Free, free, in so many ways free!!

At 2pm we got sprung from the "spa". Nurse Sharon had everything running smoothly and early so we got out of there. THANKS SHARON! So we are free from the "spa" and we are tube free. No more boob tubes!! Brooke has had these since she was 6 weeks old. Hopefully when everything heals up she can go in the tub, maybe even a pool someday! She has her feeding button and then her new port, which is under the skin. No one will ever know :)
Last night was rough! She didn't sleep hardly at all. She was uncomfortable but being the trooper she is, she didn't really cry, just whined and tossed and turned. This morning they got her Tylenol with codeine. She likes that! She was breathing a little fast, but that seems to be from pain. Her chest xray was normal. "Help me mama"The other good news.....her STR (about of Megan's cells) are up to 85% up from 69%. Great news! They want it higher than 70%. Things are heading in the right direction.

They also started her on oral anti fungals. That means NO MORE IV'S AT HOME!!!! Only her weekly IVIG. We now have an empty fridge that we got rid of all those meds. And tomorrow I can decrease our IV medical supplies. Holy cow batman!!!!

The one thing I do wonder is, how did we do it last year? After 48 hours, Steve and I are beat! Did we age that much in a year? I think so. But we continually thank all of you for help and continued prayers. God carries us, when we can't function anymore. While we were up there we got to visit with another family that their son has SCIDS. He is post transplant and hopefully will be heading home in the next month. It's so amazing to see them living what we did last year. We pray for a speedy recovery for him and peace for their journey.

My friend sent me this verse and it's so fitting. Thanks Kristi!

Consider it pure joy my brothers, whenever you face trials of many kinds, because you know that the testing of your faith develops perseverance. Perseverance must finish its work so that you may be mature and complete not lacking anything. James 1:2-4

We thank God daily for our trials, because our ultimate goal is to be mature in our faith and more like Him. Everyday is more learning and a little bit closer. Thank you!!