Team LISA 23

Amongst the Bluebonnets, Texas - April, 2012

Our dear, sweet angel Lisa passed on to Heaven on Monday, July 6, 2020 after an incredible, courageous 9 year battle with A.L.S.
We will miss her immeasurably but know she is at peace, rejoicing with her parents, family and Lord Jesus.

In lieu of flowers, donations can be made here via Paypal.

Thank you and God bless you!

Click on the "Donate" button above for a one-time donation.
   

The Lord is my Shepherd, I shall not want. He makes me lie down in green pastures; 
He leads me beside still waters;
He restores my soul. He leads me in right paths For His Name's sake.
Even though I walk through the darkest valley, I fear no evil;
For you are with me;
Your rod and Your staff - they comfort me.
You prepare a table before me in the presence of my enemies, You anoint my head with oil;
My cup overflows.
Surely goodness and mercy shall follow me All the days of my life. And I shall dwell in the house of the Lord My whole life long.
[Psalm 23:1-6; NRSV]






Lisa Romero LaFaver on Facebook

Scott's Wish
local ALL-VOLUNTEER
501c3 charitable organization
www.scottswish.org


Wonderful ALS support group
Muscular Dystrophy Association
MDA.org
Also helping ALS patients




September 10, 2018

A short update-

It's been a tough year so far.  Tracheostomy surgery in January.  21 days in hospital after.  Multiple stays (4 I think not including initial surgery) in ICU this year due to respiratory infections and UTI's.  A broken femur as well in late May.  Lisa has been fighting infections constantly.  She continues to fight every day.  Her leg is healing slowly.  She just finished another round of anti-biotics today.  Home health monitoring care is ongoing.  September 20th will mark 7 years since her diagnosis.
Our girls are now in 11th and 7th grades.  They are doing well and staying busy with friends and activities.
Thank you to everyone who continues to support us.  We are very blessed and grateful.  Your donations of time, food and money sustain us and keep us rolling along on this journey.



October 22, 2017


Well...it's been a while ;)

I could write many pages about our life over the last 3 years but I really don't want to.  As could be deducted from the lack of updates, I would actually prefer not to write much at all.  However, there are good people out there who donate to us.  Some know us very well, and some not much at all.  They all deserve information on Lisa and how she is doing, so here's an update.  Hopefully it is sufficient.  If not, please feel free to contact me directly.

So, Lisa reached the 6th anniversary of her diagnosis on Sept. 20th, 2017.  Her symptoms started in December 2010 or January 2011, so she is approaching 7 full years of living with ALS.  Living with ALS is very difficult for her.  The decision whether to get a trach/vent tube will probably be made very soon as breathing for her is difficult, even with the Bi-Pap machine in full use.  Last night she had difficulty falling asleep.  Through her full-face mask, she said it felt as if someone was standing on her chest, or holding her diaphram from expanding.  Due to her lack of air flow, speaking clearly is a challenge.  She can still eat foods, mostly ones that are not crumbly.  She can drink a little, fluids that we thicken with, wait for it..."Thick-It".  The majority of her fluids are supplied through her PEG tube.  I add many vitamins, meds and supplements with them.  She gets massage therapy weekly from the same wonderful lady who's been treating her for at least 2 years now?  I can't remember, it's been a while.  She is excellent.  Right now, Lisa is also getting home health through Medicare and she gets physical therapy once a week.  These treatments keep her stretched much better than I could do by myself, so we are grateful for that!  Lisa does not get out of the house too often.  She is most comfortable at home in her recliner, so that is where she sleeps at night and spends the majority of her time in the day.  Outings are mostly for weekly mass.  Occassionally, she gets out to go to the doctor, go with our girls to the store, or to go eat.

The majority of her days are spent watching EWTN or listening to EWTN radio.  Most week days, she watches daily mass, says anywhere from 1 to 3 rosaries, and a divine mercy chaplet.  We usually listen to Dr. Ray's show and then David Anders show on EWTN radio.  She likes to watch Judge Judy in the afternoons and usually watches a little "Property Brothers", or "Love It Or List It" or "Chopped" or "The Voice" or "America's Got Talent" in the evenings with the girls if they've finished homework and don't have dance class.  Then, once the girls have gone to bed, she'll watch EWTN again (Mother Angelica or Women of Grace or similar) until she's ready for lights out.  Throw in some visits from PT or Massage Therapist, maybe a weekly visit or 2 from a friend from church, and that's pretty much her daily routine.

We are still waiting for Lisa's communication tablet, her Tobii device.  We started the process in January and still have not received it.  We actually are not sure why this has taken so long.  We've been proactive and done everything we can to get it, but.....this is life with ALS.  Everything dealing with medical companies seems to take 4 times as long as you think it should.  We actually don't have a reason or answer.  We just hope and pray it arrives ASAP.

The girls are in 10th and 6th grades.  They enjoy and are active in theater and dance classes, and getting together with their friends.  The days, weeks and months seem to be flying by for me, as I assume they are for everyone else.

The last thing I will mention.  We would not be where we are today without our faith in God.  For us, this is through our Catholic religion.  It is the main life support system that has carried us through the turbulent sea that is our daily reality.  As I'm sure you all know, living with ALS is extremely difficult, for all 4 of us.  We have many down days and some days harder than others, but our faith sustains us.  We know that God is always with us.  We've learned a lot about redemtive suffering.  We still have a lot to learn.  If anyone wants to learn more, please don't hesitate to ask us.  Lisa is amazing and her grace, knowledge and wisdom are available to anyone in need. 

This bible chapter is really great as a short read: 2 Corinthians Chapter 4 --The sincerity of his preaching. His comfort in his afflictions.

https://www.biblegateway.com/passage/?search=2+Corinthians+4&version=NABRE

Also, one of the resources that helped me begin to understand suffering...
https://www.ewtn.com/faith/teachings/rdmpc1.htm


A few recent pics...







At the doc...meh.

Lisa's 39th? Birthday!
With our friend from Lebanon,
and now Pastor of St. Agnes in Baton Rouge, Father Charbel.
Notre Dame (Paris) card from
my sister Michelle.
Wearing her Father Seelos necklace. A gift from friends Dannal (Plum Boutique owner) and Heather Elizabeth (jewelry designer/maker).




December 12, 2014

Merry Christmas, Happy Hanukkah & Happy Holidays to everyone.  Latest update.....we've been busy, but in a way, not much has changed.
For Lisa, she has finished with her Occupational Therapy and Physical Therapy.  These in-home services really helped her.  Mandy and Megan each came 2 days a week for about an hour each.  The therapy was really good for Lisa's muscles and joints.  The great attitude and kind hearts of these two ladies was also nice for Lisa.  She really enjoyed having them here.  Hopefully, they will be able to come back in the near future.  It won't be until January at the earliest, probably February after the next ALS clinic day at LSU as Lisa needs new doctor's orders for Medicare to approve the services......dang.  Lisa's left hand is pretty weak now.  She can still feed herself some, but it's difficult, tiring, and a slow process.  She's having a hard time using her phone as she has to press a button on the side to "wake it up".  We're currently trying and find a solution for that, either some prosthetic or a new phone.  The TRAM and her orthotic leg braces with shoes are really good.  We get her in that as much as possible to use her muscles, stretch, and give her some pressure relief in her seating areas.  She's been in pretty good spirits lately and is really looking forward to the next few weeks of Christmas and New Year's.  We have Ms. Samara, thankfully still, 3 days a week, Mon. Tues. and Wed.  We did have a new lady come for about 2 weeks for Thurs. and Fri.  She was great, but unfortunately had to quit due to personal reasons.  Very disappointing as we thought we had found 2 great caregivers again to cover all of Lisa's 53 weekly hours she's qualified for.  As it stands, we only have Ms. Samara.  She's obligated to 2 other places during the week, so, that's why we can only get her for those 3 days, 27 hours total.  We continue to hope that our servicing company will eventually find someone to fill the other hours and perhaps I can start looking for work again.  We'll update you all if anything changes.  Lisa is still able to speak, chew and swallow normally.   This is such a blessing.  She uses her Trilogy every night and during rest periods during the day so she can breathe as normally as possible.  Her breathing is somewhat weak, but the progression seems to be very slow.

We had a great Thanksgiving week.  The Canavans came in from Atlanta, Romeros came in from Baton Rouge, and Owen and Johnny were here as well from NOLA.  All 5 siblings together for 4 days.  We also were grateful to have Kelly and Lisa's childhood dear friend, really their sister, Wende spend Thanksgiving day with us.  Rob's Uncle Scott came over from FLA as well and was such a pleasure to have here.  He helped a lot and did some great art crafts with the kids.  It was nice and the kids had a blast!  Natalie worked all day, every day, preparing most of the great food.  Tania provided and cooked our turkey.  It was really good.  Kelly helped Natalie in the kitchen as well as taking care of Lisa so Rob and I could get out in the mornings and hunt.  Grannie and Sandra made us some dishes to add to the feast.  It was a really fun week.
On the Saturday after, Owen, Johnny and Maryam got us a great Christmas tree.  Maryam and Emmy decorated it for at least 3 hours.  They worked with Lisa to put on only ornaments that we've collected over the years that have some meaning to our family.  Lisa can tell you a story about each ornament on the tree, where it came from, etc......me.  Not so much.

Another week of school and the girls will be out for 2 weeks for Christmas break.  1/2 the school year will be over!  They continue with their weekly dance classes.  Chloe goes to tumbling and Emmy is in Musical Theater.  They both really enjoy those activities.
Time goes by so fast!  Emmy's 13th birthday was on Dec. 7th.  We had a nice weekend and she got to do a few things with her friends.  As soon as the new year starts, we'll be busy again!  Chloe's 9th birthday is Jan. 17th and Mardi Gras will be a month after that!  So, sounds like the rest of this winter is going to be pretty fun.




October 20, 2014

Well, it's been an extremely busy few months around here.  First off, thank you for your continued support.  As the school year has progressed, we've been non-stop it seems.

For Lisa, she has been doing pretty well lately.  She has gone through a round of Occupational Therapy with Mandy & is almost done with a round of Physical Therapy with Megan.  They each come 2x per week.  Hopefully, Mandy will be able to come again in about 8 weeks for another round.  Medicare won't provide these services continuously.  Lisa has about 3 more weeks of PT.  Lisa has to re-qualify for it with a new doctor's order.  The Rifton TRAM has been a great tool.  I've posted a couple of videos and pics of Lisa using it.  It has helped with the PT, but we're still waiting on braces for Lisa's lower legs and feet to really use it for walking.  She isn't supposed to walk without these as she can seriously damage her tendons and ligaments.  We've been waiting a number of weeks so far, but these have to be hand made, customized to Lisa, so..........hopefully, they come in soon.  We've also used it for helping Lisa get dressed, and we hope to adapt to it as the weather cools and Lisa needs more clothing, leggings, etc...to keep her muscles warm.  As you can imagine, dressing and undressing someone is difficult and can be dangerous for a patient with no leg control.  To complicate things even more, as many of you know, we can't lay Lisa flat to dress her without her Trilogy respirator as her diaphragm is very weak.  She would essentially suffocate if left in a reclined position without it for more than 30 seconds.
Otherwise, Lisa is doing OK.  Progression seems to continue to be very slow.  She has lost more use of her left hand, so she needs more help with feeding now.
As for the care-giving, it continues to be a tango of 1 step forward, 2 steps back.....

In late August, we lost another caregiver due to back issues / workman's comp.  Since late August we've only had Ms. Samara 3 days a week, 8am-5pm.  She was coming M-W-F.  They tried to change her to only M-W, but Lisa put up a fight and was able to convince them to get her here on M-T-W.  So, I had to quit my part-time job that I had from June-August.  Our case manager, who tried her best to stick up for us, left the company at the end of September.  So, it's been a roller coaster to say the least.  They didn't/weren't able to send anyone else as they said no one else was available.  So......here we are.  I've pretty much given up on finding outside work, at least for now.  I'm 24/7 care-giving on Thurs, Fri, Sat & Sun, and after 5pm on Mon, Tues, Wed.......unfortunately for Lisa.  We do have a new caregiver coming for training tomorrow.  If everything works out and she can handle the duties and frequent lifting/transfers, she'll be here on Thursdays & Fridays from 8am-5pm.

The school year has kept us extremely busy.  Between the girls playing volleyball, soccer, and weekly dance classes, seems that every day is filled with little down time.  Weekends are a mixture of soccer games, church, birthday parties, Saints games and visiting with friends and family, both in-town and out-of-town visitors.  The sports activities will be winding down in the next week or 2 and we'll have more time during this approaching holiday season for family and friends.  Time just keeps flying by......




August 20, 2014

As most of you, practically anyone not under a rock knows, the ALS #IceBucketChallenge has been phenomenal.  Team Lisa 23 has been a direct beneficiary of this outpouring of support from so many people around the country, even world.  I'm thankful that the awareness about ALS is getting to the level that it needs.  Lisa and I are absolutely astonished, grateful, humbled, and practically speechless at how wonderful the support has been for us.  So many friends and family have created videos, shared Lisa's story, and expressed their love for Lisa to the point that many people we have never met have donated to us.  It's amazing what you all have done for Lisa and our family.  Thank you so much!

I will update more soon but before I finish tonight's post, I want to let everyone know that, obviously, if you've checked out Lisa's "Go Fund Me" page, you all have made it a success that we really didn't believe was possible.  Due to so many people's amazing generosity, Lisa will be getting the Rifton TRAM soon.  I will make sure to post video and pictures once she gets it and can use it.  For those not familiar with this wonderful device, here is a Youtube video link of Dr. Craig Oster, 19 year ALS survivor, using his:

https://www.youtube.com/watch?v=k2msq1Z0iYc&list=PL3rQ9u94RFNf4RlKDkSVYGm69M7PnKAPU&index=9

Dr. Craig is an inspiration for Lisa.  When she saw him using his, she instantly knew how wonderful a device it would be for her and her caregivers.

Here's the link to the Rifton company's TRAM device page:
http://www.rifton.com/products/lift-and-transfer-devices/rifton-tram

As I've mentioned earlier tonight on Facebook, obtaining this TRAM would not have been possible without all of YOU.  I'd also like to specifically mention Denise Gutnisky and Scott'sWish.org.  Denise has been helping us since we met her last Fall.  She called me a few weeks ago to check on Lisa.  After I told her about our latest goals, she asked if it'd be OK to call the Rifton company herself and see if she could get the price discounted.  Miraculously, and I mean that literally, they agreed to give Denise and Scott's Wish a 25% discount if they purchased the TRAM.  That's the cliff-notes version.....anyway, I want to make sure that all of our Team Lisa 23 family knows how much Scott's Wish and Denise have helped us over the last year.

If you are looking for a charity to support, Scott's Wish, an ALL VOLUNTEER 501c3 organization, is worthy of your strong consideration.  Along with ALS Guardian Angels, I don't know of any better groups of people out there doing wonderful things to directly help people in need.  Please support them!

I will have more updates very soon.  Thank you all so much for loving Lisa and helping us so much.  Your support has honestly been overwhelming and incredibly moving to me and Lisa.
-Alan




July 28, 2014

Ok.  So a list of what's happened since the last update in February......

 



 

Finances-  As the caregiving schedule has not been settled over the past months, I have only recently been able to work part-time.  I have started an LLC for my photo business.  I plan to ramp this up and really focus on it in the very near future, trying to start getting some projects/clients/jobs.  As it stands, we still need your continued support to be able to make ends meet and pay the bills.  We're continuing to try and reduce expenses.  Our substantial monthly expenses are rent, health/life/auto insurance, utilities, supplements, and medical equipment.

 From the time we first started the Deanna Protocol, Lisa noticed the supplements made a big difference in her energy levels, decrease in muscle cramping and spasms.  I believe it has recently been receiving more attention from the media and medical community with positive reviews.  In any case, although it's not a cure, it has definitely made a positive impact on Lisa's symptoms.

More about Deanna and the protocol can be found at their site:  www.winningthefight.net.

Medical Equipment-  I'll finish this update with what Lisa's most pressing need is right now.  Over the last few weeks, Lisa has been dropped and/or stranded a few times.  All times were in the bathroom.  On those occasions, I was not home.  Twice while I was in New Orleans, once in Covington.  With donations, we bought a Drive bath lift seat in January.  This allowed Lisa to be transferred to a sitting position in the tub, then lowered to be able to get a bath.  The chair has malfunctioned and no longer works.  We're trying to get Drive to warranty the parts/seat, but they keep telling us we have to go through the seller, who we're having a little trouble getting results from.  We will continue to try and get results as the chair was pretty expensive and supposedly had a 2-yer warranty.  She was stranded twice and needed someone with a very strong back/legs to lift her from a seated position in the tub, up and out, and into her rolling chair.  As can be imagined, it takes a lot of force.  The last time, I got home after she'd been stuck there for about an hour and lifted her out.  Another time, she was dropped to the floor during a transition from chair to toilet.  I know you all understand how painful and scary this is to Lisa.  We're now using a traditional shower chair that extends out into the bathroom floor.  No baths anymore.  Our goal now is to find a safe, effective way for caretakers to transfer her in the confines of our modestly sized bathroom.  The ideal solution would be a ceiling mounted rail system involving track and slings.  As we are renters, this is not possible.  Many house modifications that other home-owning ALS patients can make are not an option.  We need another solution.  Another problem is the constant pressure being placed on Lisa's lower back, bottom, thighs.  Since she cannot stand, her skin and remaining muscles in those areas are suffering.  A "standing frame" of some sort would provide ideal relief and muscle stretching.  I have and will research our different options to find the most effective yet least expensive way to accomplish both of these immediate problems.  Lisa's "Go Fund Me" site will not only provide us with funding for our daily expenses, but will be directly used for a solution for the bathroom.

You can visit her site at:  www.gofundme.com/bwl7ok.

Please continue to share with your friends.

Until next time, another thanks for all of you supporting us through this fight.  It means more to Lisa and me than I think you know.

-Alan

Some photos from recent months-


../Pics/D7K_2947.jpg










Beetlejuice.....in his favorite spot.  Riding shotgun with Mamma.

 


 

February 5, 2014

Like always, we've had a lot going on over the last month and a half.  Christmas and New Year's came and went in a flash.  Biggest news for Lisa before the year ended was that she received her Medicare provided wheelchair.  It was close, but it came in a few days before the year ended.  Our portion was only $1100, instead of the $5300+ if it would have been delivered after Dec. 31st.  It's got a lot of great features for Lisa with a very comfortable seat that tilts and lifts.  Battery power is excellent and it's got decent speed.

Another big event has been the move to the rental house.  It's been good and we've had so many visitors since moving in.  Have had friends and relatives from Atlanta area, a constant flow of family and friends from NOLA, and Baton Rouge also.  Right now, hoping the hot water line gets repaired soon.  Discovered a leak under the slab.  Apparently has been going on since before we moved in.  Got to get the water bill adjusted as soon as the repair gets done.  Hopefully soon!!!

Emmy is almost done with soccer.  She really liked it and is a good player, especially in her first season.  She and Chloe will practice with some friend's teams for the rest of the Spring and will sign up again in late summer for the local rec program (filled up at this point).

Lisa is doing pretty good.  Her legs are much weaker now.  Walking is not much of an option, however, she can stand temporarily and can still be transferred from chair to chair or chair to van/truck.  With some of the donations, we purchased a much needed tub lift chair.  She is now able to safely transfer from wheelchair to the tub chair, where I can lower her into a warm bath.  Much safer for her and me!

Our benefit is just days away.  We hope to raise enough funds for a wheelchair van in the near future.  www.loveforlisa23.com

New also!!!  Just got word today that we finally got approved for the Medicaid funded caregiver program.  STARC is in the process of finding us some good help for Lisa.  They should start within the next week or two I hope!  She really deserves an improvement from my version of "caregiving".

-Al

 


 

December 21, 2013

The benefit at The Howlin Wolf is coming up before we know it!  We will have a great time and hope to see many people there.  Advance tickets can be purchased at www.loveforlisa23.com.  Please spread the word!

A lot has happened since the last update.  We have moved into a rental house in the same neighborhood as Grannie.  We are still very close to the girls school and our church.  We have a little more much needed room and Lisa can get around pretty easily in her chair with the open floorplan.

We are still waiting on Lisa's new powerchair.  As usual, there was a communication problem between the neurologist and medical supply company.  We hope to get it by the end of the year....but we know how that all goes.  Don't hold your breath.  She did get her Medicare provided hospital bed!  No more sleeping in the recliner! 

Emmy was selected for the soccer team at school!  I've been hoping she would go for it.  I think she's really enjoying it.  She has a group of great coaches.  Chloe has made a great group of friends and is involved in Brownies.

 Other than that, just getting ready for the rest of the holidays and the new year.

I also have the blog going at www.teamlisa23.wordpress.com if you want to follow that.

Adios for now,

-Al



September 12, 2013

    Sorry everyone, as the updates have been slow in coming.....I've been pretty busy but hope to improve on keeping the updates more frequent.  

* I think I have fixed the PayPal donation button.  You should be able to select a monthly subscription amount, and have it transfer to the Paypal site, not just the $5 one only.  If you want to change, select the "Unsubscribe" button, then redo with your desired amount.  Thank you for all your generosity!!!

First, Lisa's update:

    Lisa is doing OK.  She cannot walk unassisted.  In the house, she uses her walker.  Her legs are very weak and she cannot stand in one spot for more than 30 seconds.  She can get up from the bed but has difficulty positioning herself in the bed.  She has a very hard time adjusting pillows and cannot pull sheets over her.  She cannot lie down on her back.  If she does, she starts to lose ability to breathe.  She sleeps either sitting up or on her side, propped up on 4 pillows.  She has a bipap machine that she uses daily.  It covers her mouth and nose and has to be strapped very tight so it doesn't leak.  I installed a toilet seat riser and an electronic bidet in the bathroom.  She can get to the bathroom using her walker, but cannot pull her underwear down, so she needs help every time.  She cannot dress herself.  Emmy or I help her with that.  She can eat with a fork and drinks through a straw, but has great difficulty using her hands.  At the ALS support meeting on Monday, they advised us to schedule her now for a feeding tube.  She can use it when she can't swallow food anymore.  We have a manual wheelchair that was donated by Tania and we use it every day.  We are going to get fitted for a motorized wheelchair very soon.  Lisa's Medicare will pay for 1 every 5 years.  However, Medicare and our private insurance doesn't pay for a handicap vehicle or ramp or anything like that.  We have to buy that ourselves.  I can build a ramp for the house.  I can also transfer her to our minivan.  We would really like to get a used handicap van with a ramp or lift, so she can roll right into it.  I'll start looking into that.  In the meantime, I may get a wheelchair carrier that I can attach to the back of my truck.  It fits in the receiver hitch.  A motorized wheelchair then rolls up on it for transport.

    We've also just found out about a state program that will help pay for a daycare aid to come in.  The state will pay that person $7.25 an hour.  Lisa did the phone application today, so right now, we're waiting to see how many hours of care we qualify for.  They will take Lisa to the bathroom, dress her, feed her, bathe if necessary, and do light housework.  Takes 2 months to get approval.  This would allow me to try and go back to work.

The move to Louisiana is complete.  The closing for our short sale was in late August.  It was a very stressful process.  We had a willing "investor group" buyer, but with the paperwork involved and communication problems between our realtor, lender and the 2 different closing attorney's, it almost didn't work out.  Literally came down to within a few hours of complete collapse.  Anyway, it's done.  Next issue was my employment.  I had been talking to an insurance agent here in Slidell who lead me to believe that he would hire me as soon as I obtained my La. Insurance Producer's License, with a start date in August or September.  Was told that it was a lot of hours with a lot of time on the road in the afternoons and evenings, but I would be able to work out of my house.  Lisa and I thought it would be worth a try.  I went ahead and gave him a resume, filled all the application paperwork, passed a background check, etc.....I took my Kaplan online course, studying for 4 weeks.  Passed that test, then passed my La. state test on August 22nd.  As I was leaving the test facility I called his office to notify them.  I was told I probably couldn't start until October.  I let them know I wasn't pleased about that.  I went in to talk to him the following Monday to see if there was any way I could start earlier.  He then told me that I couldn't start until December 1st.  He also seemed very worried about my ability to commit to his agency, "given your wife's medical condition."  I should have seen it coming I guess, that he really didn't want to hire me.  He also told me that I could probably start for the Baton Rouge area agent on September 1st, but I would have to move there.  Bless his heart.  Anyway, probably wasn't the best job for me.

    So, now we're trying to figure out what I can do.  I've had many offers from friends to refer me to someone they know.  Here's the problem:  The girls walk to school every morning.  I get them up, get them ready and we walk 2 blocks to school at 8am.  Then I make sure Lisa is fed, supplements, bathroom, etc...She usually takes a nap with the bipap from about 9 to 11am.  Then I feed her and we do errands etc....Once a week we drive over to New Orleans.  Tania & Vinny let us use their apartment and Norman comes over with his massage table.  He gives Lisa a FREE 30 minute massage and works on her joints, which because of all the muscle atrophy, are very cramped and painful.  She is in pain constantly, especially her shoulders.  Norman is a Romero family friend and is a wonderful, very positive, spiritual person, and a great influence on us.  At 3pm, we pick the girls up from school, come home and do home work for a few hours, then it's dinner, dog care for Archie and Beetle, a little TV, then bed.  In between all this, I do what all of you do, laundry, bills, phone calls to insurance companies, groceries, and all the little things you can't remember that take up most of our "free time"!  Every day blows by so fast.

    Emmy just started playing volleyball for the school and she likes it a lot.  We want to get Chloe either in dance or soccer.  I've got to get on that!  Also, to help pay for the girl's tuition, I will start cleaning the 2 chapels at church this week.  I'll do that once a week through June.  Lisa will probably sit in adoration while I clean.  Time well spent.  

Thanks for all the donations.  My unemployment runs out in 3 weeks and we don't know when or where I'll start working.  We couldn't make it without all the help!

We've also just started working on a big fundraiser (Steve Gleason style) we hope to have in New Orleans in January 2014.  Hope to have live bands, food, auctions, etc....Lori, Frances, Maryam and some others are getting it started.  We will contact many of you soon for help/networking etc....Will update more on that real soon.

Also, we're going to Capital One bank tomorrow to try and set up an account for people to make donations at any branch.  This way people won't have to use PayPal or mail checks.

I know this update is rambled and jumps from here to there, but I will update as much as I can.  Time to go get the girls from school!

-Al

 



June 13, 2013

    Well, as many of you know, the move back to Louisiana is under way.  This is a bittersweet move.  We've lived in north Georgia for 13 years now.  We have many good friends and neighbors that we are sad to leave.  We will really miss the Canavans: Kelly, Bobby, Mitchell and Rob.  They're just gonna have to come down more often.  We will also terribly miss our wonderful church, Our Lady of the Mountains, our great priest, Father Byrd, and Deacon Lloyd and his wife Jill.  I feel so fortunate to have met them.  I don't think they know how instrumental they have been to me, my spiritual growth and my understanding of suffering.  They have nurtured a seed that was planted by Lisa, Mrs. Carrie and Mr. Owen over 15 years ago.  They have guided me towards a wonderful gift that I will treasure forever, my Catholic faith and love of God.  

We are looking forward to moving back home though in many ways.  There are many good things that will be back in our daily lives, especially family and close friends.  I look forward to the girls' new school and having them spend the rest of their childhood experiencing many of the same places, things and culture I grew up with in Southeast La.

I hope that our move will tempt our Georgia friends to visit New Orleans more frequently.  I am always surprised at how many people I meet here, who have never really experienced New Orleans, aside from a few nights on Bourbon St.  Can't wait for them to visit.

Over the last year, the girls did well at their school here.  It is a very good school and they really liked it.  I'm also glad that for the next 3 years, they will get to attend their new school together.

We were also pretty busy as I adjusted my priorities a little and decided we needed to spend more good quality family time together.  We were fortunate to be able to spend a week at the beach (Lisa's favorite place) in Ft. Walton  in September and take a surprise trip (first time for Lisa, Emmy and Chloe) to Disney World in February.  Both trips were great with near perfect weather.  We were also able to spend Thanksgiving in Georgia with the Canavans and Baton Rouge Romeros, New Years in New Orleans with Grannie Raine, Maryam, Trent, the Davis', Foltzs' and Yarbroughs', and Spring Break in Texas with Paw Paw and Grammy, with a little stop in Lake Charles to see Michael and Stephanie, and a quick photo stop at "Duck Dynasty" in West Monroe on the way home.  Sprinkle in visits from Uncle Owen, Aunt Maryam, Aunt Constance, Cici and a few visits to Chuck's sushi restaurant "Steel".  Also, help from Grannie, Aunt Sandra, Aunt Tania, Lilly and Ricky.  Sorry, I'm probably forgetting a few people and occasions.  In any case, it's been a nice busy year.

Emmy played volleyball at the YMCA in the fall and spring.  Chloe participated in gymnastics over the last year.  I hope to get them back in the swing of things when we get settled.  Also would like to get Emmy on the swim team and Chloe playing soccer.  We'll see.

Lisa is doing pretty good.  She has lost a lot of use of her left hand and her legs are pretty weak, so walking is much more of a chore now.  She has her walker and uses it well.  She doesn't drive much anymore but we will keep the Honda van for the foreseeable future.  The kids really like it and its much easier for Lisa to get into than my truck.  In Louisiana, I do look forward to Lisa being surrounded by many friends and family.  I think that over the last year, she has been pretty isolated at times, being stuck at home while I was at work and the kids at school.  I hope and think that being around family/friends more frequently will boost her spirits a little.  In other words, please visit with and spend as much time with her as possible.  I think that laughter is great medicine.  It will also help getting out of this 2 story house.  WE HATE STAIRS.

I haven't given up on the t-shirt project.  I hope to have some made and passed out soon.  More on that later.

Thank you Georgia peeps.  Thank you for all the help with packing and moving.  Couldn't have done this without you all.  We will miss you but will come back and visit as much as possible......no way I can go too long without a ride through those beautiful mountains while slurpin down some boiled peanuts.

-AL

____________________________________________________________________________________________________________________________________

August 31, 2012

    We're working on T-shirts for Team Lisa 23.  Lori Pablovich and Carlos Grimaldo have gotten the ball rolling on this.  Thanks go out to them.  Check Lisa's FaceBook page for the link to order.  As of now, T-shirts will be shipped to Lori, and then she will distribute to the Krewe du NoLa.  We're working on adding some different designs, and then have some orders shipped to us, so our ATL crewe can get them quicker.  We'll also figure out a way to get them out to the "extended Army" all around the country if need be.

    Kids update-- Emmy has started playing volleyball at the YMCA.  This is her first year.  Chloe has started "jinastics".  I hope to have some pics up soon.  I'm sure Lisa will have some posted on FB.  So far, the girls love their new school.  Their teachers are great.  It's nice for them and Lisa to have more normal mornings and afternoons.  Big difference from the last few years, and the 25 mile north metro cross-county commute.

-AL

_____________________________________________________________________________________________________________________________________

August 11, 2012

    For anyone interested in learning more about life with ALS, here is a good website.  It's written by a former nurse, still fighting, who was diagnosed with ALS in 1985.  Still going strong after 26 years!!!  She provides a ton of information for patients and their direct caregivers, as well as friends and family.

http://www.alsfrombothsides.org

____________________________________________________________________________________________________________________________________

older posts

 

 

Christmas in the Oaks 2010

City Park, New Orleans

 

Ft. Walton Beach, FL

August, 2011

 

Fairgrounds, New Orleans

December, 2011

 

July 4th, 2010

Canton, GA

Emmy B-Day, 2011

Mardi Gras 2012, Slidell

Christmas in the Oaks 2011

City Park, New Orleans

 

 

 

 
www.flickr.com
This is a Flickr badge showing public photos and videos from awlafaver. Make your own badge here.
Alan Wayne Photography

More pics here, however, to see the family pics, you have to register (it's free) and become one of my contacts.

My photography website.

Ordering photos from this site is another 

way to help us out.  Enter coupon code 

"TL23friend" at checkout for a discount.