Another Trip to Children's

Today was hopefully our last trip to Children's Hospital. I think we're done. We're spending lots of money on visits to neurology, genetics, specialists of this, specialists of that, only to hear that "we can't diagnosis her with anything but let's do some tests and see you back in for a check-up in 3-6 months." When your child starts crying as soon as you step into the room to weigh them, you know you've been there too many times.

Today, we met with a neurologist who specializes in movements. While the meeting was encouraging and another thing to check off our list, she again couldn't come up with any reasons for Siahna's delays. She did come up with 2 possibilities of things to test for (which require doing spinal taps) but said that there was probably only a 1-5% chance that these would be a diagnosis for Siahna. One of the possibilities would be a diet changing "fix" that is very structured and monitored by Children's. Although it helps with the symptoms it would never fix Siahna's delays. The other possibility would involve a pill that Siahna would take the rest of her life and would fix everything. She also suggested that we could try putting her on these drugs over a 6 week period, slowly increasing her dosage to a full level, and see if there was improvement or not. This would avoid a spinal tap and would be a clear sign on whether it worked or not and was the cause of her delays. While this sounds awesome, it also involves a lot of serious side effects while her body adjusts to the drugs.

Her last suggestion was to just wait and see, which is what we'll probably do. We feel that over the last 2 weeks our world has changed drastically as Siahna has started responding yes/no to questions and this new way of communicating has changed everything. We are realizing that her "vocabulary" is huge and that for some reason she can now respond to our questions or go get a specific toy when 2 weeks ago she would give a blank stare.

Honestly, I feel like Siahna has made us appreciate life so much more and take less and less for granted. I don't remember Case's first steps, where he was, how it happened (maybe I'm just a bad parent), but I know that Siahna's first steps will always be etched in my mind. Her first words and full on walking will earn her a celebration trip (place TBD) because these are things that we have to celebrate and rejoice in her accomplishments because they are huge.

As we left Children's today, Case asked Jeff is that doctor had ideas on how to get Siahna to walk and talk. Case said he couldn't wait to have her chase him around the back yard and be a super hero with him. It brought tears to our eyes because we can't wait for that day either and rejoice with each step along her journey because she is working so hard at each and every thing she is learning.