Wednesday, September 14

Clinic Friday

We will make the trek again to Baltimore for Madeline's CF appointment on Friday. We have been going more frequently the past 9 months because her cultures continue to come back positive for Pseudo. It seems like we are averaging every 6 weeks for  appointments- which is more appointments than I would like for Cystic Fibrosis. Typically Cf patients are seen every 3 months( or 4 times per year). I am hopeful that sometime soon we may be granted a reprieve from our nasty enemy- Pseudo.

To take the edge off of a typical clinic visit, we decided to make this an overnight  trip. We will be staying in a hotel for Friday evening on the harbor in Baltimore. On Saturday we will take Madeline to see The Laurie Berkner Band Live on pier 6. (If you haven't checked them out- click here! I am such a  fan!) We have all 3 Laurie DVD's and itunes songs. Madeline is currently obsessed with watching Laurie's music videos for every. single. treatment. So, I am more than excited to see Madeline's reaction as she realizes Laurie is right in front of her.

The Laurie Berkner Band

  Last trip we visited the national aquarium after Madeline's cf clinic. Jack and I have found that having something to look "forward to"afterwards makes the clinic visits a little easier. Even though Madeline may be too young to understand what "fun" things are coming, it seems that she too is able to relax a little if she has a distraction right after "the ins and outs" of clinic.

It is no joke that cf clinic appointments are mentally and physically exhausting It is quite a process 
speaking to nutritionists, nurses, pharmacists, and then her doctor.  It reminds us that Cystic Fibrosis is a HUGE part of our daughter's life. This appointment isn't too different. It will  involve getting annual blood work done or possible x-rays. Every September I hold my child down while someone tries to find a tiny vein to poke for 4 viles of blood in order to test her vitamin levels. The x-rays can be even more draining. Someone straps your child to a board with velro straps while xrays are taken. It's hard watching your child scream in fear and you can do little to "save them." This is the appointment that I feel as though my child looses trust in me for  just those few minutes. And then suddenly we walk out of there....

...and life resumes as normal. I am thankful that life has been bouncing back lately and, we haven't had any HUGE cf hurdles yet (knock on wood!) There is always something to celebrate the day after clinic- whether it be big or small. We continue to be thankful that Madeline remains "non symptomatic" even though her cultures continue to come back positive for Pseudo.

Again we appreciate all the inquiries and comments about Madeline's health. We couldn't do all of this without our family and friends... Updates later this weekend!

My little "porker" (love ALL the chub!)


  1. I hope everything runs smoothly for you all at clinic.
    The annual ones are the worst and I totally agree, it's all so very draining. We always come away so exhausted. I love your idea of having something fun to do afterwards great plan!

    My goodness how grown up is M now? She's gorgeous and I love love love that Sophie has another pork chop friend. She looks so well, great job you guys :)

    Hope the cultures are clean!

    Take care xxx

  2. She is adorable! Good luck tomorrow!!! Megan


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