Over the last year alone, my brain has been bombarded with information from the boys' specialists that I didn't have a chance to research and let sink in. I've just been living it. This creates an issue where I am uncomfortable in my ability to explain it well to others. I just know what we are dealing with, and I know my mommy intuition, and I remember the general statements from the specialists.
So we go to the local Drs with the boys and still have issues with their cookie cutter approach. We use the therapies available to them because of their disabilities... ST and OT (We stopped PT because of their muscle atrophy getting worse with excursion.) are really good, but DD is even more cookie cutter than years ago when there was extremely limited knowledge of generalized disabilities, let alone the endless syndromes they find on a daily basis now... that don't address what's really going on and just get in the way of progress or worse. It's been like beating our own heads against the wall, trying to get these people to understand seizures and how they effect the brain, and REGRESSION.
We listen to people wonder why we can't go to parties or do extra projects... or just have a hobby. They look at us like we are just making excuses or lazy or something.
I could go on. There's a pretty long list. It's not necessary. And I'm sure I'd leave something out, spacing it until I experience it again.
The fact is, it's been a difficult side effect of all this, that causes some pretty frustrating and annoying issues. The biggest ones being what seems like failed communication with people who can help or hurt our boys, and isolation.
The last two months we've gone through something like 8 Dr visits trying to get help for Jace's inflamed Gtube stoma. Four months after surgery, it was finally cauterized. Something I was originally told by the wound nurses at PCMC needed to be done by a Dr. Several creams later... and runs of antibiotics for the MRSA it ended up with... Their real Ped is typically better, but it's harder to get into him. But it was left for so long, that it ended up systemic and cellulitis. Not for lack of us taking him in to be seen!
Recently I was reminded by yet another DDA that they don't believe parents' statements regarding their disabled children's needs. They said, "parents exaggerate their child's conditions and needs."
I still don't get why professionals assume parents are lying or exaggerating... who does that?? I mean seriously, how would parents doing that help their situation? I just find it a disgusting assumption on the part of anyone dealing with disabled children in a professional manner. Not to mention the risk that puts the children in. We've experienced that way too much over the years... trusting people with our boys only to find out later those people had completely ignored our boy's needs and put them serious medical danger. Always believe the parents, because they know the child WAY better. Others only see a tiny view of the child. That's not enough to really know.
I wish I could go around flipping out a letter from my boys' specialists.
It really is that frustrating. I know for sure it would have saved Aidan a lot of pain and misery had we had access to such an item.
Having the Rainbow Kids Team on board is supposed to help with that issue and others. Palliative care. Something I didn't even know existed. I pray it actually does help. I honestly don't remember if anyone asked if we wanted it for Aidan, doesn't ring a bell. But if it helps with Jace, we will use it for Damon as well.
Yesterday when I received a call from the geneticist's assistant, my heart skipped a beat. It's been 6 months since the blood was drawn for the genome sequencing, and we are desperate for answers. It was only to verify medication information for pre-auth purposes. Disappointing.
Last night I put on Aidan's music, while keeping Jace and Damon safe from Lincoln's work on the basement. We felt Aidan with us. I knew even though I couldn't see him, that he was right here. Jace and Damon expressed, for over an hour, how they miss him so much. Jace wanted one of Aidan's photo's from the wall, so he took it down. Immediately, Damon ripped it out of his hands, and wouldn't let Jace have it back, or me put it back on the wall. Saying over and over, "I just miss Aidan." It was so heartbreaking and terribly sweet all rolled into one.
So we go to the local Drs with the boys and still have issues with their cookie cutter approach. We use the therapies available to them because of their disabilities... ST and OT (We stopped PT because of their muscle atrophy getting worse with excursion.) are really good, but DD is even more cookie cutter than years ago when there was extremely limited knowledge of generalized disabilities, let alone the endless syndromes they find on a daily basis now... that don't address what's really going on and just get in the way of progress or worse. It's been like beating our own heads against the wall, trying to get these people to understand seizures and how they effect the brain, and REGRESSION.
We listen to people wonder why we can't go to parties or do extra projects... or just have a hobby. They look at us like we are just making excuses or lazy or something.
I could go on. There's a pretty long list. It's not necessary. And I'm sure I'd leave something out, spacing it until I experience it again.
The fact is, it's been a difficult side effect of all this, that causes some pretty frustrating and annoying issues. The biggest ones being what seems like failed communication with people who can help or hurt our boys, and isolation.
The last two months we've gone through something like 8 Dr visits trying to get help for Jace's inflamed Gtube stoma. Four months after surgery, it was finally cauterized. Something I was originally told by the wound nurses at PCMC needed to be done by a Dr. Several creams later... and runs of antibiotics for the MRSA it ended up with... Their real Ped is typically better, but it's harder to get into him. But it was left for so long, that it ended up systemic and cellulitis. Not for lack of us taking him in to be seen!
Recently I was reminded by yet another DDA that they don't believe parents' statements regarding their disabled children's needs. They said, "parents exaggerate their child's conditions and needs."
I still don't get why professionals assume parents are lying or exaggerating... who does that?? I mean seriously, how would parents doing that help their situation? I just find it a disgusting assumption on the part of anyone dealing with disabled children in a professional manner. Not to mention the risk that puts the children in. We've experienced that way too much over the years... trusting people with our boys only to find out later those people had completely ignored our boy's needs and put them serious medical danger. Always believe the parents, because they know the child WAY better. Others only see a tiny view of the child. That's not enough to really know.
I wish I could go around flipping out a letter from my boys' specialists.
It really is that frustrating. I know for sure it would have saved Aidan a lot of pain and misery had we had access to such an item.
Having the Rainbow Kids Team on board is supposed to help with that issue and others. Palliative care. Something I didn't even know existed. I pray it actually does help. I honestly don't remember if anyone asked if we wanted it for Aidan, doesn't ring a bell. But if it helps with Jace, we will use it for Damon as well.
Yesterday when I received a call from the geneticist's assistant, my heart skipped a beat. It's been 6 months since the blood was drawn for the genome sequencing, and we are desperate for answers. It was only to verify medication information for pre-auth purposes. Disappointing.
Last night I put on Aidan's music, while keeping Jace and Damon safe from Lincoln's work on the basement. We felt Aidan with us. I knew even though I couldn't see him, that he was right here. Jace and Damon expressed, for over an hour, how they miss him so much. Jace wanted one of Aidan's photo's from the wall, so he took it down. Immediately, Damon ripped it out of his hands, and wouldn't let Jace have it back, or me put it back on the wall. Saying over and over, "I just miss Aidan." It was so heartbreaking and terribly sweet all rolled into one.
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