Wow, it has been a busy few weeks. Just a few updates about everything going on.
Eligibility Meeting
Eligibility Meeting
We had a meeting at the school June 18th to discuss the testing done to help identify why Reagan is struggling at school. Honestly it was very hard to see four years of testing and the results of the psychological and education testing that was done over the last two months. Although we knew she was having to retake a lot of tests and reading below level, but it was very powerful to see all the data in combination. She took a very large battery of tests which confirmed that she doesn't have an issue with IQ or memory, but she has been identified as having Dyslexia. Although glad to have some answers, it comes with mixed emotions because it doesn't explain why she struggles to memorize new content. We are hopeful the neuro psych eval sheds more light on that aspect. She was also identified as having significant attention issues, but was not identified as having ADD. Again, we're hoping to get more information from the neuro psych about what could cause these lapses in attention and "staring spells" if it's not ADD. The other issue that was uncovered was anxiety. Our hope is that by getting her help in learning, that perhaps this concern will resolve itself. But it is something that we will be monitoring and I will be curious if it shows in the neuro psych results as well.
I did hire an advocate to attend the meeting with us who is very knowledgeable about Dyslexia. The good news is that Reagan was found eligible for services and we will meet July 16th to draft her Individual Education Plan (IEP), set goals and determine the support and accommodations she will need moving forward. I look forward to having the advocate's support in understanding what accommodations and services could help her progress more smoothly through 5th grade.
Orton Gillingham Tutor
One suggestion to help her immediately is to provide specialized tutoring called Orton Gillingham. The approach is "a direct, explicit, multi sensory, structured, sequential, diagnostic, and prescriptive way to teach literacy when reading, writing, and spelling." We've schedule a Special Education teacher from the school to help Reagan twice a week starting next week. Although I'm sure it will come with some resistance, we chose not to send her to summer school so she can focus on this more customized approach.
I did hire an advocate to attend the meeting with us who is very knowledgeable about Dyslexia. The good news is that Reagan was found eligible for services and we will meet July 16th to draft her Individual Education Plan (IEP), set goals and determine the support and accommodations she will need moving forward. I look forward to having the advocate's support in understanding what accommodations and services could help her progress more smoothly through 5th grade.
Orton Gillingham Tutor
One suggestion to help her immediately is to provide specialized tutoring called Orton Gillingham. The approach is "a direct, explicit, multi sensory, structured, sequential, diagnostic, and prescriptive way to teach literacy when reading, writing, and spelling." We've schedule a Special Education teacher from the school to help Reagan twice a week starting next week. Although I'm sure it will come with some resistance, we chose not to send her to summer school so she can focus on this more customized approach.
Brain Injury Services
Along the journey in finding a neuro psychologist, we also made a connection with an organization called Brain Injury Services. They are a non profit who supports people who have experienced a traumatic brain injury. We met with them a few times and provided the intake paperwork and were finally accepted on their caseload! I met with the intake coordinator last week and we built a Care Plan to identify areas where they may be able to help us. More to come on this as we learn more about what they do.
Along the journey in finding a neuro psychologist, we also made a connection with an organization called Brain Injury Services. They are a non profit who supports people who have experienced a traumatic brain injury. We met with them a few times and provided the intake paperwork and were finally accepted on their caseload! I met with the intake coordinator last week and we built a Care Plan to identify areas where they may be able to help us. More to come on this as we learn more about what they do.
Pediatrician
In addition to the other appointments, Reagan had her regular annual appointment with the pediatrician. Luckily this was somewhat anticlimactic. However, we did discuss ADD medications and whether those would be difficult to administer in combination with the epilepsy medication. We also discussed the possibility of needing to switch her epilepsy medication if ADD is ruled out and the meds are causing the "staring spells". Although this is a decision that would be made by the neurologist, I like having this conversation with the pediatrician as well to get multiple perspectives. Luckily we are not seeing significant increases in the symptoms of precocious puberty so we think she is following the normally developing timeframe for girls her age.
EEG
We were able to have the EEG and as usual, Reagan was a rockstar patient. She was "the easiest all week" according to the tech! Although we don't meet with the neurologist until the end of July, I did call to get results. Unfortunately our neurologist is out of town, but I got a call back from the nurse. The preliminary results do not show any changes from last year. So while that's somewhat good news, I was still holding out hope that maybe they were better. The fact that they aren't worse, however, is not a missed blessing. One concern I've had after speaking with the testers and her teacher at the Eligibility Meeting is that the "staring spells" could be something called absence seizures. It's essentially where the seizures is very short and you often don't even notice it. Although this is not ruled out, the nurse said it is not likely she's having absence seizures since those are usually generalized (come from all over the brain) and Reagan's seizures are focal (originating from scar tissue in the area of the brain that was removed). So not bad news, but not really good news either.
Physiatrist - Botox and leg brace
When we started talking about doing electrical stimulation, our neurologist asked us to start seeing a physiatrist. This specialist is a physical medicine and rehabilitation physician who treats medical conditions affecting the brain, nerves, joints, ligaments, muscles and tendons. We met with Dr. Morozova Tuesday for the first time in 3 years. Reagan has complained a lot lately about tripping due to her toe drop so we wanted to discuss using a night leg brace again. Also, we haven't done Botox since 2013 and Reagan has shown an interest in trying it again. I'm hopeful if she sees that she CAN rotate her hand over that perhaps it will encourage her to continue to use the NeoFect application to work on hand control. The appointment went well and we left with a script to meet with the orthotist to have a brace made and an appointment for a Botox treatment. As you can see in this photo, Dr. Morozova asked Reagan to turn over both palms. She was happy to see that Reagan does have the range of motion in both her wrist and ankle, but agreed that she isn't able to use it and that Botox could help. Some children are so tight that you cannot physically rotate their hand over.
Dentist - Dental Surgeon
Reagan's orthodontist recommended she have three teeth extracted to make room in her mouth for the teeth that need to come in still. She was very nervous despite the encouragement from her younger brother about it not hurting at all (he had four extracted in February). But overall she did really well. She picked strawberry for her scented "calm me down" gas and as always, Slush came along to share in the fun. She wasn't quite as chatty as Cole was under gas, but she kept poking her lip and nose and laughing hysterically saying she couldn't feel her face. And of course she was very excited to see if the tooth fairy would recognize the extra effort put forth with the extraction. She didn't disappoint!
Swim Team
We are on year three with the Cascades Rapids and the kids are having a lot more fun this year. They both have friends they are swimming with and it really helps ! There are about 250 kids on our neighborhood team so it is very competitive. Many of the swimmers are on year round teams. Reagan's neurosurgeon told us early on that swimming is an excellent sport to help increase her range of motion. And we know that swimming is a good choice for Cole since eye/hand coordination is not as critical. They've had a lot of fun with their friends and I'm hoping to convince them to do it again next year. They both struggle but our goal at practice is to have fun and their goal at every meet is not to come in last. This week Reagan even shaved 3 seconds off her free style time! I am very lucky to have my niece, Allison, staying with us again this summer to watch the kids which makes getting them to and from swim team much easier. Reagan swims from 8-9am and Cole swims 8:45-9:45am. Definitely tough if you work full time in an office and rely on camps. We're glad we can make the schedule work.
Summer Box Lacrosse
In addition to swim team, Reagan started playing on a summer box lacrosse league last week. It will only run for 6 weeks but it keeps the stick in her hand and keeps her practicing. We all love how fast the game is when there aren't any out of bounds! Lots more play time for sure and it's much more laid back so the kids have fun. It has been super hot the last few weeks so they get tired out pretty quickly, but she's having fun playing.
When we started talking about doing electrical stimulation, our neurologist asked us to start seeing a physiatrist. This specialist is a physical medicine and rehabilitation physician who treats medical conditions affecting the brain, nerves, joints, ligaments, muscles and tendons. We met with Dr. Morozova Tuesday for the first time in 3 years. Reagan has complained a lot lately about tripping due to her toe drop so we wanted to discuss using a night leg brace again. Also, we haven't done Botox since 2013 and Reagan has shown an interest in trying it again. I'm hopeful if she sees that she CAN rotate her hand over that perhaps it will encourage her to continue to use the NeoFect application to work on hand control. The appointment went well and we left with a script to meet with the orthotist to have a brace made and an appointment for a Botox treatment. As you can see in this photo, Dr. Morozova asked Reagan to turn over both palms. She was happy to see that Reagan does have the range of motion in both her wrist and ankle, but agreed that she isn't able to use it and that Botox could help. Some children are so tight that you cannot physically rotate their hand over.
Dentist - Dental Surgeon
Reagan's orthodontist recommended she have three teeth extracted to make room in her mouth for the teeth that need to come in still. She was very nervous despite the encouragement from her younger brother about it not hurting at all (he had four extracted in February). But overall she did really well. She picked strawberry for her scented "calm me down" gas and as always, Slush came along to share in the fun. She wasn't quite as chatty as Cole was under gas, but she kept poking her lip and nose and laughing hysterically saying she couldn't feel her face. And of course she was very excited to see if the tooth fairy would recognize the extra effort put forth with the extraction. She didn't disappoint!
Swim Team
We are on year three with the Cascades Rapids and the kids are having a lot more fun this year. They both have friends they are swimming with and it really helps ! There are about 250 kids on our neighborhood team so it is very competitive. Many of the swimmers are on year round teams. Reagan's neurosurgeon told us early on that swimming is an excellent sport to help increase her range of motion. And we know that swimming is a good choice for Cole since eye/hand coordination is not as critical. They've had a lot of fun with their friends and I'm hoping to convince them to do it again next year. They both struggle but our goal at practice is to have fun and their goal at every meet is not to come in last. This week Reagan even shaved 3 seconds off her free style time! I am very lucky to have my niece, Allison, staying with us again this summer to watch the kids which makes getting them to and from swim team much easier. Reagan swims from 8-9am and Cole swims 8:45-9:45am. Definitely tough if you work full time in an office and rely on camps. We're glad we can make the schedule work.Summer Box Lacrosse
In addition to swim team, Reagan started playing on a summer box lacrosse league last week. It will only run for 6 weeks but it keeps the stick in her hand and keeps her practicing. We all love how fast the game is when there aren't any out of bounds! Lots more play time for sure and it's much more laid back so the kids have fun. It has been super hot the last few weeks so they get tired out pretty quickly, but she's having fun playing.
Up next in July...meeting with the neuro psychologist, casting appointment with the orthotist, follow up with the neurologist, the Botox appointment and Braille camp!
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