Home for Christmas!

Breathing treatment with Mommy.
Making room decor with Aunt Jenn.
All dressed up and ready to go.
Thumbs up for going home!

Dr. McKean came into Elena's hospital room and asked her, "Do you want to go home?" to which she replied, "no". His response, "Never heard that before."

However, once she was home, she was very happy to be there. She was all smiles in her own bed surrounded by her favorite stuffed animals. She was welcomed with hugs from her siblings. We all slept well that first night reunited!

Elena's final diagnosis was Pneumonia and Staph infection in her lungs. Both of these could be treated at home once we got her stable. She has been doing great! She take her meds like a pro and she is doing her new vest routine without complaint (most of the time.)

We thought her weight might plummet from being so ill and dining on hospital food, but that was not the case. She maintained and told me that she preferred the hospital food to my cooking! So, we have been trying to replicate the hospital meals at home and she is actually eating better. Who knew?

Thanks for the prayers, visits, food, and loads and loads of help. We are so thankful for our community of friends and family.

I could not have made it through the nights and days without my Sister Jenn, my "adopted sister" Andrea, and my Great Aunt Cindy who stayed with me for many hours away from their own family to help hold me up. Also, the many visitors at the hospital, My parents, my father-in-law, Elena's pediatrician Dr. Miller ( a dear friend of ours), Samantha (a CF Mom), Aunt Anne,
For those who helped Susie at my house with the kids and the food, thanks Amanda, Becky, Andrea, and Uncle Brian.

Thank you thank you thank you.

A diagnosis...maybe?

We have a possible diagnosis! Looks like Elena has a staph infection in her lungs. This is the best possible scenerio b/c it causes little to no damage on her lungs. We are so grateful for knowing. It will be confirmed tomorrow morning. If the results are positive, then we are going home tomorrow...maybe Saturday. We are cautiously excited.

Still no news

We are still unsure of a diagnosis. However, some tests run this morning show that the antibiotics are not working as well as they had hoped. We won't be leaving today or tomorrow for sure.

Elena was very excited to get out of her room today for some "play time" in the physical therapy room. She rode a bike up and down the halls like a crazy biker chick...it was very funny.

No news...but more smiles

Taking the IV for a walk to get her prize for the day since she completed all her treatments! Doing her breathing treatments like a champ!

Holding her new doggie "cookie" that her Great Aunt Cindy brought her today.

A giant thanks to all those who are praying, all those who have been by with food to the hospital and at our home, all those who have helped us at the hospital...you all know who you are and I am so thankful to have such fabulous friends and family.

Sitting Up and Looking Better!

Elena woke up this morning fever free!



Andrea came last night and helped keep an eye on Elena while I slept. Thanks Andrea!
Jenn came and relieved Andrea this morning and brought coffee and donuts! Mmmmm coffee!
Will let you know when we get a definite diagnosis.

ER and bacterial infection

Julie took Elena to the Children's Hospital at 2am when she spiked a high fever, was breathing quickly, and showed signs of hallucinating. We thought the cause might be food poisoning because Ethan threw up during the same hour, but it appears that was unrelated. After x-rays and bloodwork the current diagnosis is a bacterial infection. Her fever is down now, but the potential CF lung infection is weighing heavy on our hearts. Not sure how long she'll be in hospital. Prayers appreciated.

Change is good...VERY good!

Camping with Daddy....trying to catch a view of the Sunrise with Mommy.

Elena had a follow up appointment today with Dr. McKean. The results of all the changes have been better than we expected!

As many of you know, "Poop" is a popular topic of conversation in our home. When Elena has "sinkers" we all run (including Ethan) to the toilet to have a look and do a celebration dance. Sinkers have been so uncommon for her. Elena has also had yellow stool over the last 5 years, a sign of malabsorbtion. For the first time since birth, Elena has had BROWN sinkers without any excess oil! Not ONLY that but she is pooping far less now than usual. I know this may be TMI for many, but this is WAY exciting news. A sign that the new enzymes and added Nexium are working!!!!!!

The office noted a one pound weight gain. This is also another sign that the enzyme switch is doing it's job.

Other completely awesome news: Elena did PFT's (Pulmonary Function Tests) to see what the status of her lung function is. Dr. McKean explained that the percent average for children her age with CF is 93-94%. Elena's was 116%! Needless to say, the Dr. and I were quite pleased with this fairly uncommon high result for her age at this stage in her life.

Elena has been a different child since the change in her meds. She has more energy (which we didn't think was possible). She is eating on her own without constant poking and prodding from us. She is ASKING for snacks and begging for larger portions!!!!!! Really, we ask...who is this child? It is completely awesome!

I was so stunned with all the good news and positive results that I wasn't sure what to think as I left the Dr. Office. We feel so blessed with good fortune in our lives and this is yet another thing to give abundant thanks to God for!