From Tara Maines, Oaklyn’s mom:
D A Y E I G H T E E N.
Hey everyone, lil thang Oaklyn Ford here.To jump right in it, I’m hangin in there! This past week has been so very overwhelming, and I’ve mastered the art of steps back and steps forward to the T. It’s given my parents a heck of an emotional whiplash, but they don’t mind. They tell me its part of it, and try and convince me to make the most of this ride. So, here goes nothing! I’ll try my best to explain and keep it simple with all the mountains we’ve moved, and tried to move throughout this past week. Because let me tell ya, it’s been a tough one for this lil sis, but I’m doin’ my best!So, I’ve officially slimmed down to my summer body again, and that **risky decision** my parents made last week… oh so worth it! I was 10lbs 4oz last Thursday, but as of yesterday, I am back down nearly to my birth weight of 5lbs 13oz. All that extra fluid I had last week, was pulled off by that magic machine! And, boy, we are grateful. My rolls are gone, and my chicken legs have been fully exposed (my mom and dad caused this). The thing now is that since that machine did it’s job — I have to do mine. Which is scary! They’re taking me off this machine on Saturday (tomorrow! YIKES!). They tell me I need to be able to pee on my own, and not retain fluid which would tell them my kidney function has improved. That’s what I’m really hoping for! Next, let’s talk about my darn tiny liver. Y’all! It still just isn’t having it, but I’m doing everything I can. They say TLC is all that can be done since I can’t get a new one. My numbers are consistently high which they say isn’t a good thing, although, today they stayed the same as the last check! Which maybe that means it’s no longer poopin’ out on me, and may be plateauing, and has the potential to eventually get better. Who knows! We will wait and see. Ultimately, this is where the doctors tell my mommy and daddy that this HAS to improve since I am not a transplant candidate (a-holes!). I try and tell my liver to get better, my daddy always prays over my body and says for alllll my organs to heal, so I try and think the same. They also did this thing again on me that they did in the beginning… EEG? Mom said I looked like the cutest troll she ever saw (see pic for smiles). They’ll also be doing another head ultrasound. This is all for comparison to see if there’s been any worsening of my cute, damaged lil brain.Now, some big positives.. last time I was here I was “riding the vent” and was so very weak. Well, today, was a BIG step (one of many) and we made a transition from conventional vent to trialing if I can maintain my own breaths on ETCPAP! I was showing them how strong my lungs have gotten since all the fluid has came off. Fingers crossed, I’ve been on it for a few hours now, and I’m being so very strong! So far, so good. My mom is afraid to brag out loud because she believes in something called, “jinxing?” but to be honest, nothing can jinx me at this point! I’m a fighter. So that’s what I try and telepathically tell her to make her feel better. Next, I used to be on three blood pressure meds, but guess what!? I’m on NONE now! I also am getting some nutritious goodness in my IV instead of just sugar water. They say this is one step closer to milk! Woo!! But until then – because my liver HAS to improve before that – I’ll be enjoying my milk soaked swabs during oral care instead. I always try and suck onto it, I lurrrrvvvv it s’much. My mom and dad always record me during this for some reason! I guess I’m a cute eater? Who knows. Also, something fun, my nurses made an exception for me, so I could have visitors! I got to meet some of my grandparents and my aunt/uncle. I’m pretty sure they were all obsessed with me. My uncle even told me he’ll never ever tell me “no” once I break out of this joint! Hope he knows I won’t forget that. Oh, and I was so crazy that day! I was so alert and so excited to see everyone. Everyone was so happy to finally not see me so sleepy. Although, the next day I was POOPED! And still am. We’re working through it to build my stamina. Its like I’m a constant work in progress, but I know no one minds.So, with all the above, it’s bought me some really precious, precious time here in this world. They tell me I am a super hero! That I can do anything. I know I’ve jumped some hurdles, but we still have some big ones coming this weekend and hopefully next week. We need my cute tiny liver and kidneys to function after they disconnect me from this machine on Saturday. They’ll give me a few days to see how it goes. Momma said the “big talk” they were going to get from the doctors if I didn’t get better has turned into a “re-evaluate” kinda chat, and that’s made them so happy. They want more time with me, and heck! I can’t blame them. They need me, but frankly, I need them too.Everyone please keep thinking of me, praying for me, doing whatever it is you’d like to do for me because so many battles still lie ahead. I need to keep moving these mountains – one step at a time. Like my family continues to tell me, everyone give me a loud 🦋G O. O A K S. G O.🦋 and let’s (keep) doing this.