Tuesday through Sunday, March 14th through 18th

Hello again,

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.

Tori's therapies continue though we had to cancel a couple of her PT sessions this week because of agitation and vomiting... Meredyth stopped by twice for the ST sessions and she continues to focus on Tori's facial, mouth and tongue control. She still isn't sucking out of a straw or blowing through it but we're not stopping until she can. We have been holding back on feeding her by mouth as normal because she is having those agitation generated vomiting episodes almost daily. She also stayed up quite late a couple of nights this week and I can't even remember which ones they were. It's just a blur sometimes and the weekends are there so we can hopefully try and recover some of our sleep time.

We are still hoping and praying that we will see some more improvements during the next couple of months. Anything that can ease Tori's pain and anxiety as well as our burdens would be greatly welcomed at this time. I would like to update everyone with great Tori related progress each and every time but brain injuries don't work that way unfortunately... Progress is often described as "Slow and stop" and we can certainly attest to that description.

Thank you all as always,


So sorry to hear about Tori

So sorry to hear about Tori having such high tone and discomfort. Chelsea has also been higher than normal for the past week, and at her last check-up at PCMC there was talk of a bacolfen pump. I wondered what your feelings were about Tori's pump, and also curious about zanaflex. How it works, how long you have used it, etc. My heart aches for you and Tori, because we somewhat know how you feel, and how exhausting it can be at times. Love for a child is a strong thing, and wanting what is best for them and not being able to give that to them is sometimes so hard. We check in daily with Tori, and keep you in our prayers too. If you have a minute (HA HA) I would be interested in your feedback on the muscle relaxers. Thank you for all you help, and example. Franklins (prayforchelsea)

Zanaflex and the pump

Justine also had the pump placed in Jan. '04. It had to be removed in april '04 because it wore through the skin. Justine is extremely little for her age though. At the time she was 50 lbs. and 4 feet tall. Because of the high muscle tone and she was only 1 when her drowning occurred it is been a very big struggle to get her enough calories. My sister has seen the pump going bad a lot at her hospital. Whether from infection or from what happened to teenie. But she had never been more relaxed and calm than when she had it. I wish it had worked for her. Justine used to have spells where she would cry and cry and nothing we would do would calm her. But she rarely does that anymore. We bring her into the livingroom after her bath in the morning and she goes outside or to the store or wherever I go she pretty much goes. I notice if she doen't get up where she can be where everyone else is she fusses till I get there. Justine pulls her tube out too. What makes it worse is they put in a tube that is called a g-j tube and we put her meds and her liquid into that tube because she too would vomit. That tube has to be replaced endoscopically. It passes through the stomach into the Jejunum. Now about the zanaflex. My sister is a rn for a childrens hospital and she works in the ward were the chronically ill kids come and the doctors prescribe zanaflex a lot she had told me before about several kids having really bad reactions to the zanflex and to watch out. She would have to breath for them because they would almost quit breathing and extreme blood pressure drops. Lots of stuff. Justine has been on it now for about 5 years the only side effect we knew was it made her sleepy. She has been in the hospital about 7 or 8 times since she started taking it and no problems were ever detected. When she was in the hospital in January she had an arterial line in for a few days and she was on an epinephrine drip because her blood pressure would dramatically drop they would get it back up then all of a sudden it would drop dangerously low. Finally after a couple of days fighting this I remembered what my sister had told me about the zanflex and the pressure drops coincided with the times she was getting her meds but with an arterial line in it was the first time they actually saw what it was doing to her pressure. So they stopped the zanflex everything was fine. She gets 2 mgs in the morning now and 2 mgs at bedtime. Which she used to get 4 mgs 3 times a day. She also takes baclofen orally now she takes 20 mgs 4 times a day. She does not get sleepy with that. So just inform yourself if you proceed with anything. With the pump make sure the surgeon is going to place it between the muscles like the plastic surgeon that removed hers told me it should have been and it would not have broke down the skin. It looked like she had swallowed a can of tuna. There is a website called www.pubmed.gov and you can read about almost anything. Do a search on zanaflex and on the baclofen pump. All kinds of studies come up. jodi - justine's mom