Frustration again. We went to a parent support meeting last night on stress management. One of the areas that they dealt with was medical expenses and stress. The presenter wanted to meet with us specifically after because we were the only family with major medical expenses. She told us about this program that the state of SD offers to help with noncovered medical and travel expenses that she said would be able to help. I contacted them today because they have a list of conditions that qualify-go figure-CMTC isn't listed. I emailed them to see if there is any help if it is not on their list. The lady e-mailed me back and said CMTC is a syndrome so they can't really help us. They will pay for travel for asthma and diabetes patients (even when they are close to home) but nothing for us even though we travel much farther. She said we could fill out an application but from the input I got from her none of Becca's stuff falls into any of their categories except maybe cardiology. And they said her cardiac issues might not be severe enough but it would depend on how the doctor coded it. I have a kid with asthma maybe I should sign him up! I can afford his stuff. It is so frustrating to navigate this!
Rather than listing her condition as a syndrome, perhaps listing each expense as a separate line item might help. Also, ask if they have a parent advocate, "ombudsman", or volunteer to help parents... sometimes those people outside of the system know the loopholes.
They told me that they have to consider her as having a syndrome. I didn't understand that because that isn't the term that has been used by any doctors and they have been careful to say she does to have any syndromes related to the vascular condition so I was confused by that. There doesn't seem to be anyone else in the group that I can talk to. The parent advocacy group in SD is who told me to contact this group. Basically they made it seem as if it was something they didn't know about they didn't want to deal with it. I am not trying to get something if I am not entitled but I am getting denied by all groups in SD. I was told that one group couldn't help us because she doesn't have a developmental disability and so then I was referred to the chronic health conditions group. I guess to them she is not sick enough for a chronic health condition so I am not sure where Becca fits. The part that makes me made is that if my husband or I quit working becuase of this we could probably get help but since we are both working hard to pay our way in life then we are getting the run-around.
An amazing update on little Becca. The speech therapist is teaching Becca sign language because she is a visual learner and because we don't know what will happen with her hearing at this point. They have met twice. She is teaching our older girls while teaching her because she goes to our daycare for services. The older girls, our son, my husband and I have been using them with her. Becca started using her signs tonight. It was completely amazing so see this 8 1/2 month old be able to sign to get what she wanted-more food!
Sign (even if not offical sign language) is a great tool for any baby. You may notice (our will avoid) very few outbursts, frustration type issues because she knows how to communiate to get what she needs/wants.
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How old is Becca? I saw you posting before.. I am just curious on how old since my husband keeps telling me they would "hear" if our daughter had a heart problem.. i have seen a few posts where children get mri or mra and they find a hole...
Becca is 13 months old. Her heart issues weren't discovered until she was six months old. We had originally went to Mayo to get a diagnosis for her CMTC (we had suspected it based on the research I had done and her previous diagnosis). The dermatologist that diagnosed her had ordered and echo. as a precautionary measure. That is when they found her three holes. None of her doctors had heard a murmur before that but have since heard it. My thought is that they are now just listening more closely for it since they know her diagnosis. My brother also has a hole in his heart and it wasn't diagnosed until his was a young adult. His was diagnosed when he went into heart failure and because there has been so much damage prior to his diagnosis it can't be repaired. From people I have talked to there are a lot of people who do have holes that don't know it. The problem is that by the time most are diagnosed there is already damage. Becca's were diagnosed before she had any damage and will be watched very closely so that her heart doesn't become damaged. We are very thankful!
Just an update on CMTC and heart issues. In July I received a Facebook post from Lex (the CMTC expert from the Netherlands) and he had never heard of a case of CMTC and heart issues. He wanted us to come in July for an evaluation by his team but unfortunately when they were in the US was just a couple of days after I got out of the hospital. I do think that she needs to be evaluated by their team because there are all these odd things with Becca that just keep happening but that don't add up. At this point I guess we will have to wait until next summer and then see if we can still go and have her evaluated (I believe they come each summer.).
An international charitable organization that networks families affected by a vascular birthmark, tumor, or syndrome to the appropriate
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