Wednesday, August 25, 2010

GROUNDHOG DAY



This is my life. Waking up day after day and having the same problems.

Thursday, August 12, 2010

Shriners: Part III

How many updates can a person have on a situation? Turns out a lot since this process is so long and tedious. I'll get right to it. Save you the trouble of having to read through all the boring details. Holland didn't get accepted to Shriners. So very disappointed.

I took Egypt and Romania over to my mom's house the night before because we had to leave the house by 7 and I didn't want her to have to get up that early. It took under an hour to get there, but glad I allowed myself the extra time for parking and navigating the building. It's so confusing up on "Pill Hill".

I had most of his records sent over before the appointment but found out the day before that the neurosurgeon's office had not sent over any of his film. It would have been nice after getting all the requests for records to be sent that they would have said "by the way, we won't be sending over any of your x-rays, MRI's, or CAT scans so be sure to request those through the records department." Silly me thought that the doctor that actually ordered all those tests would have them included in his file. So I had to pile the kids in the car and drive 45 minutes up to Emanuel, walk in a big circle to finally find the film library. The woman that I spoke to was so nice and had everything ready for me.

After filling out some more forms, we were given a pager that would beep when they were ready for us. I knew that Holland was anxious because he wouldn't go play any video games. We didn't wait very long and were taken back to get weighed, measured and blood pressure taken. Once in the room, more questions, more information entered into a computer and then finally a doctor came in. He did a quick once-over, looking at how he walked and looked briefly at his back. Then the big-wig doctor came in and asked "what can we do for you?" Well, isn't it obvious? I'm here to get help for my son with spina bifida and encopresis problems. But apparently you have to be very specific with what you ask for. After doing some x-rays on his feet because of what he thought was bone sticking out of his feet, we were told that there was nothing they could do to help us. My request for orthotics was a waste of money and to just go buy something at the grocery store to put in his shoes. I know from the inserts he had before that it helped with his leg pain. His ankles are so weak, that they turn inward. Not only that, he's pigeon-toed and has no arch.

But I honestly believe that because I didn't come right out and ask for physical therapy or occupational therapy, they didn't offer it. They knew from our medical treatment history that we had done that. We had also tried exercises at home, but he's in so much pain, I can't do them with him. I really don't understand why he wouldn't be a good candidate for treatment. But I know they are used to seeing very disabled kids on a daily basis. Why else would two different people say to me "oh look, he can walk!"? I guess because he's not crippled, we really can't benefit from their services. Because everything is free, they only want the most severe cases for treatment. Which makes it very hard on me.

The last doctor that came in talked to me about the encopresis problems and the celiac. I think he just wanted to see how much I knew (which is a lot from doing this for 2 1/2 years). I found out from him that the C1 vertebrae that has a huge gap at the bottom of his spine, is the vertebrae that controls bladder and bowel functions. Okay. Sorry. But doesn't that just fit in with a spinal cord problem and shouldn't he be treated for this malformation? I didn't find out until the very end that there is another option for people suffering from constant bowel problems. And I'm talking constant. I've thrown out 5 pairs of underwear just this week (TMI, I know, but you get what you pay for). This doctor told me about some tube that's inserted and every two days or so, the person sits on the toilet and the tube gets emptied out automatically. Then there's no accidents because he gets cleaned out every couple of days. Why was this never brought up when I was talking to Mr. Big-Wig? When a kid has an obvious bowel problem that hasn't been cleared up with a tethered cord surgery, wouldn't it make sense that it's probably related to the spina bifida and NOT the celiac disease? I just don't understand what is going on. What is the plan here? For Holland to continue suffering? For me to clean out poopy underwear for the rest of my life?

Someone throw me a flashlight because there's no light at the end of this tunnel.

Friday, August 6, 2010

Another Day, Another Window

We've had two sessions with our new doctor for Holland. And I really like her. She's a nurse practitioner, but she has her Ph.D and she can prescribe meds as well as counsel. Hoping to get some bang for our buck. I gave her lots of paperwork on Holland and she was impressed with all that I brought (finally!, Someone who appreciates what I do!) At our second appointment, she had had time to look through everything and we were able to discuss med changes, what meds he'd been on and which ones I thought didn't work. We also talked about an ADHD med, but that will come later, if at all.

I had to email her for some counsel because Holland broke another window. This time my sister had come over every morning during this week for about 4 or 5 hours to help me clean, organize and work on Holland's angry outbursts. He had been told he couldn't play with friends due to prior behavior. When a neighbor girl came over to invite Egypt to come play in their sprinkler and he was told (repeatedly) that he couldn't go, he got physical with me. My sister ended up stepping in and basically after not being able to stop the violent behavior, we put him in his room and waited. Much of his belongings had been removed, but we couldn't remove his window and he threw a ceramic piece he had made into the window several times and punched a big hole in the back of his door (again). I wish he would have smashed the old computer in his room. Then I wouldn't have to deal with husband being mad that he had to replace another window. Which he didn't even want to do. I told him he needed to remove the glass because Holland was starting to pick pieces off and saving it for his spear to injure deer in our backyard. Our doctor said we could increase on of the meds he was on and that should help slow him down. Which sounds really awful when you just hear that. But after being hit, kicked, spit on, called names and yelled at, then having him break a window, can't say I'm complaining about the slowing down part.

I also have made many phone calls trying to find us more help. My insurance doesn't cover any kind of day treatment program and I doubt any in-home assistance. I have several calls out to county agencies seeing what we qualify for. Hoping we can get some respite in-home care because if this doesn't get better, I'm admitting myself into a hospital to be taken care of.