CF update

I promise my next post will be before/after pictures of our backyard. I’d have to clean up all the toys that are already littering it before I take the after pictures. I’ll do that this afternoon. For now, I thought I’d give a brief update on Ben, CF wise.

We are almost at the end of our first week of our second straight month of Cayston to clear up the pseudomonas growing in his lungs. This was my originally thinking of what I had wanted to do and Dr. N agreed. When the month is up, we will finally reculture Ben. If Ben still has pseudo growing we will switch it up again and go from one month of Cayston to another month of Tobi, switching months so he is always on an inhaled antibiotic. This is not the “official” plan but Dr. N is letting me do whatever I think is best at this point. I think most parents (and CF docs) would have given up by now and accepted the fact that pseudo is in their CFers lungs for good and hope it eventually goes away. Most patients start Tobi on/off for months until/if it clears up. Dr. N and our nurse practitioner have reassured me that it’s not the end of the world if we can’t eradicate it. However, I am not giving up. I refuse to accept the fact that we can’t get rid of it. While I’m not ready to jump back into IV’s, I am not going to stop trying different inhaled meds until it’s gone. Mark my words.

As I predicted, UCSF wants to do redo Ben’s blood results due to the fact that they were so outta whack when he was sick. Holding Ben down while he gets blood drawn is not something I’d put on my list of fun things to do but Ben handled it like a champ last time and the highlight of my day was watching him bypass the monster truck stickers for a Hello Kitty one at the end.

He has gained back all the weight he lost when he was sick. The chubby cheeks and thighs are back!

Tomorrow night is the CF education night held by UCSF in Walnut Creek. Dr. N is going to speak about any new advances in CF land and address any questions we have. I am excited to meet other CF parents that go to UCSF. Since we don’t live in the area, I haven’t gotten a chance to meet anyone. My mom is driving up to meet me for the evening. I am so thankful to have a mom who takes an active role in knowing more about CF and Ben’s care. It makes things a lot easier for me and I appreciate her making the drive. Thanks Mom.

I had to include this picture of Ben using his bubble making Mater as a seat.

Excuse the mismatched outfit. This was after he threw up everywhere and I just threw whatever I could find on him.

You may have noticed that I am now watermarking my pictures. Let’s be honest, there are some crazy people out there and I don’t want random people taking my photos and doing lord-knows-what with them. I’ll try not to plaster it across our faces but it needs to be in the center of pictures or people can just cut and paste around it.