What’s next… I don’t really know what to say but I thought I would let all of you know what has been going on. Ellie has had three hospital stays in the last 8 weeks. All of the same symptoms. She becomes very irritable and her left side goes completely limp. The best they can figure is that these are vasospasms. They are not strokes but the mimic them. For about 48 hours she is miserable and then she seems to come out of it. It sets her back each time but she seems to recover within a week or so. She has to start over holding her head up, sitting up, using her arms, and walking. She has them stumped. They are doing everything they know to do but it hasn’t stopped the last 3 episodes. Yet with each one the symptoms are less severe so we must be doing something right. Ellie is the only child they have ever seen that has presented these symptoms. They don’t appear to be life threatening but they could be. No one has ever survived her disease this long so we are navigating uncharted waters. Her Neurologist said there will be an article written about her to document all of this. The good news from the last admission was that everything seemed to look better on the MRI. The areas where they had drained the subdural fluids were smaller and her brain had started to shift back in to place. The next MRI is Friday at 2:00 pm. They haven’t imaged her spine in over 5 months so we need to go in for that. PRAISES • To God be the glory for everything! • Even though the last few weeks have been terrible, they could have been a lot worse! • Our army of prayer warriors remains strong and we thank God for each of you! Please pray for…. • The MRI on Friday. That she would be protected while under sedation and that the results would once again reveal miracle healing and absolutely no disease! • Her brain to move back in to place and not be shifted anymore! • Walking and eating. She is frustrated with her limitations and quite frankly we just need some things to be easier. • Clarity and focus. That she would be able to learn and do more than just play with toys and watch TV. • School. Not even sure what’s best for her now but we would love to get her back to her preschool just like all of the other kids are doing right now. I don’t really have anything very deep to say. Really just kind of empty. We’re still just surviving. We can barely plan ahead until lunch time much less next week. Last winter after the episode in January, I had written about waiting to see what our NEXT would be. All of this was not really what I had in mind. It is defeating to know you are headed back to the Emergency Room. You know you will have to tell your story and describe your symptoms a hundred times. Nothing is fast. It is hurry up and wait. Its ten hours before you feel like you make any real progress. However, it is good to be at a place that you feel comfortable with and like it is your second home. We know they are doing the best that they can. You know you have spent way too much time there when you walk in to your room on the 6th floor at 1:00 am and your nurses have three bed’s completely made up and waiting for you. Then you find out that one of the nurses you’ve known for over two years has been on the launch team for your church’s new campus. We are more than ready for the big stuff to be completely resolved. Yet God still remains and reveals himself in the small stuff! Still standing with our Shining Light of God’s Promises and praying for continued miracles! Blessings! Mike, Kerri, Ellie, and Sadie Taliaferro
Posted on: Wed, 24 Sep 2014 15:07:07 +0000
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