Monday, September 28, 2009

BIG yardsale in Albany

For all my friends and relatives in southwest GA.....

Thanks First Baptist Church for the Fellowship Charity Fundraiser! The pastor grilled steaks, then the fixin's and meat were sold as the charity event. The event was very successful... I appreciate my home church and their caring and very generous spirit!!!! The efforts of the pastor, head deacon, and many others humble my family with the very generous amount raised.

OK, now get ready

Another well planned and abundantly supplied fund raiser! Sister Cathy and husband Roger (who retired 8/30 with 30 years in at P&G, only to go to work full time on this all month!) along with my other brothers and sisters are having a huge, huge yard sale. There have been so many items donated that this will last Friday Oct 2nd and Saturday, Oct 3rd. 7am to 2pm each day (rain cancels event only on a really rainy day)

Also, so many more items (really good ones) could not be displayed for lack of room that there will be another yard sale the first weekend of December. Maybe even into January for a third one?!? More details on that later.

Even if you don't do yard sales, come by anyway! There will be coffee and cakes, pies, cookies, brownies... all home made and priced right just for this event. Plus this is going to be the happ-nin place on Saturday morning. Come and meet up with your friends and support a good cause!

Why are there so many fund raisers?

Several weeks after Molly's SCI (spinal cord injury) a couple from our church, Bob and Doreen Blair, asked if they could help us. They have been with us most every step since. Bob has helped me make the hard decisions, told me where and when to get active or tough and offering to arrange help and bodies to do the work. ....How do they know what to do? Doreen suffered a SCI 8 years ago.

One of the things that Bob told me on the first visit was, "I don't care how big your bank account is, you are probably going to go broke... and in the future it will not be hard to prove you are indigent." Bob has been right with every other thing he has told us, didn't matter if I agreed with him or not, but lets hope that he is wrong here.

I have been reminded that I do not have the legal obligation to pay for anything involving Molly, but the moral obligation to sustain my family. That includes the expenses of Molly and the two boys.

Julie has had to give up her life work and passion (interior design)to care for Molly. She hopes that she will again do it full time. Yet, we still have all our regular expenses AND all the new ones involving Molly and the boys. Medicaid does cover major items, but there is so much more!!! I now maintain 3 different jobs that bring in money. Yea, 3 jobs, 7 days a week. Still schedule church in on Sunday.

Molly's expenses have been more than an average man my age will make in a lifetime. We go to "clinics" instead of Dr's offices. Only the essential items are bought. Didn't renew the newspaper, etc... Friends still bring meals (thank God!) several times a week.
I'm not saying we're ready to go to the poor house nor are we going to fall off the face of the earth tomorrow. I am merely telling YOU, our friends, why there is an ongoing need to raise money. Thanks to family and friends I have not had to organize any of these. Please hear my heart when I tell you this money is not in any way for pleasure!!!

So....hows Molly?

She told me that she does not consider herself a permanent quadriplegic. We can actually use the word now. There is "a knowing" in her that she will get better; this is only temporary. Temporary could be years she said, but in her heart she feels that God has assured her that this is not permanent. And she hopes that God does not see fit that years is plural at all. She also stated that God may want to do other things and she accepts that, just does not want it. Its OK not to want it.

Physically, all the emergencies are mostly over. Small things pop up daily such as pressure point sores. The daily routine is grinding, but there is comfort in a routine.

Mentally she is getting it right; most of the time. Julie and I still struggle a lot.
She is getting stronger and can help ever so slightly when I lift her into the car or move her from the bed to her chair. Both Julie and I are getting it better now also. She now laughs sometimes when I muss her freshly combed hair during the lift.

Thank you for all your prayers! We believe in the power of prayer and in faith. Even as small as a mustard seed.

Love ya'll

Tuesday, September 15, 2009

Mid September and...

Mid September and (I really must be getting back to school).... hmmm, would be a good song if Rod Stewart wanted to sing it!
Yea, I know, its bad!!!

Well, IT IS MID SEPTEMBER and it has been almost 100 days since Molly's accident.

Lets look back...

Late on June 9th and into the early morning hours of the 10th we spent all of our hours in the trauma emergency room praying with our friends Lynn and Steve Wilson. Was Molly going to live? There were doubts. Then the trauma surgeon came out with the words that I still hear, right now as I am writing, "your daughter is paralyzed from the neck down". No compassion or so it seemed, just the matter of fact statement. Silence; we were shocked! In fact I thought he may be referring to a temporary condition because of some shot they administered... or something! Certainly this was not going to be permanent! We cried, hard, with our friends!

Molly couldn't move... anything... except her eyes, and the whites of her eyes were now blood red. It was a chilling sight. I tried dialing relatives in Georgia several times but couldn't find the courage to complete the call.

ICU... St Joe for appx 3 weeks, intensive care ward for another week and half before being transferred to TGH and rehab. Multiple times Julie and I came to you requesting prayer for Molly's "emergencies" that were going on within her body. You answered each cry for help! Thank you!

Slow track to recovery if you try to watch the water in the kettle boil.

What has happened in 100 days?

Molly came off the respirator, lung is OK (still hard to cough or laugh). She is moving both arms. No hands or fingers, yet there is slight thumb movement. The multiple breaks in the left shoulder and elbow are beginning to show signs of improvement with the extra movement.
She has learned to use some devises that are strapped to her arm to do a number of tasks. She can type on the computer, she can use her spoon, she can use the toothbrush. She has figured out how she can dial on the telephone and then hold the phone for a conversation. These tasks are primary and she still needs assistance with the setup of the device but every accomplishment is more freedom.
Molly is wanting to get out and mix with people again and does not see herself as limited. Important to her mentally!

Now the big news in the last couple of days. Molly is moving her left foot on demand! Couple of toes and the foot (from the ankle). Its coming!

What is the future?

Molly's new diggs are being converted from the garage. She will have her own "apartment" complete with a roll-in bath and separate entrances to outside and into the house. There will be room for her bed and her sons bed.

Our goal is to get Molly into a full time rehab facility to help expedite and fully develop these improvements. Don't get me wrong, TGH rehab has done great in working with her. The caring rehab specialists have certainly gone above and beyond in working with Molly, but the desire to get her to a spinal cord specialist that concentrate on Molly's type of injury with cutting edge techniques is compelling.

Two fund raisers in Georgia...

September 24th- First Baptist of Albany is having a fellowship/fundraiser for Molly... you may donate by sending a check to First Baptist noting that it is to go to Molly Doyal Santiago Irrevocable Trust or simply mark it as Benevolence/Molly

Oct 3rd weekend in Albany... aunt HunnyPie is throwing a HUGE, I said HUGE yard sale that is going to spill out into the street and down the road a bit. Millions of people will be there... HunnyPie and Roger live at 200 Byron Plantation Rd

More later...

Wednesday, September 2, 2009

HOME! At last!

Molly is home! So many delays, so many false hopes; she finally received the OK to leave the hospital.

The updates have been slow coming... many of you have sent e-mails wanting updates... the truth is we have been so busy and sooooo tired!

Three areas to tell you about:

She is improving. Slowly (painstaking so to Mom and Dad) but surely as visiting friends will attest.
Main areas of improvement are some fine motor skills in the right arm, and some skills in the left. Although she is unable to use her hands, she is able to manipulate a brand new notebook (hot pink) that some family friends gave her. She does so through two methods. One is software called Dragon Naturally Speaking. This is voice activated that interfaces with Windows and Word (MS programs) to move around on the computer. Dragon speak was also given to her by a friend. We are still learning all the methodology and nuances for this software.
The other is a simple device that is strapped to her wrist that looks like a pointer with a rubber tip. She can tap out her moves on the computer. The latter helps develop her motor skills again.
A big development is that Molly is now able to slightly move her left big toe and the one next to it!!! This is major! Although the movement is very slight (like her thumb on the right hand)it proves that not all the spinal cord was damaged completely. It is termed now as an incomplete spinal cord injury. Complete meaning totally severed or damaged. A little of the dura and myelin around the spinal cord was left intact so that it now recognizes that Molly wants to move the toe and the signal can get through to the toe. The dura is like bark on a tree, it protects; myelin is under the dura and surrounds the spinal cord. The myelin transmits a chemical/electrical signal from the brain to wherever the brain is sending the message, ie...the "message highway". It is this "message highway" that was destroyed when Molly's neck vertebra were crushed and rendered her unable to move below her upper chest(I think I have that right, if not, oh well... something like that).
With a special device she can also hold a telephone, a fork, and a toothbrush. She can use them but not like you would imagine. She has motor skills on a primary level, they are not fine tuned YET!

The house:
The living room and dining room have been combined into one large room. Our dining room table and chairs are gone. Sofa and table gone. Chairs gone. Entertainment area gone and replaced with the DR sideboard that now doubles as a TV stand. A new 42" plasma sits on the sideboard that was generously given to Molly by friends of the family. This will serve as Molly's bedroom until the garage is converted into her bedroom.
We took down a wall and opened several doorways to appx 42" width. It is amazing how much this opened up the area. The tough part was cutting through the brick wall in the den, but it now looks nice. The whole front of the house was re-floored. Through the generosity of a flooring manufacturer and two flooring men, whom I am proud to call my friends, laid new smooth flooring throughout the area (appx 600 square feet). New paint also went on the walls, ceiling and baseboard.
Phase two should start on the garage following labor day weekend. There will be a new chair friendly bath as well as plenty of room for Molly to live and boys to visit overnight. There will also be some modifications made to the bedrooms that the girls lived in growing up as part of the master plan. Completion date scheduled for Nov/Dec. Hope before Thanksgiving!

Thomas and Julie:

Forget about trying not to be overwhelmed, that happened some time back in June!

Julie is taking the brunt of the action and demands. She has little and no time to work or play. No social life. Molly is still a full care person and has to be turned in her bed every 2 hours 'round the clock. She has to be catheterized every 6 hours 'round the clock. The personal hygiene needs are attended to by Julie. Ole Dad wants to be left out of that to offer some dignity to Molly. If, however, we cannot arrange relief and help for Julie in the near future, I will learn so as not to completely overburden Julie. She is a great Mom and caregiver. Relief efforts on two fronts are in the works.

I work when I can. Julie does need help getting Molly into the car and getting her to the doctor's office and to TGH for physical therapy. I try to plan my schedule around getting Molly in and out of the car at the various places. Invariably there is a time conflict. It would be nice to one day have a roll-into minivan to fore go the in and out of her chair so often. It is difficult at best. Thank God my week schedule has been light this summer and my week day work is by appointments. But I really have some marathon workdays to try to make up for lack of productive work otherwise. So, you can understand why the posts to the blog have been slow coming.

So what are our needs?

pray for Molly's complete physical healing
pray for Molly's mental well being (its scary to look forward)
pray for T and J's mental well being also, we step to the edge sometimes
pray that an advanced physical therapy facility becomes available to Molly
pray for wisdom in our decisions that effect our future (that's scary too)
pray for our finances (business was slow even before this happened as both of our jobs relied heavily on the building industry) and both Julie and myself are fee based (commissions)
Other than these, let Molly hear from you! A call, a note, a letter in the mail or email ( to let her know you are thinking about her. You are also welcome in our home! In fact, please come by! We would love to have you come by to see the girl.

Til next time!

Wednesday, August 12, 2009

Chili's Event Super Success

There were so many positive points to this night, it is hard to know where to start.
Chad "the Dad" Schoppa came up with the idea. Most people I ask to come was not aware that Chili's allowed benefits such as this... GOOD FOR OUR NEIGHBORHOOD CHILI'S! Thank you!!!
Chili's created the email poster and sent it to Chad, who printed, distributed and emailed it and then the poster exponentially multiplied like crazy. Debbie Schoppa, Chad's Mom helped coordinate the evening as well as having her whole office in attendance!

Molly wanted to come. We were unsure until almost the last moment because of the tests and other things going on with her medically. I was informed that Ride Away (a company specializing in special needs transportation) would allow us to "test drive" one of their vans to get Molly back and forth to the event. We had a Chrysler Town and Country special. Push a button, the side door opens and the ramp descended. Molly was able to power wheel her chair into the van and away we went!!!

Molly was apprehensive. How would people react to her? Would they stare? Would children be afraid of the chair?
Molly stated on the way that she would not eat because she would have to be fed. She took some pain medicine prior to getting there so she would feel good.
As we arrived, she did not want me to pull up in front of the building because what if she had trouble getting the chair out? She wasn't sure she could get it down the ramp without running off the side.
We finally got out safe and sound and were immediately surrounded by friends!!! For the next two and a half hours Molly was the star of the night! (she later told me that she felt like a movie star cause everyone wanted to talk to her!)
Many members from her care team at TGH were in attendance. There was a great out pouring of past swimmers and coaches from Carrollwood Village Swim Team. We were touched to see so many parents from the swim team days!!
Lake Carroll Baptist friends were abundant; many of these have been "life friends".

All night, one after another waited in line often for 15-20 minutes just to wish Molly health and happiness. Hundreds must have passed by. And still they came!!!
It seemed like Thanksgiving, Christmas, and Fourth of July all in one night.

To eat... count on 45 minutes to an hour to be seated... and it went on all night! Many left without eating.

Chad had put a big jar at the end of the table where we were, simply marked Molly's Trust Fund. By the end of the evening it was stuffed with cards, checks and cash... you truly are the most generous people in Florida!!! Even the servers at Chili's gave in excess of $100 to the fund. We, the Doyal's and the Schoppa's are blessed to have friends like YOU!

On behalf of Molly she thanks you for all the wonderful support. That was therapy worth a million bucks!

Friday, August 7, 2009

Chili's and Molly

Dear friends and neighbors,

Chili's at the corner of Fletcher and Dale Mabry is teaming with Molly this coming Tuesday, August 11th from 5pm till 11pm.
10% of your order that night will be donated to Molly Doyal Santiago Irrevocable Trust.

You must bring the attached flier with you and give it to your server for the credit to go toward Molly's medical expenses.

errr....Because I can't get the flier to stick to this blog, please e-mail requesting a file of the flier so you can print it out and take it.

Thank you for remembering Molly.

Wednesday, August 5, 2009

Day 58

The care team at TGH had said that Molly would come home tomorrow. Because of the continued medical problems, Molly's discharge date is now August 20th.

Yesterday Molly passed out during physical therapy. There has been a continued drop in her hemoglobin count. Last week she took 4 units of blood and everything seemed fine but now it is declining again.
Drs are concerned about the blood clot enlarging in her left leg.

After many tests and searching the blood loss seems to be coming from the GI tract in the pelvis area and sinking to the leg. At least that is the way I understand it. Surgery will take place soon to correct this.

Despite the setbacks where Molly cannot do her work in physical therapy nor occupational therapy, she has continued to make some strides.
Her right arm continues to build strength and range of motion while her left arm is unencumbered from the support brace she had been wearing. The left elbow will require surgery down the road in months to come as there is little range in movement due to the unexpected bone growth that occurred there following the breakage.
Molly was able to be placed in a harness that enabled her to be held in an upright position similar to walking. She cried tears of joy.

Biggest news is that Molly has been able to slightly, and I mean slightly... able to move her left thumb!!!

58 days ago
she was not able to move anything except her eyes and mouth. She has made remarkable progress.

Work on Samy Dr continues. We have now cleaned out the garage as well as the living room/dining room area of our home.
There is no furniture to speak of the the LR/DR to make way for living quarters for Molly. Living room sofa, chairs, coffee table... gone! Bakers rack, gone! The dining room table and chairs... gone! Even the old big screen TV (console style) in the living room will be gone on the next load out of town (to the dump)!

A mechanical bed and lift are being installed to take their place. This will be her living area for the next couple of months when she is able to come home.

"The project" was emptying the garage! Tons of stuff!!! This is getting ready for the builder to start turning the garage into Molly's long term digs. A special needs roll-in bath will be installed that will allow Molly proper care with greater ease.

Doors will be widened through the house as needed.

We are still praying that some money will become available so Molly will have the opportunity to have extended physical therapy and learn more life skills that she will need on her road to recovery.

We also pray that sometime in the near future Molly will have the opportunity to attend The Miami Project To Cure Paralysis. This facility at the University of Miami was founded by Nick Buoniconti and Dr Barth Green after Nick's son suffered a spinal cord injury (not too different from Molly) while playing college football.
Today the Miami Project is the world's largest and most comprehensive spinal cord research center. They are taking innovative approaches to curing paralysis.

Thank everyone for your generousity!

Wednesday, July 29, 2009

Prayer requested

I let my guard down.

As soon as the post went up titled "A Good Week", I should have know that the enemy would attack. And he did.

Molly's hemoglobin dropped to the low 7's yesterday morning. She is passing blood. Not sure why. She was to take two units of blood yesterday; first unit went well but she had a reaction to the second unit and it had to be stopped.

Today she went down to the PT area to be fitted in a new power chair that has been arranged for her (pink of course). During the fitting, she almost passed out and had to be returned to her room. Also during the "fitting", in total innocence, the wheelchair rep was saying things like "in years to come", etc... I think this also led to depression that she was experiencing the rest of the day.

She is currently taking more units of blood. I think the Drs have found the reason for the blood loss, but I'm in the dark at this moment.

Our prayer request is that the reason for bleeding will be stopped and that Molly will regain a positive attitude.