It's been a roller coaster around here. Some of the highlights were the celebration of National Adoption Month!
Note my fancy memes. Oooohhhh aaahhhh. I was also able to do some speaking on adopting from foster care. I was excited about that and hopefully will be on a podcast soon talking more about special needs adoption.
Marvin is getting older and understanding a bit more about the process and the culture. I am proud to be an adult adoptee and want him to take pride in his unique status as well. He is already talking about adopting all boys when he is grown up (he's also nine so girls are a big no right now).
Another really great piece of news is that Marvin passed his weekend seizure study.
He got to wear a "magic helmet" that itched like all get out and he was told to do "normal activities" like sitting quietly and coloring. HA HA HA HA. Ever try to nail Jello to a tree? Yep, we had to peel him off of swings, trees, and all things Marvin. It didn't work too well, but we have no active seizures and we survived. I told the neurologist next time I'd rather be chased by rabid cats up a tree.
Then we've had some moments that haven't been super great. We finally got answers on vision with Cary Lynn and they weren't what we were hoping for. While she does have CVI there is other damage as well. Let's start with her optic nerve. And I even brought visuals, yay!
So this is your optic nerve. It's healthy, pink, and very happy to be... well working.
Here you can see a bit better what needs to happen for healthy vision to occur. Cary Lynn had a lot of damage due to her stage three brain bleed. The optic nerve, which should look nice and healthy is shriveled and looks like white aspirin. Her visual cortex is also damaged from pressure.
Cary Lynn also has ROP or Retinopathy of prematurity (ROP). It is a potentially blinding eye disorder that primarily affects premature infants weighing about 2¾ pounds or less that are born before 31 weeks of gestation. The smaller a baby is at birth, the more likely that baby is to develop ROP. This disorder—which usually develops in both eyes—is one of the most common causes of visual loss in childhood and can lead to lifelong vision impairment and blindness.
The Dr was very concerned that VCU did not perform surgery to help with the ROP. Even though she would still have vision issues he felt that surgery would have helped save more of her sight. Since she was a ward of the state at that time we will never know. And that really hurts more than anything else.
The Dr was compassionate and all together wonderful. Cary Lynn can see light, colors, and is responsive to visual stimulus. He also said that the only person who knows what Cary Lynn CAN see is Cary Lynn. We were also told that glasses were a waste of time on her as they make things smaller and that's the last thing she needs.
As you can see she totally agreed with that statement. It was a hard few days, it didn't really hit me until I was driving home. I got home, had a really good cry, cleaned a few closets, got mad, and then decided that this doesn't change what we have been doing, and decided to just keep on keeping on.
I had been feeling better and we were getting back into the groove when another Dr. decided to rain on my parade. This time it was Marvin and I was sitting in another office and while Marvin got to go hang and watch TV with the ultra cool front office people the Dr. and I were discussing a new piece in Marvin's puzzle.
It's amazing the power of one word and what it can do to even a stoic been there, done that, bought the T-shirt mom that I tend to be.
"Mrs. Fields', I've reviewed all of Marvin's testing results, talked to his other Drs., worked with Marvin, and been through all of your notes. I don't know why everyone has danced around it and I believe in calling a spade a spade. Have you heard of Asperger's Syndrome or mild autism?"
"I'm sorry, you have the wrong kid. Marvin isn't autistic, he's a social butterfly. That just isn't even possible."
"Mrs. Fields', I know this isn't really fantastic news, but you can be social AND have autism. Marvin matches the profile and his other Drs. agree that Marvin falls in the spectrum. The good news is that he's still the same kid you came in here with. This doesn't change him. What it does change is how we can work with him better to help him be the best Marvin and the rock star kid that we know he can be. We can help you and your family understand and work with this."
Needless to say, this was not fantastic news. But the Dr. is right. The diagnosis doesn't define him or change him. He's still the same goofy nine year old who talks about video games and sharks nonstop. My cheeseball who likes to ham it up. He's still Marvin.
Both of my kids have not changed due to all the new and less than fun diagnosis surrounding them. They both rock out who they are and live loud and proud. While I'm writing Cary Lynn is napping in her pod swing (we got a nasty virus because no holiday season is complete without disease and pestilence in the house) with her ipad and Marvin is running around outside finding the tallest tree to climb up. Everything has changed while nothing has changed. It's just a new season in our home and one that we will adjust and adapt to because like it or not, the changes will keep coming and we will meet them head on.