Giving Thanks

We just recently completed getting our home handicapped to where Trina’s wheelchair can now get anywhere inside and outside of our home.  We also had her stroller, wheelchair and lapboard repaired so that they are stronger and safer.  Since Trina “flails” a lot and she is strong, these all were broken and needed to be properly repaired.  Life is so much easier with the right tools 🙂

Also, we will be able to start Physical Therapy again out of Oroville Hospital.  They have us on a waiting list but the Order was called in and we are excited to learn more things that we can do to keep her legs from atrophying and her hands from curling (typical things that occur with brain damage).  So far we have been blessed that the things we have done from day one to stop that progression have helped.  But, as time passes we can tell that her extremities are losing muscle, sadly.  Our goal is to continue to fight this.   Unfortunately we have to drive 3 hours round trip to the only place that approved doing physical therapy for her (they usually want one to be able to obey a command before authorizing working with a patient).  The Oroville group made an exception for Trina.  YAY.  This is our 2nd time being able to work with them!

Trina is now an Auntie, too.  Her sister Carlyna just had a baby (Vada) 2 months ago and though we can’t get the baby too close to Trina (she could flail and hurt her) – we keep explaining to her that she is an Auntie!

Trina is still having issues with “screaming – yelling – while laughing” and it makes it difficult to have her in public and has stopped our travel plans.  Our goal in 2015 is that this will get better and we can get on the road again and visit friends and family.  Already in the last 2 weeks it has gotten a little better.  The doctor was adding meds and that made it worse, then we took one med away and that seemed to help a little.  One day at a time, but hoping for a little adventure this year as it is great stimulus for Trina and good for us to get out as well.

Thanks for all of the prayers and support.  Today a woman asked for my help with her 14 year old, who is bulimic and I am hoping we can make a difference.  Continue to share our website with anyone struggling with an eating disorder as we do hope to help anyone we can.

Blessings from Trina’s fam20150125_131807

Catching Up due to Technical Difficulties Jan-March 2015!

A belated Happy New Year to all.  And, Thank you everyone for your patience!! Our site was not working on our end from Dec until today – March 12, 2015.  It was my fault and I had been posting on an old WordPress and so my daughter Kacee finally fixed it for me.  I did post every month but it was not “seen” or “saved.”  My husband says we are “tech nincompoops” (LOL).  Guess it’s true!

2015 has been amazing and challenging.  So many continued blessings with having our home handicapped for Trina and yet challenges with the medical “system” and finding help for Trina’s out of control behaviors.  She cannot help herself and the screaming and flailing is intense.  I think we have had 8 doctor appts in 4 months regarding this.  After trying many meds that did not work – either a med made it worse or knocked her out.  We do NOT want Trina staring into space unable to move just to have her quiet, so drugs are out.  In fact now we are trying taking her OFF of some of her drugs to see if this helps.  It’s only been a week of this and already we believe it is a little better.

Also, Trina has broken her wheelchair, her stroller and the rails on her hospital bed from kicking (and she is strong)…so finally we found a great repair guy in Anderson that is welding her strong, new help for her legs so that she is safe and secure.  It got to the point where I could not even take her for a walk or in public in her wheelchair or stroller as she’d kick her legs loose and it became dangerous for all.  SOON we will be able to get back to healthy living with these items repaired and restored to being better for her. YAY!  It takes time to find the right resolve but there is always hope and we just have to keep up the research.

We understand how confusing it is for those who see Trina on the website or in a brief and quick video (or even on the Dr. Phil show) as she “looks” almost normal and not non-cognitive or vegetative.  However, if one reads the medical definition – it is not what you would think because the brain stem can be OK and that allows for emotions to be present (without cognition) and her body is moving, etc. BUT she is truly detached from herself and is not aware of her personhood.  So, I say to people you have to be here to see her for a longer period of time to really “get” her condition.  See below my “partial” definition of vegetative:

“The vegetative state is a chronic condition that preserves the ability to maintain BP, respiration, and cardiac function, but not cognitive function. Hypothalamic and medullary brain stem functions remain intact to support cardiorespiratory and autonomic functions and are sufficient for survival if medical and nursing care is adequate. The cortex is severely damaged (eliminating cognitive function), but the reticular activating system (RAS) remains functional (making wakefulness possible). Midbrain or pontine reflexes may or may not be present. Patients have no awareness of self and interact with the environment only via reflexes. Seizure activity may be present but not be clinically evident.”

You can google the definition and read the whole thing but it is a very close description of where Trina is at today.  Her movements are reflexive and not deliberate.  She does not respond to her name or to any of her care needs except that they must be done for her 100% of the time.  There is not one thing she can do for herself or to help us.  Even water on her body in the shower emits a reflexive reaction as she doesn’t know what is happening with the basics of her care.  Words of instruction do not help either – her reflexes happen in all situations and are disconnected to cognition.  That is why we have difficulty finding caregivers as she is strong and her extremities are kicking and flailing as a reaction to her environment and you can get hurt.  She is 100% innocent in her behavior as without cognition there is nothing she can do to change any of this.

I have had several people make comments about how she looks and what it looks like she can do or not do to question this vegetative definition.  Believe me – we know.  And, we want her to advance and not have this to define her, but we are realistic and though we will never give up hope – we will work with her where she is at … and continually research any means of making the quality of life better.  Hope all this helps those of you who made inquiries.

We are looking forward to a great year.  Please continue to keep in touch.  God Bless…20150125_131807

 

 

Looking for Ideas

Today was one of those days where I got a little down as I thought about our reality that the medical field simply is not in it to win it for Trina. She is on Medi-cal and though we are grateful for the basics it supplies, like meds and diapers and feeding tube, etc. – we can’t find a doctor or someone in the medical field to direct us to real help.

For instance, we have never had a brain scan for Trina. Wouldn’t it be great to SEE exactly what parts of her brain are completely damaged and whether there is an area to work with or not?  They’ve told us her brain stem is OK but that the cognitive features were basically destroyed – that she is “blank.”  And, obviously we are up close and personal and real about where she is at (she is like a baby) but to not have interaction to tell us you are ‘here’ with direction, we are left to ourselves and our imagination and hope for her.  Maybe in the big picture that will be the saving grace?  Who knows.

I say all this to say IF ANYONE KNOWS of a caring Neurologist who might be willing to just talk to us (Medi-cal does NOT allow a brain damaged person to see a neurologist – they don’t cover it and the neurologists can’t take you if you are on Medi-cal, so it’s kind of a trap) that would be a great help.

I am going to try to gather what medical reports we can from her initial injury back in 2010 and have that on hand.

They say it is WHO YOU KNOW that makes things happen.  Well, we don’t know the right people and we live in Redding, Ca so that hinders, too… So, that is why we are asking the general public who might check in on Trina’s site to see who you might know.  We are willing to travel for this and bring her to the right person or facility for testing.

Thank you in advance for taking the time to think about it.

Blessings to all and may this Christmas season be a special time for you and your family.008

November update 2014

Happy Belated Thanksgiving to all.  We hope your time with family was great, just as ours was.

Update on Trina:

We did learn finally after 3 doctors appointments that Trina had an infection (caused by her feeding tube being switched out with vasoline as the lubricant rather than the regular gel used).  Thank God we were able to return to Dr. Hofkin’s office for the new changing of her feeding tube as they explained what happened and are helping us fix it.  A private nurse we hired obviously was not aware that this could cause an infection.  We were told by Trina’s old doctor that we couldn’t use Dr. Hofkin anymore, so resorted to using a private nurse.  Then, she got a new doctor who said of course we can still use Dr. Hofkin.  WOW – the medical system.  But, rather than complain – we are now full circle back into a system that works for us and Trina.

The next November issue was Trina’s hospital bed motor just died.  So, we are awaiting approval from Medi-cal to get the motor or the bed exchanged.  We just hope it comes expeditiously.

All in all, though stuff happens in life (LOL), there is always more to celebrate and be thankful for rather than complain about.  We are getting closer with my brother’s family in Walnut Creek as well as my sister in Santa Cruz – seeing her more these days than in the past.  Our grandkids are no longer afraid of Trina and so they are playing with her.   And, another grandchild is on the way!   We are surrounded by family and that makes this caregiving life doable.

Trina is so happy to have visitors too.  I will announce again…Any time you want to visit, just call and come over.

And though it’s been super hard to care for her lately (she seriously is as strong as a UFC fighter with her kicking and flailing), her spirit is so sweet and she is so helpless that one just allows unconditional love to kick in and all is good.

We are REALLY needing a handicap van.  We are looking for either a USED Ford Econoline E-150 with side wheelchair lift with TV and VCR (usually in the 1990 year models) or a GMC 1500 with same features (called a Mark 111).  They are hard to find, so please please if you know of someone selling one of these, call us or email us.

Well, here we go into December.  Wishing you all blessings and a very Merry Christmas.

Sandy

 

 

October update 2014

We’ve had people reach out to us this month, saying thanks because Trina’s story helped them with their “wake up” call regarding their struggle with anorexia … one lady from the UK and another from South Africa and a few others close by. Thank you ladies for reaching out as it really feels good to be able to stop anorexia from taking over lives.

Trina’s had a tough month.  Of course she is still laughing and smiling, but she just had an off month with not feeling so great.  I think a little reaction to the Flu shot and a reaction to her feeding tube being changed out.  But, still we are blessed in that she really never gets “sick.”  And, we are coming up on 4 years of caring for her at home and we have never had a bed sore either.  Thank you God!

We had some old friends visit from OakHurst (previously from Santa Cruz) and we played Trina’s song for them and I ended up feeling emotional just hearing her voice.  Most of the time I am strong as I do believe we all have to embrace all paths of our lives – but there are weak days when I just have to have a melt down and cry!  I miss my girl.  And, I am thankful she is alive and that I have other daughters that are healthy, too, but let’s face it – life is different forever and I think it’s only normal to feel what I am feeling.

A dear friend of ours who also has a son with brain damage and she and her husband were caring for him – well, her husband suddenly passed away and she is alone now to care for her son.  Please send your prayers her way. Her name is Sherri.

I meant to post this ON the 31st … sorry.  Here we go into November.   Blessings to all.Happy New Year

 

 

Thank You Party

20140326_164014
… The Beauty and the Miracle of the Rainbow …

…  THANK YOU …. THANK YOU … !

We had the Thank You Party for the Trina Project on 8/28.  It was a good turn out and great to see everyone who had helped on the project.  Many businesses could not come but for those that came, it was wonderful to give the tour of the finished results.

Most of my posts over the last 7 or 8 months have surrounded this project.  Now that it is over, I would like to address another mission on our hearts for Trina.

Trina is on Medi-cal.  There are no neurologists in Northern Ca that take Medi-cal (or ‘sedation dentists’).  We had a couple of leads in recent weeks,  but I followed those up only to find out that because her condition started after age 18, she is not eligible for services, no exceptions.

Trina is on Medi-cal.  There are no neurologists in Northern Ca that take Medi-cal (or ‘sedation dentists’).  We had a couple of leads in recent weeks, but I followed those up only to find out that because her condition started after age 18, she is not eligible for services, no exceptions.

So, I wrote to a neurologist in Sacramento asking for help to direct us to some resources and will await his response.  In the interim – I spoke with a friend whose daughter had a Grand Mal Seizure.  They happened to have a friend that is a neurologist, who was headed to a convention of neurologists and he said he’d bring her situation to the group so that the family would have the best advice on what next step to take.  Unfortunately often times it is who your know or who you are connected to for help.  We simply do not know anyone in this specialty and so ask that if any of you have a neurologist friend that is willing to speak with us or allow me to email them to ask questions, it would be greatly appreciated.

Lastly, if anyone knows a caregiver struggling with the day-to-day issues of caring for their loved one as well as managing their own life and joy … please feel free to give out our contact information as we feel it is our duty to share what we learn with others.  Especially if you know someone that had a tragedy recently occur.  The sooner we are able to help, the better.  That is why we formed the Blink of An Eye Foundation is to help others.  Not only with anorexia, but any tragedy that alters your life forever.  It makes a difference when you do not feel alone.

Blessings and thank you for checking in.

Sandy

 

 

 

Clarification

Safety is Number One!I just spoke with a friend who helped with The Trina Project.   He congratulated me that Trina was now walking and wandering around “all on her own.”  I feel it is important that I clarify this issue as her condition is already misunderstood.

Of course, we want to give praise for the fact that she can walk with human assistance.  And, yes, it used to be that one had to hold her 100% of the time.  And now, depending on how her gait is – she can take steps on her own but she must have a person close by to keep her safe because the cognition is still like a baby. In addition, her vision is also poor. She cannot see anything below her waist, so lower tables and items on the floor are a hazard.

The bottom line is that she cannot “negotiate” walking on her own nor comprehend uneven terrain, so must have a person to do the thinking and guiding for her.  As an example:  Even when she is standing right next to you and wants to turn around – oftentimes she crosses her feet and starts to fall and we must catch her.  Without cognition in place walking alone is impossible and unsafe.  Supervision is 24/7.

A massage therapist friend recently told us her muscles are deteriorating rapidly, so we are doing all we can to build her back up so that we do not lose this miraculous ability as it keeps her from atrophy.

I am glad my friend said something as her pictures and videos are often misinterpreted.  It is our greatest desire for her cognition to return, but we are not there yet.

Ironically – new issues have emerged making Trina’s care very difficult.  She has starting making a screaming-type sound (while smiling? – refer to previous post), so there is always something to work on and hope for with a severe brain injury.

Therefore, please keep up your prayers for us, for her.  We thank God for any and all progress and continue to pray for more miracles as things change daily.

Thanks for reading our posts 🙂

Sandy, aka: Mom

The Trina Project THANK YOU PARTY

20140315_155628We have sent invitations, VM’s, Facebook messages/emails to those who have helped with The Trina Project.

However, just in case one of you didn’t get it or helped and we didn’t have your contact information … then here are the details:

WHEN: THIS THURSDAY, AUG. 28th. 4 pm – 7 pm.

WHY:   To allow everyone to see the finished project and enjoy a meal.

Stop by any time between 4 and 7 pm on Thursday – whether it be on your way home from work or just to make a quick trip to see Trina’s new space – come on over.

This is our humble means of saying Thank You.  Each and every one of you has been such a blessing to us.  Trina’s new room, bathroom and medical closet have changed our life and improved her care environment so much – we are forever thankful and appreciative.

GOD BLESS, Sandy, Steve and Trina

 

Summer’s End

July came and went so fast.  However, we obtained the Final on The Trina Project and the patio was poured.  It is all so beautiful.

We are looking towards the end of August for the Thank You party.  The plans were delayed as Trina’s grandpa just passed away at the beginning of August. He was 84 and suffering, so it is good that he is in a better place.  We had hoped he could have come for a visit, but it didn’t happen.  He is with grandma now in Heaven.  We are back on track now to determining how and when to have this Thank You event.  The back yard is still a little hazardous so we want it to be safe.  Worst case scenario we run into Sept if time is needed for better planning, but it will happen and soon.  It is important to say thank you formally to so many good hearted people in our town!  You are all amazing.

Trina is doing good but we are working on her meds and seeing the Dr. and having an EEG, etc. to determine why she has increased yelling.  She is a happy screamer – but we want to be sure that everything is OK physically and must be sure there is no more seizure activity with this behavior change.  She is still awesome and smiley though.  I do hope more people can feel OK about visiting her.  Yes, it’s tough if you knew her before.  I get that.  But she will touch your heart and so fear not and come by.

Trina’s two older sisters live in Redding now and that is an incredible blessing for her.  Family is so important.  Familiar faces provide that safe and secure feeling that is conducive to healing.

My apologies for being so busy that I have not been writing very often.  Soon I will post more pics and try to write once a week blogs that are shorter and keep everyone better updated.

Love to all,

Trina’s family

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Getting to the Final Stages …

Yes, it’s already June and we are almost therRoof of Trina's additione! We did not pass the final – about 10 items to
correct, mostly small.  And, though we are grateful for all of the wonderful help given to bless Trina {and us} with this amazing space – we have been going it alone on the finish work … and wow does that take time and patience.  But, we simply chew away at it each day.

This picture shows the finished addition with the roof on.  Thanks again to Sunrise Roofing!

Please contact us if you would like his number – he is a true professional with a big heart too.

Steve and I have learned to paint, trim, caulk, cut wood, move dirt and clean up for the detailed finishing work.  We like it … just not the 100 degree weather to do it in.

We just recently started using the beautiful handicapped shower and it is truly a god-sent blessing for Trina and for us.  Everyone that sees it cannot believe how perfect the tile work is (done by Charlie Stevenson).  I cannot even boast enough about him.  Anyone needing ANY tile work – please contact me for his number.  It is more than we could have ever even dreamed of.

This has been a tough time period for Trina due to the lack of “routine” during construction, but now we are making sure a routine is back into place and already she seems to have more peace.  She’s always smiley, but we went through a very “loud sound making” phase and the more the routine is in place, the more balanced she becomes.  The brain needs stimulus but a lot of rest is needed too.

Again, we love and appreciate every hand that has helped us build this wonderful addition for our girl. We truly are blessed.  This special space for Trina allows us a means of caring for her for the rest of our lives in a way where it is the most optimum environment possible. This contributes to our health too as caregivers!

Once we have the final and outside handicapped ramp area done (maybe within a month) – we will be having our THANK YOU BBQ for all that helped.