Last time I wrote I think she was still on Cpap and I hadn't gotten to hold her yet. Shortly after that she went to a high flow nasal cannula and I was able to hold her for the first time in 53 days! Those 53 days were the hardest of my life; Although I put on a good front and tried my best to act happy every second Madi had her beautiful eyes locked on mine I was empty inside. A mom that can't take care of her child is a mom that is dying inside; a mom who so desperately and instinctively wants to calm and comfort her baby but can't. It's was pure torture. But I can tell you that the moment she layed in my arms after all that time and just fell asleep bc she was so comfortable, every ounce of life I ever had came flooding back to me! I cried that day, tears of joy. During those 53 days there were some when I wasn't sure if I would ever get a chance to hold her again but God brought us back together and we both have life again :)
Its so great to pick her up when she cries, to comfort her, to pat her bum, to bounce her in my lap, to feel all 14.5 pounds of her go completely limp bc she has fallen asleep on my shoulder. Oh the joys of being a mommy again :). Below I've attached a few pictures of her here and there and as you can see she is doin so great! She's a little star around here and has visitors each and every day just ooing and aweing over how great she looks and how adorable she is! She has made great progress in physical therapy and occupational therapy as well; she can walk, she can move her left arm, has recently starting trying to grasp with her left hand and started saying "hi" again too! Mind you, these are all things that were damaged by the stroke that she had but her little brain has already figured out how to use other uninjured parts to rebuild what she lost, it's just amazing! She has the tiniest little pink brace for her left leg when she walks bc the muscles are somewhat weak due to the stroke but it only took 24 hrs to get her used to it and now she just walks like it's not there. Still a lot of work and rehab to do but we'll get there eventually! In the mean time I'm doing my best to become a makeshift physical therapist, occupational therapist and speech therapist by asking lots of questions and learning all I can to help as she does a lot better when it's just her and I than when there are people around she doesn't know.
Still waiting patiently for her gift to arrive but trying not to think about it and just praying God will bring it to her when the time is right. Another thing to add to our list of miracles that I thought you guys would like to know; Madi gets her blood drawn every couple weeks to test and see how sensitive she is to other tissues (ie how sensitive she would be to a new organ, lower is better bc you don't want to be so sensitive that you'll reject everything). Anyway, before this whole Berlin thing her sensitivity was 28 which means she is sensitive to 28 percent of the population and could accept an organ from 72 percent of the population. Normal is like zero to ten but bc she's had so many surgeries her body becomes more "on edge" and sort of in fight mode compared to the rest of us so the sensitivity tends to go up the more surgeries, blood transfusions (she's had countless) etc. a person has. Well, they tested hers again last week and they had gone from 28 to zero!!!!!!! Wow!!! Isnt that awesome! I mean God is really planning this all out to give her the best possible chance at life! This means she can accept any organ that is a match for her :). Awesome!
That's about it for now, I hope you all are well and enjoying spring time! Keep up the prayers bc try are working wonders for us! Thank you doesn't seem like enough!
Love, Tabi
