Hello December!

It's December! Which means we are amidst the season of hot cocoa, Christmas decorations, Santa meet and greets and the flurry of shopping for family and friends.

It also means we are amidst flu and cold season, doctor visits, and extra treatments.  Boo.

Sienna had a great checkup this week at clinic.  Here's the quick rundown of what we discussed -

• Growth - doing well, but room for improvement.  She's up to 28 1/2 lbs, which is a little over a pound gain from Sept.  She had a growth spurt in height, and is now around 36 inches.  Overall, this puts her BMI at 20%.  While her team is happy with her growth, we are still encouraged to get her BMI up to 50%.  This is definitely a difficult feat with her lack of eating at mealtime again.  We left clinic with some Ensure Clear and Pediasure as nutrition supplements.  Luckily she loves her juice and shakes!

• Treatment - no changes.  She still does Albuterol through an inhaler w/ chamber followed by her vest and nebulized 7% hypersal twice a day.  Because of a slight cough, her team had us up her treatments to 3x daily this past weekend.  Sienna handled the extra treatments like a champ. Luckily, her cough is gone, so we are back to twice daily.  

• Culture - a weird one: pseudomonas putida.  Apparently this is an environmental bacteria and IS NOT in the same family as the concerning bacteria, pseudomonas aeruginosa, despite it's name.  Since her cough is gone, and it's the first time she's cultured this bacteria, we are not going to treat it.  If symptoms appear or she begins to culture this chronically, we will have to treat with antibiotics. 

• Changes - we are adding 4 ounces of juice to her diet everyday to help "move things along easier".  She's cried/been in pain a few times going to the bathroom lately, so we are hoping the extra sugars soften things up a bit.  If this doesn't work, we may need to start giving her Miralax daily.  I'm not a fan of adding Miralax in as a long term treatment, so I'm really hoping the juice helps her out.  Constipation is a lesser talked about issue for those battling CF, but unfortunately extremely common.  

• Procedure - To keep the spread of infection minimized, the CFF has guidelines around CF clinics.  Patients have to be masked if waiting in a communal space, or need to be brought back immediately to a room.  I had emailed Vogmask asking if they had samples, and they graciously sent me a small mask to try out.  We tried getting Sienna to wear the mask when we traveled in October, but she refused.  For clinic, it's non negotiable, so we brought along a toy for her and told her if she wore her mask while we waited, she could have the toy when we got back to the room.  This worked beautifully, and she happily wore her mask the 5 - 10 minutes we were out in the waiting area as she drew pictures.  

Vogmask & Playing Doctor

In other news, Tess is just getting over an ear infection.  It's kind of ironic how our "healthy" child is on antibiotics already at 5 months old, when our "sick" child has yet to need them (sidenote - this will be the last time I ever use the "healthy" and "sick" label).  Our once good sleeper, started waking frequently at night and was harder to settle.  I chalked it up to teething, as she's gumming everything under the sun and drooling enough to fill a small pool, but that wasn't the cause.  There were no obvious signs like pulling at her ear, or crying when put down, but we brought her to the Pediatrician last week "to rule out her having an ear infection."  Honestly, the only reason we thought it could even be a possibility was due to her turning her head back and forth when sleeping and having trouble drinking bottles/nursing.  So we brought her in, and sure enough the ear infection was ruled in instead of out.  She's just finished up her Amoxicillin and (we are all) doing a little better.  Unfortunately due to the ear infection, she's regressed a bit with sleep and bottle feeds, so we are working to get back to our normal routine.  

Pediatrician didn't believe this smiley baby was sick!

While we wait, I'll just eat this paper.

Teething stinks.