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Wednesday, August 31, 2016

A Day in the Life (except really a couple of weeks...)

August 31st is here, and so ends SMA Awareness Month.  I was determined to get a final post in, and true to my nature, I have waited until the final hours.  The past weeks have felt more like a month or two, and I'm not quite sure how we fit everything in!  So instead of being all thoughtful and organized, I'll just walk you all through our exciting lives since my last post (when Isaac turned 2 1/2, just three weeks ago!).
Experimenting with sound- homemade instruments!

Isaac's appointment at Children's went fine, really well in fact.  He only glared at a few strangers and he actually spoke up a few times to let his sweet voice be heard by those well known to him.  We didn't have to make any changes, and he got a new mask/headgear for us to try.  We were excited about the fit of the headgear, because nothing goes between his eyes or on his forehead, but we were not excited about the giraffe-like print.  For one, not many people look good in yellow with brown polka dots. For another, why does any headgear made for a child need that much dye?  And for another, why do I need my kid to look like a poor excuse for an animal?  When Natalie was 2 1/2, she wanted to wear dresses and skirts and leggings and other normal things that kids wear.  She did not want to dress up like an animal every day, why should Isaac have to?  Anyway,  I have a complaint planned to the makers of the mask, but I don't imagine they will be changing the print anytime soon. I think it took them years of planning just to manufacture this one!

That evening, when we got home from the appointment, I noticed that the SMA Facebook world was going crazy over some "Expanded Access" clinical trial business.  I have never put much thought into these trials because Isaac didn't qualify.  But friends of mine whose children are older than Isaac, or as bi-pap dependent as Isaac, were commenting that their child would qualify for this expanded access, and they all seemed excited.  I wasn't sure what to think or even where to look for more information, and then my phone rang.  My friend Stephanie was calling to get me up to speed and to find out if anyone at Children's had mentioned the program.  What it boils down to is this: Biogen is a company that has been trialing a drug called Nusinersen to treat SMA Type 1.  The trial had gone so well that they ended the trial early with the goal of pursuing the Expanded Access Program (EAP).  That means that the drug is still not approved by the FDA, but that the criteria for getting the drug is opened up to more people.  Biogen's criteria for this EAP is that the person has to have infantile onset SMA and have been diagnosed before the age of 6 months.  So, pretty much everyone with Type 1.  There are no age restrictions, no bi-pap dependency restrictions, and they have enough of the drug for basically everyone with Type 1 in the world.  This is a treatment, not a cure, and there is still no guarantee that Isaac would benefit much from it.  Some kids who have been in this trial from a very early age are reaching motor milestones, some kids are getting stronger little by little and are able to use their ventilators on lower settings.  Children's Hospital was one of the clinical trial sites, and they are in the process of applying to become a site for administering the drug as part of the EAP.  The drug is a spinal injection and requires anesthesiology and at least a night in the hospital.  It is possible that sometime this fall, the drug will be available for Isaac and for every other kid with SMA Type 1 to try.  What? Seriously? What does this mean?  Jeremiah and I stayed up late that night, talking realistically about what it might mean, what it could mean, what we hope it means.  First of all, it means some serious fundraising to pay for the hospital costs- the drug is free, but the associated costs will not be covered by insurance (it's still an experimental drug).  Our thought on that was, who cares? Send us the bill, we will find a way.  Second, we thought, what if this buys Isaac some time? What if a cure is only a year or two away, and this treatment could keep him just strong enough to stay with us until it's here?  Two years ago, we would never have thought that a viable treatment was coming down the pipeline.  Then we started talking about what we hoped for, our big dreams for Isaac. What if this treatment does help him get a little stronger?  Jeremiah said he would love for Isaac to be able to eat something, to swallow it.  I said, "what if he got strong enough to be able to sit up a little bit, and control a power chair?"  And then "What if he got strong enough to be able to say our names?  If he could say "Mom, Daddy, Natalie...?" As we were talking, it struck me how small and unimpressive those goals would sound to most parents, and how insurmountable they sound to us, and how it only took a tiny, far-off glimmer of hope for us to speak those dreams aloud.  To speak, to eat, to move.
Zonked out on the drive home after his long appointment


That Saturday was the candle lighting for SMA Awareness. We lit our candle for Isaac, and another for Holly (my friend Britten's angel baby), and I was so touched by all of the pictures that people posted from all over the place, wherever they were, in honor of Isaac.  I went to bed smiling, and woke up smiling and teary eyed when I read all of the comments and posts.  Thank you, each and every one of you, for your support and prayers and love and light.


After that weekend, my friend Erin came to visit with her sweet baby, Magnolia. I can't even begin to tell you how sweet that baby is, so just believe me she is just happy and beautiful and has the best smile ever.  Erin and I haven't seen each other in four years, but it's one of those friendships where we can just pick up and catch up and enjoy every minute of it.  Isaac and Natalie loved having them here, especially Magnolia.  Isaac spent most of the day watching her, obviously getting a kick out of her smiles and sounds and excited arms that she hasn't quite gotten control of yet.  They flew back to Portland, and I hope I get to visit them there someday!

The next week was a blur. Working, Jeremiah getting sick again, then not working (he had a terrible cold and probably viral conjunctivitis, so I stayed home from work to keep him quarantined), crying while I washed the dishes because I was so stressed out about him being sick again and learning that our food benefits were cancelled because I had been working so much that I made enough not to qualify anymore, only to have another week of not earning enough to pay the bills, and then calming down because we have managed for the past two years to pay the bills and get plenty to eat and to do some amazing things and God takes care of birds in the fields so I should just finish cleaning the kitchen and take a deep breath and calm the heck down.  So I did. Then Jeremiah went to the doctor, got some antibiotics for yet another sinus infection, a diagnosis of another ulcer, and a prescription for an abdominal scan to determine if he needs his gall bladder removed.  Sigh.  We finally tried that giraffe mask, and I decided that I hated it less than I thought I would.  Except then, about 24 hours after we put it on him, Isaac got a mucous plug in his nose and started to turn blue on us.  Jeremiah and I got him stable in what was probably less than a minute. We attributed the plug to waiting a couple of hours after Isaac woke up to do his breathing treatment.  I hadn't slept most of the night because Isaac had slept terribly (he was constipated), so when Isaac woke up, I plopped him, Natalie, and recovering Jeremiah in front of Saturday morning cartoons and went back to bed. None of us needed that adrenaline rush.  It had been a year since we last saw his lips that color.   That afternoon, he did it again, another rush to get the suction machine, to clean a plug out of his nose, to cough him, to get him stable.  Later that day, Jeremiah had to give Isaac a suppository to help him poop, and the sweet kid fell asleep on the floor, watching a bike race with his daddy.  When he woke up, we loaded him onto his stroller and walked up and down our block, up and down, up and down, trying to calm our nerves.  We put him to bed in his old mask, and he was obviously happy to have it back, determined to try the giraffe again on Sunday.  On Sunday morning, I took the kids to church (Jeremiah had been told by his doctor to just 'stay away from people' while his immune system tries to recover), Isaac in his spiffy new mask, and to the farmers' market downtown.  He was in a great mood when we got home, and Natalie wanted to play with him.  We got him situated on his sheepskin rug on the floor, Jeremiah was resting on the couch, and I was doing laundry and dishes.  Natalie was reading books to Isaac, and at one point she came to the kitchen to tell me that Isaac didn't like the books she was reading.  I told her he was probably whining because the stories were over, like he does whenever someone finishes a book.  She said "Oh...okay" and gave me a forced little smile. A couple of minutes later, I had finished fighting with our washing machine (an ongoing battle of 'to spin or not to spin, no seriously, just freaking spin') and came back into the living room to check on the kids.  That's when I heard Isaac's telltale cry, the "help me, this is horrible" whimper.  Natalie was trying to make him happy with toys, but she didn't realize that when he feels like he is suffocating, no toy is going to make him happy.  Jeremiah, dozing on the cough not two feet away, couldn't even hear Isaac's quiet, distressed sounds.  Isaac's lips were dark purple, his eyes were closed, but at least I could hear him. I rolled him over as I shouted to Jeremiah, who literally jumped off the couch and to the suction machine before I could even finish saying "Isaac's not okay."  Thank God Jeremiah is quick on his feet and thinks clearly at times like these.  He told me to get the pulse ox, the cough assist, turn up the oxygen- all things we keep within a few feet.  Natalie quietly slipped away into her room, then peeked out of her doorway while we got Isaac cleared out, breathing normally, and relaxed.  We thanked Natalie for telling us that Isaac wasn't happy, and she said that she knew he wasn't because he had that funny look in his eyes.  We told her if she ever sees Isaac's lips turn that purple color, or she sees that look in his eyes again, she needs to tell us what she sees, to tell us more than that he isn't happy, so that we can help him right away.  We haven't kept his pulse ox on him during the day for almost two years, but I can tell you it will be a while before I go fight with the washing machine for five minutes, thinking Isaac is happily entertained in the next room.  One minute intervals or the pulse ox is on.  Yep, this is life at our house.  Needless to say, we now blame the giraffe mask for those three plugs in one weekend, all in his nose.  The nose piece didn't fit quite right, the medium size was too short, the large caused a really high amount of air leak.  We will try it again, someday, for short periods of time. Someday.
Please note the brown polka dots, which aren't even giraffe print.
 Also, notice his awesome hair- I liked that I could mess it up without a strap being in the way.

The rest of the week was fairly uneventful, if I recall correctly.  By this time, we figured Isaac had probably caught a cold, though it didn't seem too bad (normal heart rate, oxygen, and lung sounds, just extra gunky in his sinuses). Last Friday, after Jeremiah's ultrasound/abdominal scan, my dad came down from Estes Park to help us drive up to their house for a long weekend.  I have wanted to get up there to stay all summer, and finally the stars aligned. We arrived Friday, late afternoon, and unpacked, only to need to do another impromptu breathing treatment on Isaac, whose oxygen only got down to 80% this time!  Victory!

On Saturday, we took the kids fishing at this little trout pond that's just a few blocks from my parents' house.  Please watch this video, it's hilarious.  I had just said the words "Okay, it's time for us to leave," when Jeremiah shouted "we got one!"  He and Isaac reeled it in, and the rest is history (the fish is history too, Jeremiah cooked it for dinner that night).  I only wish I had gotten a better view of Isaac's face the moment after the fish flopped onto his chest...

Later, I took Natalie on a trail ride up at the YMCA.  It was a beautiful day, and a nice ride, but Natalie wanted to know why the guide "just won't stop talking."  When we got off the horse, she said she felt crooked.  I told her I felt crooked too, and that was when we decided we won't ride a horse together again.  On Sunday, we went to Mass at the absolutely beautiful church, Our Lady of the Mountains.  We went out for brunch, then home in time for Isaac to take a much needed nap.  On Monday, we went up to Rocky Mountain National Park.  Jeremiah pushed Isaac all the way around Bear Lake. Natalie informed us that she does not like the national park, because it has too many trees, like a forest, and there are bad creatures in the forest, like snakes and bears.  She liked Sprague Lake better, fewer trees, flatter.  Anyway, it was another beautiful day, perfect weather.  We had a nice picnic, Isaac fell asleep on the walk around Sprague Lake, and Jeremiah and I wished we could have walked around it another 4 times. Nurse Jessica drove up on Tuesday to spend the day.  We wanted to take Isaac swimming at the YMCA, but thought we would start the morning with another trip to the park to walk around the lake again.  We investigated the accessible backcountry camp site, with Jeremiah and I day dreaming of what we would need to make a night of camping happen- batteries, oxygen tanks, big tents, air mattresses, etc etc etc.  That was about the time Isaac started to whine.  We thought he wanted to fall asleep, so Jessica suctioned him and we went about our way.  We got back to the parking lot, where we planned to have another picnic, and suctioned him again.  He had so much saliva and mucous that we just couldn't get it all out, and eventually he started to turn colors again.  There we were, in the parking lot, in the national park, praying that the portable suction would hold its battery power, while Jessica held Isaac's head and coughed him, I suctioned and suctioned and suctioned and suctioned, Isaac gurgled and cried and gurgled and cried, Jeremiah kept us up on his numbers and unpacked equipment, turned up oxygen, got out our supply bag, my mom dug through the bag for a different suction catheter and the afrin (his nose was bleeding again) and kept an eye on Natalie.  I couldn't believe how much we suctioned out, how much Jessica had to just reach in his mouth and help him get out because the suction machine couldn't keep up.  All the while, people walking by, cars driving past, Natalie telling us that Isaac is so mad because of the boogers.  And once again, Isaac stabilized and was just fine.  Thank God Jessica was there, thank God my mom was there, that the battery held up.  We packed up and drove back to my parents house, got everything charged up, and relaxed a bit.  Sort of.  We had planned to go home late that afternoon, but opted to go earlier so that Jessica would be able to help us at home.  When I told Natalie that we were going to pack up to go home, she replied "But, I thought you said we were going swimming..." She understood, however, and decided it would be more fun to go swim at the rec center sometime, where she can play and touch the bottom.

The whole drive home, I had this tight bundle of nerves instead of a stomach, and my heart was pounding until we drove through Longmont.  Isaac did absolutely fine on the drive home, during his treatment that night,  Wait, last night. That was just yesterday. Jeremiah worked off some adrenaline by building part of our fence and going for a bike ride.  And then we all went to bed, and slept.

That brings us to today, the last day of August!  It was a long and eventful and memorable month. Our trip to Estes Park was stressful, but our daily lives are stressful. It was also a lot of fun, and so wonderful to just spend time with my parents and brother, to see Natalie ride around on my brother's lap in his wheelchair (that hip surgery business is no joke) and play with the dogs, to see Isaac catch his first fish and have daily sword fights with Grandpa at the dinner table, for my mom to bake with the kids, to see my aunt and uncle, and for all of us to just get out of our house and into the mountain air.  

I saw a woman at church on Sunday, who I noticed because she was striking in her manner and so beautiful.  She was probably 65 or so, with long white hair, dark blue eyes, high cheekbones and prominent jawline. She had the most serene look, with a smile resting on her face as she watched the altar.  Then, I saw her on Monday at Sprague Lake, greeting us as she and her husband passed us with a sweet 'good morning' and that same look of quiet joy on her face.  I saw her a third and final time, hiking around Lake Estes as we drove out of town. She was walking up an incline, face to the wind, eyes half closed, and her lips relaxed into that smile.  I took a moment to pray for her-why else would God put her in my path three times in as many days- and to wonder about her story.  I turned my attention back to Isaac for the rest of the drive home, but I kept thinking of her as I tried to fall asleep last night.  I had this feeling that she has known significant pain, suffering, stress, and trials, just as many people have.  But somehow she has come to place of joy, or perhaps she never left that place, despite anything else that might have happened in her life.  It is my prayer, for each of us, that we can endure our suffering with grace, use every opportunity to share a smile, and to feel joy in the presence of God, everywhere that we find Him.

Thursday, August 11, 2016

Isaac is 2 1/2!!

I am so happy to be celebrating today!  Isaac is 2 1/2 years old!  We are grateful to be celebrating this milestone, and we are able to because of so many people. I am grateful to Jeremiah for all of his sacrifices and bravery, for his quick-thinking and his planning ahead.  I am grateful to Natalie for her thoughtfulness and love for Isaac, for her silliness and willingness to help him and entertain him.  I am grateful for Isaac's nurses, especially Ele and Jessica, who both helped to save his life, and who love him and made me finally feel comfortable enough to leave home and go to work.  I am grateful to the emergency response teams, for helping to stabilize Isaac when he needed them, and for listening to us and helping us to get what he needed.  I am grateful for the muscle team at Children's Hospital Colorado, for being supportive, informative, helpful, and genuine.  I'm grateful for our parish, Guardian Angels, which has become like an extended family for us. We still have friends who make us a meal every single week, and parish members who step in to help us financially just as we are about to be late with a bill.  I am grateful to our friends, who celebrate Isaac and see him for who he really is.  I am grateful to our family, who continues to support us, love us, help us, and pray for us. I am grateful to God, for granting us more time with our son than we ever hoped.  And I am so grateful to Isaac, the strongest, sweetest, most handsome little lion, for being his wonderful and perfect self.  I'm also grateful for the unprecedented 6.5 hours straight that he slept last night. Thanks sweet pea, that was a nice surprise.
The birthday boy!

We had a really nice afternoon celebrating with friends, The Goulds, at their house.  My friend Renee made a cake (with 2.5 candles), and her oldest son picked out balloons and suggested they hang them up high so Isaac could see them.  All of the kids played with balloons, which Isaac really enjoys.  They had also gotten Isaac a birthday present, an awesome, circular, twirling xylophone type toy with a 'mallet' that is light enough for Isaac to hold and move around.  He might have loved it even more than the chocolate frosting, which is saying quite a lot.  Isaac loved going outside and watching the chickens peck around the yard, the dogs wrestle one another, and he got to hold a tiny 2 week old kitten!  He had a great afternoon, and Natalie is spending the night with them (her first non grandparent sleep-over!).

Natalie holding a kitten

Cake and his new awesome toy!

Yep, dude, that is a tiny kitten on your chest

Polka dot balloon!


Tomorrow is Isaac's quarterly check-up at the muscle clinic, which means we have another long day at the hospital.  This Saturday is the annual Cure SMA Candle-lighting event.  We light candles all over the world in memory of those who have died, and in honor of those still fighting like lions.  Please, light a candle this Saturday at dusk, and say a prayer for Isaac. It will take only a moment!


Just another sword fight with Daddy


Tuesday, August 2, 2016

Sheepskin Sheepskin Baa Baa Baa

I would like Sandra Boyton to write us one of her classic children's books with the above title, though the contents might disturb those young fans of her ever present sheep...

Here goes my SMA Awareness spreading of the day:

I go a little bit crazy over sheepskin rugs.  Isaac received his first little lamb in his care package from CureSMA way back in June of 2014.  They are included in every care package because they help regulate temperature (hello, wool!) and reduce pressure sores.  Ever since then, Isaac has spent most of his life laying upon a sheepskin. After a few months of using his first one, we called CureSMA to ask where we could get a second. He loved it so much that we didn't like waiting for the first one to hang dry (we are talking days, even in the dry Colorado air).  Our friends at CureSMA were very generous and sent us a second one.  As it turns out, Isaac outgrew that little sheep, and it was no longer doing the trick for playtime on the floor (especially in the winter, when I wanted to curl up on the sheepskin with him). My parents found a 4-sheep rug at Costco and brought it out to us around Christmas of 2014.  Commence falling in love with playing on the floor. We folded it in half so Isaac gets extra cushion, and so it doesn't take up the entire width of the living room (my dog is afraid of it and won't step on it, so it's better to fold it than to have him leaping over Isaac all of the time).  Isaac still slept on his little sheepskin, with his legs sticking off the end.  It was working just fine, until I went to Ikea last year (also around Christmas, this tie 2015).  Guess what Ikea had? Four-sheep sheepskin rugs!  Guess what I bought?  Another rug!  This one I brought home and snuggled with on our couch for a few days before handing it over to Isaac. We cut it in half, and lo and behold! A sheepskin large enough for him to sleep on!  And such decadence, one half for each crib (he has one in our bedroom for night time, and another crib in our living room for naps and breathing treatments). We still use his little sheepskins, because they hold up incredibly well to daily use and frequent washing.  One of them is on Isaac's chair for his stroller.  The other one, I confess, is all for me.  I put it on the floor by Isaac's crib last winter, because my feet would get so cold standing on the wood floor when I put him to bed or roll him over at night.  Forget you slippers!  Seriously though, I often had a hard time finding both slippers in the middle of the night, and the little sheepskin makes my nights so much better.

Is that all, you ask?  Oh no, no, no, no.  This just brings us to yesterday.  Yesterday, I went to Costco, just to get, you know, some kitty litter and blueberries.  And there, between the winter clothes and the mattresses, were The Sheepskins.  A whole pile of glorious white, cream, brown, and what can only be described as a grayish agouti rugs.  I walked past them to get the cat litter.  I may have stopped so Natalie and I could pet them.  I may have started to fantasize about laying down a fresh, clean, grayish brownish agouti colored rug, taking up the old one, and washing it.  It has been used every single day for a year and a half, and it could use a break.  Here I picture sending it to The Emerald City to be shampooed and dried, but a laundromat and the cat brush will have to do.  And so, I brought home another sheepskin rug, a darker colored one that I pictured accenting our carpet so nicely.  On the drive home, I was startled every time I checked my blind spot, thinking that the rug on the backseat was my dog or some other large animal.  Once home, I threw it over our chair, where it continued to startle me all evening.  Jeremiah said it looked like a giant rabbit (see? agouti!).  Jessica, the nurse, was very excited about the rug this morning, and decided to lay it out for Isaac.  He was not as excited as I was, he probably couldn't have cared less that it was new or a different color. I left for work, dreaming of cleaning the old rug, of switching the two of them out, like you might with a door mat.

I returned home, about 4 hours later, to see Isaac playing down on the rug with his Occupational Therapist and Natalie playing with some My Little Ponies she got for her birthday.  I stepped over the rug and stopped.  There, on the lower right sheep, was a brick sized spot of completed flattened wool.  I asked "What happened there?"  Jeremiah replied "Bubbles.  The entire container of Ninja Turtle bubbles. Well, there's maybe a half inch left in the bottle."  It is easy to picture Natalie, perched on the edge of the new rug, blowing bubbles for her little brother, not noticing that she had accidentally tipped over the bottle.  Jeremiah had soaked up what he could, but there was so much liquid it had actually soaked into the skin of the sheep.  Five solid minutes of rinsing seemed to get out most of the suds, and it will be dry in a day or two.  So, it had 24 hours of pure glory, and then it was baptized, with bubbles, into the fold of well-loved sheepskins.

It's likely that you just read the word 'sheepskin' more times in this post than you have in all of your years combined.  And that is just a little part of our lives with SMA.  Baa.

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!