Wednesday, September 26, 2012

The waiting is the hardest part

One of the things that's most frustrating to me is about our Medicaid system is the constant waiting. For example; we'd been using a product on Cassie's back that we weren't thrilled with the results. It seems to be pulling at the skin and creating more blisters. After the Patient Care Conference, we were given some samples of a different product that works great and would suit her needs. It doesn't pull on the skin the way the other one does. So we have the doctor write a prescription that gets sent to Medicaid, and we wait for them to approve it. And we wait. And wait. Sometimes 6-8 weeks. In the meantime, we don't have this other, superior product, and Cassie has to deal with new, painful blisters every day from the old product. And it's like this for every change we make in our wound care routine. Every new product, or every time we need to increase the amount above the approved limit due to increased blistering, infection, etc. It makes me crazy. If it was their child, or their skin, I don't think the paper pushers would want to wait 6-8 weeks for relief.

Thursday, August 9, 2012

Friday, June 22, 2012

Thursday, June 21, 2012

Monster High makes the girl happy

Thanks to everyone who had donated towards Team Cassie, I was able to get Cassie the new Monster High playset the day it came out. Cassie and her friend Rachel did a video review, and you can see how excited and happy Cassie is:

(I can't get the video to imbed so it's just the link for now)

Wednesday, June 6, 2012

Hitting the wall

This post isn't strictly EB related. It's more about me than the kids. It's about how I have reached the point where I don't think I can cope with one more thing. Every time I say that, something else happens, and somehow my heart still beats and the world doesn't stop and I keep coping because ultimately, one doesn't really have a choice. But today I feel like curling up in my bed and never getting up again.

Kids are expensive. Moving is expensive. Raising a special needs child is expensive. Raising two special needs children on nothing but Social Security and an adoption subsidy is impossible. I put my son in an expensive private school because it was the only way I knew to save him, to save our family. And it worked. He thrived. He felt accepted and capable for the first time in his life and his grades rose and his self esteem improved and the anger gave way to the sweet, smart, funny guy that my son is today. But I made the decision to place him in that school before we lost our rental house and had to move, and our rent increased a great deal because we had a sweetheart deal before, and finding that again wasn't possible. Add in moving expenses like the truck, the gas for the truck, the reconnect fees for the utilities, and I started April well into the red financially. That carried over into May, and then Cassie got sick. I spent money I shouldn't have; I bought her dvds, I ordered pizza, I bought her quart after quart of mashed potatoes from Picadilly because it's her favorite thing to eat. And I bought diapers, and chux pads, and Miralax and Ensure and Coconut Oil and Lactofferin and liquid multivitamins and protein powders. Anything I could to try to get her skin to heal. I wasn't careful. I justified it by saying I was too tired to be careful. It was an excuse, and it came back to haunt me today when my rent check bounced. My third month here, and I've bounced my rent check. Take out the NSF fees and the late rent fees and well... I'm ruined. Well and truly. I don't have the rent money. And when I do get it later in the month, I'll have the water bill and the sky-high light bill from trying to combat the heat and more food to buy for hungry kids and more gas to put in the hungry van and another tuition payment and I feel like I'm trying to fill the ocean with a eye dropper.

After another night of not nearly enough sleep, due to Cassie vomiting in the middle of the night then spiking a fever then needing pain medication and so on and so forth, I can't cope. I can't see a bright side. I can't see a way out. I don't know what to do. I don't have the energy to do anything else. Wait for them to evict us. Tell Walt he can't go back to his wonderful little school and see the crushing disappointment on his face and then watch him drown trying to keep up in a public school system that makes no accommodation for his needs. Wait in fear for the anger and resentment to come back as he's bullied and teased and feels stupid and worthless because he can't pass the LEAP test. Throw one child under the bus because the other needs me more. That's what I feel I've done their whole lives. Finally, finally I felt I had found a way to give Walter what he needed, and I have to take it away from him. I feel like my poor kids have never had anything their whole lives that wasn't taken away from them before they were ready to let it go. I have never been able to give them anything that I didn't eventually have to take away. Nothing but myself, and god, if that doesn't make you cry for them, nothing will.

I don't know what to do but surrender. To accept that the bottom is falling out let it happen. I don't have the energy or fight to do anything else. I don't know where or when we'll land. I don't know what's going to happen. I did this. I put myself in this situation. I accept full responsibility for it. I made my bed. I just wish my poor kids didn't have to lie in it.

Saturday, May 26, 2012

Trying for some authenticity

I haven't really posted here because I find it frightening to expose myself this much, to be this vulnerable and open. As things have unfolded in our lives over the last several weeks, I find that I want to get over that. I want to find the raw, vulnerable, honest writings of parents like myself, of families struggling with questions of life and death, and they just aren't out there. Not the ones that speak to me. So from here on out, I'll try harder to create one, in hopes that it makes someone else feel less alone.

Right now I struggle daily with the constant push and pull between what constitutes aggressive care and what one calls a "natural death". I don't want to lose my little girl. I want to fight, and keep her with me, but I have to be honest and ask myself what I think she has ahead of her to keep fighting for. More blisters, more pain, more chronic, non-healing wounds, more disfigurement, more exhaustion. Then cancer, amputations, and death. I don't have a crystal ball. I have no idea how long she might have before her quality of life leaves no question as to which direction we should take. She says that she still wants to fight, that she wants to live, at the same time that she refuses all the interventions that give her the best chance of that happening. But what do I expect? She's fifteen years old. What fifteen year old girl is going to say "I give up"? So how do I know? Which thing does she really mean? Do I try every possible intervention within her very clearly defined parameters of no needles, not prodding, and no hospitals? Do I stop mixing new ointments, giving supplements, pumping her full of vitamins, stop everything but enough food to keep her from feeling hungry and her pain medication? I don't know. I DON'T KNOW. And that's what keeps me awake every night.

Wednesday, May 2, 2012

Butterfly Love.....: Please HELP Logan & Cassie.........

Butterfly Love.....: Please HELP Logan & Cassie.........: Logan England of Baton Rouge, LA ha...