This ain't no April Fools

Chris here. Well, it's been an exciting day! Let me just first say "YAY SUNSHINE". It has been great to go from inside to outside in a T-shirt, feel comfortable and be all squinty because the sun is too bright. I think I forgot how to process vitamin D. That has been a great part of this trip in itself - how sad is that? So far, what we have seen of St. Louis is a bunch of hospitals and higher education places like universities, science museums etc. Given the purpose of our trip, it is actually quite comforting. Feels like we are in braindom. I will say that I think this city was founded by the 3rd little pig - there are a lot of brick buildings... Another interesting thing; we parked at a parking meter that said "first 6 minutes - 1 nickle". I had to chuckle. You need to change a $20 bill for the first 6 minutes of parking in Seattle! Things are cheaper in St. Louis. No deals on spinal surgery though. That's o.k. I'm not interested in the discounted version of this.

Crisis of the day: Fiona's Leapster broke. I can hear the gasps of despair from those of you who know Fiona's addiction to all things video. Bought another. No-brainer there.

On to the appointments. Children's Hospital is beautiful and organized. From the start, we felt very well taken care of. We started at 10am (8am Tacoma time - worth noting...) with a video explaining the procedure. No surprises there, only confirmation that we have made the best choice for Fiona. However, part of the video included live footage from an actual selective dorsal rhizotomy. That was great. It was the missing piece. I have tried to visualize what will actually be done during the operation, so I was very pleased to see it. I will say that the "snipping" of the rootlet part, kind of made me queasy for a minute, but it is what it is. Information is power. No one ever said it was all sunshine and roses. I think the one thing that troubles some about this procedure is that it "is permanent". You snip some rootlets (nerves) in the spinal cord, you cannot go back and sew them up. For all those who might wonder where my head is, I will say that Fiona's tone (spasticity) - the part that keeps her legs in a charlie horse is permanent too - unless you do this procedure.

After the video we spent a couple of hours in a physical therapy evaluation. The staff was wonderful and Fiona was all smiley the whole time. This is not usual for Fiona especially after a long flight, late night, strange place, strange people scenario. They tested her range of motion in various muscle groups and took angle measurements. She had to lie on her back for a while, then on her stomach and she cooperated with a smile through it all. Then the PT who will be providing therapy to Fiona and training me during her hospital stay arrived. Beth proceeded to give Fiona the GMFM test. We've done this before. I never really paid attention to the acronym before but I think it means Gross Motor Fine Motor. The PT started with the most difficult stuff and worked back to the easy stuff (only gross motor). SO SMART when working with Fiona. They video taped the whole thing, so that her functionality before and after the procedure can be documented. I feel as though she was at her best physically and emotionally today, so that is a really great baseline to have.

Fiona being "Tested" by Beth, the PT

From there we went to the cafeteria for a quick lunch before our appointment with the doctor. I mention our 20 minute lunch because Fiona has been loving her mealtime experiences lately. Today it was her version of devouring a rice crispy treat. Ever since weaning off the baclofen (the oral medication she was on to treat her spasticity), she has been more interested in food. No, she is not eating, but you have to know her to understand the subtle changes in her demeanor. It is a big deal for her to be enthusiastic about sharing the same space with people who are eating. She will not need Baclofen after this procedure. I can't be sure, but my feeling is that she was on enough baclofen to dull her senses, but not enough to address the tone in her legs.

So Dr. Park was a very nice, communicative person. Pretty much unheard of in the realm of brain surgeons! We had a few questions for him, and he took the time to explain and draw pictures. We actually didn't have a lot to ask him, probably because we had read so many medical journals about the procedure and many were written by him. We had curiosity type questions. We joked about asking him his favorite color and astrological sign, or does he sweat during the surgery and who wipes his forehead? All joking aside, we had done our homework and both Doug and I think scientifically, so the reading and the research was fascinating and enjoyable even with all the jargon. The "joy" part really came from reading the studies that showed the positive outcomes, and also from reading the criteria that Fiona fit so perfectly. We understand exactly what he will be doing to our baby, and what we need to do to help her to recovery and beyond. She and we have overcome much worse, and that is what will give us strength and ability moving into the next year.

Dr. Park & Fiona

Dr. Park gave her a few little tests of his own. Tested her reflexes, which showed tone. Aggravated her muscles into clonus (shaky feet as I call it), which showed the evidence of tone. He wanted to know if there was any difference in ability between her right and left side. I said there was, but I can never remember which is which. I felt stupid. He smiled and said "so I guess it's not so noticeable". He had her move her fingers at him like waving hello, then having her touch her index to thumb only, moving faster and faster. She was ON! The best part was HE seemed pleasantly surprised with her fine motor ability. Like he didn't expect it. That was a great feeling. Same thing happened with toe wiggling. She couldn't do it when he asked, but then he took his i.d. card and hovered it over her toes, did a little demo for her, and asked her to repeat. Those little piggies did great! Toes up, toes down, spread 'em wide, bring them together. We were all a little surprised about that. I think the doc even said "wow, she can do that".

"Is THIS her arm?" Nicole, the PA

"No, THIS is her arm!" Dr. Park

So we finished up the appointment and he watched her walk out with a one-hand assist, and then I got her to show off her great balance with her special toe-crouching-5 steps-then-crash extravaganza. It was good thing we did that, because the doctor went from saying he was pretty sure she could achieve independent walking at home, while using the assistance of a cane in public, to "I really think she will be able to walk independently". It is pretty remarkable for a surgeon to go out on a limb and make statements like that, so that is exciting. But don't worry, I have enough demons in my head to keep me grounded. The trick is to remain positive and hopeful for the best outcome possible without turning the expectations into some kind of infomercial-perfect scenario.

From there, we went on to get an x-ray of her back, for the purpose of isolating L1. Really hi-tech. Radiologist counted down from her neck and then used a sharpie to put a big "X" to mark the spot. Now we have to get creative with bathing, because that mark has to last until Friday morning.

To Big Fi in Australia: We got the first surgery on Friday!

Per i parenti italiani: Tutto bene. Sentiamo che siamo nei "mani buoni". Spero che potete capire tutto quello che ho scritto. Forza Giovanni! Siamo stanchi ma contenti.

We really miss Maddi. This is the first time our family has been separated from each other, or rather that the 2 girls have been separated from each other where 2 parents go with one. She is doing great with grandma, and even called to talk to Fiona. It was cute to see them having a little conversation. How were the stuffed animals doing, was the topic I believe. Can't wait to be back together again. The more time we spend in this process the more we realize how difficult it would have been to have her here. Not because she is difficult, but because they are difficult together, and none of this would be fun for Maddi.

Fiona chatting it up with Maddi.

Well, that was our day. Tomorrow is a free day. We have simple plans. A visit to the arch, a few photos and something fun for Fiona. Oh ya, and a big sleep in for all! Stay tuned...

Some random night shots of St. Louis. (Hand-held D3!)