Thursday, June 26, 2014

Shoot For A Cure

Our last big fundraiser was a sporting clay tournament to benefit the Cystic Fibrosis Foundation.  
My mom really wanted to put this together and I think she did a great job!  We had 10 teams, a sponsored lunch, door prizes, and in the end raised about $2800 for the CFF!
That brings our total for the year to over $19,000! 
We are so very grateful to everyone who helped us raise money this year.









Wednesday, June 18, 2014

Clinic...And Sick Again

E had been feeling crummy for a few days and then woke up one morning with her eyes matted shut, nose running and a cough.  Luckily we were going to clinic the next day.  Dr. R checked her ears and said they both looked pretty bad so we went ahead and started a 21 day round of Augmentin.

Our clinic started requiring patients to wear masks during appointments when they go back and forth from room to room.  That didn't go well!  We took some extras home to play with so we could try to convince her that masks are fun to wear and hopefully next time she won't fight us as much!

She hasn't gained any weight since her last appointment.  I knew this would probably be the case because she has become a very picky eater and really only eats one meal a day.  As much as I want her to get her calories in, I also don't want to create a monster! In our house if you want to eat, you have to eat what is in front of you.  And if you throw it on the floor, the meal is over!  Sorry, kids!  I can't make 3 different lunches and dinners every day!

The doctor and dietitian said not to worry about it right now, though, because she has always had good weight gain before this.  We'll push through the toddler stage and she'll figure it out just like her big sisters did.  Hopefully sooner rather than later!

Update: I got the results of her throat cultures and it showed that she grew Staph aureus.  This is the same one that grew on her cultures a few times before, but it is nothing to worry about and we don't need to do anything differently.

Hopefully this antibiotic will make her feel better and we can get back to enjoying our summer!

Wednesday, May 7, 2014

Great Strides 2014

This past weekend was our annual Great Strides walk to raise money for the Cystic Fibrosis Foundation.  Over the past few months we worked really hard to come up with creative ways to raise money.  The response to our t-shirt fundraiser was amazing!  We sold about 125 of them and then even reordered more for people who missed it the first time!  We sold hundreds of bracelets and have raised about $4000 from that alone!  
Our total amount raised as of today is $15,640!!
Emery's Angels Team Page
THANK YOU SO MUCH to everyone who donated and to all of those who helped raise money!

There were about 50 people that showed up to walk with us on Saturday!

















Monday, April 7, 2014

CF Jewelry

We have started selling this beautiful, hand stamped jewelry 
to raise money for the Cystic Fibrosis Foundation!  
For more information, visit our Facebook page: Emery Grace Collection

Each bracelet is $20 and the proceeds will benefit the CFF!
Send me a message here or through our Facebook page if you have any questions about how to order!



Thursday, March 13, 2014

Clinic 03/12/13 - Thank you Doc McStuffins!

Thanks to a slight obsession with Doc McStuffins, we got through yesterday's CF Clinic visit with all smiles and no tears!  

Meet "baby."  
E was giving "baby" a check up while the doctors, nurses, respiratory therapist and dietitian were giving her a check up.  They checked "baby's" temperature, then E's temperature.  "Baby" opened her mouth to get a throat swab, then E opened her mouth to get a throat swab.  
Genius.
Let's hope it works again next time when we do labs and x-ray.

She hasn't had a cough since the beginning of February and even managed to stay healthy when I had bronchitis last week (thanks to Grandma and Bill for keeping her at their house)!

She is up to almost 26 lbs now and is 32 in tall.  They had to double check her height because she hasn't grown much since her last visit.  This isn't the first time that has happened.  She's just a little shorty!

Overall, great appointment!

Monday, March 10, 2014

Fundraising

Our 2014 fundraising efforts are in full swing!
We have put together our Great Strides team and already have several people spreading the word and raising money.  We are doing a t-shirt fundraiser and selling our 2014 Emery's Angels t-shirts.  We are selling some really cute hand-stamped jewelry, and we are also planning a clay shooting tournament in June!  Lots going on!


Thank you so much to everyone who is working on fundraising and to everyone who has donated.  
You really are Emery's Angels!


Sunday, February 23, 2014

Independence and Enzymes

E has to take pancreatic enzyme supplements, or "enzymes" every time she eats in order for her body to digest food properly.  When she was a baby, we used to open up the capsules and pour the beads out onto a spoonful of applesauce.  She was very good at taking them!  So when she was about 15 months old we decided to try putting the whole capsule in applesauce to see if she would take it.  And she did!  After awhile, she started trying to do it all by herself.  She would put the enzymes in her applesauce pouch, swallow them whole, and then say "I did it!"

video

Well, lately she is becoming a little more opinionated and wants to do things her own way.  She went on an enzyme strike for about 3 days last week.  There was no way to convince her to take her pills.  She would swat them out of my hand, throw them on the floor, and tell me she didn't want them.  It was a rough few days!  I called her CF Clinic to get some advice and the nurse told me to try giving them in something new.  We could put them in ranch, ketchup, yogurt, pudding...basically anything she would eat!  And it turns out, a little more variety is just what she needed.  It also helps if I just set everything down in front of her without saying anything.  She doesn't want us to TELL her to do it!  It has to be her idea.  What toddler wants to be told what to do?  

Monday, December 30, 2013

Clinic 12/12/13

Another wonderfully uneventful clinic visit!

E's weight was excellent.  She's up to 24 lbs now and had gained 2 lbs since the last time she was there.      She had been sick for about a week before the appointment, runny nose and coughing quite a bit, so they went ahead and started her on a 3-week round of Augmentin. Her bacterial cultures just grew normal flora, so nothing new there.  She had a blood draw to check her vitamin D level again but I don't have the results of that yet.  In 3 months we'll go back for what will hopefully be another uneventful visit!

Monday, November 18, 2013

Pulmozyme

E has been on Pulmozyme for 3 months now and I think it is making a huge difference!  Normally, she'll catch a cold or respiratory virus and it will take weeks for her to get over it.  But this last time, at the end of October, she was able to get rid of it faster than ever!

She's doing great!

Sunday, September 22, 2013

Clinic 9/11/13

E had a great clinic visit this week!  This is the first time we've been to clinic since she's started walking so it was a whole new experience for her.  She wanted to check out everything in the room and see how it worked.  We had a pretty long wait once we got into our room so she kept peeking her head out the door and waving to the nurses making sure they didn't forget about us!

She gained some weight since her last visit and is almost 22 lbs now.  I have to say that I'm really happy weight gain hasn't been an issue for us so far.  I hear about so many other kids with CF that struggle with that and I can't even imagine how frustrating that would be.  But every child comes with their own set of struggles.  Out of curiosity, I asked how many rounds of antibiotics E had been on since she was born.  In her short 16 months of life she has had 7 rounds of antibiotics for various reasons and a two-week hospitalization for a pulmonary exacerbation where she received IV antibiotics through a PICC line.

By looking at her, you would never know it.  She is a cute little toddler always following her big sisters around the house.  She copies everything they do and everything they say.  She loves playing outside with sidewalk chalk and swinging or sliding on the play set.  She's a typical one year old...exploring and learning and taking it all in.  Sometimes I even forget she has CF, until I look at the clock and realize it's 8:00 pm and we still have to do her nightly treatments!  We have a pretty good system going right now, but as soon as we get used to a certain routine something changes and we add a new medicine or an extra treatment and we have to figure it out all over again.

Luckily we make a pretty good team!