Wow, the blog has been quite lately. I didn’t realize November was the last time I wrote. I was reading the last post about Korie’s new wheels and realized I never went back and added that she started army crawling the very same week we started using the ZipZac. Maybe it was just a coincidence but I think the ZipZac made her realize she didn’t have to just lay there anymore. I wish I could report that she was cruising the house in it but she’s not. She’s crawling where she wants to go! Even better.
I really came over to the blog so I could give everyone an update on her MRI results. We had tried previously to get it scheduled in Little Rock but it just didn’t work out, so Korie and I had our plane ticket and we were prepared to fly to Boston last weekend. Last Tuesday afternoon the MRI scheduler in Little Rock called me to tell me they could do Korie’s MRI the following day (Wednesday, Jan 7th) if we wanted to. I was in such conflict. We already had our non-refundable ticket. I really, really wanted to see Dr. Warf in person again. But, I felt like the Lord was making a way for us. I was already dreading the long flight just Korie and I. Not to mention the weather in Boston. So we decided it would be best if we just did the MRI in Little Rock, with Dr. Warf’s approval and agreement that he would review the images.
Korie has to be sedated for her MRI because of her age and the length of the scan. She wasn’t on the schedule until 3:45 in the afternoon so this made for a long day of nothing to eat or drink. I was a total mess when it was time for them to take her back. She cried when they carried her away. Then I cried. I told the really nice nurse I didn’t like the anesthesiologist because he called Korie a boy FOUR times! I am sure I was being completely ridiculous but some strange man, who thought Korie was a boy, was about to go put my baby to sleep. And I didn’t like it. She was so kind and assured me she would go and check in on her. She called me about 30 minutes later to tell me Korie was asleep and in the scanner. She didn’t have to do that, Korie wasn’t her responsibility anymore after they handed her off to the anesthesia team. It meant a lot to me.
I absolutely love when the Lord shows Himself to me. All you have to do is look around at His Creation and you know He is there but there are also times when He reveals Himself in such a way that it is unmistakable He is showing me something. Or teaching me something. I got settled in the waiting room, opened my iPad and started in on my daily reading. I went through my OT chapters, NT chapters and then my daily Psalm. There it was. Psalms 112:7 –He is not afraid of bad news: his heart is firm, trusting in the Lord. His heart is steady; he will not be afraid. Then I went on over to Psalm 118 –It is better to take refuge in the Lord than to trust in man. I clung to this verse during pregnancy and now I was finding comfort in it again.
Korie’s scan lasted almost two hours. She did great with the anesthesia and was awake before they even had her in recovery. She was happy when she got to be in her mama’s arms again. Since we had appointments the next morning we stayed overnight in Little Rock.
We were back at the hospital by 9:30 Thursday morning. Our first appointment was with Dr. Ocal, her neurosurgeon. It was no surprise to me she came in and said Korie needed a shunt. She has never been enthusiastic about Korie having an ETV rather than the shunt. She said her ventricles were smaller but the syrinx on her spine had not decreased. She stated the radiologist indicated a significant increase in the size of the syrinx, she did say she didn’t see an increase but it had definitely not decreased. After visiting with her a while and helping her understand how well Korie has been doing she agreed we could give her another 2 months to see what happens. I left the appointment disappointed and confused. But I found myself taking comfort in those specific verses again. And I knew Dr. Warf had the final say.
We sent the images to Boston for Dr. Warf to review. They ended up being delivered on Saturday to the main hospital rather than on Monday to Dr. Warf’s office. It was Wednesday before they located the disc in the mailroom. I emailed Dr. Warf’s assistant on Thursday and she informed me he was out of the office until Monday. Bummer. It looked like I was going to have to wait another four or five days to get his opinion. When I checked my email on Friday morning this was in my inbox:
“Dear Mrs. Stout,
Thank you for sending the images. I am happy to report that, compared to the MRI in September done before I reopened the ETV, the ventricles and the syrinx are all smaller and it is obvious the ETV is wide open with vigorous flow through it. There is nothing further to be done now except repeat the MRI in another 3 months. If this looks stable or further improved I would get another MRI 6 months later (about a year from the last operation in September) so long as she is clinically stable. If it looks good then, she would not need another MRI for at least another year so long as she was doing well.
I am quite happy with this result, and suspect that over time the syrinx will decrease further.
So a couple of things here. 1) To God be the glory. He comforted me through His Word and gave me peace that surpasses all understanding. He has clearly had His hand on Korie. He IS the Great physician. 2) Dr. Warf is amazing. Not only is he a brilliant doctor, but he truly cares about his patients. If he didn’t he wouldn’t have emailed me at 9pm to give me his opinion, which was clearly better than the first we received.
Dr. Rabenhorst, her ortho doctor, squeezed us in while we were in Little Rock so we didn’t have to make an extra trip to see him next week. He did x-rays of her hips and was extremely happy with the way they looked. They are aligned appropriately and in the socket just as they should be. Dislocated hips are common in SB kids, so this is another huge praise.
Korie is really doing very well. She is still army crawling all over the place and is sitting better everyday. We don’t have to see neurosurgery for three months! She will be having bladder and kidney testing in February that will determine if/how often she will need to be catheterized and if she will need medications to relax her bladder.
As always, we appreciate the prayers and well wishes so very much. When you are praying for her please remember to thank Him and praise Him for all He has already done.
Korie was rolling the ball with her sissy!