Book Of Likes

Honestly your boy is so cute, he looks like an angel. I don’t know an answer but I hope you get one soon, this page is so nice.

I don’t know if you will see this but you need to get him on a waiver so he will be on medicaid. There is no other way to do it. I have a child with multiple medical needs if you need to reach out please PM me. I can help you as much as I can.

He’s beautiful!
If you have to stay overnight, check with Ronald McDonald House. They’re helping a friend of mine.

Contact the March of Dimes and Easter Seals both help with needs of children.

Too many posts to read and see if this has been posted yet. But, many hospitals have agreements with hotels for special pricing for patients. I also agree with some of the posts I saw. Ronald McDonald House, Shriners and definitely GO FUND ME PAGE. Best of luck in finding doctors and ways of doing things to help. He certainly is a cute little guy!!

 Medicaid will pay for travel and hotel plus meals for you and him. Also, you can get nursing through medicaid services. Just call and ask. Your doctor can write a prescription for nursing. Our kids require medicaid bc traditional insurance doesn’t pay for what they need.

 I have him on medicaid. First thing I did as he underwent surgery his second week of life and spent over a month in the nicu so I knew the bill was going to be out of the roof. Thank you for reaching out.. Best wishes to you and your baby. ❤

My daughter had Arthrogryposis and club foot, I can’t help but think of her in his photo, it gives me a strange peace.
She passed at 24 weeks before she came earthside.
I had a lot of resources put together I will try to see if I can find them and get them to you.

They unfortunately don't allow children to stay with you and I have a toddler I stay home with as well.
If your child is receiving early intervention services, your service coordinator may be able to help with info. What a cutie you have!

Hi, complex needs mom here! My first best suggestion is to find a Book Of Likes group for your child’s diagnosis.
The families that have walked the path before you will have invaluable information! The first year to 18 months are probably the busiest / hardest. You can do this and things are never as difficult as they first seem!
You can message me if you any need direction on how to arrive. My daughter has partial sacral agenesis, VACTERL, and thoracic insufficiency syndrome. We are 12 years and about 40 surgeries in, traveling from Florida, Arkansas to Philadelphia.

Please reach out to social workers at your children’s hospital! I work at one of my local pediatric hospitals and we have resources for our patients and their families.

Apply for SSDI immediately, and also medicaid as a secondary insurance and wait for a phone interview, it might take a month and lots of paperwork to fill out.. but try going through the process.

If its overnight visits, contact the hospital liaison and ask if the Ronald McDonald house is an option or if the hospital has accommodations. Some do or have an agreement with a nearby hotel for reduced rates. Otherwise, pack a cooler with lots of waters, sandwich makings or foods that can be eaten cold. Avoid eating at restaurants or the hospital because that gets costly.

Pack your own lunch and drinks.. eating on the road is expensive! Apply for benefits for your baby to help with expenses ie social security..,ps he’s beautiful.
Apply for SSDI for him. The extra money is for his care and special needs. Best if luck!
 

As a mama of a special needs kiddo, I hear ya! Medicaid offers free transportation, so jump on that. They may not approve multiple appts in one day so try to get them back to back so a hotel room is worth it. And there may be some help with that as well. You'll have to check. Take advantage of all the programs medicaid offers. They have over the counter benefits, etc. Call and ask for a case manager. They can tell you all the things that can help. Side note, he's beautiful! Absolutely adorable. Congrats on your precious little love.

He’s beautiful. Don’t be scared, you’ll all be enough.
Get a van or even minivan and outfit it with a bed and cooler, 12 volt fans etc. You can park overnight in most Walmart stores. Watch “minivan camp” YouTube videos for information about how to set up simple solar or charge a Jackery while you drive.

Have you considered St Jude Children’s Hospital? They don’t charge patients for care or lodging is my understanding from the ads they run on tv. Worth looking into. I pray that all will be well.

Ronald McDonald house for families of compromised children. Also contact social workers at affiliated hospitals. They can share all resources. Start a go fund me page

Congratulations momma, he's so cute!
I'd check with your insurance ask for case manager and the hospital. Ask for their social worker that can help with resources. A lot of insurances are helping with transportation for doctor visits. Often hotels near hospitals offer discounts to patients. Sometimes hospitals have a share care house or Ronald McDonald housing that they will let you stay in for cheaper prices. Idk what state you are in but ask your county social services for programs that will follow for development and resources like that. May be able to get SSI and possibly other resources.
I lived in California when my daughter was born, then followed by California's Children Services until her 2nd birthday. Far Northern Regional never took her on tho. She was eligible for SSI for a few months.

The RMH will be there for you. Contact them in advance and let them know your situation and your child’s needs for medical care. You may have to show proof of Covid vaccination. I’m not 100% sure on that since every state may have different requirements. The RMH was a true blessing for our family while our special needs daughter was in ICU many times. Good Luck!! Sending prayers to you and beautiful baby.

Make food to take. Plenty of veggies and sandwiches. Ask the doctors if there are any low cost hotels nearby.
And water. And he’s beautiful.

A small travel trailer to pull to stay in. This way you have a place ti sleep as well as a kitchen ti cook in. Yes there is the initial cost of trailer, but you will have comforts of home and cheaper in the long run.

I agree! It is so much nicer to stay in your own place even if it is a camper. Most hospitals have a place that you can park a camper.

He is so cute!!!!!!!!! My first son also has some special qualifications and needs. It wasn't until my 3 or 4th surgery, my wife discovered the social workers. Please look into them at the hospital, they gave us vouchers for the cafeteria, reimbursed bus tickets, paid for taxis. Really was a life line for my mom.

He is precious and adorable! Many blessings to you all!. I have been in this situation. Where I am at, we have Children's Miracle Network, Ronald McDonald House, Shrines and just a big community outreach.
Children's Miracle Network would provide a prepaid card to cover gas and hotel stay. The hospital would provide food vouchers. At the time Ronald McDonald house was 7$per night and Children's Miracle Network paid for my month stay. Prayers for your journey and please please remember your self care too.

You done correct by allowing the world know the situation you are going thru with your child, I honesty hope every body can send you a decent amount of money to make it enough for your sending and monthly bill to pay. Please, don't take the hit alone, ask for assistance to many government agencies available for people who need it.