Mondays...Realizations and Growing

Day 24: 31 for 21 Blog Challenge For Down Syndrome

I took Bradley to his Physical today.  I like our Pediatrician.  I was telling Eric tonight that I know that he's never going to not steer us when necessary, but he is also respectful of what Eric and I feel is best for Bradley.  We like that about him, we like that he is available and willing to be there for us when we need him, we like that he will listen to our concerns and that he has been known to call us while Bradley is in the County hospital, where he's on the Board.  We like that he will ask what we know, and if we don't know yet, he'll make a call and call us back and tell us what he has learned from the Pediatrician on duty, long before that doc makes it into the room.  We like that he will call the Gastro doc directly, especially if he wants to understand why we are or are not being supported in a way that Bradley needs from that end.  Bradley's Gastro is pretty great, but sometimes he does not grasp a true situation based on phone calls and e-mails, sometimes he just has to look at Bradley directly, and when appointments get hard to come by, sometimes it's one of these phone conversations that keeps everything moving appropriately.  We like this kind of team approach that we have with Bradley's Pediatrician and his Gastro doc.  The two of them were in complete agreement about us leaving the surgeon in Santa Barbara to speak to a surgeon at UCLA or Children's.  Sadly, Tricare is not a fan of Children's so we always get pushed to UCLA.  Our Peds knows the docs at Children's the Gastro knows the ones at UCLA.  You have to trust someone. 

Today we talked about sending Bradley back to the surgeon that took care of his eyes at UCLA, there is some talk about the movement of his eyes and his potential for needing reading glasses.  I picture him wearing my grandmother's bedazzled pair, but I imagine that what he would have would fall somewhere between those and cheaters...more like a real pair of glasses that we would attempt to keep on his face if we get to a point that we really have too.  A Peds Ophthalmologist stepped into Bradley's last Neurology appointment and took a look at him briefly, her assessment was not in complete agreement with the Eye Doctor he saw recently, so we're going to need a tie breaker decision from another source. 

Today we talked about his Seizures, our plan of non-movement until his symptoms or episodes force us to move through their increase.  For now the Keppra is working and though he is spiking seizures while he sleeps that keep him and mom up and down all night, he isn't having full blown seizures so the medicine is working and sleep is truly over rated anyhow.  Yawn...

Today we talked about his GI issues.  We discussed how I am willing to go through the prolonged medicinal requirements to keep him stable, so until that stops working, we aren't willing to talk to the surgeons again.  What I didn't tell his doctor, but discussed with Eric tonight was that I believe that should the Reglan break down and not continue to provide what Bradley needs, I want to try another trial of the Canadian drug Domperidone before we agree to surgery.  This way we feel like we have a last chance for our last chance. 

Today he asked and I listened and I asked and he listened and together we came up with the current plan for Bradley.  My little guy had to get a Pneumonia shot to help prevent Bacterial Pneumonia, and he has to have a blood draw, because ever year we have to check.  It's just time.  Ugh, can't wait to hold him down for that! 

Today we talked about Bradley's jump on the growth chart.  He's at 25% for weight at 46.3 pounds.  It's so exciting, we've had times when he barely hits the 10%, so sitting at 25% is quite significant.  He's also over 43 inches tall now, my little boy is growing!  In fact, he is getting big.  He no longer holds the baby face looks that he had for over five years, he looks like a little boy now.  When he had his picture taken in the Spring he looked older, but you could still see that baby in there...his school pictures now, he's a little boy.  Sigh... 

I shouldn't complain, and I really don't.  He was a baby longer than most typically developing kids, we were given a little bit of a Blessing in that he stayed smaller longer.  Sydney wanted him to stay a baby, and I used to tell her that he wouldn't stay that way forever, but God gave us a special baby that would stay smaller a little longer.  I didn't realize that there would be times he wouldn't be growing, or that he would be losing weight...but we got through those times and she still would say she wanted him to stay a baby forever.  No Sydney, but just a little longer.  Now I guess we'll see how it goes, will he jump into little boy and speed to big kid, or do we get to enjoy this little boy for a little while, possibly a little longer?  I guess time will tell. 

When we went into the appointment, no one was in the waiting room.  When we left it was a full house.  One tiny little boy who must have been at least a year - he was walking, was sitting in the middle of the floor.  Bradley walked out and saw this little boy, he walked over and crouched down in front of him and said "Hi." His little voice a bit high, very inquisitive and so cute.  The little boy merely looked at him then got up and ran to look at the fish.  Bradley just watched him go.  Then he stood up and as we were leaving he practiced saying Hi, and when a baby started crying, he said "Baby" and pointed to the baby. 

In a lot of ways he was just a little boy with his mom at his doctor's appointment, and in other ways, he was just his own special self, showing me the world through his eyes.  Simpler in a lot of ways, he doesn't have a lot of language, but complex in a lot of other ways because he has a lot to express.  I walked a few steps below him as he made his way down the stairs on his own and I listened as a little boy not much younger than him was being carried by his mom and passed us.  He asked how old Bradley was because Bradley of course said: "Hi."  And in that moment a felt a pang, not of sadness or regret, more of a moment of "Huh" as I had a thought of what would he have been like without the extra chromosome?  What kind of life would he have now?  I realized it didn't really matter, and what I also realized was that I don't have those thoughts so much anymore.  I mostly wonder, what would our life have been like if we didn't have him, what would we have been like without him.  And in that moment, I smiled at him smiling up at me and knew, I wouldn't want that life without him in it. 

As scared as I was to have him, to be surprised by that extra chromosome, I couldn't deny how the way he looked at me pulled me into his orbit and held me steady.  As crazy as the world was that we were spinning around in, though it all mattered, it was all a byproduct of adjusting our life to have this little boy as an important part of it.  I loved him before I knew I loved him.  I found my life was no longer complete unless he was in it, and I never realized my life wasn't complete before him.  This happened with both the girls, but it was a gentle realization with them, an easy adjustment.  Bradley was like a lightning bolt and roller coaster, we had to climb in and buckle up just to keep up.  Not much has changed. 

There is still a lot to learn, but he really is an excellent teacher.  I want to say he gets it from his parents, but I am quite certain that his Father in Heaven had all to do with it.  I am just grateful that Bradley chose our family and Eric and I to be his parents.  He set himself up with the best sisters to be here for him and he always makes sure that he pulls the best team to his care and support. 

And we really, really like that.  :-)