Sorry I haven’t been blogging much lately. There just hasn’t been much going on here. Also, I’ve been too busy knitting. All day every day KNITTING. It’s the only thing that keeps me sane.
(But that’s another post.)
We don’t have an exact discharge date yet, but sometime this week we should be going home. (I should be squealing with excitement but somehow all this time sitting around in a hospital room kind of dulls your emotions.) We’re just waiting on some blood work to see how his cell counts are doing, but the last time we checked they were trending in the right direction.
Felix’s white blood cells are still very low, so he’ll remain in isolation at home for a few months as he is still very vulnerable to infection. Lydia will probably continue to live with grandparents for a while longer. (She’s so used to it by now, after eight months, she doesn’t even think anything of it — she refers to our home as “Mommy and Daddy’s house.” For now, Grandma’s house is “home.”)
We’ll continue to drive up to the hospital once a week for checkups and to have the dressing on Felix’s central line changed.
Speaking of which . . . Felix will remain on continuous IV meds for the next several months to keep his CMV counts in check. (I’m happy to report that they have remained “below the level of detection” since before gene therapy. If you will recall, CMV is a virus you have in your body the rest of your life once you have it, and only causes problems for severely immune-suppressed people.) His really vulnerable period is still ahead — generally around 3-4 months post-transplant — but hopefully with the support of the right meds he will beat it. We’re so excited to go back to using a portable IV pump in a bag rather than the doggone IV pole we’ve had to use here. Felix has been tethered to that one corner of the room for over four weeks already. It sucks.
Felix has been great this whole month, though. He’s still such a happy, sociable, energetic baby. He kind of quit gaining weight about a month ago, which is only slightly concerning. We’re just so happy he’s doing all of his eating orally. He also STILL can’t sit up on his own, at eight-and-a-half months, but he’s getting close. He loves his Exersaucer to death. He’s super-cuddly which is, in my opinion, his best quality. He’s got two adorably goofy teeth and he’s working on some more.
We are so thrilled to be taking our baby home. We’re dreaming of a life where our whole family can live together under the same roof again. And someday Lydia will have her little brother.