RILEY UPDATE: What stress? 

RILEY UPDATE: What stress? 

☀️TEAM RILEY UPDATE: DAY +65 • on the inside looking out ❤ one day my sweet girl! In typical Riley fashion, she has to stand on whatever toy in sight 😂 

So much is going on yet it seems like nothing is going on if that even makes sense. For every “bad” thing, I’m going to try my best to counter it with a positive note because no negativity is allowed here – for one, that’s just not healthy, and two, ain’t nobody got time for dat!!! 

•On Monday Riley had a clinic visit and she’s looking great – the doctors basically just play with her while they’re in the room, Riley takes over the examination! She knows what all the tools do anyway 👩🏼‍⚕️💁🏼

•💉Her blood draw went smooth, only one poke and very minimal crying as long as she has pictures of dogs to look at 🐶

Results showed her red blood cells and platelets are all looking really great – she never needed any transfusions after chemo so the doctors are happy about that! 

Her ANC is staying around 1,000 which is OK, could be better but definitely could be worse so we’ll take it and praise God it didn’t drop. Anything under 1,000 puts her at higher risk for bacterial/fungal infection and anything under 500 is just no thank you. Bad news. So praise God she’s still at 1,000!

•Now her T-cells… the things we are REALLY watching.. are the lowest they’ve ever been, besides when she was born her labs showed <1. They were at 175 which is already a low count and now have dropped to 23. Normal counts are well over 750 🤔 I think – don’t quote me on that haha.. With that being said, and as much as it sucks, this drop in t-cells is absolutely expected. Since she no longer needs her enzyme injections thanks to transplant 🙌🏼, her new genetically modified stem cells are learning to produce the enzyme all by themselves so they no longer have the help from the injections. Her counts dropping are exactly in line with the time line for past gene therapy trials and like I said, absolutely expected. Actually, there’s a good chance they might just completely wipeout to zero before coming back up 😩

So over the next two months they will be  very low before starting to climb. Those little t-cells have a long road so GROW CELLS GROW!!!!

•🏡 we still aren’t home. That’s been one of the hardest things but one of the biggest blessings all wrapped into one. Our little family has only been complete on the weekends. So much to do, so little time. BUT good news – the mold remediation and construction is DONE! We still have a lot of cleaning up to do before we can take Riley back BUT as long as things go as planned, the goal is to be BACK HOME BY THE END OF THE WEEK!!! Aaaah I can’t wait!!! We can be a family again and not spending weeks apart. I truly feel it will relieve so much of my stress. We have been so blessed to have such a wonderful home to stay in and the help of family and friends with meals and grocery shopping. The Lord is so faithful, has always been and always will be. 🙌🏼

•😷 my health.. ugh! Where do I even begin. I still have some strange throat irritation going on and have been extra cautious around Riley. Bothersome ulcers, two urgent care trips because you can NEVER be too careful with a SCID baby. On my second round of antibiotics and now a steroid to kick the inflammation and heal the ulcers. Not sure if antibiotics are helping, doctor said possible strep but could be viral. Really I don’t have any answers as to WHY or HOW other than ulcers can pop up because of EMOTIONAL STRESS.. but.. stress? WHAT STRESS?!? and.. nutritional deficiencies… and acid reflux.. oy vey. Just so much stacked against me, my body is obviously screaming at me to get back on track and healthy! So I joined a 12 week workout program, ordered some plexus and am on a journey to get my health back 🏋🏼‍♀️💪🏼 pray for me!!! 

The BIGGEST blessings and positive notes are that through EVERYTHING.. the mold, the stress, the throat issues, the white blood cell counts dropping, RILEY IS HEALTHY! She is strong and resilient, she is AMAZING! I told you God IS faithful.. look at Riley and all she’s been through. God has protected her for 15 months and continues to keep her protected. Just in awe of that fact. Incredible. I cry thinking (& writing) about it. Overwhelmed with gratitude. 

🙏🏼 THINGS TO PRAY FOR:

  • PROTECTION for Riley from any and all illness/infection – especially if whatever I have going on is something contagious.. please pray it’s not. 
  • GROW CELLS GROW
  • Mine and Jared’s health and stress/anxiety levels. That whatever is going on with my mouth/threat clears up and that I stick with my new programs.
  • That moving back home stays on track and goes well

PRAISE GOD FOR RILEY’S CONTINUED HEALTH AND FOR THE MANY BLESSINGS WE CONTINUE TO RECIEVE THROUGH ALL OF THE ADVERSITY 🙌🏼🙌🏼🙌🏼 GOD IS GOOD! ALL THE TIME!

We love our Team Riley Family more than we can say! Thank you for reading this long update and we can’t wait to share all of the good news along this journey! ❤ xoxo

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