Our year started with a trip to Baltimore for an evaluation at Kennedy Krieger Institute (KKI). I think I've mentioned we are unable to go back to UVA this summer so we are looking at other programs for Reagan. We had a great visit and are currently waiting to hear whether KKI will have enough kids for a group session that Reagan can join over the summer. We would live in Baltimore during the week and come home on weekends. She would be in session 5 days per week for 6 hours per day. If there are not enough children for a group session (three of similar age and ability) then they have offered a program starting May 26th which will be 5 days per week but 3 hours per day which requires us to pull Reagan out of school. We are concerned about the impact of her missing the last 3 weeks of school and definitely prefer the summer option and are praying that works out for us. I have a meeting setup with the Principal to discuss the impact on Reagan's transition to 1st grade next year if our only option is to have her participate the last three weeks of the school year.
Given we will be at KKI for Reagan, Cole will miss his usual OT session. We requested an evaluation for Cole to determine what services may be available for him while we are there. After the evaluation they said he would definitely benefit from services and recommended weekly OT sessions in addition to sessions at the Sensory Gym and a referral to the MD School for the Blind. Once we have the dates set for Reagan's program we will be able to move forward coordinating these services. We are hoping to have more information by April. Until then, we wait.
The other exciting activity in January was Reagan and Cole's belt test for Tae Kwon Do. Neither had ever done a belt test before and didn't what to expect. Both had a report card component of the test completed by Mom. In addition, Reagan had to memorize 8 questions, 8 Tae Kwon Do terms and had to be able to count to 10 in Korean. Given Cole is in the "cubs" class he didn't have anything to memorize. Needless to say, she studied for weeks and was very well prepared. Both kids were given their yellow belts and were super excited to get their first trophies! Master Lee is their main instructor, but they also have classes with the owner, Master Choi.
One big change for Reagan becoming a yellow belt is that the classes started to incorporate sparring. Although very apprehensive at first, she has enjoyed being with her new friend Tory and is warming up to the idea of the pads and helmet. Unfortunately she is still resisting putting on the arm and leg pads. The Masters are being very understanding and aren't pushing it so we'll give it some time and hopefully she will realize over time that they will protect her if she gets hit!
In addition to the belt test in January, they also participated in a team competition in February. They had a few preparation sessions where they talked about team work and the importance of working as a team. Then for the competition they were divided into similar belt color groups and competed against each other in front of the Master. Reagan was pretty excited she was able to compete with her friend Emma!Reagan also had an appointment with her Physiatrist (Physical Medicine), Dr. Morozova in February. When Reagan had her surgery in 2009 we didn't know if she would ever walk. We were so excited when she started walking at 13/14 months that having an orthotic was a minor inconvenience. Over the last 4 years she has had a new brace more than once a year and they got bigger and then started getting shorter. And now we have BIG NEWS! Dr. Morozova agreed that she doesn't see a difference in the way Reagan walks with and without the brace. So we are taking a trial period without the brace to see if we notice any increased falls or change in her gait. So far so good! Most people have NO IDEA how hard it is to find shoes that fit with a brace. So this is SUCH exciting news. Not to mention, the last brace was $855 and it's one more appointment and one more factor in the equation when troubleshooting issues with blisters.
In January we also switched insurance companies which required us to leave Children's Therapy Center. After more than 5 years there, we said good-bye with great apprehension. But at $1200/month for therapy, we couldn't justify staying. Both kids transitioned over to INOVA Loudoun Hospital in February. Reagan is now seeing Jason for OT and Lillian for PT and Cole is seeing Kelly for OT. Although we have only had a few sessions, so far we are very happy at the new facility and excited about having new goals and a new focus. One great benefit we are seeing with OT is that the therapist is asking Reagan if there are things she does that are hard and is asking if she wants to work on those things in therapy. There are a few moves in Tae Kwon Do that are very hard for her and she has asked to work on those. We are very excited to see her taking an active role in trying to make progress and especially excited to see her start to make that progress and realize why therapy is so important. Good things to come!!As if that wasn't a busy enough start to the new year, we were also able to get a follow-up appointment with the Developmental Pediatrician in February. As you may remember, our first appointment came after a 6 month wait and was a terrible experience because Cole was severely constipated and unable to complete the assessment. This session he was in a great mood and the Nurse Practitioner, Sue Lansbury, was able to complete the Peabody Vocabulary Picture Test (PVVT) assessment. And would you believe Cole was assessed to be at the cognitive level of a 5 year 6 month old?! We were so excited to see him do so well on this test. There were four pictures on each page and he had to point to the picture that the tester asked him to. Overall we had a great appointment and talked through our concerns. We look forward to going back at the end of the summer to touch base before school starts in the Fall. Sue will be a key element of support when it comes to explaining and advocating for the services and modifications Cole will need in the school setting.
As a follow up from the CHAMP study we completed in August at UVA, we had to go back for the 6 month evaluation. As you may remember, she had a battery of activities she had to complete with both her left and right hands. This assessment was done 1) before therapy, 2) right after therapy, 3) 6 months after therapy, and 4) 1 year after therapy. The goal of the testing is to look at how much carry over is seen from the gains during therapy. It was good to be back in Charlottesville even if it was only for 3 hours. It was a long day of driving, but we stopped in to see Sue and Ruth and brought them cookies. It was good to see everyone!
We had a crazy weather week last week with so much cold weather and snow that the kids were out of school almost all week. We took advantage of the snow days and took a trip to Udvar Hazy Air and Space Museum one day. The kids had a blast - their favorite part was the space simulator that played a movie in an enclosed cabin that felt like you were taking off into space to launch a satellite. The trip was inspired by Cole's keen interest in space and planets. His passion went into full swing when he saw the astronaut costume!
We also took advantage of the snow days and spent a day at the Baltimore Port Discovery Children's Museum. It was a great opportunity to play but also have some educational components to our day. It was a bit of a drive, but definitely worth it! Although they loved the three floor climbing section in the middle, both kids found the golf ball tube pretty cool.
Unfortunately we also had a sick daddy one day so we decided to make him his favorite chocolate chip cookies! We had three full days of focused time on hand strengthening and "lefty" use. It's always nice when you can weave play into work and it's transparent to the kids!
We hope to have a very boring March with a possible mini vacation during Spring Break. Then we will gear up for both neurosurgery and ophthalmology appointments in April. Unfortunately we've had 5 separate days where Cole has experienced severe headaches. And although they only lasted 30-60 minutes, we are nervous he is having intermittent shunt malfunctions. Unfortunately it can't be diagnosed unless we make it to the CT/Shunt Series machines WHILE he is having the episode…which is clearly impossible. We are currently tracking the dates/times he has head aches and trying to rule out any other possible explanations such as constipation or dehydration. We have been in contact with the neurosurgeon and will monitor the situation until our appointment. Luckily Cole recovers quickly and goes about his day.I have promised to share some of the kids' funny comments. I have two to share in this post. They are probably funnier if you know Cole well, but the way he thinks is absolutely astonishing to me! He looked at me and held up his hand and gasped. He said, "Oh NO! WHAT happened?" I said, "I don't' know honey. What happened?" He said, "that finger is littler than the other ones. How come?" I said, "Well that's your thumb, it's supposed to be shorter." He said, "Well that is just ridiculous."
The next one is a little PG-13 so hopefully I won't offend anyone…but I found it hysterical. Unfortunately Cole suffers from constipation. It has been two weeks with no movement and a full cap of Mirilax the last 6 days in a row and still nothing. Unfortunately we had to use a suppository…which he HATES. After many tears, cuddling and finally relaxing, he looked at me and said, "Hey mom. When I grow big and you grow small I"m going to give YOU a suppository." Man I love that kid!
