(For June 3) weight check = 10 lbs. 10 oz.
height = 22.87"
Today's pictures are of Lilly riding home from her doctor appointments last Friday.
First Lilly saw the surgeon's nurse to have her g-tube checked. Everything looked good though she had some granulation tissue around it. (This is raised, red tissue around the hole where the tube goes into her stomach.) They said this happens because the stomach tries to heal itself shut. It doesn't happen to everyone with a g-tube though. They gave us some things to dry up the tissue. (I've been applying it once a day and the granulation is just about gone.) Apparently some people will get the granulation frequently, while others only once, if at all. We're to go back in September for them to put a new g-tube in. (We'll eventually learn how to put new ones in ourselves.)
Next Lilly saw her pulmonologist. She said Lilly is doing just great. She was so pleased with how Lilly looked and acted and almost couldn't believe it. She shared that when we saw her a couple months ago she was very, very concerned about Lilly and though we were "in for it." We're to see her again in September.Finally we saw a pediatric dietitian. She said not to adjust Lilly's feeds right now (keep it continuous) until she had gained more of the weight she lost at her last hospitalization back. Our goal is for Lilly to gain a half ounce a day. (Though to take weight gain in consideration over a 7 day period.) She said Lilly's height and weight is in excellent proportion.
After those three appointments, we came home and Lilly had an hour session with her physical therapist. Lilly's physical movements are rapidly improving with each therapy session she has! And then her "case worker" came to go over some new paperwork with us.
Then after those five appointments we went to Lilly's big sister's Keepers at Home annual awards banquet. It was a very full day.
Tomorrow Lilly sees her cardiologist. We hope to come to a better conclusion of what to do about pursuing heart surgery (VSD closure) now or to wait awhile.
"The Lord is good to all; he has compassion on all he has made. - Psalm 145:9
lilly,
ReplyDeletelove those pictures of you! and your hair is getting so long....
love,
mah mah
Just look at those chubby cheeks!
ReplyDeleteChanging the g-tube is nothing...you'll do it in a snap. Just don't pull my stunt, it really is the only time I got nervous with Faith. I accidentally yanked her g-tube out when taking her out of the car seat. I usually don't get nervous when things like this happen, but I went into panic mode and Jesi was the calm one. It ended up not being that big of a deal, and we easily put in a new g-tube button. You'll do just fine. Oh, Jesi is impressed with your appointment schedule...just the thought makes her want to hide in a dark corner.
ReplyDeletePoor little tummy! Should I spank the G- tube so you can close up? ;-D
ReplyDeleteI love those little miss firecracker pictures! - Too cute! Love the dress!
<3,
T.
So fantastic to hear about her growing up and being well. I think Lilly has a very special place in The Lords heart (in mine too:-).
ReplyDeleteWow! Your day makes me tired just reading it! My prayers are with you dear friend!
ReplyDelete