A new opportunity

My mom was once again in town for Brady's IVIG. It is such a special time to be able to catch up with her and for Brady to have both of us to just focus on helping him get through this. I feel very fortunate that we will both have a positive memory of this rough time in his life.

The neurologist prescribed EMLA numbing cream to put on both arms at the IV site to help take away some of the pain and discomfort of the procedure. We arrived early enough to pull over at the McDonald's by the hospital to take a quick bathroom and coffee break after the commute, change him out of his pajamas, and "apply a chocolate kiss amount to both inner elbow creases and cover with plastic wrap." Oh yeah, this is living baby. And I kid you not those are the actual instructions on the prescription box! Brady said, "this is weird." Um, yeah.

We got the same sweet nurse as last time. She is not only sweet but conscientious that the orders get followed to the letter and our wishes are observed. Unfortunately, Brady's vein blew but she knew that we had told him only one poke so she went to get another nurse so that maybe he wouldn't think we were lying and meant only one poke from her. Ironically the new nurse chose to use his hand so the numbing cream was moot!

After about two hours this time his eyes started sparkling. He was markedly different. I should be taking videos it is that spectacular. It took longer for the appetite increase, but it kicked in and he ate like crazy all day. I wish he could have a day every day like his is during his infusion. He plays and talks and his eyes shine and he looks the closest he ever has to any NT in any waiting room any day. Luckily this time grandpa was at home with the girls so we didn't need to worry about picking them up or arranging care for them. We could really take our time without worry, finishing the knitting of a scarf for Brady's neurologist and alternating lunch or coffee and bathroom breaks. I even did some Christmas shopping in the gift shop for a special gift for grandma! It was definitely nicer having our own room again rather than sharing. I was even able to take a little extra time and drop off gifts for Brady's doctors at the volunteer office to be delivered.

During this IVIG process I have learned more about my son's struggles, from his own voice or by observing his behavior, than through any other intervention thus far. It really motivates me to figure everything out, not settle for anything less than full recovery, and not settle for symptom improvements anymore. I don't want him to just look better to others, I want him to be better for himself. When I see him smiling again, or laughing and playing with his sisters again, I am driven to continue fighting.

I have also learned that I cannot do this on my own. I have tried and given it my all, but it isn't the only thing I have to do day in and day out, plus there is a little thing about lacking medical training (although at this point I might need to just go and get some!) I am really excited to have the opportunity to take Brady to a new Dr. who can finally integrate all his traditional and alternative treatments and get us back on the road to recovery. It feels like the hugest weight in the world has been lifted. It doesn't hurt that we get to take the whole family and make a vacation out of the trip to the sunshine when there is snow on the ground here!

I have made a list of the areas that showed changes after each of Brady's IVIGs for his neurologist appointment.
-Eye contact (piercing at day 10/11) as if he came alive his eyes shine so bright
-Goes to sleep alone, stays asleep, sleep is not disrupted with no early wakings
-Emotionality/Anger/Depression
-Finger Movements and/or licking
-Smiles (spent hours looking in mirror at his smile after IVIG 3)
-Language appropriate, and at even deeper levels than baseline
-Cognitive: demonstrates knowledge at an age appropriate level and even beyond (able to show how smart we know he is)
-Memory
-Speech: increase range in pitch. His voice actually sounds like a different person talking by day 2

For rounds 1 & 2 these gains are all gone by day 20 and he starts declining rapidly. In these darkest of days you really begin to question your sanity. Was he really doing that well or is this really that bad? Yes and hell yes! When I, the queen of my son does not have the a-word land, begins to question if this is it? Is this the descent into autism that everyone said he had in the first place, what with all the new-fangled stereotyped behaviors including flapping that can mean nothing else to an outside observer, then yes he absolutely is doing this bad now and was doing so great before. The ultimate question is why now, what happened, and what the hell am I going to do about it?

After this third treatment, things went a little differently. He improved almost immediately, didn't seem to have as dramatic a change in eating, and the negative things we were trying to get rid of seemed to come back sooner, albeit in a milder form. So not as huge a benefit, but not as huge of a regression either. Then something interesting happened. This time, he had a longer period of regression, but bounced back around day 20. We have never had a rebounding before and it seems authentic, as close to the real Brady we know and lost back in the summer. I don't claim to know why this is or if he will stick around, but I hope he does. I so enjoy listening to his laughter and playing Just Dance with us and being his stubborn and hilarious self.

The way you ultimately know what you lost is when you get it back. Brady is supposed to be able to show us how smart he is when he wants to. He is supposed to be a cute, quirky, hilarious, happy, stubborn pain in the ass that makes you smile even as he makes you angry. He is my son and of course I love him no matter what. But it is a hell of a lot easier to live with him when he is not angry because he is depressed or sleep deprived but can't sleep or hungry but can't eat or smart but can't think. I want my son to be all of those things that make him special, including the ability to correctly (and OK inappropriately) use bad language to describe people and situations, because it is our faults that make us human. Yet it is our ability to overcome these shit holes that make us compassionate human beings. I want my kids to be compassionate yet powerful. I want them to be productive yet at peace. I want them to find happiness and love.

And yes, I suppose I will move mountains to make all of that possible for them to choose when they are ready. Someday they will understand why I have done all that I have, even if they never fully appreciate what it took to do so. I hope they don't ever have to know. I hope their existence is carefree and simple. For me, the complexity and challenges keep me moving forward I suppose. I have no idea what life would be like any other way. I am striving to have more fun while working just as hard and that is as more work than working hard!

Well little dude just came into bed to snuggle so no proofing of this post!