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Update From Dre’s Mom, Tanya (Mahina) 4/15/24

We left the hospital and arrived home late last night. I was seething with anger, drowning in despair, and clinging to hope. I feel completely and totally, helpless. I was alone in the van and Christopher and Dre were ahead of me in the ambulance. I only left Dre’s bedside for two nights so it felt good to release all that I’d been holding. I sang, I cried, I screamed, trying to absorb it all. I prayed. I begged for this to not be real. My emotions shifted back and forth. Processing the impossible. Asking myself what else could I have done? What are we going to do now? How is this possible? How is this legal?

Dre was very nervous and he verbalized very clearly that it hurt too much last time he was in “that van”(ambulance). We hugged him and validated his fears and told him we had a different plan and doctor helped him with special medicine for the ride. We hoped and prayed it would work and it did

Thank you for praying, envisioning and vibrating ease for our baby. Words fail me over and over as I try to express the huge gratitude we have for all of you. We were close to home when daddy shared…

Dre just said, “I’m awesome and good”….. I(daddy)said, “not nervous anymore, should I tell Mom?” he said “yeah, not nervous anymore.”

The paramedics helped us transfer Dre into his hospital bed at home. He looked over at us and said, “Yay! I’m home. I love home!” He told me that he wasn’t hurting and I’m grateful. The medicine they gave him is only available in the hospital. Unfortunately, we won’t be able to use that for doctors visits or attempting basic transfers. We are grateful for this trip and that he was still able to speak afterwards. Christopher has busied himself back into our home routine. Multiple things to do and he’s off to do them all. (Papa Goose)

! I am with Dre. Sitting with our bird.(Mama Goose) I stare at all the things that need to be done. I feel heavy and it’s difficult to move. He can’t be left alone for any length of time because he doesn’t know how to yell for us if he needs something. He needs help with every urination and if you aren’t quick enough it becomes messy

very quickly. He is still withholding his bowel movements to avoid the pain of sitting

We are working on some tools to adjust to this new normal. Possibly, a bell or a button he can push to get our attention. Christopher has been sleeping in Dre’s room and I sleep with Dre because of his inability to help himself or call for help. We miss each other terribly and have decided to get a single bed for our room. We will need to put it beside our bed so we can help him and be next to each other. Dre has multiple needs many times in the night and one of us needs to be close. We decided that doing nights together is better than apart. Almost 7 months is long enough. There is joy here. It feels so comforting to be home and at the same time, we know this isn’t the best place for Dre. He needs help. I don’t know where, who, how or even when but we will never stop telling everyone that this isn’t ok. This is inhumane. Dre has missed going to his Monday night bowling league, he will not be able to play baseball this spring for the first time ever, he misses his friends at his work/school program, he misses escaping to his Ol’Best Oma and Opa’s on the weekends. He misses being able to go to the bathroom independently or being in his room alone. He misses going to pool therapy. He misses going to shows with daddy. He misses walking and going for car rides. He misses fresh air and riding his bike and his scooter. He misses life. This isn’t illegal and I don’t understand that. Loosing this much function in one day is unheard of. We will never give up. He deserves to sit in the sun and access life outside of bed. We don’t know what to do. We need time to catch our breath and absorb what is happening. I still made multiple calls today for help. I will call someone every day until we find relief for him.

We love you all and thank you for all your love and prayers.

We Believe In The Good Things Coming Dre

Tanya Mahina

Update From Dre’s Mom, Tanya (Mahina) 4/15/24

Our hearts are absorbing the inconceivable and we feel shattered in a whole new way.

They told us we have reached the end of what western medicine can offer Dre. The doctors here called multiple facilities, multiple times and the specialty hospitals declined the transfer. Not insurance

The facility. They all say that after reviewing the file, they have nothing more they can offer him that hasn’t been done. The social worker came in and offered nursing homes and group homes. There would be no additional help for him.

They just offered to take him off our hands

We will take our baby home as soon as they can arrange it. We can care for him and we will. Dre is still unable to sit, roll on his side, sustain a wheelchair or get in a vehicle. I’m still having difficulty understanding that there is nothing else we can do. Feeling held by all of you as we hold our baby’s hand and tell him we will never stop seeking help for him. We will love him and we will never walk away from him. We will also look in every direction for a way forward while trusting our path. God is walking with us. We are not alone. This door is closed and I don’t have time to wonder why. We only need time to sit with all of the multiple feelings we are having simultaneously. Dre is a light that is indescribable and we will continue to fan his flame

We Believe In The Good Things Coming Dre

Update From Dre’s Mom, Tanya (Mahina) 3/24/24

"We’ve found joy in the chaos. We have laughed and we have cried. We have felt our sadness and we have focused on hope.

We’ve held our baby’s hand for 159 days of watching him deteriorate with zero understanding of what to do. We have asked for a specialty facility and have been denied at every turn. We have asked the heavens to guide us because we cannot do this alone. We will continue to follow where the path leads us and trust ❤️‍ We are beginning the preparations to leave next week. We will be directly admitted into a hospital downstate with an orthopedic surgeon who wants to help. He specializes in hips and cerebral palsy. We are terrified and hopeful. We don’t know how we are going to do any of this. We also felt the same in October, November, December, January, February and now in March. April brings a new adventure with high hopes for answers! We are praying that Dre’s pain is under control for transport. He will not have numb hips this time and we have to go twice as far. Lodging and food has been our largest hurdles with us not being able to eat at the hospital and they don’t have any hospitality houses. Praying for all to work itself out like it has so far. Sending love to all of you for your continued prayers, letters, gifts, love and support. This is the first time we’ve been invited to a hospital instead of having to beg for help! We also have a specialty doctor! All things we haven’t had yet! Hope is all around us! Thank you ALL for being on this insane journey with us! We couldn’t do it without you❤️‍ Fist bumps from our number one D.R.E." -

See UpNorthLive's coverage on Dre's journey here https://www.youtube.com/watch?v=w6o14P-fkxE

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