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!

Sunday, August 18, 2013

Moraxella

We got the results of the bronchoscopy.  It showed that she had cultured a type of bacteria called moraxella, so we started treating it with an antibiotic (Suprax).  Moraxella isn't one of the scary ones in CF that cause a lot of problems, thank goodness.

She started Pulmozyme on Monday to help break up the thick mucus and at first she wasn't sure about this whole nebulizer thing, but the last few times we did it she decided to stop fighting us.  So that's progress!

She isn't coughing or wheezing anymore and is back to her happy little self again!

She has clinic on the 11th so I'll update again then!

Monday, August 5, 2013

Bronchoscopy

E had her bronch this morning and did so well.  She was super sweet and snugly afterwards as she was coming out of anesthesia.  

When he was finished, Dr. R came out and told us he saw a lot of thick mucus secretions in her lower airways.  It was more than he expected to see in someone her age.  While having thick and sticky mucus in the airways is a common CF problem, it is not common to have this much so soon.  So he suggested increasing her CPT and starting Pulmozyme .  The Pulmozyme is an inhaled medication that will help break up and thin the mucus, making it easier for her to get rid of.  So our new daily routine will consist of 3 vest treatments,1 neb treatment of Pulmozyme, and albuterol 1-2 times a day.  I'm going to have to get very creative to keep this kid still long enough to get it all done!  Too bad she doesn't like to watch TV yet.

I have mixed emotions after this morning.  I wasn't really expecting to hear that there was anything abnormal going on.  I figured he would get a sample, send it off to the lab and then tell us in a few days that there's nothing growing in her lungs and I need to quit overreacting to every little cough she has!  

I'm a worrier.  I can't help it.  And I never know if my worrying is warranted or if I'm just a crazy overprotective mom who needs to chill out and let her kid cough in peace!  But apparently this time it was good to be the crazy overprotective mom that calls the CF clinic way too much and asks a million questions.  Because we found out something with the bronchoscopy that we wouldn't have otherwise known.  Normally our clinic doesn't start Pulmozyme until 2 years old.  So now that we know she needs it, she can start it early and hopefully start feeling better.

We'll find out later this week if there is any bacteria in there that needs to be treated.  

Sunday, August 4, 2013

Figuring Out The Inhaler

We recently added an albuterol inhaler into the mix.  If only she was this happy when we were actually using it!


So far, she's not a fan.  But I'm hoping it will get easier the more we do it.  I do think it has helped with her wheezing, though!