It’s been a fun fall for us at the Johnson house. Lots of milestones, celebrations and fun for all.
Dorian and Wynn celebrated their 1st birthday on October 27th. It was a day filled of memories, hugs, and hope for the cutest little babies on the planet. The weekend before their birthday we had a little party for them. They didn’t particularly like cake or icing, but they soaked in all the attention and everyone snuggling with them all weekend.
On that same weekend our neighbors hosted a Halloween party and they gave us the chance to raise money for the MPS Society at the party. What an amazing time that was! Everybody came in the funniest and most creative costumes, and everyone had an awesome time. We were humbled by the generosity of those that attended the party and our friends that made online donations to the MPS Society. You guys don’t know how much it means to us.
I made an awareness video in late Septmer to raise reaserch dollars for the MPS Society. Here is a clip. Please feel free to pass it along to all your co-workers, friends and family members. The more money we raise for the MPS Society, the more chance we might have in finding a cure for ML II. http://www.youtube.com/watch?v=zM5xQymjNpU
If you donate, please do it in honor of Dorian and Wynn and specify “ML II” on the online donation form at MPSsociety.org.
Stay tuned for more party/fundraising events with us in the spring. We are tinkering with the idea of hosting a poker tournament in the spring, or some other event to get together with friends and raise some money for the good folks at the MPS Society. Fun for a great cause! How can you beat that?
Both babies got their heart meds doses increased since they are a little bit bigger now. Dorian weighs 14.1 pounds, Wynn weighs 12 pounds. Dorian is quite a bit taller than Wynn which makes up for the heavier weight. They’re on their 2nd round of synagis shots (RSV prevention) and are doing well with that. They got their regular flu and swine flu shots (as did Ben and Alex) so now we’ll just pray we all stay flu free this season. Whenever we see you next, Chris and I will be more than happy to do a flu mist/tackle Alex- to-the-ground re-enactment as he kicked and screamed for you. It was ridiculous, but kinda funny looking back.
We have put in a request to increase the amount of physical therapy the babies receive, as well as start speech therapy. Our pediatrician and our auditory therapist recommended it to help the babies not just speak but also it helps them with learning how to chew/swallow well. Wynn does a great job of scooting around on his tummy on the floor. One time he was cruising so good that he played hide-and-go seek with Chris under the leather ottoman/coffee table. Chris didn’t know Wynn wanted to play that game so when he looked around, he was like “Where’s Wynner?” and we found his little legs sticking our from under the ottoman. It was pretty darn funny. Dorian isn’t as mobile just yet. He is much more laid back than Wynn is. In fact, Wynn amuses us for his high maintenance-ness. Dorian is really chill and we are working on him to be a little bit more curious about his surroundings and reach for toys and scoot a little better. Since his joints are very stiff, we assume his lack of desire to move around is because it’s probably painful for him at times. His range of motion is more limited than Wynn’s too. So we are working on increasing his flexibility and making him feel as comfortable as possible while still challenging him to use his body as well as he can.
Ben and Alex continue to be super studs at football. Their team, the Colts, went undefeated all season and were ranked #1 until the championship game this weekend. Next weekend go to the flag football Super Bowl (called the Cougar Bowl) and play the runner-up city champs of Carrollton. Time to get face paint for the babies and cheer on their big bros! I have some pictures here of their homecoming they had last month, it was too cute.
Well thanks to all for checking in on us on occasion and for those that feel like donating a little something to the MPS Society in honor of Dorian and Wynn. We are grateful for so many things. Friends that we have fun with, family we can vent with, the fun things Ben and Alex do, the heartwarming smiles and excitement the babies have in their eyes every day, for Anna being a big help to our family, and for the parade of angels we have coming through the house on a weekly basis (PT, OT, Auditory Therapy, 2x week home respite care, etc). There is big truth in the African proverb “It takes a village to raise a child” and we are so grateful for our awesome village!!