Day 336 – Happy Hearts

Our hearts are happy tonight.
We got to do dinner with two of Ryman’s geneticist from DC, Dr. Lanpher and Dr. Cusmano. They have played such a big part in why Ryman is with us today and why she is doing so well. They were in town for a conference and we couldn’t wait to see them. Its so crazy to think that it was the first time they had seen Ryman outside of the hospital and they saw her lots so how great it felt to sit and have dinner with them in Nashville.
We were also excited today because Ryman gets to stop two of her meds! No more magnesium until next labs to see how she does and no more Valcyte (anti-viral). Ryman also decided that today would be the day she would try to do things by herself. She was dipping her spoon into the baby food and trying to eat it and tonight she wouldn’t let me feed her the bottle. She is getting so big.

20140326-220732.jpg

20140326-220747.jpg

6 months post transplant

Tonight, in about an hour or so actually, it will have been 6 months since Ryman headed back into the O.R. for her second transplant! This is such a big milestone that we have made it 6 months and only had one non transplant related hospital admission. Thank you for the prayers, I know so many still pray for her continued health. We have been living a pretty normal life lately. The meds, dropping Rye off with Amy, work and just life has been going smoothly. Well except a bad case of rotavirus (the worse smell ever) but we were able to keep her hydrated and out of the hospital. She also had an ear infection that we just finished antibiotics for. Those things are rough. So sorry to anyone whose kids have struggled with those. All in all we have been okay though. This past week Ryman started saying mama. Jeremy posted a video on Instagram if you want to see it. This little bit of a sound is a really big deal. Blessed is an understatement!
Not only are we 6 months post transplant but Ryman’s 1st birthday is quickly approaching. Its so crazy and exciting to think that she is almost 1 year old. God is so good.
We may get to stop another med this week and we head back to DC next month for her follow up. We are currently on monthly labs, woo hoo, and if DC goes well we may get to move to labs every 3 months! We found out that she also gets to try to switch to cows milk at 12 months which we weren’t expecting so we are happy about that. She is eating finger foods like crazy and wants to feed herself instead of eating from a spoon. She isn’t crawling or walking yet but she wants to really bad. She gets around really well in her walker now.
Thank you guys for loving on us and praying even when things are good.
So much love, Brandy

Let me catch up on some pictures:
Brigham excited that Ryman comes to hang out everyday, he ask to hold her. So cute.

20140317-225646.jpg

20140317-225854.jpg

20140317-225912.jpg

20140317-225928.jpg

20140317-230009.jpg

20140317-230036.jpg

20140317-230055.jpg

20140317-230121.jpg

20140317-230201.jpg

20140317-230215.jpg

20140317-231136.jpg