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

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...

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:

MOLLY:
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?

Prayer-
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 (Molly_Santiago@yahoo.com) 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!