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Sunday, March 20, 2016

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In Like a Lion

Hello everyone!  I have been thinking about an update since Isaac's birthday.  Then I wanted to wait until after his birthday party, and now, here it is, March (and more than halfway through it!). We have so many people to thank, I have so many pictures to (upload, organize, and) share.  A very special thanks to Katherine Forbes for the beautiful family photos (you'll be able to tell which ones they are, they were taken on a real camera, not a phone!).  Katherine came to our home for a mini-session, which turned out perfectly despite my weeks of anxiety about what we were all going to wear.  A few weeks later, we received a disc of all of the photos she had taken, not the ten we had agreed on, in addition to a check for the full amount we had paid for the session.  I laughed, I cried. She is incredibly generous and talented.  Our kids loved her- Isaac didn't take his eyes off of her for the whole session, except when Natalie was in the picture :)



On Isaac's birthday, we woke him up by singing Happy Birthday and having him blow out his candles on his big chocolate cake.  He blows out the candles with the air that gets forced out of his mask.  Jeremiah held the cake and rotated it so Isaac could get to all of them.  While Natalie was at preschool, we walked around town delivering birthday cupcakes to our friends at the post office, the bank, the church, and the cable company.  We ate the cake as soon as Natalie came home from school.  Isaac had the help of his speech therapist to enjoy some chocolate frosting, which was probably his favorite session ever.  He opened his birthday presents (a new remote controlled car, a plush gruffalo mouse, balloons, books, etc).  Our good friends, the Goulds, stopped by to wish him a happy birthday and play with Natalie. Grandma Sharon came by to play some games with the kids, and it was an overall excellent day!
The Goulds!

Stadium Checkers with Grandma Sharon

The next day was Isaac's long appointment with the muscle clinic at Children's Hospital. Our nurse came in early, our other nurse met us there (she is taking over case management when our other nurse goes on maternity leave), and Natalie spent the day with a friend from preschool (thank you Kendra!!).  From door to door, it takes about an hour to get to the hospital. We then wait in a room for all of the practitioners to come see Isaac.  At the last appointment, Isaac cried the entire time (so, 3 hours or so), because he was so anxious and scared.  That was several weeks after his last hospitalization, and he had not emotionally recovered.  We came prepared to this appointment with extra books, toys, the ipad, and even his anti-anxiety medication (just in case!).  He didn't need any of it, because he was such a trooper!  I was so proud of him.  We saw the dietitian, the pulmonologist, the respiratory therapist, the physical therapist, the social worker, and the nurses, each in their own turn.  We usually see the neurologist and the rehab doctors as well, but we were grateful for the small mercy of just not having time.  It's not that we dislike those practitioners, but 3 hours is a long haul.  Isaac also needed some vaccines and lab work done, which made him very angry.  But kudos to the people in the lab who somehow got all 3 vials of blood on the first poke.  Another not so small mercy.  We made changes to Isaac's diet, his ventilator settings, and had the physical therapist look into the status of his new medical stroller.  It was a productive day, and we unloaded another dozen birthday cupcakes!  The physical therapist on the team talked with us for a while about what will happen with early intervention therapies when Isaac turns three.  She said "we would never have thought, back when he was diagnosed, that we would be celebrating his second birthday.  But now I think we can talk about 'when he turns 3.'"  It was probably the first time we have ever talked about long-term, and it was like a breath of fresh air.  Yes, anything could happen on any day.  Yes, we know it will happen someday.  But we can also say, yes, we need to think about preschool, powerchairs, larger headgear. And why not?

Yay! Grandma and Grandpa Boostrom!  

The first warm day in months!


The rest of the week went by as usual.  I sent out some last minute birthday party invitations, ordered some shirts from Never Give Up, and took Isaac to Party City to pick out party favors.  On the day of his birthday party, my mom and I went over to the church to set-up, with the help of a very nice woman from church who I had met just two days before.  Susan Rizza from Rizza's Bakery brought Isaac's cake and cookies, which she so generously made with the help of her two incredible daughters.  I can't even begin to tell you about how perfect and delicious the cake and cookies were.  I hesitated at least twice before finally slicing into the cake, with Susan by my side, encouraging me with "That's what pictures are for!"  I had only told her "Gruffalo themed," and we were delighted by the absolutely perfect results.  We had some BBQ and amazing mac and cheese from The Brick House BBQ- thank you Glen and Jenni, who catered it even though they are closed on Sundays!  They have been so generous and loving to us.  The party itself was so much fun. We had a good turnout, although I know I didn't get to talk with half of the people there.  Jeremiah and I pretty much split up in an effort to greet all of the guests.  If you were there and I barely got in a cursory greeting, thank you for coming!  Many of our guests asked us what the deal was with The Gruffalo.  It is quite simply Isaac's favorite book.  It's a fun story, with lively illustrations.  We decided to perform a dramatic reading of the story for everyone, with Isaac as the mouse, Jeremiah as the Gruffalo, Natalie as fox, owl, and snake, and I narrated (and helped Isaac).  We then played pin the purple prickles on the Gruffalo's back (I was rather proud of my foam Gruffalo. It's hanging on our wall next to Jeremiah's foam lion from last year's party).  If you are curious about the book, go here.
Gruffalo cake, Gruffalo shirt, no biggie

Before The Gruffalo had any purple prickles pinned on his back

Susan Rizza's amazing creations

Pinning prickles!  And giving the gruffalo a gruffalo mask

#NeverGiveUp


In honor of Isaac's birthday, we decided to make a donation to Cure SMA. The organization provides so much information, resources, equipment, research funding, and support for families dealing with SMA.  When Isaac was first diagnosed, we received a care package from Cure SMA, and it was overwhelming.  Many of the items were suggested by and/or donated by other families, including toys that are easy for kids with Type 1 to play with, and items that people found helpful with their children.  We decided to donate enough copies of The Gruffalo for Cure SMA to include with each care package for a year, about 175-200.  I'm happy to say we raised enough money (plus the books that were donated!) to send about 190 books!  The first 80 are already on their way to Chicago, to be labeled and boxed up with the care packages.  Thank you to everyone who donated to the cause.  Most families receive those packages within weeks of their child's diagnosis, and I remember that feeling of support, love, and connection to other parents who had gone through what we were experiencing.  Your help is real, tangible, and the love will be widespread.
Flying a kite!

Watching the porcupine puffer fish

Proof that I go outside sometimes too

Coolest kid on the block!

The rest of February and March were spent making the most out of some finally beautiful weather (read: above freezing and some melting of the ever present snow)!  Jeremiah brought home a small kite on a very windy day, and Natalie and Isaac both took turns learning to fly it.  My parents arrived for a visit just before Isaac's birthday party, and we had a perfect day to go to the zoo. Isaac has a new favorite zoo animal- the porcupine puffer fish!  The zookeeper had just fed all of the fish, and she returned to give the puffer fish some treats.  Isaac got to watch it eat, and he was transfixed for about a half hour on that tank.  Jeremiah set up Isaac's swing in the backyard again, and we've gotten to enjoy it a couple of times when it hasn't been too windy.  Natalie is learning to ride her strider bike, and cruising around the neighborhood on the power wheels jeep that a friend passed down to us.

Isaac's new, larger stroller arrived as well!  It is enormous, but he had all but outgrown his smaller one.  This is the same style as his old one, but much longer and wider.  It barely fits in our van, but we have managed to make it work so far.  We are hanging onto the old stroller for a while, because the new one doesn't fit into the bathroom to get Isaac into the tub.  He is such a big boy, and is enjoying sitting up at about a 30 degree angle with the new lateral supports on the stroller.  I'm glad he likes being more upright, because in the past few weeks he has started having reflux. The team at Children's Hospital has been surprised by how long he went without having any symptoms, because it is such a common problem for kids with SMA.  A few weeks ago, Jeremiah and I were doing Isaac's nighttime treatment, and when I suctioned out some formula.  Since the formula goes straight into his tummy through his g-tube, the only reason he would have formula in his throat is reflux.  This can be dangerous, because he could easily aspirate and get some of that into his lungs.  So we changed up our routine a bit, and now do his evening treatment before feeding him his dinner.  We have also slowed down his feeds a little bit, and try to keep him at a slightly upright angle during feeds to let gravity help. Just this afternoon, however, as soon as his lunch was done, Isaac needed to be suctioned, and once again, formula came up.  We had been hopeful that Isaac would continue to be that anomaly and not have reflux, but life goes on.  We will see if it gets any worse, and if need be slow his feeds down even more.  If it gets too bad to manage with slower feeds and an upright angle, we can always start doing continuous feeds, start a reflux medication, and or even have his g-tube pushed a little past his stomach to feed directly into his small intestine.  We have options, it's just one more thing to deal with!

Our big boy status post haircut! 


Isaac has been doing so well, staying healthy and happy.  He finally got his second tooth, with about 5 more just waiting to make their debuts!  I was so happy when that second tooth popped through- it's a milestone I have been waiting months to celebrate (which I did by writing it on the calendar, but still).  He is so smart, and plays games with us on his talker, and is constantly telling us that he wants to watch TV with Natalie, to play blocks with Natalie, and for Jeremiah to hold him.  We have been using a magnet board with magnetic animals to have him show us with his eyes which animal is which. The first time we played, he only missed the giraffe!  His main nurse has gone on maternity leave, so we had a few weeks with nursing help only two days a week.  But his other nurse will start 4 days a week this week, which will help us finally get around to some outside projects on the house, and maybe mean I can get some more hours in at work!



Today is the first day of spring and Palm Sunday, and I pray that you all have a great Holy Week leading up to Easter.  It is a week meant for reflection, prayer, fasting, and reconciliation.  Think about where those can fit into your life, and how you can fit your life into those things.  I am so grateful for all of the prayers and support we have received, and continue to receive, from friends, family, and strangers.  May God bless you all!