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.

Rosebuds

To my friends that are considering signing up their kids for Rosebuds (Kids helping kids with Cystic Fibrosis)...we learned there is not a kids race the Saturday before our adults race the 1/2 and full marathon on Sunday March 17th...sooooo....we are turning lemons into lemonade!  We are looking into having our little ones AND their parents run in the COLOR RUN in Atlanta on April 6th.  Be on the look out for more updates since the sign up for this race will begin on November 15th.  If you have not heard about the color run, you can check it out on this link. http://thecolorrun.com/atlanta/ It is AMAZING fun for kids and parents of all ages.  This seems like a great fit for having fun while also raising money for CF!  I'll keep you posted as we learn if this will work for us.  My amazing friend, Sue Stein, is trying to make this work for us!!!

Love to see a long lull from last post b/c...

When I have not posted in a long time on Elena's update, I smile to myself!  This is great b/c in this case, no news is good news.  The entire house has fought off viruses, colds, and sickness for the last month and 1/2.  Elena continues to have mild issues but nothing NEAR what the rest of the household has dealt with, PRAISE GOD!  Usually Elena is the first to get something and the last to fight it off with a lot of meds, dr visits, and occasional hospital stop in between.  We are HAPPY to have it the other way around.  I would rather be sick ANYDAY over ANY of my kids. 

Elena has been doing her newest medicine, Pulmozyme, for a couple months now.  She is doing great with it!  This medicine targets one of the causes of the typical CF thick, sticky mucus - extracellular DNA - to help keep mucus thin and loose.  Giving this to her at night allows this great med to sit in her lungs overnight and work its magic.  We have also added zinc.  This has helped increase her resistance to viruses and we can say that it works! These are the little victories in our home that we celebrate.

Meanwhile, we have started planning for the Elena's Rosebuds race!!!  It will be on March 16th at Centennial Olympic Park.  We are going to be doing a couple of fundraisers (one is a Thirty One product party where 100% of commissions go to CF organizations!)  You can shop for that by clicking HERE and shopping between Nov 1-12th.  Also, we will be selling the super duper cute necklaces from Bashful Bliss.  They are only $15!  $7 of those dollars will goe towards Elena's team, Rosebuds!  Be on the look out for that fundraiser.  I'll post when we finalize that.  You can get your Christmas Shopping done AND help out our cause:)  It's a Win WIN!

Oh, and for the parents who want to run/walk/volunteer, you can join Joel and I at the 1/2 Marathon/Marathon on March 17th!  Wear your crazy green socks for St. Patrick's Day!  I'm sure there will be some green beer awaiting you at our finish line tent. ;)

Everett's blog post update for himself and Elena.

So here's the update folks!

If I haven't said it enough...Dr. McKean and his staff are amazing! We bring a lot of noise and chaos into the office with each visit, but the kids really love coming and seeing everyone. My highlights were:
1. Everett showing Dr. McKean how they both had running shoes on (only the way a 15 mth old can communicate this, "a da a do a shhesh" while pointing to McKean's shoes then picking up his own foot and pointing to his own)
2. Ethan hugging McKean's back while McKean typed up Elena's health update on the computer
3. Emily not crying during her flu shot. All four kids and Mommy had their flu shot and Emily was the only one that didn't cry...Mommy was the loudest;) and
4. Elena demanding I NOT be present for her blood draw, but she was TOTALLY ok with her siblings being in the room :) I believe this was the first time EVER that Elena did not scream while she had her blood taken. Wa-hoo! Dr. McKean (who remembers how very difficult this task can be)joked that he was ready with ear plugs just in case, but no need!

Elena was there for her routine Cystic Fibrosis check up. She grew 4 inches and gained 2 pounds in the last 3 months! WOW! Her lungs sounded great and her lung function was up...wa-hoo!!! Everything looks and sounds great! We will wait to see what the sputum culture and blood tests reveal. I'll post those results when we get them. Meanwhile, we are feeling so very blessed for her continued great health! McKean suggested we start her on zinc to help fight off virus's and it seems to be working. Today, he said we should get the whole family on it. With the way it has been working for Elena, how can we not?

Everett met with McKean because he had two croup incidents in less than 2 months. Ev's pediatrician suggested we meet with Dr. McKean since he is an Ear, Nose, and Throat doc. In the mean time, Miller had us get an x-ray on Everett's throat and run a blood panel to search for any allergies he may have. Results reveal no common allergies and the xray shows he does have a narrowing in his throat as a result of croup. So, McKean has explained that 50% of kids with chronic croup or other breathing conditions, will out grow the issue by the age of 6. If Everett out grows being a "croupy kid" by age 6, then McKean will not categorize him as having asthma. However, he is going to treat him as if he does have asthma until then. We will keep some different meds in the house in case he has another breathing issue in the future so we can care for him at home.

I say this was a highly successful dr visit!  So, we have Elena doing great and Everett being cared for!!! All is looking good. Great doctors equals happy parents:)