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Sunday, May 15, 2016

No catchy titles here!

Hello friends! I hope you are all well and enjoying this beautiful spring.  Isaac is doing great.  After his battle with that yucky stomach virus, he has started putting weight back on.  We are determined to get him back up on the growth chart for weight, but he keeps getting longer and throwing off our plans.  He makes us laugh every day and puts a smile on my face even before I've had my first cup of coffee (that's a privilege that is pretty much exclusive to him, my poor family...).  Natalie continues to grow and become more independent, and her relationship with Isaac brings me joy that I don't know how to describe.  She gave him a kiss the other night when she came over to his crib for just one more bedtime story.  I said "Oh, Isaac, what a lucky boy you are, to have a sister who gives you such nice kisses."  Natalie replied, "And I'm lucky girl, to have Isaac as my brother."  When I read that, I see that it doesn't begin to convey the sweetness and love that those two share. When he calls to her on his talker, she doesn't miss a beat saying "What?" or "Isaac, I'm playing in my room right now,  I can't play with you!"  A couple of weeks ago, Isaac was napping, and Natalie and Jeremiah were playing on the front porch. I went out to enjoy a few minutes of sunshine, and Natalie said "Mommy, who is watching over Isaac?" She always asks us to turn his head toward her in the car, so they can see each other.  And if she hears him whining about something when he is facing away from her, she always says "It's okay buddy, I'm still here, you aren't alone."  She is an amazing person, and I am so proud of her. She takes it all in stride, because she never expected Isaac to be any different than he is.  But she is growing up, and has met enough other kids to know that Isaac is different from them. She is well past thinking he lays down because he is a baby.  This morning, we decided to go to the store after church.  I suggested it, half kidding, but then mentioned that Isaac hadn't been to the grocery store since I was on maternity leave.  He enjoyed his trips to Costco, and it seemed like the grocery store would be equally entertaining.  The grocery store is always the stop on my way home from work, or the quick trip into town while Isaac is napping. On our way today, Jeremiah suggested stopping for a quick lunch. As we pulled into the parking lot, Natalie asked "Is Isaac going to grow up to be a big boy?"  I said "Well honey, he is growing, he's already getting to be a big boy."  She replied, "No, I mean, is Isaac going to grow and be able to talk on his own and walk on his own?"  I couldn't respond, because of the sudden tears in my eyes and the choke-hold on my heart and lungs and voice.  Jeremiah managed to tell her that doctors all over the world were working on it, and that we really hope that someday he will be able to.  Kids will do that, won't they?  Ask you something so innocent, not knowing that it's a question that sits in the back of your mind just waiting for an answer.
Anyway, Isaac got to taste a french fry and smile at some nice ladies who wanted to know if his eyes were as pretty as his sister's.  He was interested in all of the new sights of the grocery store, but seemed more excited about the red straw from the restaurant that he was holding, to which Jeremiah had attached a twist tie from the produce department.  Ah, the simple things. And the Dad things.  If Daddy has something, and he gives it to Isaac, heaven help the poor soul who thinks to separate said treasure from that child.

Isaac had another quarterly appointment with his team at Children's Hospital this last Friday.  Every time we go to one of those, I remember his first one. When we made that first appointment, after his four week hospital stay, we weren't sure we would even be going.  When we made the second appointment, I still felt like we were tempting fate. These past several months, that feeling of dread has relaxed its grip. Three months from now doesn't seem impossible or even unlikely to still have Isaac with us.  But then, I know parents who would have said the same, and tonight they are missing their little one, or little ones, and wishing they could have just one more bedtime story.

The appointment went just fine. Isaac showed off some of his talker skills for the people he knows well enough to want to impress.  He got another vaccine, we increased his calorie intake, and brought home a new type of mask to try. I commiserated with some of our team members about the joys and heartaches of social media as relates to medical care, specifically to the care of kids with SMA- the good, the bad, the illogical. The physical therapist and neurologist were excited about Isaac's stroller mount for his eye-gaze device. Even our wonderfully stubborn respiratory therapist had to admit that Jeremiah's modifications allowing portable humidity were worthwhile.  By admit, I mean he shrugged his shoulders, sniffed,  and said "Well..."  If you knew him, and some of you might, you would know that he is stubborn with a smile, a genuine one.

I have more to tell you, about irises, HVAC, and Paul Simon.  That will have to be next time!  For now, please continue to pray for us, for Isaac, for Natalie, for our family, for his doctors, and for a cure.