Actually, we’ve had a tooth for a couple weeks now, but the little bugger sticks out his tongue every time I try to show someone. While taking a selfie to send to Daddy at work, Jacob smiled so big that we actually caught the tooth on camera! Look closely – do you see it?
In this story, Lauren Morales shares her experience living with OTC deficiency, which is in the same family of illnesses as citrullinemia. Stories like this are so encouraging for me and I’m sure for other parents of UCD kiddos.
I wonder how this little guy will tell his story when he is grown?
Today’s Rare Highlight post comes from Anne, the mom of a little boy with the rare disease Atypical HUS. Atypical HUS is an extremely rare genetic disorder that often causes kidney failure, among other complications. Like so many parents of rare children, this mom is handling her son’s medical journey with such grace.
Anne describes the feeling of sitting and waiting so beautifully. If you know me at all, you know that sitting is not my strength. Waiting even less so. Part of being a parent, though, rare or otherwise, is to learn to do difficult things for our babies.
Read her post here: http://sassyhaven.blogspot.com/2015/09/learning-to-sit.html
(Almost) everyone is feeling better in the Craft household, and Jacob is back to his antics of getting into things, practicing standing up, and generally making everyone around him happy.
He has a bottom tooth now, but you’d never know it because the kid is always licking things. Yes, in the third picture he is licking my face, and I would be lying if I told you it was the first time.
I am tired. Jacob came down with a cold? stomach virus? and after three episodes of vomiting we were forced to take him to Tampa General for labs and IV fluids. By now we know to ask for the vascular access team, so the blood draw was no more upsetting to him than having his temperature taken (which, to be fair, upsets him quite a bit). Happily ammonia was 37 and we needed to stay only a few hours to get him rehydrated. Of course the little bugger took two bottles like a champ without vomiting in the hospital, and vomited the entire contents of the bottle we offered him when we got home. I was scared that he would get worse in the night, so I slept on the floor in his nursery so I would hear every toss and turn.
Today he is better. And I am tired. Of all of it.
I just want to cuddle my baby when he’s sick, not take him to the hospital to force fluids in him.
Because if you think I’m tough, I’ve been fooling you. Jacob is tougher than I am. This is him at the hospital yesterday (less than an hour after vomiting up an entire bottle on his dad, the rocking chair, and the nursery floor).
Look at that smile. Like nothing is wrong in the world. Thank God for that smile. Thank God for my husband, who is strong when I’m not. Thank God for Jacob’s grandparents, who rushed over the moment we called to pack up my half-prepared lunch and hold Jacob while we cleaned up the nursery and packed for the hospital. Thank God for Jacob’s grandparents who live miles away and offered prayers and support from afar. I couldn’t do this alone.