Papa and Drew - Finally got those glasses!
The last few days have been so wonderful! Sure, Drew is still far from normal, and as I keep saying, is more work than a newborn but I will take it! He's HOME! It's so good to be in our own environment, able to go for walks, eat at home, sit out on the deck, get nibbled on by mosquitos,and to listen to the fans trying to cool the house and the sounds of city living rather than the sounds of a hospital room. Drew seems quite content these days, usually only crying when he has to take one of the nine medicines he has to take, or when he is bothered by a stronger seizure. He is doing pretty well from that standpoint I guess - he is not having "constant" seizures for the last couple days. He goes for periods of time where he might not have any, or will have them only very faintly in his left arm, but we seem to have traded those for some that are quite strong and that render him very weak afterwards. In spite of weakness that makes him a lot like carrying an 18 pound newborn he is still trying to get to toys and objects around him (usually those out of reach, like pictures on the wall, glasses or earrings, and anything his brother has).
The main project lately has been trying to convince him that eating is good... and that gaining weight would be even better. Any ideas on how to get an 11 month old to open his mouth for food willingly??? We have tried making him laugh and stuffing food in to plying him with toys he likes to chew on to sneak bites in around, as well as trying to give him any food we think he might like, but he must be thinking that this is the ONE area HE can control and he wants to show us just how strong he really is (he wins by a long stretch!). We had him in to the pediatrician Friday to check out a possible infection (no news on that yet) and we weighed him while there - he was 8.57 kg with clothes and diaper on (18.14 lbs for those needing a calculator to get that one). That means he is not moving on an upward curve right now... he's burning too many calories in a day to keep up with the intake (which is nonstop milk - again likening him to a heavy newborn!). Anyway, we sat him down in the baby throne at the table again tonight to try once more and after many unsuccessful attempts Mommy walked by eating a cookie and he got more animated than he had been all day. He gained himself a chocolate chip cookie with this display and when all was said and done there were only crumbs left! Can one survive on cookies alone? Maybe I can sneak things into his cookies??? Of course, there's a pretty strong chance given his history, that he won't like them tomorrow though so I guess I'll have to wait and see. Predictability is highly overrated these days.
Prayers for the week:
Drew has a liver biopsy and lumbar puncture Friday.
Pray Drew will start eating willingly and that Mom can figure out how to help him do so!
Pray Drew will recover some of his strength and use of his left side this week.
Thank you so much - we covet each prayer!