The trend with Tori's high muscle tone and frequent states of agitation and discomfort continues... I believe we are in for another full week of it until she gets her botox and phenol injections. We are trying to counter her mood and pain with small, but steady zanaflex and xanax doses. At least she has kept her new G-Tube in up until now.
Meredyth went on a vacation this week so Tori hasn't had any ST sessions and she has had only one PT session to this day. Her last one of the week is scheduled for tomorrow. The weather has been pretty nice here this week so Tori has spent alot of time outside in her wheelchair which she really enjoys. I have been stretching her arms while she is in her wheelchair and she has been raising them in front of her, to her sides and somewhat over her head when I demonstrate the movements for her. It is hard for her given her muscle tone and her arm control isn't as well as it normally is either. Once the injections are done I am sure much of her control will return.
I have spent most of my time this week working between Orem and SLC for the Novell BrainShare Conference. I've had to race back and worth to pick Whitney and Brendan up from school and I'm thankful the conference ends tomorrow. Maria and Whitney are in Bountiful tonight for a dance competition which will run the next three days. So they will be travelling alot as well. All of us can get back to the more 'normal' routine next week!!
And that is the short update for today. Thank you for all of the love and support,
It has been another hectic week and here is another delayed update because of it. It has been very challenging lately as work is extremely busy and demanding and I am spending much of my time just trying to keep up with it all. Of course I could also spend every single day solely dealing with all of Tori's insurance, home care, health care and lawyer issues... It all just seems so overwhelming and never ending at times... But, we just have to take it day by day and try to get as much accomplished as we possibly can though I don't think we can ever be 'ahead'.
Tori's muscle tone is about as high or tight as it has ever been and unfortunately it continues to make her miserable... We have her on steady doses of zanaflex to relax her muscles and xanax to calm her agitation. We rescheduled her botox and phenol injections for March 29th so we are going to have tough it out for another week and a half. I guess I should say that Tori will have to tough it out for that time... Her right arm is so tight that when she scraped it across her stomach she actually pulled her GJ-Tube out of her stomach... It came out about two inches but it was probably still place able. So I gave her some medication to calm her and when I came back to see if it had taken effect she had pulled the while thing out. So I put in the new G-Tube we had as a backup and so far she has left it alone. Her arms are also bruised up from striking the rails on her bed. No matter how many pillows we stuff around her she always finds a way to knock them all off the bed and onto the floor. She also continues to draw her left hand and fingers to her mouth and cuts them up with her teeth. She was almost totally healed up but now there are a few more cuts to deal with...
All of us and Guy went to the Macaroni Grill for dinner Thursday night and had a good time. Tori behaved as well and she had some small samples of pasta, cheese, ice cream and cheesecake. Whitney went to Denver for a dance competition this weekend and I spent most of my time in SLC at the Novell BrainShare Conference which we are servicing. I'll also be up there pretty much all this week as well.
Good evening once again!!
Thank you for all of the concerned emails asking how Tori was doing and why the Pray4Tori site hasn't been updated as it normally is. It is quite obvious that there are many people checking Tori's updates on a regular basis. Tori is healthy and doing well and the main cause for delay was that Brendan and I have been at Disneyland since Friday night. We returned very late on Monday night and had a great three days in sunny California!! :-) We missed the rest of our family of course and maybe someday we can all go together once more. Maria, Whitney and the biggest Disney fan Tori were always in our thoughts.
Maria and Whitney held down the household and cared for Tori while we were relaxing. Tori remains very, very tight and we are attempting to move her botox and phenol shot schedule sooner. Shawn and Meredyth continued their PT and ST sessions with Tori. Meredyth assisted Tori in creating a colorful spring flower on paper and Tori choose all of the colors used. Tori did more work with the Yes\No switch as well and today they worked hard on trying to use a straw and a horn once more. If Tori can control her airflow in that fashion it will open up many other therapies and exercises we can try.
Tori has also been very vocal recently which we take as a very good sign. She will 'call' you at night if she needs to be changed, needs another TV channel or just wants some company. We are also doing our best to try and make her vocalize when she needs sometime. Practice, practice and more practice I guess. She may get tired of this approach and block us out but we'll gauge that when it occurs.
Tori, Maria and Whitney had numerous visitors over the weekend as well and it was nice enough outside on Saturday for some time on the deck. Even though Maria used sunscreen on Tori she did get a little burnt on her legs and neck. She looks like she caught more sun than Brendan and I and it was 90 degrees at Disneyland!! ;-)
Hello again everyone,
Tori is remaining healthy but her agitation levels are continuing to rise unfortunately... We feel it is due to the extreme tightness in her upper body and limbs and it will be hard to wait for the next round of botox and phenol shots she desperately needs to reduce the tightness. She has been really 'riled up' the past few mornings and that causes vomiting, profuse sweating and again even more tightness in her body. We've had to use xanax, zanaflex and valium quite a bit lately to help control her agitation levels.
She does well during the times when she is calm so we are hoping for more of that time. We have been feeding her yogurt and applesauce daily with the goal of one full container per serving. She has been devouring popsicle pieces as well and she seems to be drooling a little less than before. Perhaps she is getting better control of her mouth and throat at this point.
She has had her first PT and ST sessions of the week with two more remaining. Meredyth brought in makeup, mascara, a comb and some toothpaste. Tori selected the correct items based on questions like "Which one goes on your eyelashes?" then Meredyth applied some of the items on Tori if she indicated to do so. They did more facial and mouth control exercises as well and Tori was able to suck some liquid candy out of one of those 'candy baby bottles'. That is a pretty big step actually because if she had start using that 'sucking technique' we can eventually get her using a straw. Tori also went through the PT session with Shawn without much concern which is of course good news.
I have scheduled an acupuncturist appointment for Tori and I am looking into a few others as well. It might take trying a few of them to find the right fit. It is supposed to warm up this weekend so hopefully Maria will be able to take Tori outside for a while. I'm sure she is tired of being locked up in the house all of the time... Brendan and I leave for Disneyland Friday night and will return Monday evening. We are both looking forward to the trip but we are already missing having our entire family with us to share in the experience.
Have you ever looking into Advanced Bio-Mechanical Rehabilitation (ABR). The nearest clinic is based out of Montreal, but they do satelitte trainings in the US. Our son has a baclefin pump and we have been able to reduce the dose 120 micrograms since starting it with no increase in tone. I also know many families who have avoided surgeries like the tendon lengthening. If you want to learn more visit www.blyum.com or www.abrcanada.com or email me.
I am glad to hear about Tori's progress and am exploring the stem cell option. You are in our prayers.
Peach Bottom, PA
Mom of Jonny, 6, who has TBI from a car accident 3 years ago.
Tori has done well over the past few days and is remaining healthy. She also seems to be sleeping little more than usual but that is a good thing since she tends to become less agitated while she is awake.
Her home PT and ST therapies are continuing with Shawn and Meredyth coming over twice per week. We provide the PT on any other day of course. We are still trying to feed Tori each and everyday through her mouth and she can consistently eat almost an entire applesauce. She likes applesauce better than yogurt and we think it is because there is more texture to it. Tori's high school assistants made it over last Friday and worked with her a bit as well. They are also going to try and come over two or three times per week.
Tori's baclofen pump increase at the PCMC went fine and she is now scheduled for botox and phenol injections towards the end of the month. We also made an appointment with a orthopedic surgeon while we were there and have an appointment in early April to review Tori's tendon release surgery on her left ankle. We may look for another surgeon closer to home for the operation as well.
We took Tori for a drive today and also went shopping at Costco. When I asked her if she wanted to go out and that she needed to use her voice to tell me she was pretty quick to respond with an "aaahhhhh". So off we went!! Tori had a good time and enjoyed a few of the Costco samples as she normally does. She was also very relaxed this afternoon and evening and spent most of the time with us all in the family room. She really loves the beautiful and comfortable new quilt that Lauren's family made for her!! Thank you!! :-)
Another new week is upon us and we're hoping it will be a quiet and progressive one for Tori. I will also be heading to Disneyland with Brendan later this week for a little 'getaway' just for him. He deserves it as he seems to get shortchanged somewhat with our constant care needs for Tori and Whitney's various travel escapades to dance competitions. We are both looking forward to the trip!! :-)
Bonjour everyone, Tori's site just received a pretty significant system upgrade. After a quick tour, it seems every still works properly.
Please report any issue you may find to admin @ pray4tori.com or leave us a comment here.
Finally had a few minutes to send a note. I check your website daily, sometimes twice a day. Your family has captured my heart and are in my daily prayers. THANKS for all the updates. I loved hearing what was going on in China and of course, was learning from you for possibly treating Samantha with stem cells also. I'm considering going to the Dominican Republic for fetal stem cells with an American Doctor from Malibu. My friend with a 15 year old with severe TBI just got back. Also, have to comment on my reaction to Bob Woodruff. Saw him and his wife on Oprah on Tuesday and was in complete amazement that he is sooooo back to normal in every visible way. If he has any lasting memory or cognition issues, it sure doesn't show. In watching, of course I too related to every detail they shared about those days in ICU and coma and didn't realize that I was re-living it inside. And then the HUGE disappointment flooded me that Samantha didn't open her eyes one day and say, "Hey Mom where have you been?" like he did to his wife. His recovery was exactly what I wanted for my daughter and was deeply hoping for every minute of our journey. To see how it actually could have happened for us totally overwhelmed me. I had the biggest meltdown I've had since Sami's accident in April 2005.
After I pulled myself out of my sorrow pit somewhat, (still trying to get back in control emotionally), I feel excited that we have someone who will bring TBI to the forefront of the news. Public awareness will help us all so much.
Well, primarily wanted to just say hello and thank you for the excellent and detailed updates that I, for one, am learning from and that help keep Tori in my heart and prayers.
in His love,
Diana Palumbo...Samantha's mom
Everything with Tori is about 'status quo' lately and the only issue to report is that she seems a little more agitated at times. We've been settling her down with half doses of xanax several times per day as of late but we don't know what it means of course. Tori isn't ill or anything like that so we'll continue to watch her. Her sleeping during the night is still going well but we're still using ambien to help her a bit. She is waking up a two to three times per night 'hollering' to be changed but she is managing to head right back to sleep afterward. Not for me tonight though since this is another 3:00am update...
I finally got to meet Tori's new PT person Shawn early this week and he has been working well with Tori. He's on schedule to come to the house twice per week at this time. Meredyth also came over on Tuesday and had another good ST session with Tori. She worked on the computer for much of it as Tori created a slide show of pictures by selecting the ones she wanted. She hit the 'Yes' and 'No' switch with her right hand to accomplish this and then watched her own slide show at the end. Meredyth also used cold packs on Tori's face in an effort to improve Tori's facial muscle control. We still don't have those smiles yet...
Tori was quite riled up when helpers from the high school came over on Wednesday so nothing was accomplished. She was so agitated she was vomiting and we hadn't seen that in a while either. Tomorrow we are headed back up to the PCMC (Primary Childrens Medical Center) in SLC for a baclofen pump refill and we will also try and schedule her next round of botox and phenol shots while we are there. She is about one month overdue on those shots and perhaps some of her new agitation revolves around that fact. Her arms, wrists, shoulders and back are very tight at this time and she is probably very uncomfortable.
"Imagine that your life, like Lee Woodruff's, was perfect. You have a beautiful family, the golden horizon. For 27 days, Bob was living his dream — co-anchor of "World News Tonight." Then in just an instant, David Westin, president of ABC News, wakes her with a phone call to tell her that Bob has been seriously injured by a roadside bomb in Iraq and that there is shrapnel in his brain."