Wednesday, February 8, 2017

SWIRLING WHIRLING SNOWSTORM

So Coby once again will not be up-dosing tomorrow.
It's not because we're in Disney (sigh, I miss it so much and it's only been a week or so!)
It's not because he's sick (thank goodness and it's only been a week or so!)
It's because we are supposed to get a huge snowstorm!

It's hard to believe that today is supposed to be 60 degrees and then BOOM up to 10 inches of snow! It makes me FINALLY understand the book, "Going on a Bear Hunt." I always had thought the author had made a mistake,
We're going on a bear hunt.
We're going to catch a big one.
What a beautiful day
I'm not scared.
Oh no!
A snowstorm

A swirling whirling snowstorm...


Huh? How is it a beautiful day and then boom a swirling whirling snowstorm?! Well now, Ms. Oxenbury NOW I get it!

Truthfully, I should be grateful that we had not yet had a real snowstorm by this time in Winter (let alone one that interfered with Coby updosing), but....

I was a stress-ball last night.
Why?
Because Coby only has enough solution here at home to get through this Sunday night. If we were to skip a Thursday appointment, he would need to have enough dose  to get to the following Thursday...

Argh- what to do, what to do?

Our first thought was to have Yitz swing by the doctor (a bit out of his way) today, on the way home from work, to pick up more solution.... but THE OFFICE CLOSES AT 12:30 TODAY!  (Though the only days they even do up-dose appointments are Mondays and Thursdays so who knows it they'd have the proper 'apothecarians' there today to put it together.)

And in the past, when we tried to get a Monday slot they had ZERO availabilities.

So I was stressing.
No way to get more solution.
No way to make it to NEXT Thursday.
Coby can NOT skip a single day, let alone several days to next Thursday.

So while other people may hear the word 'snowstorm' and panic a bit as if it's the apocalypse and storm the stores to empty out the shelves,

I was flipping out about the damn 'koolaid'. After all if there's no way to pick up more solution and there was no way for them to fit him in on Monday all of our progress and efforts over the last three months will be gone. POOF.

And that is what kept me up last night.

So yep, I was up tossing and turning.

This morning we called the office and pheeeeew, they said they'll be able to take Coby at 3:15 on Monday. While it means I will have to take Coby out of school a bit early and won't be around to do either of my carpools, it could have been so much worse:
-They could have said, 'well we can only see him at 10AM'- which would have meant Coby missing school and me missing work.
-They could have even said 'IMPOSSIBLE, WE HAVE ZERO SLOTS OPEN' (After all this is not some appointment that he's in and out in 15 minutes. His appointments take close to two hours and requires A LOT of supervision. He needs to have doctor's and nurses checking up on him constantly, and be available for that potential emergency at a moment's notice. It is a very very hands on/high maintenance appointment.

When I told Coby he would not be able to updose this week he was so sad about it. He soooo looks forward to those updose appointments. But then he realized:

1. SNOW! FINALLY! YAY!

2. I GET OUT OF SCHOOL EARLY ON MONDAY NOW!

3. I GET TO REMAIN ON MY CURRENT DOSE AN EXTRA 4 DAYs! (His current dose is diluted in 8ML of the solution and he loooooves the taste. (Each time I dose him he asks for more. I explain to him 'more' would mean a trip to the hospital.) Next week while they will be updosing the peanut from 20mg to 25 mg, they will be decreasing the liquid content/koolaid (ml) from 8ml all the way down to 1ml (making the concentrate 10 times what it is now). So while he always looks forward to up-dosing and getting futher to his goal, he is not looking forward to the drop in the liquid ml.

4. I GET TO SEE DR. SELTER!!!! (Dr. Selter is in his other office on Thursdays and so the PAs and nurses have been handling his up-dose appointments.) He only has seen Dr. Selter himself three times until now and always laments, "When do I get to see him again?" Dr. Selter is a rock-star of sorts in Coby's eyes and he had been asking to see him again... so poof-snowstorm and you're welcome Coby.

So Coby will remain on his current dose for an extra four days, and then the next up-dose he will remain on for 10 days (instead of 7) and hopefully we can go back to every 7 days after that.

Slow and steady wins the race...

For the last two or three up-doses now have been slowly inching up his doses inching up just 5MG at a time (from 10 to 15 to 20 to 25) and not making the drastic increases they had been until then. But after the next updose they will be doing a big increase again- going from 25 to 37.5 (which is a 50% increase).
 I was concerned about the big jump back up... after all there must be a reason they are starting to creep and crawl up the percentages. When I wanted to call in to ask the doctor, 'why?' Coby exclaimed, "You don't need to ask the doctor. You should trust him. They are the professionals. You are the 'I don't have a cluer!" 
Out of the mouth of babes...

...but nevertheless we called the doctor (behind Coby's back) with a few questions. One of the questions was if we are at the point in which we can 'expect' Coby to make it all the way through? (I mean, I was getting excited! Sure there have been a few bumps on the road, but on a whole- it's been really going okay!) Unfortunately they responded saying that there is no such thing as 'the point of okay' until the child graduates. (And even then it's an 'ish') Things can go downhill at any point. So, there is not a certain point in which we can relax a bit and tell ourselves "Yep, he will make it." Kids can respond badly at any point in this journey with absolutely no rhyme or reason. While kids do have a tendency to have a more difficult time when switching the 'form' of dosing (liquid to capsules, capsules to peanuts), there is no real way to foresee when the other points will be. (Though obviously if kids exert themselves during the 2 hour rest period or are getting sick,they also have a tendency to have a bad reaction and even anaphylaxis.)

Sigh. I honestly was seeing the light at the end of the tunnel. I was thinking that we must be past the hump. I wanted to buy 'graduation' things for him (and truth be told I did get some already), but I'm going to stop doing that since I don't want to cause an ayin hara. (there is such cute things out there and I hope they still are being sold if/when Coby graduates.)

So that's our update.
Crisis averted.
We have just enough solution to get us to his next up-dose appointment now on Monday.

Meanwhile go outside and enjoy this gorgeous weather.
"What a beautiful day.... oh no a swirling whirling snowstorm!"

All I can say is: IT. BETTER. NOT. SNOW. ON. MONDAY!












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