milestones, man. milestones.

it has been a pretty busy few days around here. it started up with ruby turning 2 years old last friday, march 15th. the day flew by, as we were preparing for her big toy story party on saturday & she was also quickly coming down with a nasty cold. since respiratory problems are so prevalent in people diagnosed with SMA, our pediatrician takes any cough ruby has seriously & pretty much treats it right away. so, in addition to running party errands on friday, we also made a quick stop to the doctors office & then the pharmacy to pick up antibiotics before heading to T's sister's & fiancé's apartment building to set up for the par-tay. it was so helpful to be able to set up the party decorations, at least partly, the night before the party.

the party went down on saturday (after yet more errand running, of course!) & it was a great success! it was PACKED. we had around 40 people at the party, including about 12 kids from babies through elementary school. many of our close friends came & it was fantastic to see so many people who love ruby come out to celebrate. it was a quick & crazy party. some of the pictures i have aren't the best because the apartment was so bright (& beautiful!) & I didn't edit them, so hopefully you can make them out okay. ruby got a TON of gifts & it currently looks like toy story exploded in our living took. we had (delicious!) baskin robbins ice cream crunch cake and some snacky-type food. everything turned out & looked great! and I have to give (many, many) thanks to T, Lu, Lisa, & my mom who helped SO much with setting it all up. and also to several of our friends who lent us tables and chairs so we didn't have to sit (& eat!) on the floor. :) last year, after ruby's rainbow party, i said I'd go easy on the big parties in the coming years, but i just don't see that happening anymore. i love planning them & it's a wonderful excuse to celebrate ruby & all she brings to our lives.

ruby also had her two year check up on monday. it went great & she barely cried. yay! she is still on her usual growth curve (10% for weight, 25% for height). no shots either, which was fantastic! basically, it was just a check-in & all is well. the biggest change is she can ride front-facing in her car seat now & use toothpaste with fluoride. like I said, nothing too crazy. but after the last few months we've had, no news is good news for us.

and lastly, ruby moved on up to the next classroom at daycare - the early preschool classroom. I was a little nervous but made sure to put on a happy, positive face for ruby. and she did great! no tears when i dropped her off & when i called to check on her in the afternoon, her teacher said she was having no problems with the transition & she's enjoying getting to know ruby.

so, lots of stuff going on & all of it GOOD. and we like good news. here are some pictures i took the last few days of all the fun we've had.

the details

okay, so i jumped on here thursday & quickly updated about the good news of ruby's confirmed (I guess I should say, corrected) diagnosis. but i wasn't too specific about what that exactly means for ruby. so, here are the details!

basically, people diagnosed with sma can be anywhere on the spectrum of strength/weakness, with type 1s being the weakest and type 3s (or type 4 or adult onset) being the strongest. however, within each type there are people who are stronger or weaker than another person with the same type of sma. additionally, two people could have the exact same genetic make-up (in terms of the smn1 & smn2 genes that are affected) but still have different symptoms and prognosis. there are unknown genetic factors that impact those things. so, as you can see, no two people with sma are the same.

clinically speaking, type 1s never sit up. type 2s sit up but don't walk. type 3s walk but then develop weakness overtime. in ruby's case, because she was taking independent steps at one point, dr schroth has diagnosed her as a type 3. ruby is strong, in terms of her respiratory functioning, which is key. overall, ruby looks really good, considering her genetic male up. within the first five minutes of dr schroth meeting and observing ruby, she had diagnosed her as type 3 and told us she will have a normal life expectancy.

it was the only few minutes of the (very) long appointment that i cried. happy, happy tears.

dr schroth did give us information on potential medicines that we might be able to have ruby try. they haven't been proven to work in clinical trials but they have worked for some people. so we may look at those as options in the coming months. there are side effects & ruby would be monitored closely to make sure she's doing ok on the medicines. if we go that route, I will certainly give an update.

other than that, we were basically sent home with a reminder to monitor ruby's cough, if she gets sick. ruby will likely become weaker whenever she has a respiratory virus but then should regain strength after she feels better again. at this point, dr schroth said that ruby doesn't need a cough assist machine or bi-pap machine to help with her breathing at night and/or when she's sick.

we will continue to work with ruby's PT, lisa, and will take ruby swimming often, which is also really good for her. I also have to call and find out where she is on the hippo therapy wait list. I'm excited to get that started. I think ruby will freak out when she's actually on the horse at first but eventually I think she will like it.

other than that, ruby is a typical (almost!!) two year old. dr schroth made this note in ruby's discharge summary:

"ruby is very smart. the only delay she will have will be gross motor and thus, should be disciplined as any other child, including boundary setting."

noted, dr. schroth. noted. ;)