Gabriella is still on twice a week clinics thru next week because of her high heart rate she had and her low WBC's this past week, but the following week she should be on once a clinic week visits if we can get all these little blurps out of the way! Her ECHO's continue to show that her precious angel heart is a strong one, working in perfect sync with her body. They have been playing with her med levels because her white blood cells are dipping too low, and will start that balance all over again next week when we take her immuno suppressants from doses every 8 hours to every 12... eliminating her 1am and 5pm med times! This puts us at 9a and 9p med times only. (YAY! lol) Gabriella is gaining weight at the perfect speed. Today she weighed in at 44lbs, the highest she's ever been! We struggled for SO long to get some weight on her, and now that her new heart is working so strong, her body is able to THRIVE again!!! Her keloids on her chest are growing, and the silicone strips aren't working. I am trying to figure out what to do for this, because I want to treat it as well as possible right now when the tissue is soft and pliable before the tissue becomes more permanent.
Some other things I wanted to update on.... Gabriella's speech is doing amazing things. Like, Jesus healing the lepers and blind kind of amazing. She can initiate her own new words, perfect ones she hears once and put together combinations of sounds she would struggle for WEEKS on end to get just one! Her sentences are becoming more liquid, just flowing together with more ease every day. Since her stroke to her transplant, in that 8 month period, she went from not having mouth control to having the speech of about a 1 year old. In the 2 months since transplant, she is at about a 2½ to 3 year old level! When I try and think of how her speech will be by the 1 year marker of her stroke, I can't wrap my head around it. I absolutely KNOW it is because of that richly oxygenated blood going to her brain from her amazing little heart.
I also thought I would mention our outing habits, just for giggles. We are venturing out more and more to places that were so routine to us in the past but are now well-planned events. I carry a backpack that, if you found it on the street, you'd look in and wonder what in the world this person's phobia was or if they were a housekeeper. I carry a lovely assortment of gentle hand wipes, disinfectant hand wipes in both package and individual wrapper form, Lysol surface wipes, travel size Lysol spray, full size bottle of Germ-X foam hand sanitizer (best ever), and about 3 bottles of Bath & Body works scented plus a baggie of face masks. She stays to her stroller with her mask on and we wipe down any surface we might need to touch before she touches it. We clean all of our hands before and after we do anything and stay clear of groups of people. It's working for us, and we get the kids out of the house on occasion (besides our outings to the hospital... lol). It's also good practice for us and setting a new normal for the kids of what they need to be cautious of. Since Gabriella will always need to be aware, this will help us to transition into normal habits at home, since we will add in new elements being around family and going back to therapies and all of our other docs.
Like I first said in this entry, Gabriella's new sparkly heart will have been beating strong in her chest for 8 weeks this coming Monday, which means another sweet little one has been gone for almost 8 weeks. Please take a moment to pray for Gabriella's donor family. I got a notice from the procurement agency that they accepted my letter on June 22, and I hope that they find comfort in what they wanted from their decision to donate is REAL... that something good would come of such loss. From experience, I know how heavy life can feel when time has passed, people stop calling and you are silently expected to just move forward. You feel like the prayers might be coming less often and the quiet becomes louder. Help me this weekend to cover them in prayers. I want them to feel that their gift is still just as miraculous and cherished as the day it was given, and I need my prayer warriors out there to help me with that!!!