Monday, August 1, 2016

June, July, and August? What?!

Summertime!  It's here, it's in full swing, and it's already starting to wind down.  August is SMA Awareness month, and a few weeks ago I thought "Oh, I should post something everyday on our blog in August."  Tonight, as I realize it's been almost two months since I managed even a "hello," I am doubting my commitment to the cause of Spreading Awareness via the internet.  Let me try to catch you up on what we have been doing all summer, and if I have time I'll make you all more aware.
At the YMCA of the Rockies for the day!

In June, the whole Boostrom clan (sans my brother-in-law, Chris, who is a surgeon and was needed back in Iowa to do stuff that can't be done by just anyone) came to Colorado to celebrate my parents' 45th wedding anniversary.  Everyone stayed up at my parents' place in Estes Park, so we had some lovely days up there.  Jeremiah missed most of the action, as he was recovering from pneumonia (or rather, in the throes of pneumonia, now he is recovering) and had no energy to even sit upright for the car ride up to the mountains. He was so bummed, because he had been looking forward to a few days in the mountains with our family for months.  It was great to have my family here, though, and Natalie had her first sleepover with her cousins.  One day, as the nurse and I got Isaac ready for the day trip, Natalie packed an overnight bag and said "Mom, I'm going to stay at Grandma and Grandpa's tonight, with my cousins."  Needless to say, she enjoyed every minute of those sleepovers. And we only had one kid to put to bed those nights!  It was generally exhausting, driving back and forth to Estes Park, working as many days in there as possible, and keeping up with Natalie and Isaac while trying to keep Jeremiah resting and recovering.  Thankfully, my family is understanding and wonderful and goes out of their way to be helpful.  They came down to see us several times, even though it meant extra driving on top of the road trips from Iowa and Montana!

Mini-golfing with Nurse Jessica at the YMCA

Painting a monster mug for The Gruffalo storytime!

Watching his cousins feed the ducks by a coffee shop in Estes, with Grandma Bonnie by his side

Oh just hanging out with his big sister, watching cartoons on her bed :)

July was just nuts, in a mostly good way.  We were up early every morning to watch the Tour de France.  I didn't get up as early as Jeremiah did, but he and Natalie saw just about every minute of it (well, Natalie saw a lot of Jake and the Neverland Pirates on the iPad).  On the July 4th, we participated in the Mead Bike Parade, which was so much fun and so very hot.  Natalie's bike is still decked out with red, white, and blue streamers. Isaac got to hold onto some sparklers (there is a short video at the end of the post).  Jeremiah and I celebrated our 5th anniversary with dinner from our favorite pasta place in Boulder, which I had picked up when I took Natalie to Boulder for her 4 year check up.  We ate dinner as a family, with Jeremiah's mom, and it was really nice.  We both felt a little nostalgic/anxious, because it was on our anniversary last year that Isaac had his first helicopter ride to the hospital.  Not the most pleasant of memories.  Anyway...on Natalie's 4th birthday, we took the kids to a splash park.  I had seen a great idea for fitting a bath chair on a moving cart so Isaac could go in the water as well.  We wrapped his ventilator in a plastic bag, strapped his bath chair to the moving cart, and went for it!  Natalie had so much fun rolling Isaac around.  He was not very happy when she pushed his face into a stream of water, but he came around and laughed and enjoyed the experience.  After the splash park, we took them to Build a Bear, which was a new experience for all of us.  Thankfully, Isaac's nurse had been there before, so she walked us through the process. Both Natalie and Isaac chose dragons.  Natalie's came away dressed in a butterfly t-shirt, a headband, and a sparkly tutu.  Isaac wanted nothing to do with dressing his dragon and said no to everything possible accessory.  He giggled when I put some sparkly black dress shoes on his dragon, but did not want us to leave them on. He finally settled on a stuffed banana, but he insisted on holding it himself.  He is a funny kid.
Enjoying a sucker at a birthday party, all decked out in his Postal Service yellow jersey (in honor of the Tour de France)

Our July 4th homemade playdough experiment!

Our beauties at the splash park for Natalie's birthday!

Walking by the river with the family :)

This past week, I took Natalie and Isaac to Vacation Bible School.  I have great memories of VBS, so I really wanted Natalie and Isaac to go.  Isaac isn't quite 2.5, so he isn't technically preschool age.  But Natalie's preschool teacher orchestrated the whole thing, so she gave us the okay to bring Isaac as well.  I stayed the whole time, and Isaac's nurse was also with us.  To be honest, I was a little worried that 3 hours a day for a whole week would be too much for him, that he would get overstimulated, overtired, etc.  But Isaac had so much fun! He made friends, especially with two brothers who almost fought over who got to help him color.  I loved seeing him interact with other kids.  I took a couple of minutes to introduce him to the class, to explain briefly what his machines were for, and to tell the kids that he is a smart kid who understands everything we say.  Within about 10 seconds, Isaac was surrounded by kids who wanted to tell him their names and say hello and ask about this and that. He soaked in every minute of it, and took really solid naps each afternoon while I was at work.  When he was diagnosed, I put aside thoughts of VBS and preschool and sports.  But last week, not only did I have a dream come true, I was able to visualize what preschool will look like if we get that far.  And I think we just might.  We just might.
Bedtime snuggle time!

Getting ready to sing at VBS with some of his new friends! 

We planned on having Natalie's birthday party last weekend, but Jeremiah came down with the stomach flu (can he get a break, please?).  So we postponed, and had her birthday party yesterday instead!  Water balloons, a pinata, some pirate gift bags, hot dogs, cake, and lots of friends.  It ended up being a wonderful day, and Jeremiah finally felt well enough to socialize and enjoy the day.  Natalie and Isaac both zonked out last night before their normal bedtimes.  Isaac has reached that age that he doesn't always need naps, and when he does nap it often pushes back his bedtime. He also got three teeth in July!  Such a big boy he is, and I am so proud of him.  Natalie has been getting a big kick out of talking to Isaac.  He has learned to say a very good "uh-huh" with a variety of intonations, which lets him tell us exactly how excited he is about doing what he have asked.  He still uses his "yeah'' and his version of "no," in addition to his eye gaze device.
So, randomly, on the day we planned Natalie's party, but canceled it, some friends stopped by anyway.  As they arrived, a man came riding down the street on his horse. We may live in a small town, but I have yet to see someone ride their horse down the street.  Anyway, the man stopped, and his horse was awesome! It nuzzled all the kids, gave Isaac a few kisses and gently nudged his head, and didn't even notice all of the equipment that has made other horses nervous. It was the most random and awesome thing that could have happened that day!

And now it's August. August is SMA Awareness month.  This morning, a pharmaceutical trial for treatment of SMA announced that it had met its goals and was ending the trial phase.  All participants will be able to receive the drug, and they are pursuing the next steps.  It is all a bit overwhelming for me to read, because I don't fully understand what the treatment has achieved, nor what the next steps are or how they take.  If I have it right, this isn't a treatment that would help Isaac to any significant degree, because it stops the loss of the protein that is needed for muscle development.  Isaac has already lost much of that protein. So it wouldn't restore his ability to breath or swallow on his own, nor would it improve his muscle growth so that he could sit up or move his limbs or head. What it means for him and for our family is pretty much inconsequential. What it means for other families, for newly diagnosed infants, for those children yet to be conceived or born, is that when they are given a diagnosis, they may also hear the words "but there is a treatment available."  Not a cure, not a reversal, but a treatment.  I am sure that the efficacy varies, as is true with any treatment of any condition.  It's probably true that not every kid with SMA will be a candidate for this treatment.  But dear God, thank you.  It brings me to tears, to realize that this hope and this prayer, for families all over the world, is becoming a reality.  Here is a link to the press release, if you want to read more about it.

And here is a video of Isaac playing with his sparkler.  I really need to watch a tutorial or something on how to format a blog...

Please continue to pray for us, for Isaac's continued health, for Jeremiah's full recovery, for all of us. Pray for a cure- it could be on the horizon, and your prayers could bring it closer!

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