I haven’t posted anything in almost 2 weeks. Doesn’t feel like it has been that long but when I just looked at the last post date I was like “no way.” lol
Don’t get it twisted(because contrary to what people think, you are busier when you are at home than you are when you go to your job that pays you. Whether you are running a household, taking care of kids/loved ones, have a personal business/company, or in my case waiting on a heart transplant call), don’t assume that those of us who don’t punch a clock are at home twiddling our thumbs and bored with nothing to do. So “stay at home moms” don’t just stay home and do nothing!!! Whew that felt good…..I am busier now than I EVER was being an RN. This is not a complaint because I am very fortunate and beyond blessed that I can spend this time with Kendall and my family and be available to take her to all of her appointments. It’s something about this time right now when I can blog that I talk about things I didn’t intend on. My intentions are only to give updates but sometimes I have to vent.
A few people have said to me “so what do you do all day?” Aren’t you bored? Shouldn’t you be working since there is nothing going on with Kendall right now?” My response is this( the responses that I will give that won’t get me banned from social media) is 1-mind the business that pays you 2- you have no idea of all of the work, planning, phone calls, emails, stress, and mental/physical preparation that goes with this. 3- I am so glad that you don’t know what this is like on a personal level.
Ok so now for the updates!!! Kendall has been in PT/OT/Speech therapy for almost a month now and it is going well. She is definitely benefiting from it. She is doing all kind of exercises that is strengthening her core, legs and arms. She has some exercises that she does at home too like: getting on the floor and getting up without assistance, using dumbbells while sitting on an exercise ball, using a stationary pedal machine for her legs, and picking things up from the floor by squatting and not bending at the waist. She’s been taking walks to the corner and back and we check her oxygen levels before she starts, at the corner, and when she returns home. They have been consistently 91% to start, high 80s at the corner, and mid 80s when she gets back home. She does it all without taking a break and when she gets home she just needs a few minutes to recover and get her breathing under control. This is a big accomplishment!!!
She has an appointment tomorrow before therapy at Wright and Filippis to get measured for a hand splint. I’m not sure if she will have to wear it during the day or just at night. She needs it so she will be forced to keep her left hand open and use her fingers.
So basically what we have going on right now on a regular basis is therapy every Thursday for 2 1/2 hours. Psychology appointment every 2 weeks. We are headed back to Pittsburgh on on July 31st for ENT procedure on Monday August 1st and an appointment with cardiologist on August 2nd for EKG and ECHO. Then we have to return to Pittsburgh for the follow up ENT appointment on August 24th.
I wanted to give thanks to all of you that have continued to support us in every way. Whether it is prayers, texts, posts, physically, emotionally, financially, sharing her journey with others, purchasing t-shirts/books, and/or words of encouragement from friends and strangers, thank you is certainly not enough. Without you we could not do this and alone. So we are forever grateful for all of you.
xoxoxoxoxoxoxoxoxoxoxo
Cewanda and family
#BeKendallStrong
#TeamKendall
Also thank you so much for your personal donations to us and those through www.cotaforkendall.com.
COTA has really been good to us. Even though we haven’t reached our financial goal, we have still been benefiting from contributions and donations from you and others. All donations help families of children that are waiting on a transplant. We are witnesses that your donations through this organization is definitely reaching us and our needs are being met for sure.
Also thank you to Miracle Flights who is covering the expenses of our flights to Pittsburgh in a couple of weeks. Miracle Flights took care of our flights in March and they are helping us again. Thank you!!!!