The last time I updated Emma was getting over a UTI and we were preparing for her MRI. She has recovered from her UTI, although I'm not so sure she doesn't have another one.
Emma's MRI went off without a hitch. They only gave her laughing gas as a sedative and boy she wasn't laughing in recovery. I've been told before the longer they are on the gas the more irritable they are afterwards and she held true to that. She was a GROUCH. It took us about 15 minutes to get her calmed down and Children's requires they drink something before discharging their patients. Emma finally drank a little apple juice and we were sent on our way.
We met with Dr. Stevenson the following Monday. He said that her Chiari was stable as was her syrinx. She has 2 cysts on her spine that appear stable right now but they have noticed a bit of scoliosis. They are just going to monitor it. We will have to have some spinal x-rays that will then be sent to Dr. Tamai (ortho) for review. It could just be that we keep an eye on it. If it progressively gets worse then an action plan will be developed between ortho and Dr. Stevenson. Her shunt was working PERFECTLY! So all is well on Dr. Stevenson's front! PRAISE GOD!!!
It was so much fun to watch Emma enjoy Christmas this year. Last year was delightful but this year was so much cooler. The way her face lit up with joy as she opened each gift, the way she could just lay there and watch the lights flicker on the tree. So sweet! If I could just stay in that moment forever I'd do it in a heartbeat.
New Years Eve was fun! It was low key, had a few people over to our house! We were able to stay in and celebrate with our family and friends! Emma still doesn't like the horns but she really enjoyed the clapper!
We had MM Clinic on Monday the 5th of January. That went well. I was looking forward to seeing Ortho, but he unfortunately had to rush to the OR so we couldn't speak to him. However he did give us the orders for the spinal x-ray to monitor her scoliosis. They've also been concerned about her blood pressure. At all of her visits they take her BP in her leg. She can't feel it and it doesn't bother her there. Its always been VERY HIGH. They referred her to Nephrology (kidney specialists) to make sure that her kidneys are fine and aren't causing her BP to be high.
We met with nephrology today. They don't believe her kidneys are scarred from UTI's therefore pretty much ruling out kidney's as a cause for her high BP. Which is good, but also concerning because we can't figure out why it's high. Right now its running around 114-118 as the systolic number. Its not HORRIBLE but for Emma at the ripe old age of 2 its still high. We need to get it figured out. The NP at the nephrology clinic is going to talk to the doctor that runs the hypertension clinic and get an action plan. Praying we can get it resolved without the intervention of medication. I don't want Emma on another medication let alone a blood pressure medicine.
Thank you all for your love and prayers! We appreciate each and every one of them.
