Wednesday, August 20, 2014

Tough questions

 Normally when Olivia has clinic, she does what they ask and plays during the "in-betweens". She doesn't ask questions or even pay attention when the people come through. July's clinic was different. She was very attentive and inquisitive so after we got home Chris and I talked to Olivia about what everything meant. She seemed happy with what we told her and she didn't have any further questions. 

week and a half ago, Olivia asked how she got CF. It caught me COMPLETELY off guard so I proceeded to draw a Punnett Square and explain dominant and recessive genes. The whooshing sound of my explanation going over her head was almost audible. A few days later, she asked me again and I explained it in more understandable terms.

Last night, while we were doing treatment, she asked me "Mommy, how long am I gonna have CF? I'm sick of having it." I asked Chris to come up so we could all talk about it as a family. She was crying because she's sick of treatment and taking pills. We discussed drugs in the pipeline and told her we just have to stay as healthy as possible until they get here. She was upset that the medicines aren't available for her yet and doesn't want to wait anymore. We told her if we could take CF from her and put it in us, we would in a second. We all cried together. It was a hard thing to talk about. 

Tonight, we sat down and read her Mallory's 65 Roses to help her understand. It helped and she told us on each page the ways that she and Mallory are alike. 

I knew the day would come that she would start asking questions, but it has come sooner than I expected. 

Thursday, August 14, 2014

July Clinic

At the end of July, Olivia had clinic.  First, here are her stats (April's numbers will be in parentheses):

-Weight is 44.7 lbs (43.3 lbs)
-Height is 46 7/8 inches (46 inches)
-Height/weight ratio 23% (27%)
-O2 Sat 96% (98%)
-FEV1 95% (100%) before Albuterol 102% (103%) after Albuterol
-Sputum culture - NORMAL (YAHOO!!)

So her weight has been issue for a while.  It's not alarming because she is gaining and growing, but she needs to eat more to keep up with the amount of energy she is expending (which is A LOT!).  Her lung function has decreased some.  When listening to her they could hear popping and crackling.  She had a CT scan done in April which showed a lot of mucous and her lower left lobe looks blocked by a plug (which matches what they could hear with the stethoscope).  Her PFT showed improvement in the small airways again after receiving Albuterol.  They have been trying to decide over the last few clinics if she has asthma and they've finally concluded that she does.  We started an allergy inhaler, but I haven't really noticed a difference yet.  Her CT scan also showed minimal bronchiectasis.  It was the normal amount for a CF'er Olivia's age, but still upsetting to hear.  I want her to be the exceptional miracle case, but  I know this is the same for all CF parents.

We have a new genetic counselor, dietician and said goodbye to Mary Lester (Respiratory Therapist Extraordinaire).  She moved to California and we wish her well, but will miss her dearly.  So now it's basically like a whole new clinic (sigh).

Here are a few pictures I snapped that day...

Standard cutie picture

 Mary made Olivia's gown into an 80's dress.
 My girls snuggling after clinic.