First of all, Thank you to everyone for the wonderful response to Elias latest photos. Setting aside the parental bias, those are probably some of the most precious photos we have been able to get of Elias. They really demonstrate how well he has been doing despite the issues. We are glad everyone enjoyed them so much and thank you again for the response. The past week has seen plenty of snowing, but no real accumulation until yesterday when we received roughly 3-4 inches. The snow prompted us to cancel our appointment with the colorectal team today. The roads were passable, but after watching a few of the neighbors struggle to get up the hill on our street and the news reporting terrible conditions of the side streets of Cincinnati, we decided to play it safe. Getting stuck with Elias in the car is not exactly an ideal scenario. We tried many times to contact the colorectal clinic to inform them and try to reschedule, but all we were getting was either continuous ringing and finally after several hours a voicemail to which we have not received a response. Maybe they were having trouble arriving on time as well. We only hope that it doesn’t take several months to get another appointment because of this snow. Speaking of the snow, while we obviously couldn’t take Elias out to play in it, we did bring it in to him. I got a bowlful and brought it inside. He wasn’t sure what to make of it. He tried to touch it, but it was too cold. The experience didn’t last too long, minutes maybe, and Elias lost interest. Oh well, it was worth a shot.
In other happenings, we had a visit at the FA clinic again in day hospital for Elias’ IVIG. They also took a trough IGG level. The last reading we had clotted so they did not have any numbers to work from. Yesterday the decision was made that rather than the every 28 days we ad worked up to for the infusion needed to be reduced to every 14 days. It was also recommended that given the issue we had with the home infusion company’s reliability doing it at the clinic would be preferred. That was fine, we understood and we had expected the every 2 weeks anyway so that wasn’t much of a downer or inconvenience. Next week’s calendar is jammed. We have some type of appointment everyday with many days cramming 2-3 in per day. This is also surgery week so Elias will be going under general anesthesia yet again for another series of procedures. We will keep everyone posted on his status. It is scheduled as outpatient with the intent on coming home unless Elias has difficulties of any kind, which we do not expect. Elias’ therapies really get into full swing this upcoming week so that is really adding to the complexity of our schedule.
A nursing update for you, we have an orientation with a potential night nurse for the weekdays on Monday morning. This nurse could replace the one we had to let go. Hard to believe it has only been 10 days since we let our other night nurse go. It feels like an eternity ago and we are both really dragging because of it. we can only hope that this candidate proves to be competent enough.
Well back to our snow day, of sorts. Our nurse did not drive in this morning so we are enjoying some quiet time as a family today. Surely there are many other chores that are in need of being done or getting caught up on, but days like this are so far and few for us we want to try and take the time when we can to remember that we are a family and need to spend time like one when we have the opportunities. Cherish the days we have together, because they are always too few. The housework and other responsibilities can wait! Hope everyone is safe and warm, have a great weekend.