Thursday through Sunday, March 29th through April 1st
Our trip to the PCMC (Primary Children's Medical Center) in SLC went well Thursday morning. Maria, Brendan, Tori and I arrived just after 9:00am and Tori went in for her botox and phenol injections at 10:00am. They sedated her first then gave the injections to her wrists, forearms, biceps, shoulders, neck, pectorals and throughout her upper back. She came out after 45 minutes and spent almost another hour in the recovery room while her sedation wore off. So we loaded her back into the van and headed home so Maria and Brendan could celebrate his 6th birthday in a little better fashion by going birthday present shopping :-) He enjoyed the day much more upon returning home.
We were a little alarmed when they weighed Tori and she came in at 96lbs... We don't trust those bed scales that much but we knew she had lost some weight after staying relatively steady at 105lbs for so long. Her feeding routine hasn't changed in some time and we are wondering if the increased muscle tone, agitation and sweating during the past couple of months caused her to burn far more calories than usual. She gets 2000 calories per day through seven 8oz cans of Jevity 1.2 liquid nutrition and that is well within bounds for her age and weight. We will probably try and give her an extra can a day for a while which will give her almost an additional 300 calories per day.
Tori has definitely been sore for the past few days but her arms are thankfully so much looser and easier to move than before!! We also bumped up her Artane prescription to 8mg per day from 4mg per day. We are going to be aggressively raising the Artane intake by 2mg per week until we begin to see some results because right now I don't think it is reducing her muscle tone at all... We've been giving Tori Tylenol for her pain and she was running a slight fever Thursday and Friday nights.
Megan from Timpanogos High School stopped by and Tori had a good session with her. Megan had cue cards with sentences on them and would read each sentence to Tori then hold the cards up and ask a question about one the cards and Tori would respond by looking at the appropriate card. Tori got about 8 out of 10 correct. Meredyth also had a positive ST session with Tori as she was making "aaaahhh" and other various sounds. Meredyth continues to focus on improving Tori's tongue and mouth control by doing numerous exercises with her.
We have unfortunately noticed some new type of seizures with Tori... They are different than startle seizures and I caught Tori in one early Saturday morning. We generates alot of saliva during them and even though her eyes are open she can't focus on you. I don't believe she can see during them and as with a startle seizure she is totally limp and exhausted afterward. You can't hear her having the seizures either but several times when checking her at night she has had that post seizure limpness in her limbs so we know she has had a seizure. Perhaps there are some changes happening in Tori's brain right now and we'll just have to continue to watch her as closely as we can.
Tori, Maria, Whitney, Brendan, Guy and I went to the 3D showing of "Meet the Robinson's" Sunday afternoon. It was entertaining and Tori did well watching the movie and even had a few naps during it as well. We didn't use the headphones on her this time and the loudness of the movie didn't seem to bother her at all.
Brooke Barels is returning home after her SCT treatment in Hangzhou and Vicki provided a great blog during their stay. James was Brooke's therapist as well and they posted some good pictures of their trip here. They also had an NBC crew with them during the trip and there will be an upcoming newscast or special about it coming soon so everyone will be able to experience a little bit more of Tori and Brooke's journeys. Chris Barnes and Koo are also leaving for China tomorrow and we wish them both the best of course and are hoping and praying for positive progress during their stay in Beijing.
Thank you as always for all of the love, prayers and support and we are hoping Tori has a great week ahead of her.