Day 79 (Nov 12)

Tobias slept poorly last night and maintained a heart rate over 100 for much of the time.  It is surprising then that he did very well this morning.  I arrived at 9am and he was already in his speech therapy that started before visitors are allowed.  The first OT session followed directly after the ST and the lady who is filling in for the normal OT wanted to have Tobias practice eating.  Tobias is getting "regular" hospital food now with the only point worth noting is that the food is pureed so that Tobias doesn't need to chew it.  She wasn't familiar with Tobias' eating habits so I showed her how I have been getting Tobias to drink and eat.  He ended up eating five to ten spoonfuls of the scrambled eggs and peaches in addition to finishing off a container of orange juice.  The session ended when the PT team showed up to take Tobias down to the gym for a joint PT/OT session.  The two PTs helped the OT to sit Tobias at the side of one of the low, padded tables and then supported him from the front and back as they maneuvered him into a standing position.  Tobias can't control the large muscle groups needed to stand, but it still puts a lot of stress on his body to feel his weight  in a different configuration other than the bed or the wheel chair.  His circulatory and respiratory systems act differently and it puts his body under more stress.  In the past his normal PT and OT have kept him standing for only a few minutes before giving him a break by laying him on his back.  Today the PTs and OT let him stand for 10 minutes and then only stopped because they didn't dare go any longer.  Tobias wasn't showing the typical stress signal and seemed to be doing well.  He still wasn't able to meaningfully move any of the muscles needed to stand, but all of Tobias new challenges will start with him having no ability.  He has to be exposed to these activities to start the rewiring process between his brain and his muscles.

I was looking forward to taking Tobias outside for a long walk before his next therapy session in just under an hour, but I had to take him upstairs to get a coat and blanket first.  Just as I finished dressing him for the chilly fall weather, I noticed a puddle on the floor.  Tobias is still free of the problem of urine retention.  This unfortunately meant that he needed to be put back into bed for a change of clean clothes.  It also meant that I couldn't use the wheelchair until the cushions had been replaced.  There would be no time for a walk before the afternoon PT session.  I contacted the nurse and replacement cushions were brought before the PT session started.

I fed Tobias his lunch when he returned from PT and I was happily surprised that he was still eating well.  Normally he is tired after so much PT/OT, but Tobias ate about a quarter of the mashed potatoes and gravy and the chicken pot pie puree.  He also finished another container of orange juice.  He can't open his mouth on his own, but it is easier to encourage his jaws to separate enough that I can spoon in his food.  Tobias has also shown and ability to swallow while he is still drinking.  In the past I have just given him a small sip or two and then removed the cup so that he can swallow.  I still have to ration how much juice he intakes before he swallows, but several times he has swallowed during his drinking.  It will still take several weeks at this rate of improvement, but it isn't unreasonable to project that Tobias will be able to eat on his own as long as he gains the ability to open his jaws without dad's help of using the plastic spoon to pry them open.  It's encouraging and motivating to have something that Tobias is showing a sustained rate of improvement in.

I wanted to take Tobias out for a walk, but he was sleepy and the nurses talked me into letting him close his eyes and remain in bed.  At 4:30 an aide and I gave Tobias a shower and put him into bed.  Tonight I'm leaving early to see my mom so Tobias will be without family members for a little longer tonight than usual.

Hope over fear.