Update: Another week of progress for our little ninja. This week we really increased his swallowing/oral motor focus. Tonight, he was vocalizing so much. After his bath, I was brushing his hair and he made an h sound with two syllables. Im not sure what it was he was trying to say but we usually just praise him and tell him to keep trying. He has been babbling a lot more as well. Anthony is starting to say a few words and everyone keeps telling me that should also help with James vocalizing? We shall see. Tonight we are back in the chamber after our two night break. This marks two weeks with the chamber/m-b12 protocol. I will be scheduling a follow up with the doctor soon. James mood really has changed since lowering his keppra. He has less moments of unknown crankiness. It seems as though his groggyness has really increased with his Valium. An hour or so after he gets it, he seems like he is really high and becomes very limp. As much as I dont like to see him like that, we just arent ready to start lowering it yet. Tomorrow is his last day of the Keppra ween and then we wait a week until we start to ween his Trihexyphenadyl (aka Artane). After that ween, Ill have to discuss it with his neurologist and see what the plan is from there. His medications are getting so much easier to manage! The last two nights have been a little rough with his sleeping but I blame them on a belly ache (that only happens at night). He is starting to get gas again. When he wasnt sleeping before it was because of gas and Im hoping the last two nights were just flukes! Of course, after I mentioned how well he was pooping, it stopped and Ive given him two enemas since. This weeks schedule seems to be a little less hectic than others with another holiday thrown in as well as one of James PT out of town. We are officially scheduling James for 30 minute massages daily. Jackie (my massage therapist sister) will work on him when she comes by but he usually is in therapies already. This week, he will have 4 scheduled massages with her. Last week she worked on his face because his range of motion in his mouth is very limited. The day after, Michelle said she noticed a huge difference in his range. So we are hoping with a more regular schedule, Jackie can work her magic on all of his extremely tight muscles. Tomorrow his stander will (FINALLY) get delivered after almost 5 months of waiting!! I hope he doesnt dislike it as much as I am imagining he will. He is at an increase risk of breaking bones because his bones will start to get brittle from not bearing weight. The stander will help with that along with a countless list of other things (trunk control, eating, posture, building muscle). This week is Kristen, who is the wonderful person donating her time to use the Guardian System (Biber protocol) on James last week with us as she has to return to work. So Michelle and I have to become comfortable enough with the device and protocol to do it ourselves. I see the potential progress James can make with this system and Im excited that it is now part of his treatment. He looks so cute when he has it on. We call it his helmet but it is just electrical stim pads and then we put an elastic headband on his head to keep them on. He likes it! When he gets a contraction at the mouth, the face he makes is hilarious. It pulls his cheeks up and opens his lips. Ill try and take a picture tomorrow if I remember. He has been laughing a lot recently and getting more of his personality back. We are getting ready to depressurize the chamber and get the kiddos to bed. We are looking forward to this week as it closes out the 2014 book of our lives which brought us one of the best and worst memories of our lives. 2015 will be James year and we will continuing enjoying one another every day. (Im not proof reading this so forgive me if I made any mistakes) đ˘đ Jenna
Posted on: Mon, 29 Dec 2014 02:56:52 +0000
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