When Liam was born I had a private website through the hospital’s Carepage program to send out posts to approved subscribers (family and friends). It was a wonderful way to send out information without having to make a whole bunch of phone calls and was of course the genesis of what would eventually become PressureSupport.com. I wrote nearly every day about the details of almost every day for a while but eventually the day-to-day waiting game that is the NICU became a slow grind and news would come out more slowly over weeks. We’d get emails and phone calls from family and friends who were sure that the reason I wasn’t posting was because something bad must have happened. I know they all were just showing how much they cared and we of course appreciated whenever someone would want to check on us but really I just got tired of writing “waiting for Liam to put on more weight” over and over and over again.
It was when I realized that I should be careful about making this the family’s only outlet for relaying Liam related information. The stress and responsibility of keeping everyone up to date with every little thing wasn’t a precedent I was confident I could keep up long-term and so I stopped using blogging to describe the day-to-day details of Liam’s medical needs or problems.
Even though I actually post more and go into greater detail during hospital stays and times of great stress, this blog is not a blow-by-blow account of every little medical thing that Liam encounters but more of an episodic narrative about the attitude and hopeful positivity of Liam’s, and by extension our family’s, life overall.
But whether I liked that aspect of it or not, just like that Carepage, this is a great way to get information out to family and friends all over the country and I should try to find a happy medium in using in that way with more updates on the goings on here in The Olsonshire.
I’ve been asked by enough acquaintances and co-workers the same bunch of questions lately and I figured that many of you, my family and friends, might be wondering some of these same things, so I put together a list and this way I won’t have to make a whole bunch of phone calls.
It’s like a FAQ for Liam’s life right now.
How’s the walking going?
Why it’s going freaking awesome thank you very much. We are still trying three different walkers to see what works best for Liam but we are having a blast watching him put in so much effort. He is truly an inspiration to all that see how much effort and determination he puts into everything we ask him to do. Unfortunately walkers are not cheap and even once we find one we like it probably be purchased by the school and kept there for him (and any future students with muscle tone issues like Liam’s) to use during his school day. It’s not an ideal situation of course, we would love to have a walker for him at home, but walkers don’t grow on trees.
What about school? Almost finished?
School is great but yesterday was Liam’s last day. Luckily our school district has an extended school year summer program so Liam will go back to school in a few weeks so we can try to keep up with all of the progress we’ve made in his physical therapy. Karin also got Liam enrolled in some supplemental therapies at an outpatient facility to stave off any regression.
How about the Van?
Oh the Van is more incredible than I ever could have imagined. How else would Karin have been able to bring Liam to surprise me at work on Father’s Day? We are still getting acclimated to the true freedom, safety and convenience that the van allows and so I still get excited and happy getting Liam in and out of it.
Speaking of the Van, now that you have it I guess there’s no more ‘Liam the Lion Fund’
Ah yes, money. The topic that makes me so uneasy talking about that I bury it in a post of fake questions and adorable photos. Well the ‘Liam the Lion Fund’ is not going anywhere. Not by a long shot. First of all, and without getting into too much detail, the van isn’t completely paid for yet. We did have to finance a chunk of it but we couldn’t wait any longer. It had to be bought now. We’ll continue to raise funds to pay down the remainder left outstanding. Secondly there will always be further equipment that Liam will need that will not be paid for by insurance like the walker we already spoke of but also a bed (adjustable like a hospital bed) and whatever other stuff I don’t even know that we’ll need yet. The hallways and bathroom of our home aren’t nearly wide enough for a wheelchair or for safely bathing an ever-growing boy so some renovations made to accommodate his medical needs will be inevitable. All of that says nothing of the possibility that a law gets overturned and my insurance company says “Hey Olson’s, you know that lifetime cap of benefits that you had already exceeded before he even came home that we imposed but then rescinded when the law forced us to? Yeah we’re able to bring those back now so good luck paying out-of-pocket for those meds, nursing help, supplies, and hospital visits.”
And after any benefits to Liam and the costs incurred by his medical needs, the long-term goal of the Liam the Lion Fund has always been to continually raise funds to donate to our local children’s hospital and any other special needs charities that we decide on. That’s the goal at least, but we are a long way from there.
There will still be Liam the Lion Fund bracelets. There will still be pasta dinners and art auctions, hopefully sometime soon there will be a website and other opportunities so stay tuned.
Thank you to all of the friends and family who have donated. We wouldn’t have made it this far without you.
Ok, well none of us like talking about money. How about all these adorable pictures! You have been taking such wonderful photos of that kid!
Well thank you and yes, yes they are wonderful photos but I didn’t take a single one of them. Karin has been killing it with the cell phone camera lately and these are the kind of thing that I get sent to me at work every day to brighten my day. Well except for this nighttime pic which I was present for when she took it. It’s a picture of true peace and relaxation. That glowworm (it’s actually an off-brand glo-seahorse) has been with Liam in his bed since the NICU but we haven’t turned it on in a couple of years. He actually seemed like he remembered it.
So there you go. School has ended, Liam loves using a walker, the van is still awesome though as of yet remains unnamed, and we continue to need money (don’t we all). Now you are all caught up. I’ll try to do this more often.
I’ll talk to you soon.