Friday, August 29, 2014
Hello all my fellow supporters,
It has been a couple of busy weeks here. Elizabeth had a huge turn for the worse with her Chronic Fatigue. To the point, where we had a few days she could do nothing for herself. She has spent 90 percent of the last 14 days in her wheelchair. I struggle with balance during these times. How do I find time to workout when I am having to be a 24 hour nurse. And why is it that salad NEVER relieves the stress like chocolate or ice cream? I mean, I never , ever crave healthy food when going through a bad time. Nope , for me, it is sugar , sugar, sugar.
Then we had a doctor appt. with her neurologist. The great news is that her seizures are under control and that she has finally adjusted to the new meds. The bad news is , she has hit a wall developmentally. For example, she will be 4 in October, but she still has a very limited vocabulary, she is not helping with dressing at all (think rag doll), and she is still unable to potty train. This is all related to her severe autism, and there really isn't anything beyond what we have been doing, that we can do.
You would think that I would be struggling in my Christian walk. But, Im not. God, is the one constant, that has kept me going through all of this. I know God is watching out for me, and that HE loves Elizabeth even more so than I do. I also know, that if she dies, which is always a possibility with all of her health concerns, that she will go right up to Heaven, and be in no more pain. I mean, really, how awesome is that?
If you are reading this and you are a believer , please pray for our little girl. It would mean so much to me.
Have a Blessed day!
Tuesday, August 12, 2014
Well the good news is Elizabeth has FINALLY adjusted to her seizure meds, and her appetite is back with a vengeance. She is still struggling with daily fatigue, due to Chronic Fatigue Syndrome. Combine that with frequent fevers, and the challenges of autism, well, she is one struggling little girl.
This summer, though , we were able to find her a happy place, which we have gone to once a week. We go to our local Six Flags, which is awesome for people like her. Six Flags, is one of the few amusement parks left in the nation that gives an immediate access pass to those among our population with cognitive disabilities (autism , down's syndrome, etc). What does this mean? It means that she has no wait at any of the rides. She gets immediate access to all of the rides she wants. (Disney used to do this but, due to the elite among us hiring "autistic" tour guides to take them through the lines, Disney stopped due to abuse of the system. ) They also have a Looney Tunes Character show at Six Flags, which she watches every time she goes, and she gets to spend time with the characters after every show. Not to mention the paths are very, very wheelchair friendly, no steep inclines. I love seeing her there. She forgets all of her problems for a while, and just enjoys being a kid. It is her "safe " place. And, I get to forget for a while, the awful prognosis, and just enjoy being her mom. So, we are off for another day of fun tomorrow. Wonder if I can count walking and pushing her wheelchair all over that amusement park as cardio :)?
Saturday, August 02, 2014
I am feeling frustrated and overwhelmed..... Elizabeth our special needs child, has intense seizures. She was on a medication called trileptal, side effects were minimal, but seizures were not controlled. So, we switched to topomax. Topomax has been brutal for her . Her chronic fatigue has gotten much worse, and she has lost 9 lbs in 30 days (she is only 3) no appetite at all. It was hard enough to get her to eat before topomax, due to her autism, but now it is so much worse. Then again, with immune deficiency , I worry that her appetite loss is not just because of the medicine, but what if something worse is going on? We go back to the doctor on August 27th, these struggles can be so hard. I hate seeing her go through this. It is so tiring and exhausting, more than anything, though, I hate seeing her slowly withering away. I keep telling myself if God can bring you to it, He can bring you through it.
Sunday, July 20, 2014
Well, I haven't been active here in over 18 months now. Life has been crazy. Our youngest, Elizabeth is struggling with major health issues. She has been diagnosed with Autism, ADHD, Epilepsy, Chronic Fatigue Syndrome, Immune Deficiency Disorder, and genetic condition undiagnosed (which means that they are still figuring that one out). Her prognosis is not good. Every day , is a struggle for her. I let my work out go, I let the diet (lifestyle change ) go. I let everything go. I even got mad at God for a while. I was very depressed.
I woke up and decided I will not torture my body anymore. I will not let Elizabeth's battle beat me. I will get strong, so I can be stronger for her. And, I am happy to report that my relationship with God is stronger than ever.
Our other two little ones, well not so little anymore (11 and 14) are thriving. I continue to homeschool them, even with all of the doctor appointments and hospital stays.
With God all things are possible.
If God can bring you to it, He can bring you through it.
Wednesday, October 24, 2012
Hey All my fellow sparkers,
Sorry I have not blogged in a while, but I have been recovering from surgery.... I got my genetic test back, and I tested positive for the breast cancer gene. My options were to either monitor and wait, knowing that I had a 90 percent chance of getting cancer eventually, or I could have a full hysterectomy and mastectomy. First my DH and I consulted our pastor. Then we prayed and talked about it alot. We have 3 kids, one who is highly special needs, so it was decided that I would have the operations. The really great thing , and not to get too personal since I do have guy friends that read this, is at the same time they do the mastectomy they replace what they take. And, believe it or not, after 6 hours of surgery, I was only in the hospital over night. But that is ok. IT was nice to recover at home. Trust me, the old ladies at church cook much better than that hospital any day, and I and my family were very well fed for a month.
In other news, Elizabeth our special needs child with autism, started having seizures out of the blue. Well last March, when she almost died, she was without oxygen for 3 minutes , so they decided to do a cat scan. She was found to have sustained brain damage. Now the damage is in the fatty part of her brain, that protects her nerve endings, so she is going to be on a special diet for two years to regenerate that part. Her medical team has full hopes that it will repair her seizures, not sure about the autism.
I know my friends here in the past enjoyed my inspirational blog posts, and I hope to get back to that one day. Maybe when this roller coaster slows down.
Sorry for not blogging in a while, I hope all of my spark buddies are doing well.
Keep Living For Jesus Out There (no matter how bad the news is)
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