Wednesday, September 4, 2013

ROWAN UPDATE!

Last week after a long day at children's hospital for a round of follow-up appointments, I realized that I never shared about our first days at home after discharge. That is kind of irrelevant at this point but I wanted to still share a little bit about where we are today, three months later...

We started off the day with the actual rehab clinic attending who saw Rowan all through out her stay at children's. He tag teamed with a resident who sadly wasn't available that day and we were bummed we couldn't show off rowan's progress to him as well. Dr. McNalley checked her reflexes, watched her run and walk down the hall, balance and hop, asked me four million questions about the last three months and addressed all the questions and concerns I had. Bottom line he was blown away at how well she was doing considering how she looked when we discharged.

We talked about how there isn't anything at this point I am worried about and that the only things to note were maybe how when she is more tired she looks like she struggles more physically and has some absent mindedness with heightened ADHD symptoms. Although Rowan would appear to be almost a hundred percent again, she still has a long road ahead as her brain heals and remyelinates. He wasn't surprised that her speech wasn't perfect yet but still had total confidence there would be no lasting effects of the encephalitis. Thank God. 

In between that and our next set of appointments, we snuck up to the rehab floor to visit rowan's favorite physical therapist Shannon. Everyone was so excited to see Rowan, I almost started crying. Nurses who were around the corner heard her and recognized her voice, walking out, "is that Rowan??" I have a hard time remembering people I met last week, so it is so heart warming that these people who get to know thousands of kids in a career still remember each one. We also caught her speech therapist Laura, who was so overjoyed to listen to how far she had come since barely making sounds when she was discharged. The whole time we were up there Rowan walked around pointing out different things that she remembered - How she did this here and played that over there and we were all a little surprised at how much she remembered. It isn't uncommon for kids to kind of shut those things, like a hospital stay, out of their memory.

After a quick lunch at Starbucks, we checked in for a physical therapy follow-up in the rehab clinic. That therapist had her flex, move limbs, balance, jump and run and climb, squeeze her fingers etc etc. One thing that was crazy to watch, was now on her third time running for someone (the second being to show Shannon) she visibly deteriorated on coordination each time, showing that she was obviously tiring as the day went on. Rowan was bored with this appointment and had a hard time listening and focusing. I got tired of having to reel her back into the current task over and over. While I thought Rowan was doing beyond physically, this therapist took me down a peg, reassuring me that Rowan could do most everything any other kid her age could do - But the fact that she couldn't jump with both feet taking off and landing at the same time, her "drunk" looking run etc etc all showed that she still had a little ways to go. We talked about how O should prepare her school as far as PE and recess goes. Then we talked about things we could be doing at home to build her leg strength a little more.

Right after was a session with the occupation therapist, we talked while Rowan went crazy on all the equipment in the room and then the OT started putting task after task in front of her to test her abilities with her hands. She laced cards, drew her a giraffe, put little pegs onto picture cards with holes, dressed-up magnetic dolls and so on. This therapist was amazed at how well she was doing and just mentioned working on some exercises to be able to manipulate things in one hand again. She also showed me an amazing way to teach her how to tie her own shoes (video coming soon)! at the end we talked about how she agreed with Rowan's primary OT at providence, that once school starts, especially since she got into full day (more on that later), that practical every day activity will be the best therapy from here on out, therefor we'll phase out our weekly visits to see her ot here soon.

Our last meeting of the day was with a speech pathologist and the in house educator/school advocate. We had worked with her since Rowan was a patient and she had worked hard keeping Rowan's school in loop since day one back in May. We are so thankful for her, making the work for me a lot less once the school staff was back in. I only had to do minimal foot work to make sure that everyone was on the same page and looking out for Rowan. It was in this appointment that I got a major surprise - Since Rowan's last swallow study in July, I was under the impression that she was on a full liquid diet but that back then needed to be watched closely for a bit when she drank. I was informed that this was not the case and was really given the stink eye for letting Rowan go full boar on her drinks. Let me stop you right there - We haven't had one single issue so this was all ridiculous and I would have just brushed this off but this information will follow her to school, where they mentioned she might have to eat lunch with the nurse so she can closely watch her while she drinks from a thin straw with her chin tucked. Um, no. I am currently working on A. Convincing her school staff that mother knows best and this is a non issue and to let Rowan eat lunch with her friends and B. Trying to schedule a immediate swallow study (which means more x-ray that I am not thrilled about) so that it can officially come off of her medical files.

Within days of coming home from the hospital we slipped back into a new normal. We scheduled play dates and hikes and beach time and down time for rowan. Especially towards the end of summer we didn't put to much pressure on ourselves to make it to every therapy session and her therapists were on my side since they agreed being out in the world and "doing" was just as good of therapy as any. Especially in Rowan's case, where it isn't about re-learning as it is about gaining back strength and coordination and that comes with practice. Rowan can run, ride bikes and scooters, swing and climb at the park. She can swim and dance and skip and pretend to be a galloping horse if she wants. She can draw and color and paint and make a crown with tiny gems and stick on pieces. She can buckle her sandals and dress herself and brush her own hair. She is just about as typical as you can get.

Now that school has started most of her therapy will taper off. We will have a couple more sessions with each so that they can make that final decision and will most likely carry on with physical therapy for a while. Children's and her school agree that Rowan won't qualify for any in school therapy because her remaining disabilities do not get in the way of her education at all. You can understand her when she talks, she can write very very well again, and is not limited physically for what will be expected of her. She will have a 504 plan for now that basically makes sure that her needs are still met and the staff advocates for her when I can not. e.g. hers will mention the liquids restriction (for now) and how her communication ay take extra time. Rowan starts kindergarten today and couldn't be more excited! we met her teacher last week and i don't think that we could have gotten a better one, she was caught up on Rowan's story and welcomed her with open arms. I can already tell that this is going to be a great year!

*update: the swallow/eating news surprised me and was causing issues for back to school so i looked into this further. turns out her outpatient speech pathologist had sent along notes to children's just before the appointment clearing rowan for a full liquid diet, recorded back in july. it was disappointing to hear that children's must not have even looked at that. we got it all cleared up by showing the school the more accurate report and it is a non-issue for her lunch time now.

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