The Official DisDads Prayer and Praise Thread

[AirGoofy]

DD12 has been "sick" for almost a year now. It really got bad last year at Christmas (while we were at WDW no less) and we have had a dozen trips to the Children's Hospital at the University of Iowa over the last 10 months. It's been a long process of eliminating things and running tests, but they finally gave her a diagnosis yesterday.

She has a fairly rare disorder known as Takayasu's Arteritis. (I have always said she is 1 in a million and now I have medical documentation to prove it). It isn't life threatening at this time, and shouldn't become so if they stay on top of the condition, but she is in for a lifetime of medical treatments and routine testing to make sure things are under control. On one hand I am glad to finally have a name to what has been going on, but on the other hand that name finally shows our fears - that this isn't something that is going to go away.

Fortunately, we have good insurance that SHOULD pay for most of this (we have to fight an "unauthorized drug" battle since the FDA hasn't approved humira to treat this disease since it is so rare). Even MORE fortunately, we have good family and friends (you gentlemen included) to help us keep grounded.

Please pray for energy to keep positive in this whole ordeal.

Prayers for her and your family.

 

[scott2997]

Gentlemen,

I don't post much here anymore, spending more time on the Facebook side of things, but I still follow this thread on a regular basis. I've offered up my prayers in support of you all, and now it's my turn to ask for the return of the favor.

DD12 has been "sick" for almost a year now. It really got bad last year at Christmas (while we were at WDW no less) and we have had a dozen trips to the Children's Hospital at the University of Iowa over the last 10 months. It's been a long process of eliminating things and running tests, but they finally gave her a diagnosis yesterday.

She has a fairly rare disorder known as Takayasu's Arteritis. (I have always said she is 1 in a million and now I have medical documentation to prove it). It isn't life threatening at this time, and shouldn't become so if they stay on top of the condition, but she is in for a lifetime of medical treatments and routine testing to make sure things are under control. On one hand I am glad to finally have a name to what has been going on, but on the other hand that name finally shows our fears - that this isn't something that is going to go away.

Fortunately, we have good insurance that SHOULD pay for most of this (we have to fight an "unauthorized drug" battle since the FDA hasn't approved humira to treat this disease since it is so rare). Even MORE fortunately, we have good family and friends (you gentlemen included) to help us keep grounded.

Please pray for energy to keep positive in this whole ordeal.

Ben, good to hear that they can finally label it so they can properly treat it.

Will pray not only for you and your DD but also that the insurance company cooperates!

 

[that's nice]

Ben, I'm glad they were finally able to give you a diagnosis.

Sending out thoughts & prayers to your family.

 

[Cinderella's Fella]

Ben, with my Rheumatoid Arthritis I do remicade. I was offered humira, which is self injected, but liked the idea of the remicade because it was a infusion under a Doctors care. It takes about two hours every 8 weeks, and works great. I've never had trouble with my insurance to pay for it. Again prayers for your DD for a Long and Full Life!

 

[theduck619]

Gentlemen,

I don't post much here anymore, spending more time on the Facebook side of things, but I still follow this thread on a regular basis. I've offered up my prayers in support of you all, and now it's my turn to ask for the return of the favor.

DD12 has been "sick" for almost a year now. It really got bad last year at Christmas (while we were at WDW no less) and we have had a dozen trips to the Children's Hospital at the University of Iowa over the last 10 months. It's been a long process of eliminating things and running tests, but they finally gave her a diagnosis yesterday.

She has a fairly rare disorder known as Takayasu's Arteritis. (I have always said she is 1 in a million and now I have medical documentation to prove it). It isn't life threatening at this time, and shouldn't become so if they stay on top of the condition, but she is in for a lifetime of medical treatments and routine testing to make sure things are under control. On one hand I am glad to finally have a name to what has been going on, but on the other hand that name finally shows our fears - that this isn't something that is going to go away.

Fortunately, we have good insurance that SHOULD pay for most of this (we have to fight an "unauthorized drug" battle since the FDA hasn't approved humira to treat this disease since it is so rare). Even MORE fortunately, we have good family and friends (you gentlemen included) to help us keep grounded.

Please pray for energy to keep positive in this whole ordeal.

Ben, our prayers are with DD and your family

 

[GoHerd1028]

Gentlemen,

I don't post much here anymore, spending more time on the Facebook side of things, but I still follow this thread on a regular basis. I've offered up my prayers in support of you all, and now it's my turn to ask for the return of the favor.

DD12 has been "sick" for almost a year now. It really got bad last year at Christmas (while we were at WDW no less) and we have had a dozen trips to the Children's Hospital at the University of Iowa over the last 10 months. It's been a long process of eliminating things and running tests, but they finally gave her a diagnosis yesterday.

She has a fairly rare disorder known as Takayasu's Arteritis. (I have always said she is 1 in a million and now I have medical documentation to prove it). It isn't life threatening at this time, and shouldn't become so if they stay on top of the condition, but she is in for a lifetime of medical treatments and routine testing to make sure things are under control. On one hand I am glad to finally have a name to what has been going on, but on the other hand that name finally shows our fears - that this isn't something that is going to go away.

Fortunately, we have good insurance that SHOULD pay for most of this (we have to fight an "unauthorized drug" battle since the FDA hasn't approved humira to treat this disease since it is so rare). Even MORE fortunately, we have good family and friends (you gentlemen included) to help us keep grounded.

Please pray for energy to keep positive in this whole ordeal.

Ben your daughter and your entire fmaily will be in our prayers. I am thankful that a resolution has been found for her health situation. Not knowing what the problem is so scary in and of itself. Please keep us posted as she fights this!!!

 

[NWDAD]

Ben, you and your DD and your family are in our prayers.

Kevin

 

[papamouse1]

Ben.. your daughter and your family will be in our prayers. I am living proof that a "lifetime diagnosis" does not have define our lives. Crippled at a young age from an incurable spinal disease, I have lived a pain-free life due to the grace and mercy of God.

Hang in there, and cherish every moment. Life can be tough, but experiencing it with the ones you love is truly priceless

 

[jbschafer]

Ben.. your daughter and your family will be in our prayers. I am living proof that a "lifetime diagnosis" does not have define our lives. Crippled at a young age from an incurable spinal disease, I have lived a pain-free life due to the grace and mercy of God.

Hang in there, and cherish every moment. Life can be tough, but experiencing it with the ones you love is truly priceless

Thank you EVERYONE. You don't know (or maybe you do) how much better it can make someone feel just to know that there are some folks out there listening to your troubles and feeling your pain even if for just a little bit. DD is a rockstar. When we sat her down to talk to her on Friday night there were tears obviously (from all of us). But Saturday afternoon she and my wife did a little bit of reading on the internet and when they were done she turned to my wife and said "Don't worry mom. I'm going to be just fine."

We will learn from her strength.

 

[Goofy + 3]

But Saturday afternoon she and my wife did a little bit of reading on the internet and when they were done she turned to my wife and said "Don't worry mom. I'm going to be just fine."

We will learn from her strength.

This made me smile. Good for her.

 

[wasnotafan]

Thank you EVERYONE. You don't know (or maybe you do) how much better it can make someone feel just to know that there are some folks out there listening to your troubles and feeling your pain even if for just a little bit. DD is a rockstar. When we sat her down to talk to her on Friday night there were tears obviously (from all of us). But Saturday afternoon she and my wife did a little bit of reading on the internet and when they were done she turned to my wife and said "Don't worry mom. I'm going to be just fine."

We will learn from her strength.

That courage and attitude will serve her well in life.

 

[AirGoofy]

To give you an update, DW is able to chaperone oldest dd for her Washington DC school trip. I know lots of kids go every year without a parent from here and everything goes well, but I just feel safer with DW being there. Thanks for the prayers.

 

[Goofy + 3]

To give you an update, DW is able to chaperone oldest dd for her Washington DC school trip. I know lots of kids go every year without a parent from here and everything goes well, but I just feel safer with DW being there. Thanks for the prayers.

Good news. I'm sure you'll sleep better knowing DW is there.

 

[wasnotafan]

To give you an update, DW is able to chaperone oldest dd for her Washington DC school trip. I know lots of kids go every year without a parent from here and everything goes well, but I just feel safer with DW being there. Thanks for the prayers.

Good news. I would feel the same.

 

[Cinderella's Fella]

To give you an update, DW is able to chaperone oldest dd for her Washington DC school trip. I know lots of kids go every year without a parent from here and everything goes well, but I just feel safer with DW being there. Thanks for the prayers.

Good to hear Norm. You have my number, if they need anything while there.

 

[AirGoofy]

Good to hear Norm. You have my number, if they need anything while there.

Yes, I do and will use it if needed. From what I have been told, they rent out all the rooms on one floor of a hotel and hire security to stay at the stair exit(s) and elevator(s) and children are not allowed outside their rooms. And, other guests aren't permitted on their floor. Again, makes me feel better, but I am still glad DW will be there. And, I'm glad to know someone else nearby if needed.

 

[jbschafer]

Just an update to let you all know that it took about six weeks but we had a truly dedicated doctor and a great HR staffer at my work who have been dogging the insurance company for the past six weeks and we just found out today that they have finally approved payment on DD's medications for the next 6 months. We will have to fight them again, but it is a start. She has been responding very well to the last six weeks of what they had approved and I am becoming an expert in at-home injections. We will start the taper and swap out from the stop-gap drugs to the main drugs this weekend.

SO... while we are all celebrating THANKSgiving tomorrow I will be a little extra thankful for the great medical care and solid insurance coverage (even if we have to fight them) that is keeping my daughter with us this year! (Well, that and the fact we have a bit over three weeks on our next trip countdown.)

 

[GoHerd1028]

Just an update to let you all know that it took about six weeks but we had a truly dedicated doctor and a great HR staffer at my work who have been dogging the insurance company for the past six weeks and we just found out today that they have finally approved payment on DD's medications for the next 6 months. We will have to fight them again, but it is a start. She has been responding very well to the last six weeks of what they had approved and I am becoming an expert in at-home injections. We will start the taper and swap out from the stop-gap drugs to the main drugs this weekend.

SO... while we are all celebrating THANKSgiving tomorrow I will be a little extra thankful for the great medical care and solid insurance coverage (even if we have to fight them) that is keeping my daughter with us this year! (Well, that and the fact we have a bit over three weeks on our next trip countdown.)

Glad to hear that things are headed in the right direction and envious of your upcoming trip!!!

 

[AirGoofy]

Just an update to let you all know that it took about six weeks but we had a truly dedicated doctor and a great HR staffer at my work who have been dogging the insurance company for the past six weeks and we just found out today that they have finally approved payment on DD's medications for the next 6 months. We will have to fight them again, but it is a start. She has been responding very well to the last six weeks of what they had approved and I am becoming an expert in at-home injections. We will start the taper and swap out from the stop-gap drugs to the main drugs this weekend.

SO... while we are all celebrating THANKSgiving tomorrow I will be a little extra thankful for the great medical care and solid insurance coverage (even if we have to fight them) that is keeping my daughter with us this year! (Well, that and the fact we have a bit over three weeks on our next trip countdown.)

That is good news this Thanksgiving.

 

[AirGoofy]

Another update. My Inlaws, who had th house fire, were able to move back in their house for Thanksgiving. They didn't cook there as they travelled to other family members, but they were thankful to be back home. Thanks for the prayers.