Update: Pray for Dom- Dom has passed, His Services, Thank You- Page 48 post 949

[lizziepooh]

Edited 8/29/20- This thread was initially made asking for prayers for my nephew, Dominic, who survived a drowning 4 1/2 years ago on March 24th, 2016. He was 25 years old at the time. Ever since being discharged from the hospital he has been in numerous facilities, from acute rehabs to subacute rehabs, to brain injury rehabs, and for the past several years, a long term care facility. I had to delete all my posts on this thread for personal reasons, but felt it wasn't fair to those who've been faithfully following for all this time to leave them in the dark. Therefore, I've decided I will continue to periodically update about how Dom is doing, but will leave all identifying information, location and otherwise, out of it. Thank you all again, my dear DIS friends, who have continued to pray and have kind words for Dom and our family, without any judgment or belittlement thrown in.

Dom is doing well, but it is hard on his mom not being able to be with him like she was most days pre-Covid. She does get to see him twice a week now, for about 20 minutes each time, and she is grateful for every second. Sadly, Dom hasn't been able to go for his hyperbaric oxygen treatments, or his Botox treatments because of the covid restrictions, so his mom is very concerned about that. Hopefully they'll be able to restart those soon.

You all must be physically and emotionally worn out from dealing with all this for over 4 years. My thoughts and prayers are with you.

 

[superme80]

Thank you for the update. I will keep praying.

 

[Poohlove]

Edited 8/29/20- This thread was initially made asking for prayers for my nephew, Dominic, who survived a drowning 4 1/2 years ago on March 24th, 2016. He was 25 years old at the time. Ever since being discharged from the hospital he has been in numerous facilities, from acute rehabs to subacute rehabs, to brain injury rehabs, and for the past several years, a long term care facility. I had to delete all my posts on this thread for personal reasons, but felt it wasn't fair to those who've been faithfully following for all this time to leave them in the dark. Therefore, I've decided I will continue to periodically update about how Dom is doing, but will leave all identifying information, location and otherwise, out of it. Thank you all again, my dear DIS friends, who have continued to pray and have kind words for Dom and our family, without any judgment or belittlement thrown in.

Dom is doing well, but it is hard on his mom not being able to be with him like she was most days pre-Covid. She does get to see him twice a week now, for about 20 minutes each time, and she is grateful for every second. Sadly, Dom hasn't been able to go for his hyperbaric oxygen treatments, or his Botox treatments because of the covid restrictions, so his mom is very concerned about that. Hopefully they'll be able to restart those soon.

First I want to say thank you for sharing, I too have followed over the years and I have said many prayers for Dom. Also, in some strange way, I felt a connection to your struggles because we live in South Jersey and a lot of the places you mentioned we all too familiar with me because of what we went through with my dad after he had his stroke.

My dad received Botox injections to try and help with the contracture of his arm, he got several rounds and after the second we didn’t see much improvement. It was very costly so we have decided, along with the pain management doctor, to discontinue those treatments. Did they work for Dom? I am hesitant to bring it up but it’s been such a life changer, he has had a lot of success with medical marijuana. It has kept the painful spasticity at bay for about 18 months now and for that I am so grateful.

 

[TeresaNJ]

Thanks Teresa. I continue my prayers for Dom, you, and your family.

Thank you so much, Kitty.

Thanks for the update. I am sorry for all you are going thru and if posting here helps you then go ahead and post. If anyone doesn't like the posts you can just scroll away.

I really appreciate it, mrsstats79! I don't understand why people can't do that.

You all must be physically and emotionally worn out from dealing with all this for over 4 years. My thoughts and prayers are with you.

It really is a mental struggle if we think about it too much. It's just so hard to see Dom as he is now while thinking about the vivacious energetic little boy he was, and the 25 year old who was so looking forward to Galaxy's Edge opening. None of us can go to WDW without thinking about all our trips with Dom. Dom's dad sold his DVC a few years ago, when it became apparent Dom would never be going to WDW again. My mom, Dom's grandmom, turns 87 next month, and she is so heartbroken about Dom. Dom's mom is so faithful and positive though, that she lifts us all up, reminding us to be hopeful and that miracles do happen.
I

Thank you for the update. I will keep praying.

Thank you, superme80.

First I want to say thank you for sharing, I too have followed over the years and I have said many prayers for Dom. Also, in some strange way, I felt a connection to your struggles because we live in South Jersey and a lot of the places you mentioned we all too familiar with me because of what we went through with my dad after he had his stroke.

My dad received Botox injections to try and help with the contracture of his arm, he got several rounds and after the second we didn’t see much improvement. It was very costly so we have decided, along with the pain management doctor, to discontinue those treatments. Did they work for Dom? I am hesitant to bring it up but it’s been such a life changer, he has had a lot of success with medical marijuana. It has kept the painful spasticity at bay for about 18 months now and for that I am so grateful.

Thank you, Poohlove. The Botox was specificially given for Dom's wrists and hands, and it did seem to help, although Dom still has fairly significant spasticity, and he has a Baclofen pump implanted to help with that. I'll mention to Dom's mom about the marijuana. I don't know how they would administer it to him though. It's definitely worth researching. I'm so happy that it's helping your dad.

 

[Poohlove]

Thank you so much, Kitty.



I really appreciate it, mrsstats79! I don't understand why people can't do that.



It really is a mental struggle if we think about it too much. It's just so hard to see Dom as he is now while thinking about the vivacious energetic little boy he was, and the 25 year old who was so looking forward to Galaxy's Edge opening. None of us can go to WDW without thinking about all our trips with Dom. Dom's dad sold his DVC a few years ago, when it became apparent Dom would never be going to WDW again. My mom, Dom's grandmom, turns 87 next month, and she is so heartbroken about Dom. Dom's mom is so faithful and positive though, that she lifts us all up, reminding us to be hopeful and that miracles do happen.
I


Thank you, superme80.



Thank you, Poohlove. The Botox was specificially given for Dom's wrists and hands, and it did seem to help, although Dom still has fairly significant spasticity, and he has a Baclofen pump implanted to help with that. I'll mention to Dom's mom about the marijuana. I don't know how they would administer it to him though. It's definitely worth researching. I'm so happy that it's helping your dad.

Same for my dad, his wrist and hand are so tight and it is very hard to get his fingers open to clean in there and to cut his nails. He was making great progress while in therapy but since the therapy has stopped he has continued to curl up and now it appears as though his shoulder girdle is stretching out. When he was in rehab he was on Xanaflex but switched him to see if the Baclofen worked better for him but he reacted terribly to it. The most troubling side effect for us was that it made him cry all the time. At our insistence he was back to the Xanaflex and has fared much better with it.

Medical marijuana comes in all forms, even as an oil. When my dad first went on it we got the oil and it goes under his tongue. My stepmother has branched out and now gets him gummies, lotion and lozenges. The pain management doctor first suggested it and we did all of the paperwork through them but paid the fee online. My stepmother had to get a caretaker card (which was a little more involved but still easy to do) to be able to go into the dispensary with him but I can not say enough how much of a life changer it has been for him. Seeing those spasms would break my heart and they have stopped, he is much more comfortable too which is so important.

 

[AnnaS]

Thank you Theresa for all your updates. I will continue to keep Dom and his loved ones in my prayers.

 

[weich1001]

Hi Teresa,
First time in a long time that I logged onto the Dis...was hoping to read some your recent Disney Travels...the last I knew you were rescheduling and hoping to go May,2020(?...I think)..Obviously Covid has changed everything now. But realized your Trip Reports are no longer. Then I looked at the date and realized it has been almost five years since the accident and began to think about how life has changed for all of you. Was hoping to catch an update on Dom, Dom's Mother and how are the rest of your family doing. But it appears you have had some issues online and no longer posting-which is certainly understandable. You are thought about by many I am sure. I do miss your writing and Trip Reports. And I will continue to pray to help your whole family as the accident had an impact on your family that I just can't grasp what y'all have gone thru. God Bless! Stay Safe!

 

[TeresaNJ]

Hi Teresa,
First time in a long time that I logged onto the Dis...was hoping to read some your recent Disney Travels...the last I knew you were rescheduling and hoping to go May,2020(?...I think)..Obviously Covid has changed everything now. But realized your Trip Reports are no longer. Then I looked at the date and realized it has been almost five years since the accident and began to think about how life has changed for all of you. Was hoping to catch an update on Dom, Dom's Mother and how are the rest of your family doing. But it appears you have had some issues online and no longer posting-which is certainly understandable. You are thought about by many I am sure. I do miss your writing and Trip Reports. And I will continue to pray to help your whole family as the accident had an impact on your family that I just can't grasp what y'all have gone thru. God Bless! Stay Safe!

Thank you so much, Wendi, for thinking of us! Yes, sadly, I had to discontinue my trip reports, as well as this thread about Dom, for reasons that I can't get into here, but I appreciate it so much that you are still praying for Dom and our family. Dom's five year anniversary is coming up on March 24th. He's had a few hospitalizations this year, the most recent a few weeks ago for breakthrough seizures. They upped his seizure medication a little bit, and that seems to have worked. Not much has changed since I was last posting, other than all the Covid restrictions. It has been a tough year on Dom's mom, not being able to see him like she had been. She was able to do outside visits during the summer and early fall, six feet apart, of course, and not able to hug or kiss him, and then everything shut down over the winter. Thankfully she was allowed to be with him during his hospitalizations since she is his legal guardian, and he is non-verbal. Now that everyone at the facility Dom is at has been vaccinated, they're going to open up outside visiting again. Not ideal, but it is what it is. My sister and I went to WDW last July, arriving the day the parks opened, but the rest of the family who were to go on the May trip opted out. We took another trip in October, and that time it was me, my husband, and my sister. My brother-in-law was unable to go since he is a teacher. We had an amazing time both trips, even though it was a little uncomfortable in the heat with the masks, but a small price to pay for the parks to be open. Take care, Wendi, and I hope you and your family are well!

 

[lynxstch]

Glad to hear from you again Teresa. I kept meaning to message you and ask about Dom, but just haven't had the time to stop and do it. Glad to see a small update, sad to hear that he has had more health problems. I am glad that you and your family had time to get away to WDW and escape life for a little while anyhow. The prayers are still going in Dom's direction as well as yours,,so keep the faith, and know that some of your DIS family is still behind all of you!
Lynn

 

[TeresaNJ]

Glad to hear from you again Teresa. I kept meaning to message you and ask about Dom, but just haven't had the time to stop and do it. Glad to see a small update, sad to hear that he has had more health problems. I am glad that you and your family had time to get away to WDW and escape life for a little while anyhow. The prayers are still going in Dom's direction as well as yours,,so keep the faith, and know that some of your DIS family is still behind all of you!
Lynn

Thank you, Lynn. It means a lot.

 

[Dan Murphy]

Thanks, Teresa, for the update on Dom. Amazing, 5 years next week. You and Harry came to mind a couple weeks ago. I recalled your days you lived in FL and were DVC rep. Don't know why that came to mind. Prayers are with you all.

 

[flyingdumbo127]

Continuing to pray for you and Dom always, Teresa and sent you some snail mail, too

 

[TeresaNJ]

Thanks, Teresa, for the update on Dom. Amazing, 5 years next week. You and Harry came to mind a couple weeks ago. I recalled your days you lived in FL and were DVC rep. Don't know why that came to mind. Prayers are with you all.

Thank you, Dan! I think about you often, too. That's so funny that you remembered my Florida and DVC days! Maybe mental telepathy?

 

[TeresaNJ]

Continuing to pray for you and Dom always, Teresa and sent you some snail mail, too

Mona, I've been thinking about you a lot!!! Somehow I misplaced your email address, and your snail mail address! You were in my contacts, but I can't find it. Who knows? Anyway, looking forward to hearing from you!

 

[tazdev3225]

Teresa I was surprised to see this come up as I knew you had to discontinue posting. I pray for Dom and all of you. Glad you were able to get to the parks. I was there right before the shutdown and miss the Flower and Garden this year but I have had chronic ear infections from the mask. My husband was also at to great a risk if I brought something home. Thankfully he got his 1st shot so we can get back to some kind of normal.

 

[TeresaNJ]

Teresa I was surprised to see this come up as I knew you had to discontinue posting. I pray for Dom and all of you. Glad you were able to get to the parks. I was there right before the shutdown and miss the Flower and Garden this year but I have had chronic ear infections from the mask. My husband was also at to great a risk if I brought something home. Thankfully he got his 1st shot so we can get back to some kind of normal.

Praying things return to normal sooner rather than later, and you can get back to visiting WDW! Thank you for your prayers. Dom and his mom need them now more than ever.

 

[Tuffcookie]

Hi Teresa, I‘m not on here too often but when I do, it’s to check for any updates on Dom. You all continue to be in my thoughts and prayers!

Cindy

 

[2manypets]

It's so good to hear another update about Dom. He's in my prayers.

I have a daughter that suffered a severe brain injury in 2010. As a Caregiver, Loved one, Aunt, I give you all the best love. It's hard! Never knowing what will happen next, or it anything will happen next. Keep your faith and let others help.

 

[marcyleecorgan]

lots of good thoughts and pixie dust your way...

 

[TeresaNJ]

Hi Teresa, I‘m not on here too often but when I do, it’s to check for any updates on Dom. You all continue to be in my thoughts and prayers!

Cindy

It's so good to hear another update about Dom. He's in my prayers.

I have a daughter that suffered a severe brain injury in 2010. As a Caregiver, Loved one, Aunt, I give you all the best love. It's hard! Never knowing what will happen next, or it anything will happen next. Keep your faith and let others help.

lots of good thoughts and pixie dust your way...

Thank you so much! I'm hoping to have another update on Dom soon. March 24th of this year marked his five year anniversary since the accident. Not a whole lot has changed since the beginning. With this past year of Covid, Dom's extra therapies such as his HBOT sessions were stopped, and his mom wasn't allowed in to see him for months, pretty much from November until last month. We know he developed two pressure ulcers on his bottom, which I attribute to him being left in the same position for God knows how long, whether it was in the bed or in his wheelchair. When family isn't allowed in to visit, who knows what goes on with long term care residents. When the facility doesn't know when you're going to show up, patients are taken better care of. Dom also had a recent hospitalization for increased heart rate, and tremors. He was watched for a few days, and his anti-seizure med was increased. His mom says the pressure ulcers have healed, and she was able to get Medicaid to approve a new wheelchair, as he's gained weight since he was originally measured. The facility was blaming the wheelchair being too small causing his pressure ulcers. If they knew that, then why put him in that chair? Dom's mom was also recently granted a special caregiver allowance to go in and give him care for a few hours a week. She was so happy about that. June 4th will be Dom's 31st birthday, his sixth birthday since the accident. I'm praying we'll be allowed to go see him. Thank you all for your continued thoughts and prayers.