Update:
My toe has finally healed! After 9 months, I now have skin on my toe. Thank you team of toe Dr.'s!!!
I completed my final blood draw on Saturday!!! Amazing feeling. My blood tests have come back great every month. This week, my WBC was a little low (3.7), so my Chicago PA told me to stop taking a medication (bactrim) that can cause the WBC to be lowered.
I had my re-evaluation today at PT. I'm about 85% better than I was when I started back in the Summer. 85%!!!!!! That's crazy! My strength is getting better and better. Muscles that were asleep are waking up which is causing some major back and neck pain. All things we are taking care of with massage and heat and ice, but still very painful. My therapist told me if there was an award for "most improved" I'd get it. The staff have been amazing and helped so very much.
Feeling things is becoming a new thing. :). I was speaking with my 4 year old about things that I am thankful for and I told him I was thankful for Dr. Burt and his team because he helped mommy get better. He replied, "Dr. Burt, he helped you feel again?" Yes, my love, he helped me feel again (and someone has been paying way more attention than I thought). When I get up in the morning and put my feet on the floor, it hurts, LOTS. My feet lost so much feeling, the nerves are trying to come alive again, and it hurts.
-----
Thanksgiving has a new meaning this year.
Lots and lots of people helped us get to Chicago. Others helped once we were home with the boys and meals. Our family and friends (I call family), have literally filled the gaps for me.
I read this before transplant, on a blog, it has stuck with me all this time.
"We can live in a way so that our children will be able to say, 'Not one moment of my life did I wonder if I was adored. Never, ever did I feel alone.' And they will pass it on. They will answer the phone. They will start packing. They will know that when your people are hurting, you go. You show up. Again and again forever. That is family. That is love. That is your legacy. Your legacy is that none of your people will be alone. Not ever."
Never ever did I feel alone. Not once. So, in honor of Thanksgiving, being over 5 months post transplant and not having had an IVIG treatment in over 6 MONTHS...I am thankful.
Thank you...
...to Jesse...you've stuck by my side in the good and the bad. You've never changed in your dedication to me and our family. All of the treatment weeks, all of the sick...ugh. You gave me this necklace on our 10 year anniversary to remind me of the hard and painful things we've experienced (the black ring), the good things too (the silver ring) and how all of it together makes a beautiful life. Love you.
...to Randy & Gwen (my mom & dad)...you had my boys for 2 months! Not once, did I worry about them. Not once, was I concerned for their safety. I knew that you were taking great care of them and I didn't need to worry. You've sacrificed so much time in taking care of me and my family. I now know, that's just what parents do for their kids. :)
...to Terry (Grammy)...a week of memories were made with sleepovers, frozen yogurt, pizza and pool time! You also played a huge role in his life since he was 2 months old. Grammy's house is like a second home to him. You've been a great help over these years helping during treatment weeks to entertain and distract the boys from the crazy of it all.
...to Steve & Jeanne (Papa & Gigi)...you gave David a week of memories that he's still talking about. From fishing to swimming to playgrounds and driving boats, he loved every minute. You've supported us in every possible way these years. A true blessing and gift to have you on our team.
...to Jason (and Susan)...you got the second hardest trip bro. Mobilization to harvest was no easy task but you willingly signed up for the adventure so Jesse could be home with the boys. You cooked, cleaned, picked up prescriptions, grocery shopped, helped me walk, dealt with all the luggage, massaged my back, slept on a lumpy pull out couch for 2 weeks in subzero temperatures, woke up super early to warm up my shots and then stuck me in the stomach with 14 needles (a time I know I will never forget)...and you did it all while trying to make me smile (well, maybe not at 6:30 in the morning). I'm glad you were with me. :)
...to Caleb (and Melody)...you made our video and captured what our CIDP, IVIG life looked like. You portrayed how desperate we were for HSCT and in turn helped others understand why we were asking for funds. You coached me, helped me through the words (one sentence at a time), recorded over 3 days and edited for so many hours until it was just right. You were also a support for the boys and mom & dad. You played with the kids and made sure they knew they were loved while I was gone.
...to Jonathan (and Noelle)...you got the easier trip. ;). Pre-testing week would have been a lot different if you hadn't joined me in Chicago. You got to meet Dr. Burt and do all of the walking with me limping along beside you. You held my things while I went from one appointment to another and never complained. You made sure I had water and snacks to get through the long days (and the 34 vial blood draw). You gave up precious time with your family to be with me and help me.
...to Jenn (my BFF, my Sister from another Mister)...So many things to thank you for. You kept us fed for the first few weeks home. Those meals were so perfect for what I needed. My energy was still gone and having meals ready to go let me "contribute" to the family without my body giving up. You've been with me every step of the way on this crazy life journey. The next post is for you too. ;)
...to my girlfriends (you know who you are)...I got through the darkest time of my life because I had true friends. Thank you for skipping the small talk. Thank you for every single time you made me laugh. Thank you for not being perfect, for having kids who throw fits and won’t sleep. Thank you for not cleaning up too much before I come over. I often feel like you girls, my village, my tribe, are the reward in a divine deal. So yeah, I had to live through some sh**, but in return I get to have each one of you in my life. You’re my helpers and my guardian angels. You’re the ones who held my hands and cheered me on while I walked barefoot over the hot coals and are still here to party with me on the other side too. Because when one of us makes it, we all make it.
...to my prayer supporters, your prayers were and are so precious to us. Knowing that everything was being lifted up, let me focus and be in the moment.
...to our financial supporters:
You helped get us to Chicago!
You helped us stay in our home!
You helped me be able to take the much needed time off of work, to recover. I will forever be humbled by your generosity.
...to our entire team. Thank You.
Thank you for coming together and investing in my health. This is the best I've felt in years! Thanksgiving indeed.
