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!

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.
Well....
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!

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 tdoyal20@msn.com requesting a file of the flier so you can print it out and take it.

Thank you for remembering Molly.

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!

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.

A Good Week

Its been a good week.

Some relatives has come down for a third trip since the accident. They pointed out something to me... every trip she has made there have been dramatic improvements in the movement of Molly's arm and neck. I suppose that we are too close to the situation and cannot see that improvements as a whole are significant!

On Wednesday Molly wanted to show me something. I held her right wrist while she lifted her hand about an inch or so! WOW! This was one of the things we were waiting for. Previously there was only movement in the arm and shoulder. The therapists told Molly that when the wrist and hand got strong enough, the fingers should start moving. Hallelujah!

The hospital team that cares for Molly has decided that they need to keep Molly until August 6th! Hallelujah! We needed the extra days.

And today... today after work I got home and checked my email and found a short one from Molly. When I got to the hospital she told me she was able to craft the email herself! A special device enables Molly to s-l-o-w-l-y type a short message. But this opens up a whole new frontier for Molly and allows her some freedom! It is not easy for her to type out the words. (I had already been looking at voice recognition software for her) She's working hard and will get it done one way or the other!

Julie and I are busy revamping the house. We need widen some doorways, move furniture, and maybe, just maybe put down a wooden floor.
We will be converting the guest bath into a chair friendly area by removing the tub, re-tiling the entire area to make a shower with no floor impediments and rearranging the sink without any underneath interference. We can only accomplish this by removing the door and adjacent wall to the bath. We'll work it out...
We are turning the living room into a bedroom for Molly. She wants us to paint it pink... oh well, OK!
Some men from the church have indicated that they will oversee all this renovation. This, I believe, is the church in action; showing love in pure form.

A Bible Fellowship member has donated a hospital bed to us. We are most thankful. We need to find a hoist/lift for getting her out of bed and into her chair and we need to find a rear car lift to carry her chair while getting her to and from out-patient therapy once we get her home. If we can find a titanium chair at an affordable price then we can wait on the car lift.
Molly will be in 3 day-a-week sessions for about a month. We are trying to find additional therapy time for her as she really wants to hit the training to reach her goals of becoming independent. This is true to her competitive nature.

Things are finally moving forward, and...

Yes, its been a good week!

Friday July 17th

Hi folks!
Been a while since I have updated you on Molly I know. The urgency to do something of a breakthrough nature and the need to complete details are conflicting and draining.

Thanks to all who continue to help in so many ways!

The garage sale that Alicia (college girl in our neighborhood) came up with is taking on its own life. One neighbor is storing "out of the neighborhood" items in her garage and it is almost full!! Others in our great neighborhood are having bake sales, cooking on the grill to sell food and others are selling water.
Our family is so thankful for the love and caring they have shown us on Molly's behalf. The money will be used wisely on her behalf.

There has been an Irrevocable Trust set up for Molly. Anyone wishing to donate may make the check out to Molly Doyal Santiago Irrevocable Trust.
Also, if you know of any corporation, foundation, or individuals that wish to participate in any way, they would be able to make the donation at a Regions Bank in that account name. The trust is held at "arms length" from the Doyal family by a Trustee and is only allowed to assist in Molly's medical needs.

There are other fund raisers that are taking place:
-In Albany, Ga, my brother's church is having a cookout where the pastor cooks donated prime cuts of meat and the plates are bought by church members. They are are also having a special offering for Molly.
-In the Tampa area, there is a fundraiser going on the 31st of July for Molly's benefit. I will be elaborating on this in a separate e-mail.

Let me tell you what the official assessment (as of this week) on Molly's condition:

Feeding: needs maximum assistance
Grooming: total care
Hygene: total care
Dress: total care
Bed mobility: max assist
Rotation (finding different position in bed): max assist
Transfer (one place to another): max assist
Locomotion in wheelchair: w/assistance

Sounds discouraging doesn't it?

Now let me tell you the GOOD NEWS!

This week Molly was able to put her hand on her nose!!! She proudly proclaimed that she was now able to scratch her nose. Can the top of her head be far away?
She was able (with the assistance of special devices) to get one spoon full of food to her mouth!!! Can total self feeding be far away?
Wow!!! Great progress!!!

Both movements were with her right arm. She is not seeing movement this week in her hand or fingers but we are looking forward to next week. Her left arm continues to improve; needs more bilateral strength.
Pain management is improving and hopefully soon she will be able to decrease the assortment of medicines she takes.

Good news is best, right?

Discharge date from Tampa General Hospital is scheduled for July 30th. Our family would desire that she be under the care of attending physicians and skilled nursing another four weeks or so but the hospital states that it is no longer able to keep her.

Molly will be going to outpatient physical therapy 3 times a week for the next month, then...
We are still looking for an acute inpatient care program. Our option now is to learn as much as we possible can on primary care skills, prepare house for her with wheelchair and other space needs, transportation methods/lift/chair skills, etc...

Those of you close by, please come to the Samy Dr charity sale on Saturday morning starting at 8pm.

More later

Thursday July 9th

Julie and I were in Molly's room last night. The usual was going on. I was logging into Molly's social sites on the notebook so she could see who was sending what and then sending greetings back.
Julie was changing dressings on her legs and generally getting her settled for the evening.

The attending physician came in and told Molly that there are some "things" she needed to know.
1. There will be a tri-port catheter system placed in her upper chest area (this we knew) on Thursday which will require her to undergo anesthesiology during the surgery

In addition to the blood clots discovered the day before last we are worried about...

2. Molly has an urinary track infection

3. She also has a lower abdominal muscle infection (how do you get that?)

4. Her left arm that has been immobilized for such a long period of time has decided to grow a bone to cover the elbow joint and they (Drs) will have to take care with that by disolving it ! That may have been the reason she had so much trouble in rehab with this arm besides the fact that it has a couple of fractures

This news was not received well by any of us in the room. We are tired of the negative reports! We want only positive things to flow around us now!

Molly understands the necessity of keeping a positive attitude and not letting herself slip into a depressed state.
Although she cried some, within a few minutes or so she told me to put the notebook back (on the table that hangs over the bed) She was determined to get her hand to the computer and work it herself! What seemed like an hour of great struggle and pure determination (really probably just 5+ minutes) she got her hand to the pad on the laptop. Although she could not maneuver the cursor (fingers don't work yet and arm doesn't always go where she tells it to) it was a great accomplishment to do just what she did. I had to tell her to quite for the evening because she was so drained of strength and concentration. I told her we would try tomorrow night and the next and the next... until she gets it!!!

I'm not sure I would be able to keep a positive attitude if I were in her shoes. Could you? Could you get up again after all the trauma she has received hit your body? I'm not sure I would. Could you keep your mind clear of negativity, when time after time and time again you hear the kind of news she has heard?

She is a fighter! She is tough!! She will prevail!!!

We are currently sending Molly's medical records to U of Miami, The Miami Project which was spurred by the Nick Buoniconti Fund. They are doing some great things there to help cure paralysis. Pray that Molly will be accepted by the sister hospital of the Miami Project, Jackson Memorial, which shares a lot of doctors that go from the advanced research to practical rehab. Then eventually into the Miami Project itself.

More later

Today is Tuesday, July 7th. Any more days run together. God really gave us a good thing when He broke down our week into 7 days. Gave us structure and a sense of time.

All this, if I don't remind myself, is lost to a endless incoming tide of urgency, things to be done, or one crisis after another coming in rising and falling rhythms.
But the waves are unpredictable and keep you off balance more than anything.

Today we were hit with a number of blood clots, at least one being major, residing in the left leg. The physicians immediately gave Molly shots to cure the problems and will continue to give her shots as well as tablets. This has interrupted Molly's schedule of therapy and sent her into a depressed state somewhat. Tonight she is better.

Discharge from the hospital here has been set on July 23rd. There is no way short of an outright miracle she will be ready to leave. A team of care givers set the date. We'll have to talk to them!!!

We are exploring U of Miami as an alternative for extended care. They have advanced studies and programs in paralysis.
The U of Alabama also has a good program I hear, and we will be investigating that also.

More later.

Its been such a busy week; Julie and I are trying to work some and at the same time come to the rehab center and spend time every evening. We also are trying to catch the educational classes here during the day at the hospital so we can understand all that is happening with Molly. This week we had a class on spinal cord injuries and the ways most people are affected by the severe trauma in their particular area. We also sat through therapy and learned some techniques of stretching and movements for Molly's limbs. And... we were given a short tutorial on how to operate Moo's new ride.

"The Ride" as seen in the picture is operated with a joy stick. (Molly can't operate it this week, so we'll try for next week.) This buggy will travel up to 10 mph, will recline to near horizontal, has lumbar support as well as auto seat and feet adjustments. There are other adjustments that can be made and we will all learn how to make them.

Molly swears that the rehab people enjoy pain! She is convinced they smile and are really motivated when a patient cries out in pain!!! After a therapy session she is totally exhausted. (see pics)

Movement in Molly's right arm is SLOWLY getting better. There is a little more movement this week than last. No movement in her fingers.

Left arm can be lifted A LITTLE!!! There is a brace on the left arm now which has a small hydraulic cylinder that aids in bending the arm. Bionic Molly! It can be seen in photos posted yesterday.

In addition to the arms... some tingling sensation has moved downward from the neck to the chest area. Slight, but it is there.

There is nothing going on in the legs right now EXCEPT... Julie was doing some things for Molly last night on her bed and as she was talking, she was saying that God would breathe life back into her legs. As she said this Julie blew air on Molly's feet. Molly, who can't see at that angel said, "Mom, what did you do?"
We hope it truly was felt. This is our #1 prayer right now that Moll's legs will begin to wake up!!! We thank God for the healing that He has begun to do in Molly and ask for full and complete healing.

Another concern is for the hospital to allow Molly to stay longer in rehab. Because of limited payments her insurance will make, the hospital cannot afford to keep her longer than July. We are still praying for a bed at Shepard's Spinal Center in Atlanta.

The pain that Molly feels is in her neck and shoulders. Its been a little over 2 weeks since they replaced the vertebrae and fused C4,5,6,7. It is very painful for her to move; sitting in the chair is a very laborious trial. She cannot sit up for very long without the pain becoming too much. At the same time... yet another doctor came in and said that Molly needed to start reducing the pain medicine.

Tomorrow is the 4th of July. We plan to take Molly outside at dark-thirty to see the firework display that will be displayed on Harbor Island, next to Davis Island this hospital is on. (See the pic of downtown and the water from her window!)

Everyone have a great weekend and catch updates next week!

God Bless you and your family!!!

Molly was moved from St Joseph's to Tampa General Rehab Center on Friday afternoon.

Her medical condition had stabilized and the Dr's wanted to get her to rehab asap to start this new phase. The rehab center sits on the mouth of the Hillsborough River so Molly has a view of downtown as well as the river. It is a view you would pay extra for if you were getting a hotel room!

Molly is apprehensive of the rehab. Everyone has told her how much it will hurt. So far, they have tried to sit her up in a wheel chair (but couldn't complete that assignment)have shown her some devices that will help her become a little more independent when she is able to lift her arms with some authority. In general she was introduced to the concept of rehabilitation.
Sat afternoon she went to her first session of rehab. She cried and cried but told the therapist to "do what has to be done"! We are proud of our trooper!!!

Praise God! The great news is that Molly is again able to move her right arm several inches off the pillow it rests on and move them (slowly and surely) to one side. The left arm is not cooperating yet since it was broken in two places. About a week ago Molly had been able to move her right arm some, but lost that ability until about 12+ hours ago.

Molly's aunt(Hunnypie)came down from Georgia and sat with her Friday and Saturday. It put Molly in a great mood! We are all hoping that the bad news will stop for awhile; everyone needs a rest and a dose of good news.

Thanks again for the letters, cards, and phone calls in support of our family! They are appreciated more than you can imagine.

June 24, 2009

I received a call from a man today, COO of a Fortune 500 company. We have a mutual friend; he stated that he was calling me as a father to a father. The obligatory "if there is anything I can do, call me" was not there; there was only heart felt expressions of care for my family.

I was touched again when a man and wife brought a meal to my family today. It was a lovely home cooked meal (really, really good!!!) and certainly appreciated.
Another friend came by, several called, more e-mailed. One initiated an action within an organization and prayer chains. My brother called from Georgia, his church wants to do something specific which I welcomed also. Another friend and previous neighbor helped me put this blog together.

My point is this... MY FAMILY COULD NOT MAKE IT WITHOUT YOU! FROM THE BOTTOM OF OUR HEARTS I thank you, our support. This will be a marathon of many months, perhaps years, and we appreciate you.

Although Molly is not moving her limbs today, she feels better. There is a pain she can not endure for long without her meds, but she ate a meal for the first time tonight. Although we would not even call it a snack, it was a big step in my thinking. It was an attitude shift, a cognizance that it is time to start to work on the marathon.

Jun 23, 2009

Tuesday...

Julie and I are playing tag to give Molly maximum "sitting with" coverage and comfort here at the hospital. Julie relieved me at 5 am and I got back here at 5pm. We'll determine the method we need to use as we go.

Molly has had a rough couple of days. She just had the blas Sun & Mon and then Mon night while I was here her temp spiked to 103+. (Currently almost normal!) Had to be packed in ice again.

There are several goals to be met before Molly can be released to rehab.

One of the goals for her medical stability is to keep her temp normal. Every couple of days her temp has gone through the roof. They are still looking for the reason. Another goal is to get her breathing without the aide of the respirator; she had to use it most of the night and into today. Yet another objective is for all of Molly's organs to function properly; she had not had a bm for a number of days and the Dr said this morning that it was essential that a movement take place.
Praise God it happened this afternoon after much prayer was offered.
Now friends.... I did not think that I would be praying for such an act, but the insistence of the Dr that it had to take place for the medical well being of Molly;and Julie and I prayed in unison, bound it on earth and heaven...I asked many of you to pray and you did.... I now see God's humor. I also see that He is in charge and was reminding us that He will answer prayer when we ask... even prayers that we would not normally ask for!

Molly wants to thank all for the prayers and outpouring of goodwill everyone has shown for her and our family

June 19, 2009

Friday...

Molly was very perky today for the most part. There are times that she starts to cry and start feeling depressed. We are trying to keep her out of that.
She said her arms feel like lead today. We worked physical therapy (simple stuff) about three or four times today. When I bend her foot (toes toward her shin) I get a muscle reaction. Don't know what it means but it feels good.
I made Molly exercise more today with her right arm. She is pretty good at moving it towards her but can't get much of an outward movement. We're so proud of her working hard.

Her breathing continues to improve. She is leaving the oxygen off more and more. The pulmonary (sp?) doctor says she is making great progress.

Her temp is now down to a steady 101.3. So much better than the 104.7 couple of nights ago.

Dr Kumar, who was one of the neurologist in surgery, came by to talk to Molly today. Molly has decided that her definition of total recovery is different from the good Dr.
He stated that her brain is good, her lungs are making a full recovery and other organs are in good shape. But he still does not hold out much for her arms and legs working well in the future. Molly says she wants to be walking and holding Chace again. She further stated that she did not have to run that marathon she was thinking about nor being a sprint champion. There are other important things in life.

Nurse says that with a day or more improvement, she will be taken out of ICU.

June 10, 2009 A Journey Begins for Molly and her family.

This blog begins logging the steps of a new journey for Molly and her family. The entries will be posted by Tom (Dad).

Newspaper Notice
Wednesday, 10 Jun 2009, NORTH TAMPA - Troopers say a woman and a baby were injured when a pickup truck rolled over on I-275 early this morning.
The truck was heading north on the interstate when it left the road, and flipped several times near the Bearss Avenue exit in North Tampa, according to the Florida Highway Patrol.
The driver was flown to St. Joseph's in Tampa. Molly Santiago, 25, is listed in serious condition.
The 4-month-old baby, who was still strapped into a car seat, was taken to the hospital with minor injuries, troopers said.

Dad begins his notes....

Molly fractured three vertebrae 2,5,6 the spinal cord was severely damaged. Right now she has no movement of anything below the neck. Only a small tingling sensation in the right hand occasionally. There was a small twitch in her fingers... involuntary? All the Drs we have had conferences with have given no hope of recovery; 3-6 months at the hospital and rehab then I was advised to prepare a place in my home for long term care. In addition, she has a collapsed lung, left shoulder broken as well as left elbow. Chace, her 4 month old received some bruises and scrapes and is still under observation, but Dr says he is fine, he's hungry. Julie and I do not receive this... science has presented the facts and their limitations.
Now is the time for God to show up and do his miracles! Molly has the will ... it is the perfect opportunity to praise God and I am starting right now