I haven't blogged in awhile because, a) I figure I should put "shower" first on the list and b) I have grasshopper brain (i.e. no concise thoughts, jumping from one line of thought to the next). But, because this keeps you thinking of us and I am shameless in asking for your prayers...here is the latest:
Lilah is doing great. Really great. She's happy, making more of her noises, reaching for toys, laughing (silently), and gaining weight! We've had several minor "issues" with her since returning from the hospital, most of which are resolved. Her feeding tube has been infected, leaks a bit, and definitely requires some patience and practice. The biggest concern for me right now is her sleep.....she's had to sleep on her back since her surgery and she wakes up anywhere from 5-10+ times a night for her paci. I have worked like McGuiver the last few days, cutting into massive pieces of foam with a butcher knife, and have finally gotten a somewhat usable system to accommodate her tube so that she can sleep on her stomach without waking up 6 million times and night and driving me to the insane asylum....(sleep deprivation makes me unable to puncuate:).
The state of the union around here is crazy. Paul has taken a new job (I maybe will just let him explain it sometime) and is very busy with training for the next several weeks. Our insurance denied a nurse (boo!), but we've found a very competent nursing student to help on a somewhat regular basis. Still running to at least 1 or 2 doctors a week and getting Lilah's therapy started soon. And, all the other little things that go along with a house and kids, but seem totally overwhelming to me because all my spare hours are spent. I think I say this every time, but I am feeling totally overwhelmed most days. It seems like the immediate crises are leveling off, so I'm trying to adjust our family to this new normal. Caring for Lilah and all that involves could really keep someone busy around the clock. I am quickly figuring out for the sake of the "common good" and my own sanity, not everything can get done perfectly (or at all for that matter). Trying to find the balance....and wishing there were more hours in the day and 2 of me:).
this is Garrett "going to the hospital". he takes his "monk", my purse, my coat and says "monk sick, we going hopital". he walks around the house, and returns saying "monk all better". this is not my favorite pretend play scenario:(