Thank you everyone for your patience with my inconsistent blogging. Not intentional. We are still buried in doctor appts, but some good news is that we did purchase a handicapped van. Ironically, it took finding a deal in another state online to get the best price. It will be here in one week and we are SO EXCITED as it will be a life changer for us.
Trina is still having seizures daily. We are hoping and praying that her doctor at UCSF will be able to turn this around. He’s been treating her for 9 months and well, it is just taking time and experimenting with different dosages of medicine.
No matter what – we are full of faith (though it is difficult to witness your loved one having seizures every day).
We continue to make home the happiest place for us all. We continue to take one day at a time.
Trina’s staddio (adopted dad) is doing better health wise with respect to his liver (lost 41 lbs). His neck is still a mess from the accident, too, and his pain is daily but again all we can do is embrace each day and make the best of it, being thankful for all that we have to be thankful for. We are all alive and can still laugh, hug and smile with one another. We have also had more visitors in the last couple of months and that has made life extra special. We went many years without any visitors, so it is a refreshing change. More are coming too in Oct!
Blessings to all. We will try to do better at our blogging 🙂
For those of you who have checked in over the last year – it has been hit and miss for staying in touch. It’s been a hectic 12 months with doctor appts and this website was acting up, so blogs got behind!
We really need prayers for Trina (and us). The car accident last year has caused her many issues. Not only the fact that after no seizures for close to 7 years – they began right after the accident DAILY. We’ve had 1 to 7 a day for 9 months with many doctor visits trying to get them to stop, without success yet. In addition, the little balance she had is gone which makes her care double the work. It is very difficult to keep her held up to do her hair, get her dressed, etc. as she falls over now. Plus, we are limited as to what we can do and where we can go because of the seizures (her screaming too) and the added challenges without any balance to work with.
Of course we still have joy and peace and make the best of every day – that is how we roll (LOL), but life has more challenge to it and we had to adjust our days accordingly. We are home most of the time, but do have to travel to SF at least every 4 months for check ups and med changes to address the seizures. The balance cannot be recovered unless a literal miracle comes.
Trina’s “Staddio” – my husband Steve that is now dad because he adopted her has had health issues too (both from the car accident and now his liver), so most of our time is making the best health for all. I, too, struggled with issues from the car accident but the emotional strain of all 3 of us (as I handle all of the details) was stressing me out and I had an abuse occur during treatment that just forced me out of my own case. Justice doesn’t always prevail, but my focus had to be on Steve and Trina, so mom is healing at home with some inner peace spiritual work! One day at a time.
Last prayer request. We need a handicapped van so badly and they are so expensive. If anyone hears of one for sale near Redding, CA that is reasonable in price and in good condition, please let us know. With Trina’s new limitations (and ours) – we must be able to use an automatic lift where her wheelchair goes right into the car and we GO. Right now we have to tear down her entire wheelchair and put it back together each time we go on an errand. Time consuming and physical! Also in winter we all get very wet. Any ideas welcomed.
Hope all of you are doing well. We all have issues and so sorry to bore you with ours. A special thanks to those to have always shown us you care and check in.
It’s been very difficult, obviously, to catch up on Trina’s site. Please forgive me – just so much going on. I left off describing that the end of 2016 was tough due to a car accident back in July. As a result, Trina has been suffering with seizures daily – and still is. Steve and I both also have been in physical therapy and chiropractic / massage therapies ever since. This has made our daily routine and care for Trina more complicated for us, so days are full. However, we remain joyful and hopeful that we will get back to where we left off…one day at a time.
Trina continues to amaze us with her beautiful smiles and amazing personality for someone who is in her condition. We’ve had to stay at the house most of the time (except for Dr appts) and so no special adventures that we used to do, but we have found a way to make that work – just focusing on a routine that is healthy for all.
We tried to get Trina an adult car seat but it was next to impossible to get her in the car into it, so sadly that has to be returned. One day we hope to have a handicapped van where we can put her in just by electronically lifting the whole wheelchair in and go! If any of you ever find a great deal on one – please let us know.
So not much excitement or news to share, but wanted to connect somehow for those of you who do check in periodically.
Well, Trina’s mom – me – is doing better with the stomach issues. My back is still in pain from the car accident (and my husband’s neck is a mess from the accident, too) , but Trina had her MRI completed with good and bad news. The good news is that her back and neck seem to be OK, but with the brain damage the MRI of the brain was a little scary. And, the scariest thing is that ever since the car accident she has been having small seizures every day. Prior to that we’d have maybe one or two a year – now every day! So, more doctor appts to see if that is the result of the jolt in the accident or ??? But, it needs to be understood and treated soon. We are all in Physical Therapy, Chiropractic, and massage weekly and hopefully this will expedite us all getting back to normal feeling good. Of course for Trina we just want the seizures to stop.
My husband Steve and I were discussing Trina and our time with her and our care for her the other night and even after 5 1/2 years of caring for her, we both feel blessed. No matter how hard it is at times, she exudes pure innocence, which is so awesome to be able to witness and experience. Her smiles also just cut through to your heart. As a mom, I miss the old Trina so much, but for whatever reason that girl had internal demons she couldn’t fight and now she is free from all of that. Almost all day and night we get smiles. Yes, some other sounds and screaming and those are the tough times but overall the faces are so cute and innocent that it is all JOY.
Blessings to all of you and again, thanks for checking in.
Well, thank goodness we had the great part of the summer to enjoy as the testing came just over the last 6 weeks. This time not from issues with Trina, but with mom. I am supposed to be the sturdy one caring for others not the patient.
So, the great outcome is that I dodged a bullet – stomach cancer. And, I learned that I need to change my diet. My prayer to God is always please let me live a long time and be strong and healthy so that I can continue to care for my daughter Trina and have the ability to be a good Nana to my grandkids. Catching this nasty thing in my belly early was an answer to my prayers!
The other challenge was that on 7/18/16 a young gal hit us from behind at a high speed, causing back and neck injuries (and Trina is still being tested as for her to have an MRI she must go t Davis and be fully sedated. This is scheduled for 10/5/16. Prayers are welcomed as it’s scary to have to have her under anesthesia. And, we pray that her back and neck are not injured like ours. Of course chiropractic care, massages, and physical therapy will help us get on the other side of this, but it all moves slower due to what it takes to have Trina obtain the same care.
Challenges are no more than an awareness that once you are back on track with life – every moment is so much more appreciated! I am glad to be alive. I am glad we were not hurt worse in the car accident (a big thank you to my husband who was quick enough to turn the wheel enough so that when her car pushed us 70 feet from behind – at approx 45 to 50 mph – that we didn’t hit the cars in front of us but went off the shoulder).
Life is such that we take ONE day at a time. Be thankful no matter what and keep the prayers up daily. We could not live this life without reaching out to God and seeing answers to prayers, seeing miracles in the midst of the storms that come and go!
Thanks for those who still check in. We seldom ask for donations anymore, but this site allows you to donate any amount and it really helps. Right now we are having trouble driving Trina around and need an adult car seat to keep her safely in (she flails and kicks and scoots herself down to where she kicks the ceiling of the car, so we have to keep pulling over to reset her into a safe position). The cheapest one I can find is normally over $2,400 but I found one on sale for $1,200…and hoping enough donations can come in to help with that.
It’s been a wild summer. Some good news and some continuing issues. What is awesome is that Trina’s infection in her feeding tube finally got healed. Yay! However, then she started having difficulties with her bowels. I will spare you the details, but that, too, is now better.
Therefore, here we are 2/3 through summer and get to enjoy it. So, almost everyday we do pool therapy for Trina. And, we take her to the coast and to the beach in her beach wheelchair. Getting back to these type of activities is wonderful after so many months of struggling with health issues.
Even Trina’s screaming has just recently improved because we started usually the holistic approach by using herbs put together by a company called “Rooted Moon.” The pharma prescribed by the doctors was not working!
Personally, we are taking each day with appreciation for the good days and the blessings. Tough days can so quickly beat you down that we have chosen to keep our focus on our faith and our blessings to stay strong and happy!
The big things we are working on right now is a new hospital bed and a better chair for Trina. Medi-cal only allows a very cheap-end bed where Trina needs a custom bed due to her flailing (which is a continued difficulty day and night). Her doctor wrote her a “custom prescription” but apparently Medi-cal says no. We are looking into other alternatives to find the right bed within the community or refurbished or ??? Open to ideas everyone.
At any rate, hope everyone is having a good summer. Thanks again for caring and checking in. One day at a time.
Blessings to all of you from Trina’s mom and family.
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 :)
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.
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.
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.