Yesterday Lexi had an MRI basically as a follow up to the untethering surgery she had two years ago. When we last visited Dr. Raffalli (her neurologist) in January, he still had some concerns about the stiffness of her legs and wanted to check to make sure the cord had not retethered, or we had missed something the first time. We felt pretty confident that she was fine, but we’re always happy to double check just to be sure (remember, we thought that we would find nothing on the first MRI…). This time we decided to scan the brain and spine because we hadn’t done the brain the first time, and that always bothered us and remained sort of a question mark.
So, yesterday Ahren, Lexi and I travelled (very early) into Children’s Hospital for the MRI. She was incredibly brave and handled all of it very well. The last time she had the MRI she was able to drink the sedation drug, but this time it had to be administered via an IV. She did not like having the IV in her hand at all, and who can really blame her?? So, they started the drug and she seemed to drop off pretty quickly. However, when we put her up on the table it was clear she wasn’t completely out yet. She fussed and squirmed while we tried to get her to relax. They administered the second dose in an attempt to get her to calm down but that too was ineffective. They started the scan, but after about ten minutes came in and told us that she was just moving too much. So, we switched to another drug (the same one she’d had the first time). They were able to give her up to four doses, but again, after each dose went in she continued to fuss and move. We were all very concerned that we’d have to come back another day and do it under general anesthesia. Finally, after a half hour and every drop of medication they could give her she settled down enough to get the scan done. All in all, we were in the MRI room for two full and stressful hours. During the scan I sat in the chair praying, while Ahren stood guard over Lexi, reporting to me after each test whether or not she had moved. We were both extremely relieved when the nurse came in and told us they had successfully completed the test.
Once the test was over we went to recovery. We were in there for another two hours as, after all those drugs, it was extremely difficult to wake her up. We tried about 4 different times, and were finally able to get her to open her eyes about half way. She guzzled some juice and snacks (her first thing to eat all day!!) and then fell asleep again. At that point we were finally able to take the IV out, the cardiac monitor and blood pressure cuff off, and take our sweet, sleepy angel home!
She was drowsy and dizzy for a few hours after, but after a good lunch, some juice, and a little Poppy time she was her happy little self again. A huge relief to all of us. It was an incredibly difficult day…it just never gets easier seeing your daughter have to go through such torturous tests…but in the end all is well.
Dr. Raffalli’s office called this morning to let us know the everything in the scan was completely normal!! There is no evidence of retethering, spinal cord deformity, or brain abnormality. She is 100% NORMAL!!! YAY!! What an enormous relief.
Additionally, what’s even better news is that we have finally found a physical therapist who sees Lexi as a whole person!!! She recognizes that every single one of her problem areas is interconnected, and she is working (quite effectively) to make ALL of Lexi work better. And the best part about it is that Lexi thinks it’s fun! She has no idea that she is working when Debbie has her riding the bike around the hospital, or playing on a new scooter. She even looks forward to doing her daily exercises, and often does more than she even has to do. It’s so overwhelming that after three and a half years we finally have someone who has given me real hope that Lexi will be keeping up with the other kids in no time.
As a matter of fact…after just three weeks of PT, Lexi has made tremendous gains in her ability to do things at home (use the potty herself, get dressed by herself, etc.) and she is like a new kid at gymnastics!! She has so much less fear, and so much more strength – it’s really tremendous. You can so clearly tell that her balance and core strength has improved in just three weeks, and that has given her so much more confidence.
We’re just simply bursting with joy.
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