Thursday through Monday, March 8th through 13th
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!! ;-)
Guy arrived form Boston to spend some time with us and Whitney and Brendan are especially excited about his visit. Guy and I will be working closely together in SLC later this week and all next week for Novell's annual BrainShare Conference. My employer, WingateWeb, is providing services for the event and Guy will be presenting among many other things during the week.
I will certainly keep up on the updates better now that I'm home and once again thank you for the love, prayers and support!!
-Tim
I love to read about tori
Hello my name is jennifer thaxton. I have been reading about tori for about 2 months. The reason Ive been following the site and toris progress so closely,is because i have a 10 yearold in a simular position His name is aaron and on august 2nd 2006 he had a seziure in the pool and almost drown. When he was pulled out he was lifeless no pulse to resperations and his lips were blue. He was rescutated and the doctors gave a very poor prognosis. They said he wouldnt live then they said he would be in coma ,when he woke up they said he couldnt feel,hear,see or breathe on his own.So we chose to put in the trach and g-tube.About 5 days after we put in the trach he weaned his self off the vent. This was in september of 06 now approaching april he still has it we have to suction around 70-100 times a day give or take ,and he requires some oxygen .Insurance was covering some therapy but they soon pulled away. Aaron does not track and will not do anything on command. We hope and pray for the progress tori is making. even though the doctors dont think something as little as a stretch is volentary. Us as parents of these kids will take anything as progress.Everyone keeps telling us 7 months out is still real early It feels like eternity.Im very happy to hear about tori trying to eat, making noises,and using switch board,I pray she continues to progress and If you dont mind We would appriciate some info about her progress before now. When did she get her trach out?(I think i read she had one in the beginning).Was she on oxygen,how did you get her on botox,What calms her thalamic storms? We only have aaron on Propranolol,and Klonapin 3x's daily. As you know there are many unanwsered questions and Im thankful you have this site. SO please if you have time I would love to talk to you. Many prayers, Jennifer Thaxton
Still so early!
As you might have read we have been going through this now for almost 17 years. It is still so early. Justine did not have a trach in the beginning but had one put in about 2 years ago. It has helped so much with the suctioning and keeping the pneumonias away. She also has gained 30 lbs. since we had the trach placed. It was like she was running a marathon 24 hours a day just breathing. Justine did not smile for about 6 1/2 mos. after her near drowning. She never stops smiling and laughing now. I always say i wish all our kids could be as happy as her. She also had seizures. They lasted for about 18 mos. I have heard from many that thier kids seizures went away around then. We feel justine is aware of everything she uses flash cards with a smile or a look to tell us what she wants. It took a lot of time and patience because in the beginning sometimes it could take a while for her to get control of her eyes and head to look. It is all about repetition. We took lots of pics of things and people. I was talking to justine's physiatrist on thursday who just came back from china and she won't comment on this treatment as of yet so we will just have to live on tori and lauren's experience. But don't give up on therapy if you find a good therapist that can do wonders. Especially in the beginning when the brain is still healing. Justine uses a walkabout, a prone stander, creeper, a large ball that promotes trunk strength and head control. We have an incline and she rolls down it using gravity and lots of hands in the beginning. Justine has learned to use her high tone to do lots of things like propel her walkabout and creeper. When she had the baclofen pump placed she was not able to do anything because we took away the tone. We used lots of lollipops to get her sucking and her tonic bite to relax. If you have any questions you can e-mail me. Sorry about using Tori's website . JPesicka1@aol.com jodi - Justine's mom
Re: Still so early!
Thank you for your support and comments Jodi and please don't feel sorry for posting to the site. Afterall, that is why it is here so we can all share and learn from each other. I cannot imagine nor comprehend 17 years of providing the type of care and attention Tori demands... Your faith, patience, strength and love for Justine must be amazing. I'm sure you have had many challenges during that span but have also encountered great progress as well. Do you have a website for Justine? I would certainly like to hear more and share experiences with you. I will email you privately sometime as well.
Thanks again,
-Tim
Re: Still so early!
Sorry I do not have a website for Justine. Yes she is our angel and could not imagine life without her her. Believe me over the years when she was so sick in the hospital with pneumonia , we have had doctors tell us to just let her go and family members too. That our lives would be so better off, but she is a god send. That smile and the love she exudes is all it takes to keep going. Besides she has unbelievable will. We almost lost her in January. She woke up with a 108' fever. Got her somewhat cooled and rushed her to the er and her kidney's were failing, heart was not working right, they never found out what was wrong. They are saying it was probably a virus but not one they could test for and they said if it was anyone else they would not have survived but she was only in the hospital 4 days. She was home and happy as could be. Every test showed everything was normalized. The doctors never say anymore we don't think she is going to pull through this anymore they just shake their heads in amazement. So I guess the point is never give up because these kids are fighters. They would not be here if they weren't and as long as you continue to fight they will too. jodi - justine's mom
Website for Justine!
I took your advice Tim and I started a website for Justine. It is still a work in progress.
http://www.caringbridge.org/visit/justinepesicka
jodi - justine's mom
Praying for you all!
Thanks for all the info. I am new to the sight. I too am a parent of a near drowner. She was born on june 19th. Quite the coincidence. She was 13 1/2 mos. at the time of her accident . She is 17 1/2 years old now. So we have been doing this along time. Been through all the therapies. We have not seen much results. We had the baclofen pump placed in Jan. 04 but had to have it removed in april 04 because it wore through her skin. So we are back to botox. She does track and smiles which as you know that smile that lights up the room makes everything worth it. So I am excited to see the results from China. I heard about this in the paper because we have a local girl Lauren who is going. So when I was exploring her site I found you. I will be following closely. jodi - justine's mom
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