Happy New Year!

Wow!  It’s been busy lately!

We had a wonderful holiday.  So many things to update on.

First off, I want to say thank you to all our family and friends!  We continue to be blessed.  We had visits over the holidays from: Kyla and Jack from ATL. Stephanie, Michael and Madeleine from Lake Charles along with Allison. Owen and Johnny. Shawn, Natalie & Davis from BTR.  Kelly, Rob, Bobby & Mitchell from ATL.  Maryam (THANK YOU for decorating our tree!), Tania, Carrie Lee and Henry, Ja-Ne and Gary.  We got to continue our annual tradition of a night at Christmas in the Oaks. We had a big group of 17 and ended the night at Morning Call.  It was so fun.  I’m probably forgetting some and I apologize.  Since we moved from Grannie’s it’s been very hectic.

New Years was awesome.  We had a full house of family and shot fireworks.  I think everyone had fun.  However, we didn’t get to make it to the westbank like usual for the Davis celebration.  Missed all of them this year.

I have to mention also that a local family adopted us this year for Christmas.  Jack and Angela are one of a group of families that help others in need every year.  Their group provided us with our Christmas tree, Christmas dinner and gifts for the girls.  I can’t begin to express my gratitude to them.  I am humbled beyond words.  Lisa and I hope that one day we can do the same for someone else.

We also have been adopted by many of our new OLL friends.  Maria, Lisa, Wanda, Kelly, Stephanie and the rest of the crew have been wonderful.  Lisa and I are so blessed to have them all take care of us.  Thank you for the Basket!

Lisa got her new wheelchair!  Medicare and the wheelchair company came through!  Lisa got it a few days after Christmas.  It is very nice!  Has a power seat with a good air cushion, tilt and lift.  Since we got it before the New Year, our out-of-pocket was $1100 (much better than the $5400 if it hadn’t come before the 1st).  Your continued donations helped us pay for that!  Thank you.  I also ordered Lisa a tub lift chair.  We should receive it this week.  Our rental house has a Jacuzzi tub that Lisa loves.  Massages her feet, legs and back.  Her feet have swollen in recent weeks due to her mobility issues and the tub really revitalizes her.  Problem is that the tub is very deep, so it’s been difficult getting her in and out.  The lift chair should help immensely.

Also, Shawn and Justin came over from Baton Rouge yesterday and built us a great, stable large wheelchair ramp at the front door.  Much better than the one I had built for Grannie’s house.  I will put pictures up on Lisa’s facebook page.  It’s awesome and SAFE!

The benefit at the Howling Wolf is getting close!  We can still use some more auction items.  If any of you can help with anything, please call us.  We will need some volunteer help also the day of the event.

I started a new website to sell tickets for the event.  It’s http://www.loveforlisa23.com.  Please spread the word.  Tickets are $35 each.  Due to the fact that the event is at a bar, only adults 21 and over are allowed.  However, I will double check to see if 18-20 is OK.  I’ll update on that soon.

We are also going to print tickets out to sell.  If anyone wants a bundle of tickets to sell to your family & friends, let me know.

The goal is to raise money to help buy a wheelchair van.  Need approximately $25k for a good used one with under 75k miles.  Having a van that Lisa can ride directly into, and be strapped down safely, would be a HUGE help.  For now, I can transfer Lisa, but it’s very difficult for other family and friends due to Lisa’s muscle atrophy.  I can transport the new chair (390 lbs.) on the back of my truck, but I have to physically lift Lisa completely off the ground to get her in the passenger seat.  Not possible for her friends or a caregiver.  Our minivan (175,000 miles) is not set up to transport a wheelchair and too old to warrant a costly conversion.  I tried a hitch carrier, but all loaded, the weight is too much and it drags the ground.  For now, Lisa can be transferred carefully to the passenger seat, and we use a traditional manual chair that folds up for transport.  This works, but takes away a lot of freedom for Lisa, and anyone else with her.

Again, thank you to all our friends and family!  Your support is incredible and humbling.  It is allowing us to maintain as “normal” a life as possible.  Hopefully, we will be approved for the Medicaid caregiver program soon.  We’ve sent in paperwork 3 times.  The move has been stressful for me and having so many of you come and help unpack and organize has helped relieve some of my stress and anxiety.  As you all know, less stress on me means less stress on Lisa, the LOVE of my life.  The financial support we continue to receive is amazing.  I cannot express to each of you how grateful I am.  It bothers me that I can’t, but I don’t think it’s possible to tell each one of you how much it has helped.  I wish no one ever had to deal with a situation like we’re in.  I know many do, and I know many have nowhere near the support we have.  I will never be able to repay you all for your generosity.  I wish I could.  I wish we didn’t need your help.  But we do…and I’m just going to have to get over it and make sure that for the rest of my life, I help as many people as I can, in ways I am able to.  This also means making sure my children know how important it is to help others.  Thank you.  I can’t say it enough.

Alan

teamlisa23.com

Thanksgiving

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Lisa and Rob (LPK Uptown owner)

Hope everyone had a good Thanksgiving week.  We’ve been very busy for the last two weeks.

The fundraiser at Louisiana Pizza Kitchen was great!  It was wonderful to see so many friends and family.  We were surprised and so happy to see such a great turnout.  Thanks to everyone who participated.  We didn’t get to see or talk to everyone as much as we would have liked, but hope that everyone had a good time.  I know they loved the food.  The food and staff was incredible.  Between private donations and the proceeds from the LPK, we brought in over $1800.  This money was greatly needed and will be used for Lisa’s ongoing medical supplies costs.  Specifically, any coinsurance due for her new power wheelchair.  Any leftover will go towards monthly Trilogy bi-pap co-payments, portable wheelchair ramps, and/or a shower transfer chair.

We spent most of Thanksgiving week in Baton Rouge with Shawn, Natalie and Davis Romero.  Kelly, Rob, Mitchell and Bobby came down from ATL.  Owen and Johnny were able to make it to BR for Thanksgiving day.  It was great for all the Romero siblings to get together.  The cousins had a blast.  We were back in Slidell on Saturday to visit with my brother, Odell, his wife Kathrin and their 5-month old Elena, who were down from Louisville, KY.

Now, back to school for a few weeks before another break.

Speaking of, some wonderful new friends, families we’ve met from the girls’ school, Our Lady of Lourdes, have come together and are using a web-site to help out in a great way.  They are using http://www.foodtidings.com to sign up to bring us food.  This helps us so much.  There is a calendar on the site and people can sign up for a day to either bring a dish, or even send pizza.  Anyone interested can sign up.  Sign up for free and search for ‘The LaFaver Family’.  These new friends are so kind and generous and we feel so blessed to be surrounded by such wonderful families.  Special thanks to Kelly P who got it all started.

The Feb. 9th English Turn fundraiser organizing is coming along.  We are still looking for a few more food donors and silent auction items. If anyone would like to help us by donating items or food, please contact us at teamlisa23@gmail.com.  We have John Besh’s American Sector as one of our food donors, Tony Mandina’s as well.  We also have some great works of art from some very talented local artists and Saints memorabilia that will be up for silent auction.  We are also going to start selling tickets soon.  We will update more ASAP.

We are hopefully close to getting a caretaker for Lisa.  We are waiting on final approval from the state/Medicaid.  If all approved, Lisa qualifies for up to 53 hours of care per week.  This should allow me to get back to work at some level.

Please continue to spread Lisa’s story among your friends and family.  I can’t describe in words how much your support helps Lisa in her daily fight.

Thank you.

-Al

teamlisa23@gmail.com

http://www.teamlisa23.com

Flyer – first draft

Finished Lisa’s application to Medicaid after 2 days of collecting as many documents as I could find.  I filled out less paperwork to buy my old house!  Hope we get approved for the Care Giver program.  Anyway, immediately started on this flyer.  Guess it’s OK, I wish I had more time, but I know we need to get these out ASAP.  Now just have to finalize it and get some printed.  If anyone can help me get them out/posted, once I have it finalized and printed, would be a great help.

Thanks to everyone who’s been sharing and promoting the event at LPK Uptown on the 19th.  Keep it up and hope to see ya’ll there!

Click here to see the PDF file —  Lisa Flyer

 

Update Nov. 5th

A lot has been going on lately!  

**We have a new fundraiser to announce!  Please promote it as much as possible!**

Rob G., owner of Louisiana Pizza Kitchen Uptown, on Carrollton Ave. in Riverbend, is doing a benefit night.  On TUESDAY NOV. 19th, Rob is going to donate a large percentage of his sales to Team Lisa 23!!!  He is a wonderful friend.  Please come out that night to support him and us!!!

In other news, Lisa and I went to ALS clinic at LSU today.  We met with the usual doctors and medical staff, physical therapist, respiratory therapist, social worker.  Also got to get the ball rolling on a new power wheelchair!  Lisa got fitted and we discussed what items/options we can possibly get.  Pretty soon, it will all be in the hands of Medicare and our other insurance to see what they will approve and pay for.  After that, we wait, maybe 3 months to get it.  It will be really nice for Lisa, no matter what they approve.  Of course, we’re trying to get some features that would be very beneficial to her and us.  Problem is Medicare sees most of those as medically unnecessary.  Will update ya’ll on that later.

I haven’t updated on this yet, but we have met a wonderful ALS “Angel”, Denise G.  Mrs. Denise has loaned us a powerchair that we can use until Lisa gets her new one.  It’s wonderful for Lisa to have some of her freedom back.  I built a ramp for the house and she has used it to go and get the girls from school by herself.  We also went to the Audubon Zoo last Saturday with Shawn, Natalie, Davis and Owen.  The chair worked great and everyone had a great time.  Lisa got to drive herself around.  Broke free from my control and the manual chair!  Denise provided funds for a steel wheelchair carrier that mounts to the receiver hitch of my truck.

We’re also getting real close to confirming the date for a fundraiser in the Spring of next year.  We were trying for Feb. 9th, but may now be looking at March 30.  Will update on that ASAP.

In the meantime, we are focusing on some smaller, easier to run fundraisers.  We hope to do some other benefit nights at local restaurants, maybe on the west bank.  Aidi Kansas is continuing with her “Senses” art project.  Proceeds from that go to Team Lisa 23.  Other ideas we’ve had or been advised of are raffles, adventure races, softball tournaments and golf tournaments.  Please feel free to jump on any idea that you may have.  We spoke to a few friends at the ALS support meeting on Monday night.  A few told us how they’ve been successful in the past.  Most said that their fundraisers were mostly done by friends and family “committees”, and that their required input was minimal.  One couple had a benefit last Saturday night.  Another family had a golf tournament a few weeks ago.  Both fundraisers raised over $30,000 each!!!

I’ve been wanting to lay out what donations have been used for and where proceeds from these fundraisers will be spent.

1) Living expenses.  Since I resigned my from my job in Atlanta in June 2013, I’ve been on unemployment.  Many of you know that I am Lisa’s only constant care giver.  At this point, I cannot work.  My day is spent caring for Lisa with feeding, dressing, clothing and hygiene.  Also, taking her to appointments with chiropractors, massage therapy.  Too much time lately has been spent on dealing with medicare/medicaid.  For someone without the use of their legs and arms, this is a FULL TIME job.  Here’s an experiment.  Try to count how many times a day you scratch yourself.  Now tomorrow, try to go the whole day without scratching a single time.  That’s one small detail of what Lisa goes through.

The rest of my time is spent taking care of our girls and doing all the things Lisa can’t do, laundry, feeding, grocery shopping and countless other daily chores.  We are hopefully in the last stages of getting a Medicaid appointed caregiver.  In the next 2 months, we hope to have someone who can come in to the house and care for Lisa so I can possibly work.  Maybe part-time at first, but hopefully full-time eventually.

2) We are starting to look for a small house to rent in the south Slidell area.  If this can be achieved, it will accomplish a lot of good things.  We would have some room to “breathe”.  Grannie has given up a large amount of her house here, but for a family of four, we take up a lot of space.  We also want to get rid of our 2 storage rooms.  When we left our home in Atlanta, we got rid of 70% of our belongings.  However, we still have things we kept with hopes of having our own place eventually.  A big benefit of having our own place would be having room for visitors, and a room for people to stay overnight.

3) A big goal is to get a used handicapped/wheelchair van.  This would make everyday life for Lisa so much easier.  Transferring her back and forth from our current minvan to wheelchair, every time we stop is very physically draining on her.  We are now realizing that having the ability to remain in her new powerchair, roll right in and then back out, every time we stop, is a huge deal.  We hope that these fundraisers can raise a significant part of the cost of one of these vans.

4)  Add-ons for the powerchair.  We found out today that Medicare does not cover the entire cost of the powerchair.  Also 2 features that we thought we could get on it are not paid for by Medicare or insurance.  One is the feature for the seat to rise.  This would allow Lisa to raise herself before standing to make a transition to bed, bathroom, other chair, etc…that would make it much easier for her and a caretaker to lift her from the seated position.  Another item which I really hoped to get was whats called an “attendant control”  This is a second control “joy” stick that mounts on the back of the chair, behind Lisa’s head.  It would allow someone to drive the chair while walking behind Lisa.  This is important in situations where we would be loading, going through a crowd, up or down a ramp, etc….As you know, Lisa’s hands are very atrophied.  There may be times when she needs me or a caretaker to control the chair, better than she can.  Medicare doesn’t cover this.  Each add-on I’ve mentioned is approx. $1,800.  We probably won’t get either one, but  they sure would make life a little easier.  We’ll see.

5) An adjustable bed.  Lisa cannot sleep in a regular bed anymore.  Due to her breathing difficulties, she sleeps with her Trilogy machine on and cannot lay flat.  She currently sleeps in a recliner in the living room.  An adjustable bed would be a blessing for her and would help her get much needed rest.

There are other items that may become necessary in the future, bathroom fixtures, communication devices, etc….All donations are so important to us and we greatly appreciate what everyone is doing to help, financially, physically and spiritually.

Everyone, please feel free to visit Lisa as much as you can!  Being around her friends is so good for her.  Now is the time.  Don’t put it off.

 

Thanks,

Al

Oct 20, 2013

-Hanging with the Royals-

Had a busy, fun weekend!

Saturday we dropped Chloe off at a friend’s who was having a pizza/cupcake party for 11 girls from school.  She loved it!  Emmy was at the Methodist church, helping Grannie with the Pumpkin Sale.  Lisa and I drove to Covington to meet our new ALS Angel, Ms. Denise.  She is loaning us a power/electric wheelchair that Lisa will use until we get her Medicare funded power chair.  Her non-profit is also helping us get a storage/transport rack that will go on the the back of my truck.  She also has some good ideas on fundraising.  Look forward to working with her in the future!

Raced back to get the girls and load up, then headed over to NOLA.  The Royals were having a get-together for  Uncle Gerald’s visit from NYC and B-Day.  I went across the River to a photography showing in the Garden District.  It was very nice.  Excellent local photographer, Frank Relle, had some new work to show.

We stayed at the Royals, then spent Sunday watching football, eating, telling stories and laughing…..a lot.  The kids were in and out of the pool constantly.  Finished the weekend with pizza at Uncle Trent’s.

Got a busy week ahead….see ya’ll later.

-al

Hello Everyone!

Ok. We are starting this blog to take the place of the original website.
This will be the site for everyone to keep up with Lisa Romero LaFaver in her fight to beat ALS!
Thank you to everyone for you’re continued support!

-Lisa & Alan