Monday through Sunday, April 2nd through the 8th

Hello again everyone and Happy Easter!!

It's been a week since my last update so prepare yourselves for alot of positive reading on Tori!! :-) Tori's Botox fully set in last week and that combined with her recent Artane medication increase for muscle tone has made her a completely different girl!! A far, far less agitated and mostly calm and pleasant girl that is which is of course wonderful for all of us to experience again. She still has a little agitation each morning after her typical great night of sleeping but she is now calming quickly and it does not last all day as before. Besides that her vomiting has almost completely stopped once more!! Her whole upper body and arms are visibly more comfortable and she is once again moving them freely and placing them basically where ever you ask her to. You can also stretch her arms and hands once more as the tightness is greatly reduced. It is really, really nice to this once again and Tori even tried to reach into her Easter Basket this morning.

Since her arm and hand control is back to what it once was Tori is also able to participate much more in her ST, PT and Megan visits. Meredyth came over twice this week and Tori did very well answering questions with precise selections using her right hand on the Yes/No switch. Again, it's basically a large switch with two 4"X6" buttons labelled "Yes" and "No" and when either is pressed a voice pronouncing "Yes" or "No" is heard. Meredyth was holding up cards with the name of a month on it and would try and trick Tori. She would hold up the "May" card and would ask Tori if it snowed in May to which Tori would press the "No" button. Tori informed Meredyth that Santa Claus doesn't visit in "July" and that the trees do loose their leaves in "October". She also worked on some simple pictures with Tori and had her trying to make sounds once again. She is getting better but it is very slow moving progress... Megan had long question cards which she would read to Tori with incorrect and correct words inserted within the sentence. Tori would have to choose the proper pronunciation when the correct word was inserted. Tori did reasonably well with this challenging exercise and Megan will be bringing more fun and games next week.

Royal stopped by for two PT sessions and of course found it much, much easier to perform the various stretches on Tori. We continue to stretch her hard which helps the Botox do it's magic :-) Maria and I also took Tori to the PCMC in SLC on Thursday for her appointment with the Orthopedic surgeon. She confirmed that certainly needs tendon release surgery on her left ankle and recommended us doing the same to right ankle as well. We're not too sure about that at this point because she does have fairly good range with it now and could handle the stander with it. The earliest Tori could have the surgery at the PCMC is June so we are going to see if the Shriner's Hospital can do it sooner. We have an appointment there in late April and one of the additional benefits they can provide is that Tori can get her foot braces and even hand braces during her day long stay. We will probably take the Shriner's option regardless of the surgery schedule they can arrange.

I mentioned we raised Tori's daily liquid Jevity 1.2 by one extra can per day and Tori has handled the increase just fine. We have to start her night feeding a couple of hours earlier than normal to accomplish this and that is not too troublesome. Since her vomiting has resided we are now feeding her through her mouth once again and Tori is excelling!! Hagen Daz ice cream is a great way to fatten her up especially when she can handle a third of quart ;-) Fruit smoothies with alot of whipped cream is another favorite of hers and she had a pretty large sampling of mashed potatoes this weekend as well. She of course loves chocolate and we are trying some new, rich and fully unprocessed dark chocolate with her that I will report more on later. I believe we are starting to see some of the mouth control and swallowing improvements we have been expecting. She really focuses well on her chewing and swallowing and I saw ZERO coughs this week. She also let's you know when she is done because she locks her jaw shut and won't open it for any more bites. Even if I try to pry the spoon between her lips she will refuse to open her mouth for it. That's our stubborn Tori we all know and love!! :-)

Speaking of improvements, Saturday marked the two month milestone since Tori's last SCT in China. So please hope and pray that the next 4 to 5 months may bring wonderful improvements in Tori that can provide an impact in her quality of life. I mentioned Vicki and Brooke returned from China in my last update and are greatly encouraged by some of the improvements they have witnessed since arriving home!! Koo continues to give updates on Chris and their trip and Bonnie does so as well on Lauren's site so please offer your prayers and support to them all as well.

I've mentioned before that Tori is a HUGE fan of the "Planet of the Apes" movies and this weekend they ran on the History Channel so she was all set :-) Even when she was very little girl there was something about those movies that enthralled her and they still do. Prior to putting her in bed tonight I ran through my usual arm exercising routine with Tori. While she is still in her wheelchair I have her do various motions and movements with her arms. Placing them out in front of her, out to the sides, over her head, across her chest, left arm out, right arm up and so on. She does them all now that she has her movement back and she rewarded me with a special move tonight. I leaned in towards her until we were face to face and asked her to put her arms around my shoulders and give me a hug. Needless to say it was the BIGGEST and BEST hug I have had in long, long time and Tori didn't mind at all as I rested my head on her shoulder and just sat there and enjoyed it for a while. Thank you Tori and I love you more than you could ever imagine.

Good night,

-Tim