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Better and better

Well, for many months I have written about a lot of trials with Trina’s health. Now I have a lot of praise reports:

1) Trina’s infection is GONE. YAY.
2) Steve, Trina’s step-dad adopted her (Katrina Leigh Harp).
3) I also changed my name so that we are all just The HARPS :) I had kept my maiden name for many years and it was time to simplify.
4) It’s been a beautiful start of Spring with a lot of sunshine, so we’ve started again on our daily walks on the River Trail and Bike rides too. Love it.
5) We still go to the coast like once a month and can’t wait to take Trina to the beach again soon.
6) I have one grand baby, now 15 months old, with another on the way from my other daughter. SO, Trina is an Auntie, soon to be again. Vada is amazed by Auntie Trina…Like why is she an adult and yet I am bigger than her and can do more than her? In a few years she will “get it” more. For now, it is cute and endearing to watch. This makes for a very busy household at Nana’s house. Thank God I have a lot of natural energy to handle it all. We are already ready for the next grand baby. Trina is surrounded with more family – yay.

So many blessings. So much love. So much to be thankful for. When I look at Trina’s room that so many helped with and even the other blessings that came through my parents that enabled us to handicap our home and add a therapy pool with ADA lift – I cannot look far without feeling so humbled by it all. For those that helped us in our time of need – you are forever in our hearts and to my parents in Heaven – hope you are smiling for all that you blessed us with.

One day at a time. Press through the tough stuff and yet embrace it, make your lemonade, and then give thanks daily for all the love :)20151123_145156

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Ups and Downs

Wow – another month is rolling by. And, though it’s been a rough month (which many have seen posted on Facebook)…with Trina’s tube being infected, to us having colds, and Trina’s overall balance, flailing and screaming all being consistent throughout the day and night.  Yet, a New Day always comes and things are getting better. Especially when the sunshine comes – we get out on the bike and life is good.

Thanks to everyone for the prayers and uplifting comments on FB as well as phone calls I received to check in and cheer me up. Every single comment and call did just that. And, Trina’s infection is literally 95% GONE. YAY.

We are still being challenged every day but that is a good thing in life. Thanks for the previous trials that we’ve learned from and may the journey remain full of hope.

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Here we go 2016!

It’s hard to believe we are in a New Year already.  I shared a few transparent emotions as the year was closing, but we always stand back up, so yay to 2016 starting.

Good news to report. We obtained a med specialist out of Sacramento (TeleCam Doctor) in November and he started Trina on a new regiment of meds to help her out of control screaming spells. We are not 100% out of the woods with this but it is at least 80% better.

And, we still are blessed that Trina can stand as we assist her as she take steps, but her balance remains out of whack, so steps are minimal these days. We do exercise her other ways as part of her therapy routine done in bed and/or in her chair in the living room. I sure do miss the days when I could walk behind her in a tandem manner with surety that we were both safe. People thought it looked silly as I would go around our block outside with me fully wrapped behind her. However, with her loss of balance, that no longer works and is no longer safe. I keep “trying” for as soon as she can we will again!

I believe all people caring for loved ones with brain damage would agree that it is UP and DOWN and UP and DOWN and the one thing you can count on is CHANGE. We have to respond positively to it all as the alternative way of living I don’t even want to consider.

Holidays were awesome as Trina got to see a total of 28 people, family and friends. We even took her to Six Flags briefly yet had to use a caregiver to help watch her in a warm room!  It makes my heart sing when she gets to see family and feel a part of everything. Winter is tough since we can’t get outside too much, but we still try to make each day fun and with quality in it for her (and for us).

Thanks again to those who check in occasionally and who show that they care. I do not want Trina to be forgotten. One of my most favorite things about Trina is that she has thousands of faces to share – with big smiles (as shown below). I am SO thankful for this as it brightens every day.

Blessings to you all. Check in again soon,

Sincerely, Trina’s mom Sandy

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Day by Day

Treasure each day for what it has in it.

For the last few months, I have found myself “feeling” the weight of Trina declining – mostly since we’ve had the freedom in the past of taking her anywhere and seeing just peace on her. These last months have involved a lot of disappointment surrounding doctor appointments as no one has a suggestion except to add more meds. So today I made a decision to embrace once again this new level with a new renewed attitude and make the best of it. I cannot afford to let the difficulties tear me down emotionally as no one wins then. Trina deserves better and so do I.

The picture herein is of us recently taking her to the coast. We have new levels of having to help her not flail out of control when outdoors (the stimulus is affecting her differently recently) but overall I am glad we keep trying no matter what. Quality of Life matters. I will never give up.

Being and staying HAPPY in this life often takes work. I was actually sinking a bit without realizing it over these last months and by the grace of God my spirit hit a place where I had to choose again to stand tall, dust all this icky stuff off, and regain the attitude that is win-win for all. Without God in my life I can easily see this type of situation smashing me. So, thanks God again for catching me.

Blessings are always visible in the storm but we have to choose to see them. My prayer is that as I age I can still remain the best caregiver and advocate I can be…not only to my disabled daughter but to the rest of my family.

This post is written by Trina’s mom and about my own feelings. Yet I must clarify that my posts are not just about me – this is a family endeavor. My husband is amazing and he loves Trina very much as do her sisters. Everyone is affected differently and could write a blog about their feelings, too, but for today – this is mom sharing her stuff.

 

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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

 

ColorBrain

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

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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

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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

 

Trina in a coma

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

The Gift of Laughter

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