Have I mentioned our girl is growing? This time last year, Josephine was still in ICU and still weighing in at under 10 pounds. As of her Immunology appointment last week, she has grown to nearly 23 pounds, and more impressively, just an inch or two shy of three feet tall! Healthwise, she's doing well. Confident with her progress, her doctors have reduced the frequency of her clinic visits. Every week...to every two weeks...to every month...to every three months...and now once every SIX months! Her next official (or more accurately, "scheduled") procedure will be a cardiac cath next August. Dr. Ikemba and Dr. Nugent have even cautiously predicted that, due to her abnormally high oxygen saturation levels, Josephine may NOT have to undergo the Fontain surgery when she turns 3. What an enormous blessing that would be!
Developmentally, Josephine has made big strides in the past several months. When I last wrote, she was mock crawling. Her chosen mode of transport these days - when not hitching a ride with Mommy or Daddy or coasting about in style on her elephant cruiser - is speed crawling. (She has gotten quite good at it and will drop down and take off crawling whenever the urge hits...which is quite frequently!) She's still using furniture for walking support, but has also taken to horizontally "scaling" walls, Spiderman-style. Climbing stairs is also quickly becoming a favorite. (We call it "climbing Mount Doom"...and just like the greatest mountaineers, she always does it without supplemental oxygen. :))
Although she has made exceptional progress from a feeding standpoint, we're still about 8 oz. short per day from pulling her ng tube. (On a normal day, Josephine needs about 28 oz. of puree and formula. If she takes any less, she not only runs the risk of losing weight, she also could become dehydrated. Very bad for a cardiac kid!) Today, we'll be starting an inpatient stay at Our Children's House, a small, specialized hospital that serves kids with feeding challenges. Over the next 4 weeks, Josephine will receive intensive PT, OT and speech/feeding therapies, with the ultimate goal of increasing her oral intake to a point that we can officially, once and for all BE TUBE-FREE! While none of us are exactly thrilled at the prospect of spending another Christmas in the hospital, we have every confidence that this ninja-princess will continue to be a total rockstar when it comes to reaching her treatment goals. Come New Year's, she'll be a walking, talking, eating machine. (And Mommy and Daddy will be in REAL trouble then!)
We'd appreciate prayers and positive thoughts specifically for:
1. An expeditious, productive stay at OCH...we wanna be tube-free!
2. Extra measures of sanity for Mommy and Daddy as we re-adjust to hospital life.
3. Understanding from our employers, who have been extremely supportive up to this point.
4. Honesty, empathy and compassion from our medical insurance carriers. (We have had quite a fight!)
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