE to have you join us!  Our webiste will describe the details of the event.  (as of this morning they are still updated the site so be patient...or send me an e-mail and I will send you the flyer in PDF.) We can't WAIT to try a fun twist on a race!

 

Run, walk, or volunteer with our team 65ROSES this March 17th, 2013!  Join our team by clicking HERE.  I'll be running and Joel will be at the finish line with all the kids! I'd love to have a group of running partners and I know my kids would enjoy some company at the finish!

 

There are so many ways to join our fight! 

Won't you join us in the fight against CF for Elena and her friends?

 

Fundraising for CF

http://www.razoo.com/story/Goodrow-Gang

Our family works together to fundraise for big sister, Elena.

Every year it brings our family much joy to run for a cause; one that is VERY important to us. We run to give more tomorrows for our oldest child Elena. We run to help her and her other friends with CF breathe easier. We run so we can pick on Elena's future boyfriends. We run so that we can see Elena graduate college. We run so Elena can be there for her younger siblings as they need big sister's help in life. We run so we can have a tomorrow with our daughter...so those we know with CF have tomorrows...because this is something we CAN do!

Christmas joy:)

We are happy to report after Elena's follow-up appointment with Dr. McKean that we are staying home for the holidays; no hospital visits for us!! Her lung function was 97%! We are also happy that she is recovering so well. So much to be thankful for this Christmas.

She does not need to go back to see Dr. McKean until after her birthday in March. We are rejoicing a lot in our house tonight with a lot of giddy giggling going on.

Update on the two extreme E's

Here is the update:

Everett (the youngest E)

After meeting with Dr. Miller today, Everett was diagnosed with bronchitis and a viral infection. He is on an antibiotic for the infection. He is doing breathing treatments 3x a day (with his big sister) and it was suggested that he does chest pt. Ev is also taking Mucinex to help clear out all the guck. His iron was low, so we are back to giving him iron supplements once a day. This will be a regular thing now. 

 

Elena (the eldest E)

Dr. McKean called me tonight and said that Elena's throat culture came back with "stenotrophomonas". Learn about it here: http://en.wikipedia.org/wiki/Stenotrophomonas_maltophilia

He prescribed her to a new antibiotic since the one she is currently on should not help with what she has. McKean was surprised to learn that she was doing better on the "wrong" antibiotic. He wants to wait and see her a week from tomorrow as to give the new antibiotic time to heal her. So, we will not be going in on Weds for an appointment. Meanwhile, she has not had anymore runny nose or cough episodes.

We will let you know how they do!

Given another chance...

We visited Dr. McKean yesterday for a CF check up. For the past 2 months our family has rotated, shared, and swapped sickness. No amount of hand sanitizer and hand washing seems to prevent the inevitable.

I always have a sinking feeling in the pit of stomach prior to CF well checks. Usually, we are surprised by some fluky crazy thing she has and that we were unaware of. As a parent, you feel like you have let your child down by not knowing they were sick.  We have learned with CF you never know when they are really going to get super sick...it just seems to spring on you!

Before this visit, Joel and I knew she was probably going to have issues and she does. Her lung function was down in the 70's which is very low for her. She is usually high 90's or even above 100. When her function gets this low, there is usually talk about a hospital visit. We are very thankful that Dr. McKean trusts that our family will work hard to get the right meds in at the right times! We are going to fight whatever this lung deal-e-o is at home and hopefully succeed like the last time we had this scare a few months back.

Elena is a tough little girl that we know can over come this! With her low lung function, she still managed to run a race with me on Sunday prior to her appointment!

Joel and I feel confident she will overcome this.  We will know for sure after her follow up visit next Wednesday.