September 29, 2011

Timmy Update

It's been a trying few weeks, but we are long overdue for an update... so here I go.

For those that didn't hear, we lost the home we rented to a fire at the first of this month.  We are still looking for a place to rent for Timmy, his sister Jessie and me.  Here is a link to the story The Press Banner published if you haven't heard.  They did a pretty accurate job.  http://www.pressbanner.com/view/full_story/15444547/article-Fire-burns-Boulder-Creek-home-?

Many friends and family have asked what happened with the International Brain Research Foundation and since I'm still not sure, I figure it's only fair to share what I know.  It's been about a year since Dr Halper and his team came to evaluate Timmy.  The articles we read were promising and we'd hoped they'd be able to help Timmy. We believed that they were willing to treat Timmy and we had high hopes that they would.  After a brief telephone summary of Timmy's test results, we were told that a man from the financial dept would contact us regarding  the cost. We waited to do any more fundraising at that time, because we wanted to be sure they were going to treat, what the treatment plan would be and the cost.  After many frustrating months of not getting those answers, I bypassed Dr Halper and wrote Dr De Fina, telling him that Timmy was back in the news again and that past supporters may be wondering what became of his team helping us.  Within days, a woman named Brittany contacted me by email and telephone.  We connected and she seemed genuinely concerned and wanted to help.  She promised to talk with Dr De Fina and get back to us the following week.  Well, this was 3 weeks ago and I feel like we've been forgotten once again.  We have invested $10,000 for the evaluation to get started and now I'm wondering if we should write them off as money not so well spent.  I know they've helped many, but I'm not sure why Timmy isn't as important to them.

So, now I'll tell you where Timmy is progress-wise now that he's been home for 10 months.  He's been receiving occupational and physical therapy at Dominican outpatient neuro rehab.  Everyone there is wonderful and with their help, we've seen Timmy progress.  Timmy has more use of his left hand and arm and a couple of months ago, we noticed he could kick his left leg while in a sitting position.  Today at therapy, he was doing pretty awesome lifting his arm with some weight attached and then we found out he could do something new.  He can kick with his RIGHT leg and kicked several times on command.  I love when something like this happens, as it gives us hope that he IS getting better and will continue to accomplish more.  We ended therapy with him "shooting" hoops into a makeshift "basket".  You can tell he has good sensory skills, as he would reach into his lap without looking and find the "ball" pretty much right away without looking.  And then he'd shoot.  Laughing a bunch of course, as usual,

This past Tues, we decided to venture into a new type of treatment for Timmy.  We had a consult with a Cranial Chiropractor.  We've only had a consult so far, but he thinks he can help Timmy with at least a couple of things.  I've always noticed that the left temporal area of his face didn't look right since the accident.  The doctor picked up on that right away and thinks his jaw may be locking and that there is still some compression in that region.  He says he can fix that.  His treatments will also help to improve the blood flow to Timmy's brain and that can't hurt.  And he will also offer nutritional supplements we probably should have been trying all along, like fish oil and specific B vitamins.  It's all worth a try and this man has had some pretty wonderful results treating patients with all different kinds of complaints. 

I'm not sure if I mentioned it before, but we've had a speech pathologist out to evaluate Timmy.  This was just a few days before the fire.  She is going to set up a vendor to try Timmy with a computer that he can "talk" through by pushing a button as it lights up on the word, picture or phrase that he wants to use.  She's ready to come out with the vendor, but we've decided to wait until we get set up in a new home.  It'll just be easier that way.

And last but not least, Linda Lovelace from Valley Churches, has submitted our story to the San Jose Mercury for their holiday wish list.  We just found out that our family was one of those selected and soon, a reporter will be contacting us to write up our story.  So that's exciting and we are looking forward to that.

So thanks to everyone who is still keeping up with Timmy and God bless all of us.

Dawn
Timmy's mom

May 9, 2011

We love having Timmy home

Time to update those that who still follow Timmy and share the few good things that have happened since he came home at the end of January.

His family feels he's adjusted really well to being home. He smiles all the time and laughs just about as much. I wish you could look into his eyes, there is just so much life and softness in them now and he still has those long dark lashes he was born with, so his eyes are beautiful. He's never without his family anymore, his family is here with him always now and that's the way it should be. We don't use "yes" and "no" cards anymore for communication, he's really good at nodding his head yes and no. So, communication has greatly improved. And since he's come home, he's off 2 medications. He is no longer getting daily Lovenox injections to prevent blood clots and takes a baby aspirin each day instead. And he no longer takes blood pressure medicine for his fast heart rate, he doesn't need it anymore. His blood pressure and heart rate stay in a normal range. It's awesome :) And today, he started his first day of neuro physical therapy at Dominican Rehab.

Today was Timmy's first day of physical therapy with Dominican. Timmy was cooperative and smiley and even kept scrunching his nose at his therapist, like he does to others in his family. She measured his muscle tone, went through range of motion with him to see how his body responded and had him do things we hadn't tried yet, like having him try to raise his hips and raise his head while laying on his back. He did well, especially with the head raising. She then sat him at the edge of the table, with his feet on the floor. She showed us how to put a sheet low around his waist, and pull towards the person sitting in front of him, which helped to stretch his lower back. Timmy really liked that. And when it was time to put him back in his wheelchair, instead of transferring him with the lift, she kept him in a seated position and scooted him across a board from the table to his chair. She explained doing it like that helped to send signals to his brain. We are pretty happy with the treatment he received so far and are looking forward to better things to come for Timmy. Weds he will be evaluated by an occupational therapist and we are being told he's really good. So, starting this week, he will be having 3 days of therapy per week, so he'll be getting into a routine. We will also be getting a referral to see a physiatrist. And that will be nice since I consider the one he saw a total of 1 time at Kaiser was crap.

So those that still look for updates on Timmy, thank you for continuing to think about him. I know he's still in people's prayers and I thank you for that. Prayers, Timmy's family and friends believing and Timmy's will to live is what got us this far. I hope that every future update I do, will contain progress made by Timmy. So keep rooting for us, we love you and appreciate it.

Dawn
Timmy's mom.

March 17, 2011

Home at last

I know that it has been a long time since the last update so there is a lot to report. In February, Timmy came home from the facility that he has been staying at for over a year and a half. He is now living back in Boulder Creek at his family home with his mom (Dawn) and sister (Jessie), and is being taken care of by Isaac, his brother, and the rest of the family. In the short time that Timmy has been home he has shown great improvement in his condition. Timmy is gaining more and more control over his left arm and is now able to lift it a matter of inches to give hand shakes or high-fives. He has mastered the remote control, channel surfing during commercials and checking out all the sports channels along the way. We recently brought out the Super Nintendo and Timmy plays Ms. Pac Man and Mario Kart with a huge smile on his face. Timmy is now nodding and shaking his head a lot better, making it a lot easier for his family to learn how to communicate better with him. He has even started to have small movements with his right wrist, which was something that the Doctors said could never be possible. Timmy is also eating more real foods and able to try new things all the time.

Timmy loves to laugh at and spend time with his son Colin, and niece and nephews. He still has the same sense of humor, and laughs at old jokes and stories that he likes. We just got Timmy’s new wheelchair, and we are finally able to start taking him more places and allowing him to have his life back. This last Sunday he was even able to attend church with his mom. Timmy has come so far and still has such a far way to go. We are still working on fundraising efforts to try and get Timmy the treatment that could aid in his recovery. If anyone has any fundraising suggestions or would like to help please contact Caitlin Hatch through facebook at http://www.facebook.com/profile.php?id=1638729351.

December 10, 2010

News from the International Brain Research Foundation

Finally, I got to have a phone conversation with Dr Halper from the International Brain Research Foundation. He works with Dr De Fina and he is the doctor that came out and did the evaluation and testing on Timmy.

He started off by telling me that most of the patients they work with are far less cognitive than Timmy, meaning they are in comas, vegetative states etc..  And then he told me they have new programs and some are fairly experimental.  They are suggesting we try some neutracuticals.  I will be in touch with Jason, in charge of financial, to talk more about our options with that.  And I think he mentioned that there may be other drugs that could help with speech.

I asked about what the tests showed and  Dr Halper said the results were very good.  The brain waves looked good except in a couple of spots.  He said there were some mild abnormalities on his left side and that would make sense, because that is the side where the injury occurred.  I then asked him if the tests were able to show what parts of his brain might be affected and he said that areas that involve speech were affected.

After I post this update, I will be emailing him Timmy's Kaiser doctors contact information.  He is going to try to contact them to talk more to them.

It's just so amazing to me how resilient the brain can be.  In the beginning, we were told that the original CT scans showed that the left side of his brain was dark and could not recover.  We were also told that there was a lot of brain stem damage that was not repairable.  We were told Timmy would never breath on his own... he does.  We were told his right side would be paralyzed, it's not.  We were told he'd be blind in one eye, he's not.  I guess the brain is smarter than we think?  Thank you everyone for believing in Timmy and believing in miracles.  Thank you for the many prayers that still continue and for the good thoughts sent Timmy's way.  And thank you for believing that Timmy will continue to get better.  And even if we don't get the Kaiser doctors assistance, I was telling Isaac that Timmy's come this far on his own and he can go further.  And of course, I believe we have God on our side.  We have the winning team.

Believe :)
Dawn

December 9, 2010

Doctor updates

Update anyone?  Last update, I told everyone that Timmy was to have appointments with two of his Kaiser doctors.  The first doctor being the one in charge of his physical therapy and the second, his neurologist.

We met with the Medical Physical therapy doctor a week or so ago.  The appointment opened with the question "What do you want from this appointment".  That should have been my first clue that I was going to leave disappointed.  Is it too much for a doctor to be able to tell his patient what he can do for him?  Out of the whole hour we spent there, the entire time was spent discussing why his insurance won't cover therapy for him.  About 2 minutes, at the most, was spent on examining Timmy.  I went in wanting Timmy to be referred to Kaiser Vallejo, where their specialty is brain injuries.  I was told Timmy would have to be able to tolerate 3 hrs of therapy a day, which he is nowhere near at this time.  I asked how he was expected to get to that point when he is getting pretty much NO therapy now.... then I got to hear more about insurance crap.  So if Timmy isn't going to be getting  PT or OT at the facility he's at now, he needs to come home where I can teach him the best I can and he can be part of his family again.  We discussed that and the options he came up with are:

1 - Inpatient referral to Kaiser Vallejo for short term rehab (few weeks) with the understanding that it is short-term and to prepare him and his family to bring him home.  But there is a chance they won't take him.

2 - Same scenario, but referral to Santa Clara Valley Medical.  BUT in order to go there, we would have to drop Kaiser insurance, as Kaiser won't pay for SCVM, but Tim's Medi-cal would.  But there is a chance they won't take him either.  And if we dropped Kaiser, Timmy would only have medi-cal when he came home and I'm not sure we'd be able to find him a good doctor or if medi-cal would cover ongoing PT, which I think is so important at this time.

3 - Or, the sub-acute facility can teach me how to take care of Timmy and he could be discharged from there.

As much as I want Timmy home NOW, I would also like more of an opinion from professionals that work with brain injury patients to see him and possibly offer opinions and suggestions.  AND I want assurance of ongoing therapy for him.  (A little side note.. this doctor called me again this morning to see if I'd made any decisions yet regarding bringing Timmy home.  By the end of the conversation, I got him to agree to order OUT patient therapy for Timmy, 1 day a week.  I guess Kaiser will pay for out patient therapy, but not inpatient therapy where he is now.  The only catch is, I have to transport him to Kaiser.  No problem, I can do that and I will.  At least he'll get some therapy while working on getting him home.  I pray that they may try things that haven't been tried yet and answer all the questions I have regarding what I can do to help more.

Today, we met with Timmy's neurologist.  The last time she saw him was over a year ago.  She seemed genuinely happy to see him and wanted to know how he was doing and wanted to see everything he can do now.  At the end of the visit, as I left, I felt like I really didn't get any answers as far as her opinion goes, so I went back to see her again, leaving Timmy in the waiting room.  I told her I needed more of an opinion or summary from her, because there are a lot of people following Timmy's story and that other medical professionals will be asking me and I needed something to tell them.  She said that yes, Timmy has progressed and that he's alert and communicates.  I asked her if she thought there was any kind of testing we might do and she told me that she'd actually thought about that, but that she didn't think a CT scan would show much.  I then spoke from my heart and told her that I know there are medical opinions, and that I'm not saying Timmy has to be 100% (thought I do believe he can be), but that he does deserve to progress further for a better quality of life, even if it's just operating an electric wheelchair, using a remote control or even playing video games.  I added  that even his neurosurgeon, who didn't think Timmy was going to pull through, has been known to say that Timmy is going to be a miracle. She looked at me then and told me that she thought Timmy was a miracle too.  She wants to continue to be a part of Timmy's team.  But it seems that there is not a lot she can do on her end at this time.  The therapy has to go through that other doctor.

So, on top of figuring out which road to take to bring him home, I'm finding out that In Home Support Services might not be as easy as I thought it would be.  The waiting list is 2-3 months for them to come out to his home and evaluate before they approve coverage.  And I have to have a discharge date before I can move forward on that.  I know it's not a guarantee, but I was hoping In Home Support Services would be my primary source of income to stay home and be Timmy's caregiver.   By the time I finished my conversation with the nice lady at that agency this morning, I was telling her that I felt like just going and picking Timmy up in a van and bringing him home and then someone would have to figure out how he was going to be taken care of from there.  So I don't know why things have to be so complicated.  I just want some PT and OT for Timmy and to bring him home.

So a little good news.  JUST as we rolled into the neurologists office to await her visit, the doctors from the International Brain Research Foundation called, ready to consult with Timmy's long awaited test results.  So, I had to tell them I was at the neurologist appointment and they weren't able to call me back today, so now I will be talking with Dr Halper tomorrow at 330 pm.  But he did tell me that the EEG showed that Timmy's brain looks good.  What that means exactly?  Well we will all find out tomorrow.  So tomorrow, a hopefully brighter, promising update.


Thank you everyone for being part of Timmy's life and Timmy's story.  Thanks for the prayers.  Thanks to those few friends that know just what to say to me when I'm having a rough day.  And thanks to whoever told me that Timmy is not going to be a miracle, he already is.

Dawn
Timmy's mom.

November 17, 2010

International Brain Research Foundation Consult

Well, I guess a Timmy update is a little bit overdue.  But, before I get into that, I just want to say I loved visiting with Timmy tonight.  He's seemed kind of down the last couple of days, so it was great to be greeted with a smile tonight.  And then for some reason, he just kind of launched into doing all the stuff I've been teaching him, without me asking him to do it.  He started nodding his head yes and no.  Then he started opening his mouth and sticking his tongue out...  all this with no prompting from me.  We were both laughing so hard that I had to tell him to remember to breath, because he almost couldn't catch his breath.  Also, over the last week, he's been starting to bend his left leg at the knee on his own while we do range of motion.  We are also starting to see a bit more movement in trying to open and close his right hand.  Timmy's room mate's sister actually got him to reach for a ball today, which I've never seen him do before (lift his arm).  So Timmy's still making progress and I thank God and everyone's prayers for that.
So, onto the update:
Last Thurs, the 11th of Nov., Timmy was evaluated by a 2 person team sent by the International Brain Research Foundation.  They were great and treated Timmy like the human being we know he is.  The first test they ran measured his level of consciousness.  Timmy's level is at 98%.  What's this mean?  A normal level is 100%, so this means that Timmy is totally aware of everything going on around him.  Yes, most of us already knew this, but now this is proof.  They asked Timmy to do some things, which he was very cooperative with, within his ability to do them.  They also ran a couple of EEG's which we will get the results from within 10 days of the date of testing.  Dr Halper was awesome and encouraging.  He told us that he can't believe Timmy isn't getting any type of therapy at this time and that he is ripe for therapy.  And, how frustrating it must be for him to be aware and want to do things, but needs help getting there.  He encouraged us to get Timmy physical and speech therapy and that's what I'm working hardest at now.
So to start, I spoke with Timmy's Kaiser doctor that's assigned to him at the facility he's residing at now.  She knows that Timmy is currently on an "RNA" program, which needs no insurance authorization.  This means that IF the family is there to assist, we are SUPPOSED to be able to stand Timmy with the help of an RNA for about 15 minutes.  This hasn't really been happening and I told her.  I also told her that we'd like Timmy re-evaluated for Kaiser Vallejo.  We have been told in the past that the Vallejo facility is Kaiser's big rehab for brain injuries.  His doctor then told me that in order to go there, Timmy would have to be able to tolerate 3 hrs of PT a day.  I then asked his doctor how he was expected to get to that level when nothing is being done to help reach that point, especially when he's just laying around wasting away.  I also added that he hadn't had a neurological evaluation in over a year.  And I asked her for a wheelchair evaluation, as the one he's using now is borrowed from the facility and... well it's a piece of crap.  So, to make a long story short, Timmy has an appointment next Monday with a Kaiser doctor that's supposedly in charge of his physical therapy plan, who he's never seen before.  Then the first week in Dec., he has an appointment with his neurologist.  Still waiting to hear about the wheelchair eval... but I did tell her that I know people on Medi-cal that have wheelchairs and that I'd think a patient on Kaiser should be able to have one too.

So I learned a lot this week.  Monday was really tough emotionally for me for lots of reasons I won't get into, but part of it was because I wanted things to happen MY way NOW.  I wanted Timmy home before Christmas and I just want him with me all the time, because I felt nobody else was taking care of him and at least I could continue to encourage him and teach him.  For now, we've decided to give Kaiser a chance to increase Physical and Speech therapy.  We should also have the EEG and other test results back soon that will give us a better idea of where Timmy's brain is at, as well as suggestion for treatment from specialists from the IBRF (International Brain Research Foundation). 

In God's time. He's brought Timmy this far and I trust He will bring him even further.

Take care everyone. 

Dawn
(Timmy's mom)

November 9, 2010

De Fina's team is coming!

Yesterday afternoon my phone rang, but I didn't recognize the number, so i didn't answer. 5 seconds later the house phone rang with the same number and I got this feeling that the area code was New Jersey.  I jumped up and grabbed the phone and it was Dr. De Fina's assistant!  She called to let me know that the team will be here Thursday to evaluate Timmy.  We are getting everything ready, and we are so excited. This is what we have been waiting for.
I don't have all the details on exactly what they will be doing Thursday, but I do know that they will be bringing their equipment to map Timmy's brain out on the computer.  They will be looking at what is damaged, and how damaged it is.  We are excited because we haven't seen any scan since the accident, so it will be cool to be able to see FINALLY what is going on in that head of his! 
I will update everyone on Thursday after we talk to the team and they let us know whats up. Let's hope for the best!

October 14, 2010

Timmy wrote his name!

Sorry it has been a while since the last update.  The pancake breakfast was on Sunday.  It went well, and we had a lot of fun!
A couple days ago Caitlin went to visit Timmy and she had a whiteboard that she brought and she asked him to write his name.  She put a pen in his hand and he did a line down, then she moved the white board and he did a line across so it formed a 'T'! He did this until he wrote Tim.  He got so excited!!!
Tonight when my mom and I was with him we put a pen in his hand and he wrote Tim, then I was joking and asked him to write a funny word, and he started to, he wrote a 'B' and was so excited, he had a huge smile on his face! He was so proud, he answered 'no' when asked if he knew he could do that, and he was so happy that he did it!  We are going to buy him a whiteboard and work on this a lot more with him.
This was our first time seeing him since the Giants beat the Braves to go on in the Playoffs, and right when we said "hey Tim, did the Giants win?" He got a huge smile on his face.  He was so happy today! He was laughing, and joking around a lot.  I love when he is happy.
He likes to do staring contests, and when you say "okay Timmy, 1, 2, 3!" he will close his eyes until you get to 3 then just stare at you and get a smile on his face.  Today when I was playing with him I opened my mouth and went "aahhh" and he opened his mouth big like he was trying to copy me. He is doing so much more than the doctors thought he would.  I love how far he has come.

October 3, 2010

Fundraiser #1- Car Wash

Today was the kick off to our Month of Fundraising.  We had a car wash at King's Paint in Capitola; it was a success!  The day started out foggy and cold, but it turned out it was actually better to wash the cars in that weather since the soap didn't dry right away.  It got warmer throughout the day, and we had a lot of people who wanted to help us by donating :)  It was a lot of fun, and it was a really good feeling knowing that we were spreading the word about Timmy to people who hadn't heard about what happened to him yet.

We are thinking about maybe making it a monthly thing since we had so much fun doing it.

Now for a little update on Timmy.  While we were out washing cars to raise money for him, he was at his facility with our Mom watching the 49ers and Giants games.  When my mom would tell him the Giants were going to win today so that they would be the champs, he would look at the 'no' card.  After they won my mom grabbed his arm and was like "Timmy, Timmy they won!!" she says that he started laughing a lot at that point, and smiling.  After that, he thought everything was funny!  When my mom told him she was going to go home and wash his pillow, he started cracking up, laughing harder than she has heard him in a long time.  We think that he kept saying they wouldn't win because he didn't want to jinx them ;)

September 24, 2010

Fundraisers

It's almost October!  Our month of fundraising is just around the corner.  Things are coming along, and we have been working hard at getting these together so we can raise the money for Dr. De Fina to treat Timmy.

The first weekend of October is our first fundraiser.  It will be a car wash at King's paint located at 2851 41st Ave.  We will be there from 10 AM - 3 PM

On October 10th we will be having a Pancake Breakfast at the Boulder Creek Firehouse from 8 AM- 12 PM

October 27th we will be having a Benefit Concert at the Calvary Church in Los Gatos.  Doors open at 6:00, show starts at 6:30.  Tickets are available now here: http://www.hope-culture.com/ if you click on 'tour' you can purchase via Pay Pal.  I suggest purchasing them ahead of time since they are cheaper :)  For more information on the concert you can go here.

Today Timmy did something pretty cool!  I am putting in a video to show you.  He is just learning to do this again and thought it was really funny!

video