I find myself grateful that these heaps of dr appointments just come in small doses for us. I know many people for whom this is the norm, either on a weekly or monthly basis. It was supposed to be our norm.
Also, this is your warning that this is a long post.
Lately we've had the monthly check in with the pediatrician to make sure that Sam is gaining weight and check his iron levels because they've been so low. Because the anemia situation hasn't changed-except to get worse-these monthly appointments have expanded to include iron injections. Those are rough. Big shot, and one that has be given with a z track injection so it doesn't leave a tattoo mark.
The good news is that his body seems to be responding well to the injections. Slowly, but well. At least he's not going down anymore.
The better news is that he's finally gaining some weight! While he gained just over a pound between 4-6 months, and just over a pound from 6-9 months, he's managed to pack on a full pound from month 9-10, and another full pound from 10-11! He's now tipping the scales at a whopping 18lbs!
His head growth on the other hand.....
That penciled in dot is his most recent measurement.
Also off the charts, just in the other direction.
"It's like an orange on a toothpick!"
(Settle down, settle down....humor is a good thing. You know I love my baby to pieces!)
Now-on to the MRI!
We had a chance to chat with the Dr who reviewed his scans and wrote the report before we even left the hospital post MRI. Usually we just get the report and work our way through this:
It was really nice to talk with a reviewing radiologist, we haven't had that opportunity before. It was also a little sobering. The first thing he said was "I'm really shocked that they haven't done surgery yet." Well, ok. He did clarify that he certainly isn't the neurosurgeon and that the surgeon would know best, but by looking at the hydrocephalus he was surprised they are just letting it go still.
But check this out:
He said that he disagrees with the previous MRI findings regarding Sam's optic nerves. There was concern noted last time about them being small or somehow distorted, but Dr B thinks they look perfectly normal! Great news there.
He also mentioned that he disagrees with the idea that it is a tumor blocking the aqueduct and causing the hydrocephalus. He feels like it is just a dysplasia, especially since it would be consistent with the location of the other malformations there in his brain along the midline. That is also great news. Although it came with a very sobering conversation about the fact that if it is indeed a tumor there, that is not a good thing. Typically tumors located there in the tectal plate don't occur on kids this young, they aren't seen until years further down the line. With where it is located, it would be inoperable no matter what. He mentioned that if it does turn out to be a tumor it certainly looks to be slow growing, but we could be looking at chemo or something along those lines years down the road. It's hard to hear those things about your child. Even if they are just a "maybe" thing and not a definitive diagnosis.
With all that in mind and digesting, we waited until this morning to meet with our neurosurgeon. Typically the appointment with the surgeon is scheduled the same morning as the MRI, but I wanted our dr to really be able to see Sam and not the post-sedation loopy Sam. I wanted him to see how alert and active he is. I wanted him to see all that personality that is bursting out of that boy. I wanted him to see how physically capable he is.
I'm so glad I pushed for the appointment on a different day!
As Dr K walked into the room today he was joined by another neurosurgeon. He wanted another set of eyes to go over things and meet Sam and get a feel for how to proceed. They walked in with the ever thickening folder of Sam's history. Looked at the most recent head measurement and started flipping through charts. They had that semi-grim look about them, as they asked "How is he doing?" I told them he was great and they asked "What is he doing?"
"Well, he's army crawling, he's doing better at sitting, he's just the happiest kid ever...oh-he started pulling up this weekend too!"
"Yep! He did it in his crib on Saturday, I wondered if it was a fluke or if one of the other kids had helped him, but first thing Sunday morning he grabbed the dining room chair and up he went! Then a dozen more times that day too."
"Pulling up? Pulling up to standing? Really??"
The looks on their faces were priceless. It was obvious they weren't expecting that.
Dr K looked at the other dr (yes he has a name, I have completely forgotten it), who looked back at Dr K in surprise and said "Wow, I wouldn't go messing around in there-you don't want to mess that up!" Dr K kind of laughed and said "Yeah, wow, well if he's doing that well, we don't want to go in there. If it's not causing problems.....looking at his chart and his head growth...wow, he's doing great."
I expressed my concern at the radiologist's comments about being shocked that he hadn't been shunted (or ventriculostomy-ed as the case will likely be) and he said "well, yeah, looking at just the numbers and the reports, that makes sense, but looking at him? I wouldn't have expected this-he's doing great!"
And there you have it.
Dr K wants to go over Sam's case with the rest of the neurosurgery department just to make sure that everyone feels he is on the right page with this-putting off surgery still-and said he'd give us a call later this week after conferencing with everyone. I appreciate that despite the fact that this man in the department chair, very well known nationally and even internationally for his work and research with hydrocephalus, the co-founder and chairman of the National Hydrocephalus Research Clinic, pretty much THE guy that you would pick if you had your pick of anyone out there, that he wants to go over this all with the other surgeons in his department to make sure that the feeling is unanimous that it is still safe to wait, that there isn't cause to go ahead with surgery any time immediately.
As for now the plan is to wait until November for our next check up, pending of course any signs of increased pressure, or any change or stall or regression in Sam's development.
My baby will be 15 months old in November!
You know, that baby that everyone wondered if he'd survive to the end of pregnancy.
That baby for whom we had life-saving measures in place at birth.
That baby that was given a 60% chance of making it through his first month.
If you don't believe in miracles, you simply aren't paying attention.