We had lots of fun today watching Mackenzie (and Paige) run and skip and have a blast at the John Ball Zoo in Grand Rapids, MI. We renewed our annual membership and enjoyed a beautiful, sunny, Spring afternoon at the zoo. The girls had a blast and we just loved watching her fell good, smile, and truly enjoy childhood. Couldn’t ask for a better day! Praying we can have just as much fun in 29 days when we return for the 2017 Walk to Cure Arthritis. The girls love to visit the zoo and are already looking forward to what animals will have returned from their winter homes to add to the exhibits we saw today. These days really do make my heart smile!
The Cooking for a Cure with Mackenzie’s Sidekicks cookbooks are here and they are beautiful! If you pre-ordered a cookbook they will be on their way to you. If you are interested in purchasing cookbooks, please go to the contact us page and drop us a line. Books are just $10 each (plus $3 shipping and handling per book if you need them direct shipped).
All proceeds from the books are going to benefit the Arthritis Foundation to support their mission of finding a cure for Arthritis!
Last week Mackenzie had a check up with our Rheumatologist here in town. During the exam the doctor did notice active arthritis and swelling in her right knee. It is very hard to sit and watch the exam and hear the doctor to tell you that yes, the arthritis is active again. We’ve gone so many months with nothing but great reports and no signs of active arthritis. Then this. Like the heading says, three steps forward, two steps back.
On Monday Mackenzie began a round of Prednisolone that she will be taking for eleven days in hopes of not only giving her relief from the swelling and pain, but also to knock the arthritis back to an inactive state. Remission cannot occur unless the arthritis remains inactive for a year without medication. Obviously we are not as close as we once thought we were.
Today Mackenzie is feeling better, moving better, and sounding better. Those of us that don’t have arthritis and don’t suffer with chronic pain will never understand what she feels but what I do know is that is heartbreaking to watch her withdraw from activities because she either hurts too much to participate or she is too fatigued from coping with the pain to participate.
We have been told numerous times that Mackenzie likely does not know what it feels like to not have some level of pain. Because of her young age when she developed the arthritis, her only memories are of some type of constant pain. Her threshold for pain is probably much higher then that of a healthy child or adult so when she shows signs of pain we react because the pain is probably getting to a level that would bring a health adult to their knees. What amazes us is that she rarely ever complains. If she is in pain we have to figure it out from her behavior because if you ask her if she is hurting she will likely tell you no. A four year old child should not have to live like this.
Our next trip to U of M is coming up soon and at that visit the doctor will evaluate how Mackenzie is doing after a short burst of steroid treatment and will then make a decision as to whether to let her go with just her Enbrel or add back her Methotrexate. Of course our hope is that the steroid was enough to get her arthritis back under control and that we will be able to just continue with Enbrel alone. If not that means adding back to her routine a daily oral supplement, another weekly injection, and anti nausea meds as the Methotrexate makes her extremely sick to her stomach. We never truly realized just how sick it made her until we stopped it and saw how much better she ate and how she started to finally gain weight. For those that think arthritis is no big deal…..think again. It’s a horrible disease with harsh treatments.
On Tuesday we reached out to several area television, radio, and newspaper supporters regarding the cookbook. Our goal – to get a few more recipes from some area celebrities. Well, as of this morning Mackenzie and I are scheduled to appear on the 5:00pm news broadcast on WZZM to talk about the cookbook and put out a call for more recipes.
We have to thank Val Lego at WZZM for reaching out with this great opportunity. As any of our regular followers and supporters know, this cookbook is a very exciting project for us and now we get the opportunity to share it with an even greater audience all while we also get to continue to share Mackenzie’s story and her journey as she battles arthritis and we help to raise funds towards finding a cure.
As of today we have approximately 95 recipes. We have room for plenty more. If you have already sent your recipes we thank you greatly for your participation and we thank you for sharing your favorites with us. For those of you still working on your recipes we will continue to anxiously await them. And finally for those who are just learning about the project and are interested in participating, please click on the links tab to find the forms for the cookbook.
Thank you everyone and don’t forget to check out WZZM at 5:00pm or watch it streaming live at wzzm13.com.
We are excited to announce that Mackenzie’s Sidekicks will be publishing a cookbook in early 2015 to raise funds for the Arthritis Foundation to support the mission of research towards a cure. Many of our current supporters will be receiving a packet in the mail soon with information on how to help and participate in the cookbook. If you are interested in participating in the cookbook by having your favorite recipes included, please e-mail us (just click on the mail icon at the top of the page). If you would like to reserve a copy or two or three of the cookbook please message us as well. Our goal is to have the cookbook out by the end of March/beginning of April. It is going to be professionally published so it will make a terrific keepsake item or great gift item. We will also keep everyone updated on the status of the cookbook here and on our Facebook page as well as our Google+ page. Thank you again for all of your support!!!