The active part of your day started today at 10am. You got dressed with some help and got into your wheelchair to begin your morning routine of shaving, brushing your teeth..etc. Although you are still not able shave your face on your own, you have recently begun doing your teeth brushing almost completely independently. We stay right next to you during this as you are still at risk of aspiration, but you are determined to do as much on your own as you can. I love watching for all of the new little things you can do - like squeezing the toothpaste onto the brush. It takes you SO much concentration and effort, but you never want help!
We all loaded into the van and headed down to the stable around 11am. It was a beautiful sunshiny morning, you needed to get your hands on a horse and we wanted some pictures of you and your horse Riley! While Mum gave Riley a talk about behaving, Nurse Gayle and I safely wheeled you out of the van...and into the mud! Your wheelchair was stuck! Always ready for a change of plans, we quickly adapted and got you standing and Pops and Gayle helped you walk to where you would take pictures with horse Riley. (Some of the pictures are included below) Riley was a bit excited this morning, so we had to work hard to keep you safe. You are only now beginning to stand steadily on your own for short periods of time, so we had multiple spotters right by you and had Riley under extra supervision! After our adventurous, yet successful "photo shoot", we headed back up to the house because you had school!
Your Homebound instruction teacher, Sharon, arrived at 12:30 and you spent the next hour and fifteen minutes learning more about the Executive Branch of the US Government. You always stay focused and interact with Sharon and I enjoy hearing the conversations the two of you have about the class topics.
After school, you had a little bit of time before your next scheduled therapy, so we used the time to catch up on the speech and swallowing exercises you had missed this morning. You had 6 bites of thickened juice today and showed us some strong swallows. You had a few coughs during swallowing, which had us on our toes - ready to help you if you were not able to clear your throat on your own. I often wonder if you get sick of us hovering around you whenever you have the hiccups, cough or sneeze. Throughout your recovery, those have been strong pre-indicators of throwing up, so we are by your side at any of these signs. Someday maybe you will run around telling us all to "take deep breaths" whenever we hiccup!
After some reading and other activities, 3:00pm rolled around and with it, your Music Therapist Tom Sweitzer. You spent an hour with Tom, making up new songs, doing breathing exercises (using a harmonica) singing and working on strengthening your voice. At one point, you were talking about surfing and writing a song about it with Tom. He misheard you and thought you said an "89-foot wave" when you actually said "A 9-foot wave". This, of course, led to some laughs and the creation of a very interactive story about an 89-foot wave and a surfing adventure. You try so hard to be clear in your voice and it must be frustrating when you are misheard or misunderstood. It is great how patient you are with us when we miss something.
That leads us up to where we are now...rest time. This is so important for you, Forrest. Your body continues to need rest and your brain needs some quiet time. Tonight you have Physical Therapy with Del, more swallowing, memory exercises, a shower and your nighttime routine, so your busy day is not done yet. Most of your days are full like this, often with back to back therapies and few rest periods. You are a champ and always keep going, even when the exhaustion is clear on your face.
This entry has turned out to be quite long, Forrest, but I just want to share one more thing with your blog readers. Earlier this morning, you and your Mum were talking about your perseverance and attitude. Mum hurt her back on her trip back from Malaysia and is quite uncomfortable today. She asked you how you keep your wonderful attitude despite everything you have gone through and you told her:
"Just think about the things that make you happy"
and then later today, you told her: "Fake it until you make it"
Forrest, you have such a brightness about you and a great attitude, and now we know what it is that you do in that courageous heart of yours to keep on going everyday. Thank you for sharing your wisdom with us and always brightening our days. When we have rough days, we think of you - YOU are what makes US happy.
- Tami (aka "Coach")