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Monday through Sunday, April 23rd through 29th

Submitted by Tim Schmanski on Sun, 2007-04-29 22:20.

Greetings,

Tori continues to do well and she had a good week and weekend. She is rarely agitated and it is much easier to calm her on those occasions when agitation does set in. It was very nice out this weekend and she spent plenty of time outside with Guy, Brendan and I. Maria and Whitney were off to Dallas for another dance competition but will return late tonight. We are also very excited because Grandpa and Grandma Schmanski also arrived today and will be spending some time with us at home again.

I'm happy to report that Tori can now entirely finish off a yogurt or applesauce!! She had more cheese, french fries and some steak this weekend as well. So her eating and swallowing progress continues and we will keep working on it so she gets stronger and stronger. I'm finding that she does better with larger bites but I'm still hesitant in giving them to her... Meredyth also continues to work on Tori's mouth control as well. Tori can close her lips around a spoon and can do it on a straw as well. But still no straw sucking action yet.

Maria and I took Tori to the Shriner's Hospital for a checkup and surgery scheduling and afterward to the PCMC for a baclofen pump refill. Tori will have tendon release surgery on both feet sometime in early June. They will be sending us a final schedule this week and Tori will need to wear casts on both feet for 6 to 8 weeks afterward. She will also have new hand splits made while she is there as well. The surgery will require a one or two night stay at Shriner's. It is important for Tori to have her feet corrected so we can begin to place her in a stander once again. I've now placed stander shopping back on my list of many, many things to do.

Thank you all once more,

The Schmanski's

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Stander

Submitted by jpesicka1 on Wed, 2007-05-02 06:01.

Hi tim I just wanted to let you know what stander we use for Justine always have. She is actually on the website still from a photo shoot she did when she was 2 for the company in her wheelchair. It is under the seating systems. The stander is a mulholland peer level stander. The owners of the company are great people. She is a physical therapist and he was an engineer. Justine also has the walk- about. Before she got the guillian barre she went all over the yard with it. She could not steer it but they have wheel locks that keep the wheels in whatever position, straight if you what to go down the sidewalk or in a circle on the patio. Check them out. http://www.mulhollandinc.com/PeerLevel.asp
jodi - justine's mom

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tendon releases, and baclofen pump

Submitted by Lora Bascom on Mon, 2007-04-30 17:17.

Hi Tim,
My 28 year old husband got a very severe brain infection one year ago. His brain was under attack for about 4 months, and he has been recovering for 8 months now. He has (or had) a severe case of what is called Acute Disseminated Encephalomyelitis (ADEM). Basically he got a viral infection in the brain, then his own immune system went crazy trying to attack the virus and started to attack the myelin in the white matter of his brain. He has had to pretty much learn how to do everything again. He was actually parapalegic and paralyzed in his left arm. However, he does have movement in his legs and feet now, and has improved much after having tendon releases. His feet were so incredibly messed up. Tendon releases were the best thing we ever did for his feet! His feet look normal and move normal again, and now after a lot of work he is able to walk very slowly with a cane. Now we are faced with what to do about his spasticity. Baclofen pump is our PMR docs reccomendation. We are also considering stem cell therapy. Has the baclofen pump helped with Tori's upper body spasticity? Grant's spasticity in his left arm is our biggest concern, even though he does also have it mildly in his left leg. We are just trying to get all the info we can to make the right decision for him. My heart goes out to you, Tori, and your family! Helping and watching a loved one recover from a brain trauma is not an easy thing. But we all must hang in there and not give up. Reading your blog and other people's recovery blogs gives me strength to go on and keep fighting and helping my husband win this battle. If you could briefly answer my question about Tori's baclofen pump I would appreciate it. Either email me at bascom16@hotmail.com or just comment back to me. Tori is in our prayers.

Lora

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Re: tendon releases, and baclofen pump

Submitted by Tim Schmanski on Sun, 2007-05-06 20:24.

Hello Lora,

Thank you for posting on Tori's site and for the support as well. There are many, many recovery blogs that help me immensely as well. Understanding, learning and sharing in our loved ones obstacles and challenges as well as their successes as well is very important. I would still recommend the baclofen pump though Tori has had some struggles with it. We can't imagine how tight she would be without it and we'll see what the results are after her surgery next week to check out the line and catheter placement. Perhaps they will find issues that might explain why Tori is still so tight given the amount of baclofen she is receiving. We shall see.

Jon also mentioned you might want to hold off if you are considering any stem cell treatments. It always seems none of our choices are easy ones as there are always positives and negatives to consider.

Thanks again,
-Tim

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Baclofen Pump

Submitted by Jon on Fri, 2007-05-04 21:24.

Dear Lora,

I work with the group that treated Tori out in China. I think if you are going to get stem cells, you should wait on the baclofen pump as there have been studies that high doses of baclofen can kill the stem cells. For spinal cord injury patients, the stem cells often help to reduce muscle spasms but I think Tim is the one who can tell you if he think it did anything for Tori's spasticity. It does usualy help young patients with it but it is not guaranteed.

Just some thoughts from observing patients getting treated and reading. I am not a medical doctor.

Thank you.

- Jon

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Standers

Submitted by Brittany Atkin on Mon, 2007-04-30 12:33.

Hey Tim! I saw a week ago on Sunday an Extreme Makeover Home Edition of a soldier who was wounded overseas. He had to be in a wheelchair and could no longer stand. Well, they set him up with a wheelchair that stands you up. It was really cool! I thought about Tori when I saw that and then it reminded me of that episode when I read this blog. Maybe that is something you can look into as well. I just googled this for you , but here is a link so you can learn more: http://www.planetmobility.com/store/wheelchairs/power/vertran/index.html

Seriously, I hope this helps. I would love to see more pictures of Tori standing! Let me know what you think.

Brittany

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