A Good Month

Hello all.

October has now come and gone. Belated Happy Halloween. We have been taking Trina to the coast and it has been wonderful!  Also, we had caring friends visit (a first) and they did so awesome with Trina. Makes life so much better when you have tangible love appear.  Trina’s doctor finally found a new drug, after 8  months of trials, for sleeping better.  So, mom is now getting her 7 hours – YAY.  And, there is still screaming “at times” day and night but it is way, way better and more manageable. We are so thankful. It has been a difficult year and yet now as we head into the holidays we are experiencing some easier and more fun times.  We even had a caregiver for 3 hours one night and so we were able to attend a competition Trina’s sisters were in.  It was like a date! And, the caregiver we had now has a full time job but she said she can now and then watch Trina for us – and she is the only one so far that we found can “handle” all the difficulties. She is a can do person (Thanks Cindy!).  Other than that, it is a day at a time as always.

Blessings to all and we will write again soon.

Sandy (mom)PhotoGrid_1446933066430contact

 

GOOD Doctors and ANSWERS needed!

I have been trying to find help for over 8 months regarding Trina’s out of control behaviors from screaming for many hours in a day (sometimes up to 12) and flailing so extremely that all day and night we are trying to keep her safe.  All the docs want to do is try new meds, which may be a part of the problem.  Then a crazy neurologist, after knowing she is non-cognitive, vegetative, asked us if she could drive. WHAT?  How can we feel safe with no one to turn to?  My last writing was about us being alone in this and it is the truth.

Her current, main doc, will try to get another specialist out of the area to do a cam appt soon and hopefully we can reevaluate meds. A new med has helped her sleep, so I am thankful for that. But to have one’s body at unrest all day and night must be exhausting for Trina as well.  We just hope to find answers soon.

Mama is getting run down for the first time in almost 5 years. But, I am taking extra caution to eat better and exercise (walks) as often as possible to stay ahead of the tasks needed to allow Trina to feel happy that we are in this fight 100% for her!

Caregiving has its moments … we are human …

I encourage all of you out there to take only one day at a time and get as much good rest as possible to brave the new day with a smile.

READY, SET, GO!

Blessings and will check back in soon.ColorBrain

We are on our own…

2015-08-01 15.59.56I learned a good lesson this month.  We have waited for 5 years to see a Neurologist.  All along we were told Trina would never see a Neurologist because Medi-cal doesn’t cover that expense.  Amazing, right. She has a brain injury and so she CAN’T see a specialist for that.  So, we moved on.  Then, Trina started grinding her teeth in an extreme way. We couldn’t stop it.  I read that Botox is given to anoxic brain injury patients (in the temple) and it stops the grinding. I told her regular Doc and he sent us to a Neurologist yesterday in Redding.  WOW I thought. I should make a list of questions for him to make the best of this appt.  We went in with high expectations for some answers and maybe even a brain scan to see if there has been ANY improvement. Well, my hubby had low expectations and I am the one with high expectations to be honest.

OK – First, this Neurologist comes in – No smile, no greeting and very little, if at all, eye contact.  He starts with Why are you here.  He asks about the history of Trina’s injury.  We talk about the anorexia, some of the bad habits months before her seizures, the seizures that couldn’t be stopped – hence her brain going a long time without oxygen, her coma, being in a sub-acute for 1 year, no cognition except similar to a baby of 6 months old….all of this conversation takes place.  He then asks us IF SHE CAN DRIVE?  And he orders a CT scan where the patient has to cooperate by laying on a table on their own when Trina would have to be hospitalized and sedated for such a test.  I mean REALLY – this guy has a license.  To say I was angry does not even begin to describe what happened in that room.  A child with zero understanding of her medical condition could have done better than this guy.  I am being polite not to mention his name but I did call his office and tell him how unhappy we were and that we will not be back.

I do not like to share negative stuff, but this really got me so had to vent a little.  The moral of the story is that we will just continue to enjoy Trina daily right where she is at and realize that we are alone in this.  Because she is an anomaly – no doctors really get it.  To see her for 10 min and not listen to the parents (I even bring video taping of her other behaviors to SHOW what a 24 hour time frame looks like) is usually how it unfolds.  We will continue to use our brains to do our personal research and help her in the best way we can…that seems to be the healthiest approach.

I have to say I do wish “the system” allowed for doctors to still show they care and partner with you for health rather than having so much worry about liability and seeing so many patients that you become like cattle as you come and go.  My hope meter is down regarding seeing doctors but my hope meter is always up as I trust God and I trust us to do the right thing.

Blessings to all and write again soon.  Thanks for checking in!!

Trina’s Mom, Sandy

Summer Heat

July has been a hot one and thank God we have been able to take Trina into the pool almost daily.  We are able to exercise her in the pool as well as cool us all off.

Usually mom’s sanity comes from outdoor walks with Trina or pulling her behind my bike in the Wike, but not in this heat…

Trina had some issues this month, so we’ve had to go to the doctor and attempt new sleep meds as she and I were up for over 50 hours (she doesn’t sleep without meds and they weren’t working). She also has been extra wobley when we have her standing and either wants to only go backwards or leans and starts to fall.  This requires second to second on-hands safety methods in play, which is tiring for all.  But, knowing what a blessing it is that she can stand and has movement to keep her from curling – I will not complain about a thing!!  I just say thank you for her life and carry on.

My hubby, her “Staddio” continues to be amazing with Trina and she ADORES him. They have a super natural bond and I am so thankful for this.  I pray every day that he and I both can live long so that we can continue to care for her.

We finally get to take Trina to the Coast for a few days and this will be exciting and awesome to get out of the heat. And, we are traveling with her sister, her husband and our new grand baby, so it is an extra special trip coming up for sure.

One day at a time.  It’s great to be alive and to overcome any challenges caregiving yields as we have the opportunity of growing and learning daily. 20140326_164014

 

Time Flies

Yesterday was our 5 YEAR ANNIVERSARY – since Trina’s accident. WOW – where does the time go!

We are thankful she is alive and treasure each day, but this day is the ‘calendar day’ that changed our lives forever.

The young girl I gave birth to on 12/19/88 was no longer able to speak or understand or become what God intended as of June 3rd, 2010…

However, she knows she is loved. She has her family around her 24/7.. she loves to laugh – she is safe and secure. So LIFE is GOOD even after a tragedy. For us, it was a matter of trusting that all things are sifted through God’s hands; and with that fully embracing our life event with a happy perspective day-to-day.

Yes, so June 3rd comes once a year as a ‘marker’, but we say THANKS for LIFE and for all the blessings!

From the heart: Love your kids fully as you just never know what can change your tomorrow. Love you Trina-Bina!!

Picture 1:  Before Accident (Red and White striped dress)

Picture 2:  Day of Accident / June 3, 2010

Picture 3:  Current 2015 pic on a boat. Though she is still non-cognitive and unable to do anything for herself, she is beautiful and smiles all the time!  We pray that one day she can speak again and that she’ll have the ability to help us help her by being able to think.  We have seen many miracles and believe for more, but she remains like a little baby.  One day at a time….

Trina finally comes home

Trina before the brain injury

Trina in a coma

Ever Changing

Well, Good News to report is that Trina’s screaming is doing better.  We had a lot of specific prayer and that helped, but we are only dealing with about an hour or two a day (on and off), which is tolerable.  Our new item is that she started Grinding her teeth.  I did research and learned that they are using botox of all things to stop grinding on brain injured patients.  So, the doctor has that in process “to be approved.”  It usually takes time to get this approved, but hopefully soon we will have the grinding under control.

We have a new caregiver that is working well.  It is very difficult to find someone who “gets” HOW to interact with Trina (like playing with a baby, but having to keep her safe) and it seems that she does understand.  She is also able to go on vacation with us, which is very helpful.

Besides this, we are basically getting into our good weather routine of taking Trina on daily walks on the River Trail in her stroller and also taking her on bike rides (pulling her in the “Wike” behind my bike) as often as possible.  We also swim with her almost daily. The water calms her and is a place where we can exercise her!

We are hoping soon to utilize our Blink of An Eye Foundation to do some speaking engagements and we continue to encourage referrals to our website here or the Foundation website (BlinkofaneyeFoundation.org) as we would love to help others however we can. Whether a person is dealing with an eating disorder personally or someone they know or a parent or if you are dealing with being a caregiver and losing hope and need encouragement, please contact us.  We want to share resources and the “hopeful mindset toolbox” we have developed with you.  Life can still be joyful in the midst of and beyond tragedy.  Be encouraged 🙂

A thank you to Lexus (seen in picture below with Trina) for visiting us and especially Trina-Bina the other day.  Trina LOVES to have visitors and she can feel the love.  I always hope for more of that!

Sending thanks and blessings to all.

From The Gift of LaughterTrina’s family

 

 

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