Monday, July 27th
Reagan went to therapy at the regular time Monday and had the entire therapy team to her self! Jaryn
wasn't able to attend so that means Reagan was EXTRA tired because she had all the attention all day. She also came home with a book that she and her OT, Nicole, made on Monday. She had homework that we needed to complete over the weekend that included a paragraph at the bottom about how I thought she was progressing and any comments on her mood/behavior related to the program. I mentioned she was frustrated that she couldn't be as independent as she was before the cast. Well the book they made was SO AMAZING! It has her name on the front with a big heart. Then the first page she shared information about what would be hard with the cast on. The second page outlined what she will need help with because she has the cast. The third page outlines what she will be able to do better once the cast is off because she is making lefty stronger. The fourth page starts a daily journal where she can note the things she thinks she did really well that day. I absolutely love this idea because when she gets frustrated we can read through the book and have a little reminder of our goals. It also allows us to spend time each night reflecting on what she did well that day instead of getting caught up on what she can't do as well. We have used this every day to journal.
While Reagan was at therapy we went the Baltimore Zoo. We had a great time and I posted information about that in my previous post. As I mentioned, the $11M penguin tank was very cool. You could watch them from outside (above water) or from inside (under water). It was later Monday afternoon that we took Cole to the ER at John's Hopkins and he was admitted for head aches, vomiting and concern for a shunt malfunction.Tuesday, July 28th
We spent the majority of the day Tuesday at the hospital with Cole. Once discharged we went to pick Reagan up from therapy. Tuesday they did a neat art project where she had to squeeze eye droppers with color die and oil to make a picture. They also experimented with holding a tray and tilting it different directions to get the die/oil combination to run across the paper. Both were super difficult, but it was a fun experiment. They also made playdoh on Tuesday. Honestly we drove straight to get her after being discharged from the hospital with Cole so that is all I remember from the debrief at the end of the day…sorry I don't have more.
Wednesday, July 29th
Since therapy on Wednesday is only 1/2 day, we decided to head to the Maryland Science Center and Planetarium after therapy. I wasn't sure how much would be age appropriate for them, but we had a great time! The presentation on Pluto in the Planetarium was excellent and very informative. Given it was a dark room and had well lit stars/planets, Cole was able to watch the entire show. The dinosaur exhibit was very cool and the bed of nails that Reagan laid on was intriguing! The center is definitely geared toward slightly older kids, but we had a great time and will definitely be back.
Thursday, July 30th
Thursday was a busy day! We dropped Reagan off at 9am and ran by the pharmacy to pick up the magnesium citrate that the pediatrician said we need for Cole. Then we had an appointment at the National Federation of the Blind to learn more about what technology is available for Cole. Our visit, while insightful, was very difficult. Their recommendation is to teach him braille almost exclusively since learning print is much easier and could be picked up later. There are a lot of very cool technologies such the Braille Note by HumanWare or the TOPAZ by Freedom Scientific which has a four hour battery life. One recommendation that they did suggest was having a National Reading Media Assessment to determine not only how well he reads but also what type of learner he is (visual, auditory, etc). I made some amazing connections and learned about some great parent groups. I also learned about a Braille Enrichment Literacy and Learning (BELL) program for learning braille. They run this program for 2 weeks every summer and have a location in Arlington. It may be something we will consider for next summer. Unfortunately we missed the one this summer. It was a great visit, but truthfully I'm a little overwhelmed with the sheer volume of new information that needs to be considered and the big decisions that need to be made. I purchased several books and plan to start reading them in preparation for meetings with the school that will need to be scheduled in September.
After the visit with the NFB we headed back to the hotel to get Cole started on Operation Clean Out. We were anxious to get this started in the hopes that we would be able to make it to his 2:30pm Occupational Therapy session with Emily. After dropping off Cole we went to pick up Reagan. She had a great day of therapy. They went duck pin bowling, made beaded sun catchers and played games. After getting Reagan we headed back to pick up Cole and then headed back to the hotel to finish Operation Clean Out.
Friday, July 31st
I can't believe it's the last day of July! Wow, where has summer gone? Well our last day is always a little more hectic trying to get the room packed and ready to head home. With the added stress of a 4.5 YO shunted little boy who hasn't pooped since we left the hospital, the tension was high. We were able to get 3/4 of the bottle of magnesium citrate in him the day before and decided to get back on the Mirilax regimen Friday to ensure we could keep up with the schedule. So we stayed in the hotel until checkout, walked around a little downtown and then headed to pick Reagan up at therapy. She had another great day. Today they made bead necklaces and played Topple. As you can tell, as the week goes on I learn less and less about what they do during the day. But as tired as she is when she comes home, I know they've been busy. But to end week two with a smile on her face is priceless!She's now half way through the cast part of therapy and she's counting down the days…literally. Overall it's going very well, although our homework got longer for this weekend. No rest for the weary! Unfortunately Cole isn't making very much progress on Operation Clean Out. We have two more days of the higher Mirilax dose and hope we start to see relief by Monday. I was able to make a neurosurgery appointment for next Friday to follow up and review the MRI/x-ray results with our neurosurgeon. Apparently the stage coach will not be able to reach their office before next Friday so although millions of dollars have been invested in Electronic Medical Records, I will be tracking down the medical records office in the basement of some building at Hopkins on Monday so I can hand carry the CD to the doctor to review…while I'm sitting in the room. Archaic and inefficient don't come close to describing my feelings of this process. Luckily I am "living" in Baltimore so it won't be too problematic to try to pick up.
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