Unfortunately I needed to move both neurology appointments due to scheduling issues and the wait was close to 4 months with the neuro we usually see. So at the end of April we got an appointment with the nurse practitioner. Given the expected medication increase for Reagan, we didn't have the luxury of waiting four months. We met with Stephanie Stavish (instead of Dr. Lavenstein) and she had an excellent bedside manner with the kids and the appointment went very well. We had several years of history to run through quickly with both kids, but I was VERY impressed with her knowledge of their complicated history coming into the room. Overall she said the kids were looking great and based on Reagan's weight gain agreed that we needed to increase her seizure meds from 5ML to 6ML twice a day. Her recommendation was to increase at night only for one week and then increase the morning dose a week later. We followed that instruction and it did NOT go well. Since Reagan started the morning meds and would go straight to school I hadn't seen how the meds were working. On the Thursday after the increase (day 4) I volunteered in the classroom and Reagan could barely function she was so heavily sedated. I felt horrible we had gone 3 days without realizing her little body couldn't handle the 1ML morning increase. So we weaned back down and did a more gradual increase over the next two weeks and she's now well adjusted. Definitely something we'll approach more cautiously next time. As we left the appointment I asked if we could wait a year for the next appointment and she said no…she felt we really need to still come every 6 months.
In the middle of May we had our appointment for Cole with the Low Vision Specialist, Dr. Alibhai. Cole's vision specialist from school joined us for the appointment and it was very helpful not only to share her professional feedback, but also to see the eye exam and hear the recommendations from the doctor. Although I was very happy with the way the doctor engaged Cole in discussion and really worked to read him, it was a very tough to hear his opinion on Cole's visual abilities. When covering his left eye, Cole was unable to read the eye chart at all regardless of how close he was to it. When covering his right eye, he was able to read the top few lines at close range, but nothing more. The doctor was also able to test his ability to see contrast and develop a contrast requirement for his vision. So you are probably wondering at this point what the benefit of a low vision specialist is over a traditional ophthalmologist? Great question. The ophthalmologist we see helps prescribe glasses, identify developmental changes and possible surgery options. The low vision specialist is an optometrist and his focus is what accommodations and assistive technologies could be used to help Cole. Unfortunately, his prognosis of Cole's vision was slightly worse than the ophthalmologist and he said Cole can see at 20 feet what the average person sees at 500 feet with the left eye and at 800 feet with his right eye. He said without his left eye he will be completely blind (not the first time we've heard this). When I asked if Cole will ever be able to drive, he said, "who knows, you should ask Google." Apparently they are testing Google Chauffer and not only is the driverless car technology funded by the DoD at $2M, it has already passed legislation in four states and DC and these cars are on the road! They will be commercially available in 2020! Just to let you know, Cole will be 16 in 2026. My question is…if it's driverless then do you still need to be 16? You technically don't need a "driver's" license if it's driverless right?! Hmm...
We also had a tough conversation about accommodations. He said it will be too difficult to increase the size of the worksheets in Kindergarten for him to see them so he is recommending a Closed Circuit TV (CCTV) for him to use at school. I don't know why I didn't see this coming, but it was a huge kick in the stomach for me. I guess I was still holding out hope that Cole would be able to see his work like other kids but just have to hold it closer. I'm now very torn on how to approach this new set back. Unfortunately with recent cut backs the State no longer provides the equipment. So it will have to go through a special request process to the Loudoun County Assistive Technologies Center. If we ask for it now and he's not quite ready to use it then we'll have outdated technology when he IS ready. Not to mention, I'm completely overwhelmed with the options. For example, the unit the doctor showed us is completely stationery. Reagan currently moves from table to table for her "center activities" in Kindergarten. When I asked him how Cole would do that, he said he won't and that I need to recognize that our most important goal is to provide him an education. But as his mother, I also worry about how he will learn to socialize, how to share crayons, and how he will feel when he has to sit by himself. Definitely first world problems, I get that, but still so hard to know HOW and WHEN I should be advocating and for WHAT. I also asked the doctor what accommodations I should request for outside of school activities like the music classes he was taking or Tae Kwon Do class. His response? "Danielle - after Cole leaves the education setting, no one will care about him. You can't follow him everywhere he goes. You must learn to let him advocate for himself and let him ask for what he needs. You can't always be there to get him help." So true…but so hard to accept especially at age 4! Cole is doing much better at Tae Kwon Do, but there are still times he struggles to follow along and I can't help but wonder if he is having trouble seeing the Master and what he is supposed to be doing.
The Doctor also had him try using a monocular and try to focus the CCTV unit. The benefit of the CCTV technology is that anything can be placed under the projector and it displays on a big screen. Cole can then zoom in and focus as he needs to based on the size of whatever he is viewing. After a long conversation, the doctor recommended we continue to see him every 4 months to follow up and determine what additional help Cole may need. Begrudgingly I added yet another specialist to our "see you in 4 months" list and left knowing that my research project just got a lot longer.
I have since found great information on the American Federation of the Blind website and on the National Federation of the Blind website. I also found a Technology Center for the Blind in Baltimore and have contacted the coordinator to schedule a visit of the facility. There will be a lot big decisions to make when selecting equipment such as, should it be handheld or portable? If it's a fixed unit in the classroom he won't have access to it in the library, art or music class. Also, I'd like a unit that can take snapshots of what he is viewing that he could view later. The unit we saw in the doctor's office also allows you to rotate the head of the projector so he could zoom in on content being projected on the board at school or on a promethium board. Another question, though, is at what grade is the majority of content on the promethium board (not worksheets) such that an iPad app that projects that content may be a more suitable technology. This technology currently exists, but after a conversation with the IT person at the school, it's possible the WiFi/app configuration as it currently stands may not allow it. Luckily I have a technology background so I know the questions to ask. But it really comes down to figuring out WHEN do I ask for WHAT knowing full well that it will take months to go through the request - process - approve - purchase - integrate timeline. So we go back in September and until then it's back to the research I go….
A much less taxing appointment was Reagan's 6 year pediatrician's appointment. I always ponder what it's like to only have that one appointment every year that most kids have. And I can sum it up in one sentence. She's growing right on the curve and looks great! So easy…And with that, Reagan is now six! She had a fun celebration at the house with a few close friends, classmates, and a hilarious magician named Louis. I was a little worried the kids may not understand the magic tricks since there were several younger kids, but with capes, magic hats and wands in hand, they watched the show and laughed hysterically!
Next up is physiatry and then we're going to enjoy some summer fun before we head to John's Hopkins - Kennedy Krieger in July. And as promised, I have started adding funny lines from the kids. Although this one may be slightly rated R, it really shows Cole's character so I can't help but share it.
We are still working very hard helping Cole to be fully potty trained. It has been a long road and although he's doing well, he still has some days that are harder than others. Last week he was going to the bathroom and said, "Hey mom. I just peed a straight line and then a drip. That's kinda like the letter "i". You know, the lower case one." I couldn't help but laugh, encourage him to continue to dot his i's and we carried on with our day. The next day he was going to bathroom again and said, "Hey mom. I peed a straight line again but there wasn't a drip." I said, "so I guess it's not an "i" then huh?" He said, "well it's not a lower case "i", it's more like a capital "i"." All I can say is YUP, you got that right kid!
When I think about how much he has overcome already and how much he has still ahead of him, I can't help but marvel at the way that he thinks and wonder where his life will take him. I try to remind myself when I get sad about him not being able to drive or having to sit by himself in Kindergarten that his life is an open book and it's up to us to help him see how wonderful that can be. And although some days are harder than others, like when he got a goose egg from walking into the key making machine he didn't see at Home Depot or when he face planted into the rock wall in the basement because he didn't see someone on the swing, I remind myself that this is all he knows. Our attitude will drive how he approaches life and whether he jumps back up and asks how high. I can't fix everything, but I can love him with every bit of my being and teach him to face life head on…and some days that's just enough to feel like we can make a difference.
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