Getting nowhere fast

So the doctor agreed that we need to down-dose to half of what we are currently on. If Coby does amazing on it we can call the office one week from now and they MAY allow us to 'updose' at home (since he's been on it at home before) back to what he has been on until now (minus the three days of downdosing with the fever). If he still has side effects OR the office decides 'no'- then we are to remain on this half dose all the way til Dec. 1st. So our new dose is 25 micrograms of a peanut- the equivalent to 1/12,000.

I am sooooo frustrated. While others are able to updose every single week- we will be 'lucky' if we are on the same starting dose an entire month into this journey. All those hours of observation and watching and 'no exercise' and worries and fears---- for nothing???? And it is very possible that we are going to be on HALF THE DOSE than what we started with, an entire month into this process? And then we'd have to shlepp out to the doctor in order to 'updose' back up to what he has been on until now and then remain on that dose for a few weeks?! We are getting nowhere fast!

ARGH. I'm wondering what would have happened if he didn't get strep three days into the process. What would have happened if our starting dose on day one would have been this half dose we are down dosing to since Coby was scratching a bit at earlier doses. Would we be past where we are now? Would he have been able to updose last Thursday like originally planned?

We are literally moving backwards! Coby was so upset when we couldn't go to the doctor for an up-dose LAST week! Now I am going to have to tell him, not only are we not going back to the doctor now for another 2.5 weeks--- but we are going backwards in dosing at home as well.

I know, I know at times during this one has to down-dose--- but we already did that three days in when he had fever of 104. Why couldn't we at least get some momentum going? Why couldn't we have been able to have a couple of updoses, so we can feel the progression and feel good about thi,s before having to drop down a bit?! Why do we now have to be going backwards as if this entire month was for nothing?!

There are all these inspirational quotes about moving slowly- that it doesn't matter if you're moving slowly as long as you're not staying still.  Well we're not staying still---- we are MOVING BACKWARDS!!!!! Where's the inspirational quote for that?!

I know, I know, IYH it will be short lived. I know it's best for his little body. I know that the harder the climb, the more gorgeous the view. I know the best things in life are worth waiting for....

Have this for myself- reminds me of how long we waited for our Coby-bear. How many years it took to have him. How everybody- even doctors told us to give up- that it's not going to happen, but we didn't. And we have the BEST THING because of it. I do not give up! And he definitely was very worth waiting for!

But I want some FORWARD momentum. I want to see progress. I want my child protected. I want him to know he is going through these hard times for the best times. 

I'm just venting my frustration here so I can plant on that 'happy mommy face' when he gets home and be all 'excited' and happy that 'yay we get to down dose' so his body can get used to it faster instead of struggling against this dose. And how yay- we are going to be sneaky and trick his body into accepting this and how cool is that- how brave is he to be doing all this, and it doesn't matter how many times we fall it matters how many times we get back up. And together we can and will keep getting back up. And this will be a life lesson for him and he will realize all that he can accomplish if he doesn't give up and yada yada yada.

Not to worry- I know how to put on that cheerleader role and happy mommy mask and act all positive about this but right now before he is home I just want to scream. Just a little bit.

...and so I did and I'm a bit better now. And I will continue to remind myself that as long as we are on the road- even if it's before the 'starting line' now- then we have a chance. And as long as he is safe and we have a chance- an 85% one at that- then all is good. And IYH in a year or two we can look back at all this and give ourselves a huge pat on the back. We got this. We can do this. 

Hopefully he'll acclimate to that lower dose quickly and we can get back to where we were. In the meantime he'll be so excited to see the news clip of his own doctor that aired last night.

(if anyone wants to check it out: http://www.fox5ny.com/news/217519978-story )

He had been so hopeful on getting a store bought ice cream cake for his 9th birthday at the end of July. I don't know that we will make that deadline. I already promised him if we didn't make it to that point by his birthday I would buy him an ice cream cake whenever he is cleared to eat a 'made in a facility with' item. It doesn't need to be for his birthday. It would be celebrating so much more than a birthday. I will buy him an entire tower of those ice cream cakes- when the time comes. Just please, let that time come....