For the first time in forever… We continue on the fast and furious highway of life that we are on right now. Things have been well but rocky at times. Ellie is really quite happy most days. But some days she is just all out cranky. We’ve noticed that it is sometimes related to the weather. Someone asked us if barometric pressure affects her and we think there could be something to it. A little Tylenol seems to help and make her feel somewhat better. I’ve wondered if some of Ellie’s events from last year may have been migraines. Since we never really got a definitive diagnosis we just continue to wonder. However, pain medicine always seemed to help. And with a lot of the other theories, pain medicine shouldn’t have really been a factor. There is something called a hemiplegic migraine. It is a typical migraine but it also involves weakness on one side and even paralysis. It mimics a stroke and has the same recovery like a stroke. We haven’t talked with the doctors yet, but it looks very similar to what Ellie has experienced. The treatments and medicines for it are exactly what she is on already. So at least we should be on the right path either way. She is still going to her preschool three days a week. The last couple of weeks have been good but challenging. She struggles with paying attention and focusing on one task at a time. She would rather just walk around all of the time and that isn’t exactly what fits in with a classroom setting. They are working with her but it may come to the point where she is just too much to handle. She struggles at times with focus and understanding. Her long term memory is unbelievable but the short term is hit or miss at best. We’re not sure if all of this is somewhere between just doing what you want to do and being stubborn or doing all that you understand to do. Lately all she wants to do is go upstairs in our house. That’s where she wants to be. There was one time over the holidays that we spent three straight days just hanging out on the second floor. She’s happy and she scoots around all that she can. But it seems to limiting to be living on the floor without the kitchen. Although we still have a lot before us in her recovery, there are definite improvements. While her hands are still weak, they are not nearly as shaky. She can at least grasp things more accurately than she could a few weeks ago. She will at least try to color and do stickers for a little while. For the longest time she wouldn’t even try. Sadie is 100 mile an hour all of the time. She is exerting her independence and is not afraid to tell you no. She is completely ate up with the movie Frozen. Up until this week she called it “Let It Go.” But this week she now calls it “Pozen.” You can actually add The Little Mermaid and Tangled to that as well. If she had her way she would have all three playing at the same time. She is speaking in sentences and is really pretty clever. You can’t get much past her. You can try but you will probably fail. She and Ellie continue to be the best of friends. They continuously want to know where the other is. They even wake up within about a minute of each other every morning. PRAISES • To God be the glory for everything! • We’ve been four months without a hospital stay. Thank you Jesus! Please pray for… • School. We pray she’ll be able to continue at her preschool through the end of the year. Then we need the best possible option for her to begin Kindergarten in the fall. Lord pave the way. • Perfect vision. In some ways it is better but it is still off and she can’t really tell us exactly what’s not right. • Walking, Eating, Hair. Quit holding out on us and make your debut once again! • The next MRI on February 19th. They have told us time and time again that her brain MRI will never look normal again. There’s a hole where the largest tumor was. There are still two dead tumors at the base of her skull. The best we can hope for is just no cancer. Lord let them see on earth the way that it is in heaven. Normal! • Karsyn. The other little girl in Nashville that fought AT/RT as well. She has been in ICU since December 1st with severe issue with her lungs. It now appears that a lung transplant is inevitable. Lord we ask that you would heal the lungs she has or prepare the way for the ones you’ve chosen to be just for her. Either way Do it Lord! Two years ago tonight, we were leaving the MD Anderson ICU. We had been with Ellie all day and were telling her goodnight. She was almost unrecognizable she was so swollen. She was intubated and on a ventilator. We hadn’t talked to her in four days. My mom and sister were staying with her in the ICU. It was supposed to be the time we had longed for for 8 months. The week when her treatments were finished, we would welcome her new brother or sister in the morning, and we were headed back home to Nashville within a couple of days. Instead, we had no idea if Ellie was even going to survive what was going on, how many more weeks we would have to be in Houston, and having a baby just didn’t even really seem that exciting. The next morning the nurses and staff at Memorial Hermann must have thought we were the most depressed expectant parents they had ever seen. They started conversations with us like they would any family about to welcome a new child. By the time they left the room, they had heard our story and the wind had been let out of their sails as well. It was hard to find joy in that moment at all. So many had thought we were crazy for not finding out ahead of time if it was a boy or a girl. But that morning the anticipation was building as thousands literally waited for the big announcement. For a brief moment when they started my C-Section, our anticipation actually started to build as well. It was really happening and nothing could stop us now. At just after 10:30 am on the morning of January 23, 2013, Mike said those words we had heard once before. “It’s a girl!” Little Sadie Marie Taliaferro had made her debut. The next 24 hours were just kind of a blur. Three people in two different hospitals in a city where you don’t even live is not ideal. The next day, a team of MD Anderson doctors called Mike, my mom, and sister in to a conference room to talk about Ellie. In the past this was not a good situation to be in. They only do this when the worst news is about to be delivered. Ellie was actually stable though and they felt like it would be beneficial to medevac her to Nashville to finish her recovery. It was the safest way to get her home. This couldn’t have been any better news to receive. Mike’s response to them was “can we go right now?” Within 24 hours we were headed home. The two pictures posted here were events that were taking place at the exact same time. On Friday, January 25th at about 3:30 pm, Sadie and I were leaving Memorial Hermann with my mom and mother-in-law, my sister was on a Southwest flight headed for Nashville, and Mike and Ellie were getting ready to take off in a medevac plane. It’s hard to believe now that we survived that time. I think to some degree we are still dealing with the anxiety and post-traumatic stress of it all. Even the most talented of writers couldn’t have written a plot such as this. Even after all of that, we missed being together for Sadie’s first birthday as well. Ellie was still in the hospital last year recovering from the terrible episode that had left her there for 21 days. She was in no shape to even comprehend that it was Sadie’s birthday and it would be a couple of months before we even tried to celebrate. So here we are tonight. God willing and to quote a song from Sadie’s all-time favorite movie, it looks like everything is a go For the First Time in Forever for Sadie and Ellie to spend Sadie’s birthday together tomorrow. In a lot of ways Sadie has gotten the short end of the deal. Her birth was nothing spectacular and she has had to go with the flow and hold her own around Ellie’s care. But it will be nice to give her day tomorrow that is all her own. Hopefully with a big sister who is feeling well and ready to celebrate her big birthday #2. God’s ways are so mysterious. We are so blessed that even though the road was terrifying, we’ve had it so much better than the other kids who have fought the same disease. But He is faithful and He is good. He gathered his followers by the thousands and bound together a mighty army of prayer warriors. Together we called on Jesus and He shattered the seemingly unsurmountable wall that was before us just like the battle of Jericho! And the walls came tumbling down! Thank you Jesus! Thank you to each and every one of you! Happy 2nd Birthday Sadie Marie! Still standing with our Shining Light of God’s Promises and praying for continued miracles! Blessings! Mike, Kerri, Ellie, and Sadie Taliaferro
Posted on: Fri, 23 Jan 2015 04:55:40 +0000
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