Post # 1
Well I guess when it rains it pours. We have been doing physical therapy and occupational therapy for a year now for our little guy. He suffered a stroke in utero. It was a significant ischemic stroke that involved the middle cerebral artery and basal ganglia. He has been now diagnosed with cerebral palsy and right hemiplegia. I am literally in tears as I write this. I have the biggest lump in my throat even thinking about this. At his therapy appointment last week, we were told that he will need a specialized walker called a gait trainer and an AFO brace in order for him to learn to walk properly. The brace is because he hyper extends his knee when standing. He is such a happy guy and this breaks my heart. I have no clue where I am going to get this money for his walker from. Since it has to be specially made for him we cant get a used one. Our insurance is denying it because they don’t feel it’s necessary even though his therapist has suggested it. They will partially cover the brace which he will have to be fitted for. The brace is $900 and his walker is $3500. I have asked my parents to help but my dad is retired and they really can’t afford to help much. I just don’t know what to do.
I started a page on GoFundMe but I don’t think that will work.
I feel tremendous guilt everyday because there had to have been something I did or didn’t do to cause his stroke. Even though all the doctors and therapists have said it was a freak accident.
Anyone have any ideas? I don’t want to put anything on Facebook or do a public fundraiser only because we haven’t really told a lot of people about his stroke because the people we have told all give me looks like it was my fault.
Post # 3
@mrskisstobe: I am so sorry that you are going through this. I dont really have any advice – but I just wanted to let you know that I am praying for you and your sweet little boy!
Post # 4
cute little guy! I’m sorry to hear this — have you been assigned a case manager by your insurance? sometimes they can help you navigate the claims. Also talk to your doctors/therapists as they sometimes know of alternate options.
unfortunately there is a good chance that he will be needing lots of care and I think that you might need to consider turning to friends/ family for help – I know many friends who needed help after cancer and other diagnosis that really hit them (and their wallets) very hard and in almost every case people were very generous. I know its hard to accept charity but think about your baby boy and how that money will help him
Post # 5
I suggest approaching the Shriners or Variety Club. Both of these organizations do tremendous work with children.
Iowa Shriners http://www.zagazigshrine.org/
Iowa Variety Club http://www.varietyiowa.com/
Post # 6
First, it is not your fault. My son has autism and I have spent years trying to figure out if there was anything that I did to contribute to his disorder. The guilt will only hold you back from enjoying the blessing that is your son.
Second, put your boxing gloves on because its time to fight with the insurance company. I know from experience with my son that it can be devastating and overwhelming to deal with them but you can do it. Start writing down every single thing about his therapies. Include quotes from his therapists. If you can prove that the long term cost would be lower if he received adequate medical equipment than it would be to extend his therapy to teach him to walk without it, then you may have a fairly easy battle. If not, don’t give up. Hound them. I called my insurance company every single day for 3 and a half weeks until I got them to approve an out of network appointment with a leading specialist in another city. Don’t give up. You are his advocate.
In the meantime, definitely check into organizations that work with kids as @julies1949: suggested. Don’t be ashamed to ask for help. Also don’t be ashamed to call medical providers and equipment companies to discuss your financial status versus the cost of treatment/equipment. Some places offer payment contracts, reduced rates, and even occasional free services through grants.
Do not let anyone make you feel bad. You’ve brought a beautiful baby boy into this world and therefore, you’ve done us all a favor!!
Post # 7
I am so, so, so sorry. Your son is beautiful and I wish you all the best.
Have you tried contacting any children therapy charities? Sometimes they can help you with financing, or even sometimes give out medical equipment to children in need.
I would definitely call around — children’s hospitals, charity, therapy teams? One of them might be able to send you in the right direction where you might be able to get it cheaper, or where you might be able to get one for free or at low cost.
All the best to you & yours.
Post # 8
@mrskisstobe: Oh my gosh :(. I’m so sorry that your family is going through this! I don’t really have any advice, I just wanted to let you know that the hive is most definitely thinking of you, your SO and your beautiful baby boy.
I would also say that you should definitely see about finding a support group, because you need to talk to people who get it.
Post # 9
Awe, you made my heart melt he is such a cute little guy. Definately try to see if shriners or even see about other types of places that help children out. I am going to PM you my company’s Children’s foundation form. They help funding for exactly what you are looking for.
Post # 10
I am so sorry you guys are going through this. He looks like an amazing little baby boy!
Just know we are praying for you guys!
Post # 11
Oh I am so sorry to hear about your baby .he is so cute.I wonder how much you could raise if willing Bees sent you five dollars each? I don’t have much,but could swing that.Give me the info on the fund you have established.
Post # 12
@kellmerr: He is such an amazing little fighter. He never cries or fusses during therapy. Does what is asked of him. Here is the link:)
Bless your heart! http://www.gofundme.com/20xqnc
Post # 13
@Sassygrn: Thank you so much for that info! I will definitely check it out!!
Post # 14
@BridieBea: I am part of the CHASA site which is an AWESOME site for parents who have kids with hemiplegia and it’s a great group. 🙂
There isn’t a group close to me but online works.
Post # 15
I have been contacting tons of places and some have lists so long of kids who are far worse than my little guy that I would rather try and get the money together myself than take it away from another child who needs it more than Z.
I have been fighting with our insurance company and their “logic” is that since he is not being diagnosed as delayed yet they won’t pay. My theory and the therapist has the same theory, why wait till he is behind when we have the opportunity to avoid that and help him now. Why play catch up?? His brain is constantly changing and making new pathways around the damaged parts that now is the time really be aggressive.
Post # 16
((hugs)) to you and your little one! I hope you’re able to find some help with the resources the other bees have suggested.