CF & Liver Clinic Updates Jan 2010

We started the morning off with the Liver Clinic @ Shands.  Ayla's Dr. is so good with her, she is the best little patient ever!

This was the first appointment in years where I haven't complained about some sort of tummy issue, the Dr. pointed that out to me! I hadn't realized until he told me, what great news!!
Her labs from the previous visit were running along the same lines of "almost normal" and for someone with Billiary Attresia that's normal and good.
We then went on to talk about something that's always looming over me...Liver transplant.  Her Dr. said that you never know based on a child at this age if they will need a transplant in their lives.  You can't judge based on how well she's doing now.  He could say he was a 100% sure she would NOT need one in 5 years, and he could say with CERTAINTY that she would NOT need one in 10.
He then went on to say those patients with B.A. who don't ever need one, often have blood work and files similar to Ayla's.  He also told me that the older a person is the better for transplant ( i didn't know that). All we can do is pray!  He also didn't need to draw labs so this made Ayla super happy!

We went to Cracker Barrel for lunch...the most fattening place around for Ayla...to kill some time...

We then had CF clinic ....they were so happy about her weight.  She had put on about a pound and a quarter since mid October! And went from 50th percentile (where she's been for years) to 53rd!! They listened to her and she sounded great! She practiced her PFT's and did great with those.  Then came the dreaded Culture....wow.....with age this is just getting worse!! It took 2 nurses and my mom and I to hold Ayla down...I absolutely hated it!! I will be so glad when she can bring up phlegm (?) on her own!
She smashed her finger in the door and screamed bloody murder throughout the clinic.  We had Dr's running in to tend to her little finger...so cute...My child never forgets ANYTHING like her mother and told her Dr she wanted to go to the "treasure box" and the sweet Dr let her have 2 toys since she had such a traumatic day!

We drove home and Ayla slept...It was a stormy day....but the appointments were uneventful....and for us...that is BEST!!

Thanks for keeping Ayla in your prayers...she is really thriving!!