I posted this as my morning facebook/tweet, and have gotten so many comments/emails/encouraging words from it that i have decided to make it a daily mantra. Attitude IS so much of what happens in our day – CHOOSING to have a good attitude goes so far to making any day good.
so in spite of the fact that I currently feel like…well…not so healthy I guess, I am trying to choose to have a good day.
I spent the majority of yesterday on the phone with the genetics assistant, home health care company, 5 or 6 pharmacies – all trying to get this new b12 therapy in place for Kendall. The home health nursing agency recommended we just go to our ped’s office daily for these shots – “that will be so much easier”.
Really? It’s 45 minutes away – ONE WAY. I have three other kids who have to be at school, on the bus, off the bus, at dance class – not to mention a LIFE. and really, how advisable is it, do ya think, to take all these children, one of whom has a known immunodeficiency, into an office where sick kids are laying around like so many zombies, EVERY DAY for the next month? Are you REALLY telling me that will be easier????
Needless to say, we are setting up home nursing training.
Still can’t find the right meds though – and by meds i mean vitamin b12, but prepared in a slightly different way than is commercially available. Found one pharmacy that CAN make it the way Kendall needs it, but they don’t take our insurance. The ballpark number I have been given is $800. I am praying they were doing math off the top of their head and carried an extra zero or something.
So today is going to be more of the same. 2 therapies today – speech and occupational. Which is kind of funny when you think about it because she neither talks nor works. But, you know, we’re working on it.
In some GREAT news – I just got off the phone with our Immuno doctor and we DO NOT need to start IVIG immediately as they were discussing/thinking! It’s not totally off the table and Ben and I need to discuss still what we think is the next best thing for her (attempting to give her monthly vaccines of the most likely to harm her infections, maintenance antibiotics, etc.). We will still meet on the 25th with the immunodeficiency team to see what they recommend based on the plan we come up with, and IVIG may still be in the future, just given the fact that with her metabolic issues, sickness is clearly going to complicate things even more for kendall. But HALLELUJAH we don’t need to get it started yesterday like they were first thinking.
i may or may not have just tripped this over to italicized printing. if i did, sorry. my editor is kind of wonky with showing me what it’s actually doing.
So. like i was saying. Attitude reflects leadership, cap’n. Oh wait, wrong movie…
Attitude changes things. Prayer changes things. today is going to be a good day. we’ll just keep adding up good days one by one.
I feel like I had more to tell you all. but my efforts to ignore the fact that I think I am slowly being hit over the head with some kind of sickness aren’t staving off the fact that indeed my throat is now swelling shut and my ears feel like they’re going to explode off my head.
perhaps I’ll be back later with more.
IF YOU’RE LUCKYYYYYY!!!!!!
Fun contest of the day – if you notice that you have the number 26078 in the counter over to the right ———————-> LEAVE A COMMENT! There will be a prize for you!
Did you guys think of your favorite childhood 80’s movies yet for my big post? Tell me what you remember watching over and over and over again!
hope you are all having a GREAT day!