Monday, August 3rd
After our 2 hour drive to Baltimore and dropping Reagan off at therapy, we drove over to Cole's therapy building and decided to walk to the Medical Records office in the basement of the hospital. I've left messages and still haven't gotten a call back but I know they can't ignore me if I'm standing at their desk! After roaming through the old psych ward (cool building!) and finding out that the records departmentdoesn't include imaging results we made it to another hospital basement and requested a CD with all the MRI/X-Ray data from last week. During our journey through the dungeons Cole said, "Mom, it's ok, there's no reason to be scared down here right?" So funny...
Cole had therapy Monday and I was able to sit in his session. We talked a lot about activities we need to work on at home and how to best develop an environment that is conducive to him learning. It was a little overwhelming to hear all the considerations that we haven't made before, but I'm trying to take them one at a time and determine how we can accommodate them. I will participate in the next two sessions as well.Reagan had a productive day that started with crossing off more days on the calendar that marks the end of her cast time. They also made water beads and sand art. The OT wrote her name in glue then she sprinkled sand over the glue and then used an eye dropper to color it. Given we were all tired from our early morning, we decided to have an easy night at the hotel Monday night to get ready for our week.
Tuesday, August 4th
I didn't get very much of an update on what Reagan did Tuesday, but she did leave very tired and brought home her sun catcher. This was something she made by placing beads in a flower shape and then they heated it up to melt the plastic. She was smiling when she arrived and smiling when she left so I am assuming it was a good day.
After picking Reagan up we surprised the kids with a trip on the Urban Pirates cruise at Fells Point. I've been wanting to take them on a cruise like this at Georgetown for a while now but never had the time. I didn't have very many expectations and we were definitely not prepared with pirate clothing, but that didn't matter. Everyone who boarded was given pirate clothes to borrow while on board the vessel. Although it was 91 degrees and both kids started out a little tired, it was an absolutely fantastic experience. The crew of pirates were funny and engaging. They were great working with the kids and everyone had a blast. They danced, did limbo, did a conga line and shot water canons at a pirate who stole the booty out of our treasure chest. The pirates acted out a feud and told a story about this angry pirate who stole the treasure and the kids listened so attentively. They've been talking about Mad Dog all week.
After the pirate cruise we decided to find somewhere to eat in walking distance. Fells Point is a very nice area with many old buildings that provide a very quaint atmosphere. There were a lot of people sitting outside at tables, drinking wine and enjoying dinner. We decided to eat at Riptide by the Sea. Although Reagan was too tired to make it through dinner, it was good to get out of the heat and have something to eat before heading back to the hotel for bed. It was an early night for the kids trying to get them some additional rest. Reagan was super difficult to get up this morning and I"m hoping tomorrow will be easier!Wednesday, August 5th
Therapy Wednesday was at the pool again. We decided to do a test run with the shuttle since I would be working on Thursday. Overall it was a smooth process, although they are unwilling to wait while we walk Reagan inside so we have to take the shuttle an hour earlier, wait an hour and then pick up the next shuttle back to the hotel. Overall it works well and given it's complimentary, it's a nice alternative to using a cab or Uber. Given Cole was complaining of head aches Monday, Tuesday and again Wednesday we decided to have a low key day and spend the afternoon at the hotel pool. Although VERY cold, it's nice having it onsite.
Thursday, August 6th
Thursday was a work day for me. I am working on a project for the Defense Information System Agency training on a new project management software. Megan took the shuttle and dropped Reagan off at therapy. Her therapy Thursday included a field trip to the grocery store and Michael's to choose materials for a project for next week. It's always amazing to me how you can make anything therapy. They had a lot of fun pushing carts and carrying the bags. After work I picked Reagan up from therapy, dropped her and Megan off at the hotel and headed back to Sterling with Cole. Unfortunately the only neurosurgery appointment we could get was at 8:45am in Fairfax on Friday. Worried about traffic, I decided it would be easier to get there from home than from Baltimore.
Friday, August 7th
Friday Megan took Reagan to therapy so Johnny and I could go to Cole's neurosurgery appointment. Reagan had a very busy day! She rode bikes, did Yoga, made a clay pot with a pottery wheel and did more art projects. She left therapy extremely tired today. We've had two really good weeks and she has had such an amazing attitude. I firmly believe having Jaryn to commiserate with her has really helped. Unfortunately, she told me today she didn't want her left arm anymore. I let her vent, I told her it's ok to be frustrated, I told her I was proud of her, and gave her some time to be angry. Once she had time to settle down we had a long conversation about how far she's come and how proud of her we are. The appointment with the neurosurgeon was just as expected. Dr. Myseros confirmed that the shunt hardware is fully functional and looks good. The good news is that we were going to have to do a scan next year and now we won't need to. He said it's plausible that the constipation could cause back pressure on the shunt that could cause head aches and vomiting. Given the shunt is operational he said we need to consult other specialists to resolve the issues with the head aches if they continue. Unfortunately Cole continued to have head aches this week on Monday, Tuesday and Wednesday. They weren't horrible, but still enough to concern me. We've been very aggressive with the Mirilax, but haven't been as productive as I would hope. After discussing our concerns with Dr. Myseros he recommended we consider seeing a GI. So I called and was able to make an appointment for MONDAY. I was floored - that never happens! We will meet with Dr. Louis-Jacques in Shady Grove with Pediatric Specialists of Virginia. The funny part is that we saw this doctor back in 2011 when Cole was in the PICU because he wasn't breathing. I'm sure he won't remember us, and apparently they have a new computer system so there is no history of that treatment.
Next week will be a busy week with one GI appointment, one appointment with a neuro opthalmologist at the Wilmer Eye Institute and I will be working three days next week on top of 6 therapy appointments. And most importantly, Reagan's cast comes off on Wednesday and she is over the moon about it!
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