blogs

hello,
I would like to join my brother and wish a happy birthday to Tim !!
And also my best wishes on this 4th July.

I Continue to hope and believe in Tori's progress.
Take care of you.
Love,

July

Tori's friends spent a lot of time creating a book for themselves and Tori. It was a shame that it was only available for those able to visit the hospital and now the Schmanski's house (well right now it is sitting on my desk).

I took the liberty to unbind the book and scanned every pages of it. It is available at The Dance Club:: Tori's book.

The most difficult part in this, after reading every single page of course, is going to be putting the book back together with knots as nice as before.

A WORD OF CAUTION: The book was authored by the girls with the understanding that Tori's chances of survival were very slim. The content is very moving.

Random quote:
...Tori you are just so amazing. You are just the cutest girl ever! I love how you are just always yourself!...

Yesterday, of course. But I wasn't going to be the one to put that information out there! Thank you, Guy, for stepping up to the plate and letting everyone know that a special Dad is celebrating another birthday. Tim, if I could give you your birthday wish I would. Since I can't do that, I'll keep you and your family in my thoughts and prayers every day. Love, Auntie Jill and Uncle Donny AND BEST WISHES ON THE 4TH OF JULY!

Today's nurse was concerned that Tori was getting quite warm. We were told that 30% to 40% of the body heat is released through the head. At one point, she figured that Tori was sweating and decided to undo her braided hair.

Maria and Tim tried for a while to straigthen it back and spread it accross the pillow so she could cool off a little bit. Well, let me tell you, that was a lot of hair! Tori would have been mortified if she had been awake to see her hair like that. Maria washed her hair.

Tori brought a lot of warmth to my heart today. While she was quiet and mostly asleep today, she did wake up for a few minutes. She was really alert and was starring for long seconds. I could tell she was trying to communicate something to us. Seeing her alert re-juiced my convictions. A lot of it is perception of course, but no one can take away how much we believe in her!

Tori was again awake for much of day and she slept all of Saturday night as well. Guy and I gave her physical therapy today on her legs and arms. Tori really does not like the hamstring stretch at this point and she will stiffen her whole body and wince with pain when we attempt it... It must be done though and we hope it will become easier for Tori as we progress.

When the nurse went to clean her mouth out with the vacuum today Tori reached up all the way to her mouth with right her right hand. It's the furthest we have seen her reach. She still hasn't grabbed to this point but hopefully we will see that real soon. Or again, a punch will work fine as well ;-)

That is about it for the day. It continues to be very hard to be patient because we are all just watching for something new and amazing out of her each day and that can't be expected of Tori. We must continue to hope and pray and eventually the signs will appear. I am quite sure there is alot of healing going on inside of her head right now and it will just take time, time and more time to see the results.

Our nurse told us today that Tori pretty much slept all night on Friday night. This was very good news and Tori was actually awake today about 80% of the time. Getting her sleep cycles back to normal has been a challenge for us so hopefully we are now on the right path. We were also able to get some more 'smiles on command' from her today which was totally encouraging!! Again, we can't wait until that massive tube is removed from her mouth... It is so very hard for us to be patient with Tori's progress because we want her ALL back right now!! Unfortunately, this will of course not happen and we can't expect to see new and exiting things each day. Patience - patience - patience. Hope - hope - hope. Prayer - prayer - prayer. Not necessarily in that exact order either.

We also met with the Trach surgeon today who analyzed Tori for Tuesday's surgery. He stated that Tori's cough is VERY strong and he actually predicted that Tori would eventually gain control of her upper respitory system. So the Trach and perhaps the G Tube would be temporary. Our goal with the Trach and G Tube is again to get her out of the PICU and into rehabilitation immediately. She needs stimulation by all of the Occupational, Physical and Speech Therapists and she just can't get that where she is currently at.

This morning we met with Tori's team of doctors and nurses and we all agreed upon pursuing a Tracheotomy (Trach) and a Gastrostomy Tube (G Tube). We all felt that even if we attempted the extubation again the possibility of Tori having 100% of upper respitory control was slim and not worth the risk. Tori's lungs are now at 100% of normal and the rest of her internal organs are also working great. We do not want to jeopordize that... She is on NO other medication except for the Keppra which is controlling her occasional twitching (myoclonic seizures). It is time for devotion to the next set of challenges regarding Tori's neurological capabilities.

Having the Trach and G Tube will help us move Tori into full rehabilitation mode more quickly and it will also allow us to be much more efficient during that totally unknown amount of time. Both the Trach and G Tube CAN be removed if Tori improves her gag reflex, swallowing and overall control of her body. Her surgery is targeted for next Tuesday and both the Trach and G Tube will be done while she is under anesthesia. Once the operation is complete it will take an addtional 5-6 days for recovery. At that point, if all is well, she will be ready to leave the PCMC.

It seems like it is 3:02am here according to all the time keeping devices I can find. Here is one I especially like if you need to know what time it is everywhere in the world: http://www.weltzeit.de/.

This is quite likely to be a very short entry as I am supposed to be attending a meeting in 4 hours. Didn't get a chance to see my lovely wife tonight. This reminds me how much we do not tell enough the people we love how much we enjoy their company.

I had a chance to chat with Tori's very dear friend Nicole today online and it helped me better understand why she would always want to spend time with her friends and not us. It's quite simple: They are more FUN!

You are all going to make a big splash in New York! Dance for Tori like you did today and you are guaranteed to win.

Tonight Maria and I went to the Dance Club Company Showcase which is esentially a publically accessable dance recital put on by Tori and Whitney's dance club. The dance teams performed 52 dances which will all be done at the NYC Dance Alliance during July 1st through 10th. Whitney will also be going on the trip and we have enlisted many of the 'dancing moms' to watch over her :-) She will be in great hands!!

There was a sign at the auditorium entrance which was titled "Tori Schmanski - our inspiration" and it contained many pictures of Tori which we hadn't seen before. Maria and I liked it very much and the emotional stage for us tonight was immediately set...

Tori's day began to a little bit on the rough side as a new physical therapist arrived and pushed Tori quite a bit in her stretching. While she stretched Tori's hamstrings her face grimmaced with pain and turned very red and the tears followed closely after that. Maria and I could hardly stand to watch it... Tori obviously feels pain and the stretching and manipulating of her arms and legs is very neccessary to keep her muscle tone in place. But I am defintely not near as rough on her when I apply the physical therapy myself... The term "feel the burn" has a whole new meaning to me now.

Tori's breathing tube was removed from her mouth at approximately 11:45am today. This process is called extubation. About 6 doctors and nurses helped and observed her in the process. Tori did well on her breathing and coughing but she was lacking the consistent swallowing and ability to produce a gag. The medical team let her breath on her own for about 15-20 minutes as they watched her throat response. It was finally deemed that her upper respitory control was not far enough along to keep the tube removed. The risk of saliva getting down into her lungs was too great and the doctors really don't want her to get a pneumonia at this point. Her lungs have recovered to full capacity and they don't want to risk them getting 'sick' again.