Thursday, February 2


Relief is what we are all feeling...

The PICC line is gone. No more IVs!

We went in for a post follow up check up today at clinic. Madeline got some great one on one attention with one of the CF "Child Life" Specialist. She spent a long time with Madeline by playing with bubbles, decorating a fabric doll with markers(to look like Madeline) ,dressing her in a yellow gown, and pretending to play princess "dress up" with yellow hospital gown. Child life specialist are used to ease children's fear of procedures and doctors appt. Madeline really dreaded the yellow (isolation) hospital gown that the medical staff had to wear while she was inpatient. She was so fearful of anyone that would wear them- even her parents. The child life specialist stayed in the exam room for nearly 2 hours as Madeline was examined by her doctor and also helped distract her while the nurse was able to take out her PICC (iv line).

Making a face on her new doll at CF Clinic with one of the child life specialist

It was great to see Madeline so comfortable in a doctor's office. After being inpatient at the hospital, she had become so fearful of medical staff. It was a great comfort for all of us to see her happy during those 2 long hours.

Overall CF clinic went well and Madeline's lungs sounded clear. We were able to look at her last xray  of her that was done in the hospital and discuss what the plan may be if this culture comes back "positive." Madeline had gained a good amount of weight since her hospital admission. She weighed in at a whopping 35.7 pounds and increased her BMI to 81%. This was great news! (Since she had lost weight in the hospital and gained that it back and more!) We are very happy with our little chubs!

We were also reminded today of how fortunate we are to have one of the leading CF clinic overseeing Madeline cf care. We are so grateful to have Madeline attend Hopkins...the whole CF team made this visit as smooth as  possible for Madeline and ourselves. They go to great strides to make us all feel comfortable...and we understand how great that really is.

Leaving happy (with no PICC line) with her new doll...

As of now, we all feel relieved that we are free of staying up till 1am to administer 2 ivs during the night and enjoying the idea that life will return to what we remember as "good." Madeline has already realized that she is "free woman" and free of any lines restricting her from jumping on couches and playing rough. She is happy and it is an unbelievable feeling to see her so happy.....

Hoping for GOOD news on Monday.....


  1. Yaaay! I really hope this culture comes back clean.
    I love the doll with the yellow 'princess' gown. What an awesome idea.

  2. I can't believe how big she is getting!!!


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