Summer Happenings & September Appointments

As you can imagine, finding downtime to write has become tougher and tougher with busy summer days and an active toddler!  We've had several big events come and go since May... our first Great Strides walk, Si's first birthday, two vacations, selling/buying a house - you get the picture :).

So, our little girl is ONE! (Well, 15 months by the time I've gotten around to post).  We had a great birthday party with friends and family in June where Sienna was spoiled with kisses and presents.  Thank you to everyone who was able to celebrate with us!

Party decorations

Ice cream bar and cupcakes

Birthday girl!

Checking on her guests outside

Loving her cupcake!

Birthday cupcake

Happy birthday to the sweetest little girl!

Testing out her new wagon with puppy brother

The day following her birthday party, we had a local photographer come by the house to take a few photos of our family.  Some of my favorite photos are below, but you can check out Ashley's website for more.

Ashley Danielle Photography

Ashley Danielle Photography 

The week following Si's party, we drove to Myrtle Beach, SC for a short family vacation.  There is nothing better than the beach for a CFer!  One day we hope to own a beach home so we can get away frequently for trips.  I've posted about our trip to MB as well as our recent trip to Boston here.

We also made the decision to sell our home in SC, and buy a new home in NC.  This was quite the exhaustive process!  The whole conversation started when my company moved office locations considerably far from our home.  My commute went from 15 minutes to 45  - 90 minutes depending on the day and traffic.  The commute stressed me out.  I had to leave for work before Joe or Sienna were up and I was far from Si's daycare.  This plus a few other reasons gave us motivation to "just look" at new construction north of the city.  Our "just looking" in May turned into an offer on a new construction home in June.

We have now settled into our new home and while it's a big change, it was definitely the right decision for our family.  We've 1) cut my commute to 10  minutes, 2) enrolled Sienna in a preschool we LOVE and feel confident she'll stay healthy at, 3) cleared debt and financially secured ourselves and 4) purchased a new, clean home.  Visitors are welcome!

I did manage to post about Si's July clinic appointment, so I'll update everyone on her September appointments.  With our move, came new doctors; specifically a new Pulmonologist and Pediatrician.  Si's Nutritionist, Social Worker and RN haven't changed, since they all rotate between the local Charlotte clinic locations.  Our experience at the new clinic office didn't start out on a great note.  This summer, the CFF released an update to the infection control guidelines, found here.  Our team summarized some of the big points:

• ​ALL patients must wear a mask while in the waiting room or be taken back to the exam room immediately (front desk staff will provide the masks). Effective 9/5/2014.
• All staff must gown and glove during triage and while in the exam room. ​Effective 9/5/2014
• CF Siblings should NOT perform PFT, nebulizer treatments or airway clearance (Vest or flutter) in the same room--including at home.
• Do NOT disinfect nebulizers with vinegar, bleach solutions, or benkalkonium chloride
• Sterile water should be used for all nasal rinses (Neil med)
• Patients should limit gardening and mowing activities
• Patients should avoid hot tubs. Properly treated pool water is fine
• CF patients should allow for 6 feet distance between each other

I'm calling these out because I had to specifically ask for a mask for Sienna, or to be brought back to a room.  We still ended up waiting in the general area for 5 - 10 minutes mask free before we were brought to her room...where we waited another 30 minutes.  When her RN came in, there was no gown or gloves.  When I asked about them, we were told "the lady who has them isn't in the office today." Nice.

While I was disappointed to see our clinic's lack of commitment to the new guidelines, I will call out that their current scheduling protocol gives me comfort in eliminating cross infection.  Our clinic locations will only schedule CF patients into specific time slots - roughly 9am, 1pm and 3pm.  This prevents two people with CF from being in the office at the same time.  The rooms are completely sanitized between appointments to prevent the spread of bacteria between patients.  Not all clinics are run this way.  I've heard from other moms that they go to clinic and the waiting area is filled with CF patients - THIS is where the guidelines really have to come into play.  Other accredited locations are in hospitals, where germs and sick individuals are everywhere.  So really... we don't have it that bad, and I need to pick the battles worth fighting.

Sienna had another good visit - weighing in a little over 21 pounds and measuring 29.5 inches.  I talked to the Pulmonologist about her treatment plan and whether our once a day CPT was enough at this point.  He felt it was still the appropriate plan for her, so no treatment changes at this time.

Some lite reading while she waits

Watching for cars

We have now had our vest for almost 4 months and it has made CPT so much easier!  We let Sienna watch tv during vest time, as it's the only thing that will keep her sitting for that long, and it's something she doesn't get to do often.  She loves Mickey Mouse Clubhouse and Sofia the First so much that know she goes and gets her vest out just to watch them.  The other morning we even added in a 10 minute morning session because she really wanted her vest and tv time.  She even sat by herself on the floor so I could continue getting us ready for work/school!

Vest time

Si also had a great checkup with her new Pediatrician.  He said she looked and sounded great and asked a ton of questions about her background and how we got to where we were.  I really liked the personal attention and interest she got with this new doctor and feel good about this new practice (which is a relief, as we loved her last pediatrician as well!).  Our timing of her wellness check worked out so Si was also able to get her flu vaccination - very important going into the winter months! She's now ready to take on her first winter in preschool and we are confident that her treatments and wonderful school will help keep her healthy.  Her school is incredibly sanitary, teaches good hand-washing habits at an early age, and are great at keeping us informed about their practices and health risks.  We are lucky to have her enrolled there!

Lengthy post, but hopefully that catches everyone up on our recent months.  Thanks to all that keep Sienna in their thoughts and prayers.  We certainly have a tough little girl on our hands!

Playtime in her pool

Happy girl

Always eating

The face that melts my heart