UPDATE - FINALLY, RIGHT?!

Good morning blog readers! Yes, it's been forever since I've done an update. I thought my life was crazy busy before, then I got a fixer-upper house and holy crap, busy doesn't begin to explain it. So let's jump right into it for a quick update before I head into work today.

Hard to believe it has been over a year since Colby had his spinal fusion surgery. June 25 was the 1-year mark. What a difference one little year can make! Not only is Colby seriously kicking SMA's butt, he continues to thrive and beat the odds every single day. AND, we'll soon move into our beautiful, handicap accessible home. Wow, amazing. We recently had various follow-up appts at Cincinnati Children's. On the 19^th we did an “up and back” to meet with the ortho surgeon and ENT. Colby needed x-rays, sitting up, with no back/support on the stool (insert wide-eyed, scared-looking emojicon). But the nurse and I managed. Ortho surgeon said Colby's spine and back looked wonderful and he'll see us in 6 months. Next appt was ENT. The doc said Colby's trach site looked “impeccable.” I'll give credit for that to a little luck and a lot of diligence and care on our part (nurses and myself.) I am meticulous about trach care, and that seems to be paying off in Colby's care.

Last Wednesday and Thursday were exhausting, no other way to put it. Colby is such a trooper, he never cried or whined one time while we were gone to Cincy. Such an easy-going, sweet boy! And super funny and handsome to boot. So proud to be his mama! We went up on the 24^th for some testing – PT evaluation, pulmonary to test his vent settings and function, then an Echo and EKG. Drove to the hotel, unpacked everything out of the van. Got rested up, loaded up everything back into the van the next morning and headed back to the hospital for follow-up appts with Neurology, Pulmonary and Cardiology. Let me tell you something, Cincinnati Children's has it going on! They put us in a room and then all the docs come to us. Wonderful! So much easier than transferring Colby in and out of his wheelchair who knows how many times and traveling all over that germy hospital. Again, all good reports for Mr. Colby. The only thing is he has lost a little weight. I was very surprised to hear this. So we've adjusted his diet and we'll see how the new formula recipe works. Other than that, the doctors had excellent things to say about Colby's health and care. That made me feel good. We have an up and back in July also, but after that we're clear from Cincy appts until October. Shew, grateful to get all that craziness done.

The house is coming along. Slowly but surely, little by little, we're getting there. The replacement windows were installed last week, and they look fantastic. Next outside work will be gutter replacement and soffit repair. As far as donations go, it's been a one step forward, one step back; two steps forward, one step back; one step forward, two steps back kind of thing. I am extremely grateful to the companies and individuals that have donated labor and materials or given us a discount. There is no way I could ever afford to have all this work done to the house without such amazing generosity. So the latest wonderful news is the materials and labor for a deck and ramp have been 100% donated. They can't start on it until late August or early September, but that's fine. The latest not-so-wonderful news is there was a problem or miscommunication with the kitchen cabinets. We were told by the contractor early on that a company was donating them. Now the company is back pedaling and saying they never said that. Well, isn't that special?! So we've been scrambling around asking other companies for donations or discounts for the cabinets because that's a huge expense! For crap's sake, they are just large boxes that mount to the wall to hold dishes and food, WHY are cabinets so expensive, in my opinion. The other bad news, really bad news, is that we did NOT receive our grant for the overhead track system in Colby's room. This is a major bummer and a huge blow to our budget. The quote for the track system and installation is $14,000 (insert crying, hysterical emojicon.) I have no idea how we're going to offset this expense. Again, we're contacting other businesses and other organizations that might donate money or labor in the hopes that we can get some assistance with this much-needed item for Colby's room.

With this being said, please, please continue to share our gofundme page. To everyone who has donated and shared so far, thank you so very much. We have reached our 10% goal and I'm very pleased with that. We're planning other fundraisers, too, but I just haven't had much time to work on them or post/blog about them. Here is the link if you are interested in donating to help us move out of this tiny apartment and into our beautiful, handicap accessible home: http://www.gofundme.com/amyandcolby

I have to get going now. Nurse will be here in 15 minutes and I still need to do hair and makeup and make a grocery list before heading to work. More updates soon! Adios for now, amigos.