What a good weekend! John and I actually got a babysitter tonight (for Lyla... Evie always gets to party with us) and had a night out with friends. It was nice to get out for a bit, relax, and catch up. Evie is doing great, we have been so busy it feels like! Today we got to go to a friend's Make-A-Wish kick off party, and I am always in awe of the strength God gives a family to not only persevere but to grow and thrive in the midst of health troubles. It's fun to be around families who have struggled a bit, because it's always the little steps forward that are so joyful... something we miss out on sometimes with "normal" kids.
Speaking of little steps, as I mentioned before Evie is sitting up, now for minutes at a time! I still don't have a picture, I am waiting for a good one, which I think may be impossible to capture because I get so excited the picture never captures my excitement (: Hopefully soon I will capture one that is great enough to post! She is also blowing kisses. The really fun thing is that I'll say "Evie, blow kisses to daddy" and she turns to John and blows kisses without me showing her how, or pointing to John.... so she is identifying people, and following instructions without having to be shown. That shows big physical and cognitive growth! Go Eve!
And for a few prayer requests.... we see the pulmonologist this Wednesday, and I am going to BEG to try to wean Evie off of oxygen again. Most of the kids in her clinical trial were on O2 for 4 or 5 months, and we are two months shy of a year, so I'm a little weary of carrying tanks around. I'll probably have to start eating fewer calories when I don't have the extra weight to carry around, but it will be well worth it! (: From what I've heard they have allowed other kids to wean when they are sat-ing around 93-95 consistently, and Evie has leveled out right around there. She was improving and improving, and the past few months she has stayed the same. I feel like this is a sign that she has improved with assistance as much as she's going to, and we need to let her body try on it's own... but I'm not a pulmonologist, so we'll see what the expert has to say (:
ALSO, I got an email last June from a mom, who also received a lethal diagnosis for her unborn daughter of OI type 2 and decided to continue her pregnancy. She was given the same options (by the same doctor in California as us... coincidence, I think not!) as we were, terminate the pregnancy, or donate the baby to science when she passed away (pretty cold hearted... and heartbreaking). Regardless, precious baby girl Zoe has made it to term (HOORAY!) and Chelsea is having her c-section tomorrow. Will you join me in praying for Chelsea, her husband Curtis, and their new baby Zoe? From experience I would say to pray for complete healing, peace, joy in the midst of nervousness, safety for Zoe, and TIME. A lifetime of time.
Thanks friends! I love you so much, and love sharing our little achievements with you (: It blows my mind to know that there are some of you that I will never meet on this side of heaven, but we'll have an eternity to get to know each other. How awesome is that (: