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 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 (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!