One of those days...

• Woke up x amount of times during the night last night, so started off the day tired
• Regular nurse has strep throat, substitute nurse coughed a bunch of times during her shift, I almost made her leave, but against my better judgement, let her stay because I need help
• Ryan had his assessment for CTN (Children's Treatment Network) the organization that will provide physio and occupational therapy when our CCAC runs out. Surprise of the century, he will need both. (I say that because from the very beginning, I tried to get out of this assessment because EVERY healthcare professional we've seen said he needs OT and PT but procedure is procedure.  Luckily I was successful in getting them to come to the house instead of having to bring him to wherever they do these assessments)
• I was informed of the long waitlist for a CTN therapist (months).  "Hopefully" CCAC will continue to provide the physio, but "it might not be as frequent".  Great, so our option is to not have the services or pay out of pocket (which brings me to my next point)
• Our "enhanced respite fund' grant is gone.  This is how we pay our amazing nanny... we plan on keeping her, because life would fall apart without her, but it means a very tight ship will have to be run (or we send Sadie door to door with a UNICEF box ;-)).
• More waiting  for consults - he can't get into the ENT doc until the end of April.  This news caused the angry tears to come.  We had his hearing assessed in early Nov and they suggested he get seen ASAP so that they can rule out a medical problem or if he would be eligible for hearing aids..... so ASAP means 6 months later.  Amazing. What if it is a simple problem to fix and this poor boy has been unable to hear properly for an entire year.  What does that do for him developmentally, he's already far enough behind.  I've googled other ENTs, but I think Sick Kids is our best bet.  I called them immediately to see if we can be bumped up, or at least on a cancellation list. Yes, of course, but the odds of getting in are slim.  PS.  our friends, who have a baby like Ryan are being seen Feb 22.  A certain doctor of ours messed up the paperwork. Fantastic.
• Then comes the GI clinic.  When we decided that a g-tube was going to be the best option for Ryan, a certain doctor was more than confident he could "get him in within the next 2 weeks."  This was early december.  Our scheduled appointment: February 8.  Not too bad, but that's the consult.  The actual procedure wouldn't be for at least 3 months after that.  That means that Ryan will have AT LEAST 4 more scheduled tube changes (each involving a trip to the hospital and 1 or 2 x rays each time), who knows how many more times he'll pull it out (he did it twice in a month).  It is also becoming very difficult to feed him during the day because he's requiring more volume, which takes about an hour to finish, then he has to have time for it to settle, then it's feeding time again.  So - you can imagine that this was not good news. (this was the same doc who didn't send the ENT referral)
• Audio-visual therapy is beginning this month as well (therapy to teach Ryan to look when he hears sounds (assuming he can hear at all)).  Initially we were referred to the hospital in Markham, but I was later told that there's a lady in Oak Ridges who does the same thing. Not in a hospital.  Sounds much more ideal, so I called around, but apparently (again) you get who you get.  I worked my way to the top to try and speak to the supervisor, but have yet to receive a return phonecall.
• I placed a call to the agency who sends us our RPN (shift nurses) because on Saturday our regular nurse wasn't feeling well so she called the supervisor to let them know.  They told her to come to our house and wear a mask while she works with Ryan.  She showed up practically in tears.  I sent her home and THANK GOODNESS I did because she's the one with strep.  WHY WOULD YOU SEND A SICK NURSE TO WORK WITH A CHILD LIKE RYAN!!??  Their answer, "because it would be very hard to find a replacement."  Oh, really?  It's also very hard for Ryan to fight infection, it's also very hard to spend a week in the hospital, and to work our way back from the physical and developmental setbacks a cold can cause.  In the future, we'd rather have no one.  Luckily, I've made nice with the supervisor and was able to have a much more civil conversation than what I just wrote.  

I guess I brought it all on myself when I decided that today was going to be the day for following up with referrals.  I'm trying to think of a bright note to end this rant on... but am coming up short.  I guess it was good when Ryan napped during the usually very challenging 2 pm feed.
As with our roller coaster, after downs there are ups.... at least everyone is healthy (for now).