It has been a busy couple weeks and I don't know where to begin! Reagan had an appointment with her neurologist, Dr. Pearl and he said she looks great! When we pulled up to the office she said, "is this going to hurt?" Of course I told her, nope, we're just here to say hello to Grandpa's friend! After discussing several of our concerns, he recommended we have blood work done to rule out any issues with her thyroid causing her overheating issues. We're hoping it's nothing, but he felt like we should check it out. Breaking the news that she had to give blood was torturous. Although not as bad as having to tell her that the tech blew the first vein and we had to do it twice. She's such a trooper!
We also discussed the constraint induced therapy and he is very supportive of her participating in the UVA program. We discussed the electrical stimulation technique and he wants us to get a second opinion from a physiatrist. We had been hoping to avoid this specialist, but we're going to see Dr. Evans at Children's. A physiatrist is a physical medicine doctor - basically a therapist with a medical degree. She will be able to better ascertain whether the electrical stimulation could cause Reagan's brain to be more predisposed to having seizures. We got the first available appointment at the end of May. I guess because she is in the head of the department she is in high demand. Given her PT isn't in a hurry to begin the electrical stimulation we will wait for that appointment and see what the doctor says.
We also learned that Reagan will probably not be able to attend the Loudoun County Public School program next year. She is apparently too high functioning for the special needs classroom - great news right?! We are very happy she is doing well, but would like to enroll her in the Reverse Inclusion program at the same school. This program is setup to include both children with special needs [who have an Individual Education Plan (IEP)] and children who are normally developing (anyone can apply who has a child who is 4). Unfortunately we were told that Reagan can't participate as special needs because it would mean increasing from 3 days to 5 and they can't justify that need. She can't qualify for normally developing because she has an IEP. We are very disappointed that she is being told she can't apply like other children because of her handicap and plan to research our options. I visited with the director of the new Compass School in Ashburn and LOVE the principles and methodologies they are implementing so that may be a good fit for her.
Unrelated to the kids, I finished the bulk of a contract I've been working on for several months. We completed the build of the Comcast Executive Briefing Center in Naperville, IL and hosted our Grand Opening this week with several hundred people over three days. I look forward to completing the project and finalizing the processes and support systems necessary to run a successful program.
Cole had a follow up CT scan at Fairfax Hospital today. We were lucky to avoid anesthesia, but that meant he had to be bundled, taped to the table and forcibly held down by his mom. It was torturous seeing the look of fear in his eyes, but we are hopeful he was still long enough to get a clear scan. We will meet with his neurosurgeon and neurologist in the next two weeks to review the results. We have no reason to be concerned, but it will be good to have reassurance. We were also able to visit with several of Cole's nurses and doctors while we were there. Such an great team of people it took to get us to where we are today - we are blessed to be surrounded by so many amazing professionals!!
On another note, we completed the paperwork for Cole to enter the Lo Co system and have an appointment with the county this month for his initial assessment. I will keep you updated, but we expect that he will be admitted based on his visual disability.
Well that's about it for now! Spring is around the corner and I hope to have more non-medical updates as we get out of the house a little more!
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