Hey Baby Girl. I miss you! I love you! It’s been a couple days since I last updated our “One Year Ago” blog stream so I thought I better jump on here today. It’s been a quiet couple of days and Mama really needed that. My emotions got the better of me on the weekend and I really didn’t get to relax much. I’ve come down with a cold and I know my body is telling me to slow down and get some rest. So that’s what I’ve been trying to do.
February 10, 2018 – Day 4 in RUH Saskatoon. This day was spent walking the halls of the hospital for the morning and spending the afternoon at RMH with Daddy and Aunty Jack. Aunty and Anika went grocery shopping and that night we were able to cook our very first supper at RMH which was an amazing feeling to do so. You actually got to have a break from your IV for a couple days and we were able to start you on oral medications! So you were given a lot of freedom on this day which made a huge difference in everybody’s attitudes. We spent a lot of time just enjoying being together as a family and some resemblance of normal. You napped and Mommy and Daddy went shopping for a couple hours which was a nice mental break for Mama. It was so great to see you running around like a normal little girl without a bunch of IV lines attached! Overall just a great mental break for everybody but especially you and Mama.
February 11, 2018 – Day 5 in RUH Saskatoon. Sunday. Daddy and Aunty Jack head home for the week. My heart breaks. On the bright side you were given a day pass again and were allowed to come to RMH to spend the night with us! Much of our day again was spent just chilling and waiting to see the doctors Monday for a better game plan. We got to watch you play doctor with your Big Teddy Bear and take his “bitals” (vitals). It really was the cutest thing I saw you do in a very long time. You really did pay attention to what those Doctors and Nurses were doing to you. You knew how to wrap the turnkey around his arm and poke around to “find a vein”, sadly impressive. I’m amazed as a hospital mom how resilient little kids are and how much they learn from their own journeys. As stressful and crazy as the days can be you really were my happy place.
We chose that Sunday evening that we should post an “Eva Update” on Facebook because we were starting to get questions and a lot of people just wanted to know if you were okay. I was overwhelmed by the support and outpouring of love that we received that night. People asked if we needed help. People gave words of encouragement. People really just rallied behind us and continued to wait for those updates in the coming weeks. We really do know some amazing people my girl!
February 12, 2018. Day 6 in RUH Saskatoon. Back to the stress. We got to meet Dr. Stammers, the other Hematologist. He too was a great doctor and we valued him very much. That being said, that first day I met him I was very unimpressed. He wanted to do another round of IVIG while we waited for the new drug to be approved. I was not happy because this is something we had done many many times and saw 0 results. I understood he wanted to see if it would help your levels at all just to carry us a couple more days but it still was hard to hear. I think because as soon as I heard that I knew that this meant a new IV line. Which automatically meant a minimum of 3 pokes to get it started. Which automatically meant hysterical tears from both you and Mama. After talking to Your Daddy and my own Daddy and some hugs from Grandma and my “Aunty Miranda” I decided yes I would go ahead with the IVIG. I was right though. Two pokes and many tears and a Resident that finally said, “Let’s go find John.” Oh man was John another angel in disguise. It too took him two tries but he was so much quicker and more relaxed with You and Mama both. It made the process so much gentler. They ran the IVIG through quite quickly and when Dr. Stammers came back he said “The Rituxan has been approved. We will start that tomorrow.” Whew. A step forward, finally! We were sent back to RMH for the night to get some rest and to be back at hospital tomorrow morning bright and early to be briefed on the new treatment.
Another really cool thing that happened this day, after all of the IV pokes was getting to spend sometime crafting in the playroom with a few of the other kids! You got to make a headband for valentines day, and paint some pictures! You had such a blast! It was excellent to see all the programs that the hospital put on for the kids that are in the hospital. I know for us all we wanted was for you to be comfortable and to be able to have some fun. It was so great to watch you make friends and express yourself through art which you always loved to do.
This is all still weighing heavily on my heart but sure is helping to explain to the world what we went through. You fought a beautiful fight my baby. I will always be very very proud of everything you did in your short time here in the world. We all love you and miss you so much. Just know that your mark on this world will not go unnoticed! I promise!
Love and Kisses,