Well, just like everyone told me, Emily is getting used to the port accesses, and we are liking it much better! She’s had her port accessed (that means a needle was inserted) a few times since my last post a few weeks ago, and each time seems to go a little easier than the last. It’s not roses and rainbows like the Broviac was, but it is better. The Child Life Specialist at UCD is phenomenal and such a help in keeping Emily somewhat cheerfully distracted while being accessed. And the nurses are so patient. Emily has said over and over that it doesn’t hurt a lot, though it does hurt a little, but it’s mostly scary. So we’re working on making it less scary. One thing we changed is the process of applying her EMLA cream (the numbing cream we put on her skin about an hour before she’s poked). I had been applying the cream and putting a piece of Tagederm (clear medical tape) over it to keep it in place. But she HATES that stuff. Another Cancer Kid Mom gave me the suggestion of using Press ‘n Seal instead. I didn’t think it would work, because I didn’t think it would stick to her skin, but it does! It’s like magic! The stuff sticks just enough to keep the cream in place, but it also peels off super easily and doesn’t hurt Emily’s sensitive skin one bit. Yay!! Yay for the encouragement of other moms going through the same thing. So with the accesses getting easier to bear, and the freedom of being tube-free, I am finally feeling good about our decision to switch from Broviac to Port.
Overall Emily has been doing great. She is healthy and growing well. We had been concerned about her walking -if you remember, she had stopped walking for about four months when first sick, then the Vincristine caused joint pain and neuropothy which caused her to walk funny, then she broke her leg … -but she seems to be walking quite normal now. Her feet still sort of slap the floor a bit awkwardly sometimes, but I think it’s working itself on its own, which means she won’t need physical therapy. She still receives IVIG transfusions each month, and I think that’s the reason she hasn’t been sick this year (besides the recent septic shock episode, but that would have happened regardless of how healthy her immune system was). Actually, all five of our children have been blessedly healthy this year, and we’re praying for more of the same this winter season! One odd thing about this Maintenance stage is that Emily’s hair started to grow in very thick and curly earlier this year. But sometime this summer parts of her head seemed to lose hair. She doesn’t have bald patches, but rather very thin and fuzzy patches. She has long strands of curls on the sides of her head and almost no hair in the back. Which actually works out very well, because she can’t see the back and has no idea! The other day she was preening in front of the mirror, pulling on her freshly washed hair, excitedly remarking that it is now as long as Sophia’s hair. Not quite, but in her mind it’s perfect.