April I can’t even imagine what you and EB are going through. My Dad has had severe Rheumatoid Arthritis for 20 years and it has been so hard to watch him go through so much pain and treatments. I am praying for EB and all of you. You are so strong and can get through this. ❤
Thanks for the update about Zade, glad to hear he is doing well! I pray that everything with EB pans out and she's not in any pain! 🙏🙏Ping Pong looks like so much fun! Thanks for sharing!!
sometimes when you are in a hard place in life you need to find something fun to do to balance it all, so you take a breather I know that might hard to do sometimes balancing things, but you have to keep going
I have been on Remicade for 20+ years for my crohns. My parents had to sign a massive stack of papers because I had to go on it before it was officially approved for kids in the 90’s. I had no other options. Remicade worked. There is also a program called Jansen care path. (It’s changing to j&jand me I think) but they give me 20k a year to pay for my remicade. It helps cover my insurance deductible and then I’m clear after that. Happy to answer any questions or give you advice about my experience with this medication. Also get EB a lidocaine numbing cream to put in her arm before her iv. It makes it nearly painless. LMX and Emla are 2 brands.
Talk to the clinic or hospital that she will be getting her Remicade at and find out if they have a savings program department or ask billing to look into eligibility for the Jansen care path program, it’s really easy to qualify thankfully.
Also have them look into of a Remicade biosimikaf like inflectra would work for EB. Insurance are more likely to approve those then the brand name ones sometimes because they are cheaper.
Insurance is such a blessing and a curse! I feel her, I have to see the rheumatologist and eye dr as well for my Sjogrens. It’s so hard! It’s ok to get and be emotional April- you are her mom and moms carry so much ❤
April I totally understand, my MS treatment is $70,000 every six months. We have to pay even with insurance a high rate in January before our deductible kicks in. The insurance company charges have gone up every year. The MS drug company is marvelous they even gave us a cc to use if we need to before our deductible kick in. So I would reach out to the drug company. I had two sons one with hydrocephalus he was born premature seven weeks. And at the same time he’s older brother 4 1/2 while I was in the hospital he was admitted in the hospital with kidney failure and he’s now 47 years old so I’ve been through it too, so be strong and it does get better. I promise.love to you all God Bless 🙏🙏🙏
you might want to look into private health insurance for ebbie, you have to crunch the numbers to what you pay for christian ministry due it is a health share plan versus health insurance . Also some ppo high quality health insurance enable you to see doctors out of state, so you might be able to get better specialized care. If you have any questions dont be afraid to reach out. I have a chronic condition that requires specialists and not cost friendly treatment.
Sweetheart I’m praying for you and family🛐 God has this and He’s guiding you. I can’t imagine how stressed this can make you as parents however you both are really showing us how to trust in Gods plan! There’s a chance that by the time Ebby is in her teenage years that God will provide a cure? I just wish you some hugs and prayers! Love & prayers from Oak Forest IL🛐✝️😘🙏💜🛐✝️🙏💜🛐✝️🙏🙏🙏🙏🙏🙏🙏🙏 0:30
April, try bouncing (dribbling) the ping pong ball on the table do get the feel of the ball hitting the paddle and where it hits. That works on your eye/hand/ball coordination too. Then slow down when playing to get in a rythrm. When playing, plant your feet, bend your knees and sit into it a bit so your not leaning forward flinging your arms willy nilly. It's all in the wrist and eyes so stabilize your body to not move so much. You got this. Or you don't. 😂😊
It's so hard to see the struggle with health insurance knowing that in most european countries she would have gotten all the treatment she needed for free, or at least mostly free. I'm hoping that you figure it out and that everything works out in the end.🙏❤
You can not say that we get all treatments for free or almost, sometimes health insurence won't pay for treatment and you have to fight hard for it, and it is your duty to be in an health insurance and it is really expensive every month, so treatment is not for free because you pay every month, but yes, we are blessed because most of the time they pay for you, hopefully with EBAll will go well, greetings from Germany 🇩🇪👍
In the UK it would be completely free, I think that’s what she means, not the whole of Europe. All drs apps, children’s prescriptions etc are free. Adults pay £10 per prescription (if they can afford it) which is nothing but all treatment is free. The NHS isn’t perfect but everyone gets treated regardless of the cost of treatment.
I understand the insurance stuff. I'm going thru all that right now. I have to try everything before they will let me do the infusions. Why are the dogs always in the crate instead of running free in the house?
Hi April, I’ve recently discovered more benefits with taking vitamin D3 as a natural prednisone, and anti inflammatory in large doses. You can speak to the functional doctor about this. Repeated use of steroids also harms adrenal glands over time, and the list goes on (as you know). Just research large doses. If you’d like to chat sometime, happy to. - functional nurse. It’s a lot to try and understand, sometimes a good cry is all you can do. You could pay cash for those doctor visits and it would be cheaper than what your insurance is charging! Wow!
Might wanna just get eb private health insurance, it will probably save you some money in the long run and also then you could take her to other states and get her the best specialized care that you can for her, I’m saying this because me and my family travel to a different state for health care
April it has been a stressful day for you today about the insurance and crying. You might have lots of stress in your body. Recomend yoga instead of table tennis. Maybe❤
April I can’t even imagine what you and EB are going through. My Dad has had severe Rheumatoid Arthritis for 20 years and it has been so hard to watch him go through so much pain and treatments. I am praying for EB and all of you. You are so strong and can get through this. ❤
Thanks for the update about Zade, glad to hear he is doing well! I pray that everything with EB pans out and she's not in any pain! 🙏🙏Ping Pong looks like so much fun! Thanks for sharing!!
🙏🏻❤️Prayers continuing for your precious EB. She’s really growing!
sometimes when you are in a hard place in life you need to find something fun to do to balance it all, so you take a breather I know that might hard to do sometimes balancing things, but you have to keep going
I have been on Remicade for 20+ years for my crohns. My parents had to sign a massive stack of papers because I had to go on it before it was officially approved for kids in the 90’s. I had no other options. Remicade worked. There is also a program called Jansen care path. (It’s changing to j&jand me I think) but they give me 20k a year to pay for my remicade. It helps cover my insurance deductible and then I’m clear after that. Happy to answer any questions or give you advice about my experience with this medication. Also get EB a lidocaine numbing cream to put in her arm before her iv. It makes it nearly painless. LMX and Emla are 2 brands.
Talk to the clinic or hospital that she will be getting her Remicade at and find out if they have a savings program department or ask billing to look into eligibility for the Jansen care path program, it’s really easy to qualify thankfully.
Also have them look into of a Remicade biosimikaf like inflectra would work for EB. Insurance are more likely to approve those then the brand name ones sometimes because they are cheaper.
I love you I love you guys too❤
Insurance is such a blessing and a curse! I feel her, I have to see the rheumatologist and eye dr as well for my Sjogrens. It’s so hard! It’s ok to get and be emotional April- you are her mom and moms carry so much ❤
I miss Utah. EB is starting to look so grown up. All the kids are beautiful. Love your family.
"Can you see the ball?" 😆😆😆😆😆😆😆😆😆😆
April I totally understand, my MS treatment is $70,000 every six months. We have to pay even with insurance a high rate in January before our deductible kicks in. The insurance company charges have gone up every year. The MS drug company is marvelous they even gave us a cc to use if we need to before our deductible kick in. So I would reach out to the drug company. I had two sons one with hydrocephalus he was born premature seven weeks. And at the same time he’s older brother 4 1/2 while I was in the hospital he was admitted in the hospital with kidney failure and he’s now 47 years old so I’ve been through it too, so be strong and it does get better. I promise.love to you all God Bless 🙏🙏🙏
I have been watching this family from Kenya for many years now,many love ❤️ ❤❤❤❤❤❤❤
Aw nice video April and davey family
Sending love, hugs, prayers and kindness with a daily dose of encouragement with positive thoughts ♥️🙏🏼👍🏼🇺🇸🌹
EB you are healthy you are blessed you are a child of the Lord
you might want to look into private health insurance for ebbie, you have to crunch the numbers to what you pay for christian ministry due it is a health share plan versus health insurance . Also some ppo high quality health insurance enable you to see doctors out of state, so you might be able to get better specialized care. If you have any questions dont be afraid to reach out. I have a chronic condition that requires specialists and not cost friendly treatment.
Sweetheart I’m praying for you and family🛐
God has this and He’s guiding you. I can’t imagine how stressed this can make you as parents however you both are really showing us how to trust in Gods plan! There’s a chance that by the time Ebby is in her teenage years that God will provide a cure? I just wish you some hugs and prayers!
Love & prayers from Oak Forest IL🛐✝️😘🙏💜🛐✝️🙏💜🛐✝️🙏🙏🙏🙏🙏🙏🙏🙏 0:30
April, try bouncing (dribbling) the ping pong ball on the table do get the feel of the ball hitting the paddle and where it hits. That works on your eye/hand/ball coordination too. Then slow down when playing to get in a rythrm. When playing, plant your feet, bend your knees and sit into it a bit so your not leaning forward flinging your arms willy nilly. It's all in the wrist and eyes so stabilize your body to not move so much. You got this. Or you don't. 😂😊
Do whatever it takes to help EB my mom has rheumatoid arthritis could not afford treatments her hands and feet are disfigured from it
Who else loves April and Davey?
me too i love this channel
Relentlessly
Happy Gilmore is the best!! Happy Gilmore 2
Is it going to come out on Netflix. They take someone the scenes in a town next to me.
I have eveitis 7 years now and rheumatoid arthritis I’m on humira. Methotrexate is amazing but made me feel sick
It's so hard to see the struggle with health insurance knowing that in most european countries she would have gotten all the treatment she needed for free, or at least mostly free. I'm hoping that you figure it out and that everything works out in the end.🙏❤
You can not say that we get all treatments for free or almost, sometimes health insurence won't pay for treatment and you have to fight hard for it, and it is your duty to be in an health insurance and it is really expensive every month, so treatment is not for free because you pay every month, but yes, we are blessed because most of the time they pay for you, hopefully with EBAll will go well, greetings from Germany 🇩🇪👍
In the UK it would be completely free, I think that’s what she means, not the whole of Europe. All drs apps, children’s prescriptions etc are free. Adults pay £10 per prescription (if they can afford it) which is nothing but all treatment is free. The NHS isn’t perfect but everyone gets treated regardless of the cost of treatment.
Can you get her on the state insurance where she has a chronic disease?💜
Eb and Frankie boy are so cute
I understand the insurance stuff. I'm going thru all that right now. I have to try everything before they will let me do the infusions. Why are the dogs always in the crate instead of running free in the house?
Come to Scotland all free baby’s dental operations glasses 😂
Im with davey if it isn't broke don't fix it
Hi April, I’ve recently discovered more benefits with taking vitamin D3 as a natural prednisone, and anti inflammatory in large doses. You can speak to the functional doctor about this. Repeated use of steroids also harms adrenal glands over time, and the list goes on (as you know). Just research large doses. If you’d like to chat sometime, happy to. - functional nurse.
It’s a lot to try and understand, sometimes a good cry is all you can do.
You could pay cash for those doctor visits and it would be cheaper than what your insurance is charging! Wow!
I believe CHM has recently changed to the 90-day clump. I found it confusing, too.
Praying for eb's full healing🙏❤️
Its ok April...im worse at ping pong than you. Im very uncoordinated 😂
🙏
Might wanna just get eb private health insurance, it will probably save you some money in the long run and also then you could take her to other states and get her the best specialized care that you can for her, I’m saying this because me and my family travel to a different state for health care
I know how you feel, April. Health insurance is too expensive.
Hi ❤❤❤❤❤❤❤❤❤❤❤❤❤❤❤❤❤
Growth plates …
April it has been a stressful day for you today about the insurance and crying. You might have lots of stress in your body. Recomend yoga instead of table tennis. Maybe❤
En
i don't like doctor's visits at all