katydaqueen: (Default)
When Konal first started having difficulties, I started looking for answers. Intuition told me that there was more than met the eye involved. We have had consultations, specialists, test after test that would leave us both in tears. You could tell me tomorrow he has a brain tumor, and I would probably deal with it better than what we have. We need to know what we are dealing with, instead of this constant round of finding yet another thing wrong. Konal is picking up on this. When he was tested for Wilson's Disease, I was informed by one of his teachers that he was talking about it like if he had it, everything would be all better. And when the tests were inconclusive? I think our hearts just broke a little bit more.

So, as part of this continual quest for answers, comes this new study:
As a mother who hangs on every word, I just wanted to say, "Thank you, researchers and scientists" Because you keep trying, we have hope.
katydaqueen: (Default)
Catching up...  as always, if you want up to the date bloggage, check out my site.

Today was a day on the run, and run I did. Cleaning, working, meetings, and more.... I am behind on e-mail and blogs, and tomorrow guarantees the same.

I have a small rant about the State of Arizona's social service system. It is very fragmented and difficult to navigate. Konal receives services from Behavioral Health via his eligibility by being on the state form of Medicaid, called Arizona Healthcare Cost Containment System, or AHCCCS for short. He meets the federal definition of Developmentally Disabled, but not our state definition. DDD is the only non income dependent health program our state really has. This is why I made the choice years ago to quit working. I was making too much, and private insurance can not provide the services we need.

The problem, besides the confusing nature of the system itself, is that Behavioral Health is built on a time limited, fix the child and get out philosophy. It is not set up for long-term, chronic issues.

We had a meeting today, and were told that the agencies are receiving pressure to correct the safety issues in the household and get back out (called transitioning)

I do not see this happening. I am afraid that during Konal's next better cycle, they will declare him "fixed" and withdraw the in-home supports. I hate to say it, but I foresee another system taking over at that point.

This system receives a very high percentage of the children receiving behavioral health services in AZ. It is a way to warehouse "problem children" who may have been helped if the other systems were better.

What is this system, the one I see my child being in if I don't keep fighting tooth and nail?

The Department of Juvenile Corrections.

And if the issue is bad enough, the Office of Corrections.

Why spend all this money to warehouse a child that money in the beginning could have prevented?
katydaqueen: (me)
The counting my blessings edition.
After two posts dwelling on more unpleasant aspects of my life, I decide to count my blessings:
  1. I have two wonderful children.
  2. I have a supportive mother.
  3. I have lots of loving family, including my dad, brothers, aunts and uncles, and cousins.
  4. I have a partner ([profile] elmocho  ) who is everything I could ask for and more.
  5. Through hard work and diligence, I obtained my Associates in Transfer Partnership, and have continued my education for my bachelors in Social Work.
  6. I have wonderful friends.... you know who you are :)
  7. I have hobbies that I enjoy (when I am not buried in schoolwork)
  8. I have a puppy who loves me
  9. I have a quick and agile mind and love learning.
  10. Life is going well!

Now playing: Bob Dylan - The House Carpenter
via FoxyTunes

Cross-post from Krista's Thoughts
katydaqueen: (Default)
When I left off yesterday, I promised to address the question of "What about when he is older and bigger?"

Cross-post from Krista's Thoughts
katydaqueen: (unicorn)
Cross-posted from Krista's Thoughts.
So, as evidenced by the badges on my blog, I signed up for NaBloPoMo this year. That fancy acronym states that I made a commitment to post once per day on my blog. I made a few more rules for myself:

1) Quizzes, memes, and fluff do not count.
2) I am going to cross post to MySpace and LJ since I know not everyone visits here, and those blogs might as well get a work out.

Today I am going to talk about my medical stuff, and how I feel about it. This is very important to me, because I tend to focus on everyone else and ignore my stuff. Right now I have two major things going on that are impacting my daily functioning.

The first is one that Konal caused during a rage episode. I was disengaging from him and letting the CFSS staff take over. As I was walking away, he went after me and punched me full force in the back, specifically on the spine. This caused a severe muscle spasm that affected the shoulder and was just plain painful. I visited the doctor for it and got X-rays, muscle relaxers (Flexeril) and Painkillers (Percoset).

I saw a new (for me) Nurse Practitioner at my doctor's office. She asked me my least favorite question, "What is going to happen as he gets older and bigger". I think I will save my thoughts on that one for tomorrow's post.

When I returned to the doctor's office on Tuesday, I found out that I have scoliosis of my spine. The reason the punch affected me so badly is that he hit the weaker muscles on the curved section. The basic treatment is rest and the muscle relaxer.

Today I had an appointment with my new endocrinologist. I love this woman- she is actually finding things to treat instead of shrugging her shoulders and moving on. The results of the large amount of blood work she ordered is a slightly high free testosterone, a bad ratio of certain hormones to other hormones and a very high DHEAS level. It is still PCOS, but this means it is PCOS based in my adrenal glands instead of my ovaries. I have to get an ultrasound of my adrenal glands to make sure there are no masses, then an ACTH (Cortrosyn) stimulation test to see if steroids will lower my DHEA level. There is also a small mass on my thyroid which we are not going to worry about. She will check it again next year, and if it has grown, then it will be investigated. I am to keep taking the spironolactone to help with the testosterone and keep my cycle going. She can't raise it anymore, though, because I already have low blood pressure and it will lower it further.

And that is where I am at....

Tune in tomorrow, when we will discuss that famous question:
"What about when he is older and bigger?"

Now playing: Tori Amos - Toast
via FoxyTunes

April 2009

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