Why is the 17th important enough to stick in my mind? I was horsing around with my son after a large family dinner and broke my left leg. No actually shattered it and had to have it operated on. 2 metal plates and 16 screws. I am wheel chair bound for at least 3 months. They say with therapy I should get 90% use back. ( update Jan 2010: had to have another operation and now have a metal rod down the entire leg from knee to ankle. Walking is a bitch and forget about ever running again. I guess I'm going to be disabled myself for life now. But because we have assets I cannot get any State or Federal help.)

She also saw a special Eye Dr. and was prescribed bifocals and some exercises to do to make both her eyes to work together. She has such a 'who cares' attitude lately I think it will be hard to get  her to do her eye exercises.

We've been to Children's in Seattle about a dozen times or more and I have always seen it to be a wasted trip except when she was being seen for children's rheumatoid arthritis. The Dr. that we saw then was good and took the time to get the tests and give us answers and meds. He eventually went to Colorado and we stopped going there shortly after as Amber was in remission.

Amber's mom has been delivering a pill to Amber in school for pain every so often as she cannot make it through the day without crying.

Now at least we could give her Vicoden publicly and the muscle relaxer ,Valium (Diazepam) was of some help as well.

Got the news I have 10 kidney stones, six on the left and 3 on the right and 1 is blocking my left tube leading from the kidney to the bladder. I am scheduled for an operation the 5th of May. Being in severe pain from the kidney stones and wheelchair bound due to the broken leg only compounds my own frustration at not having been able to get Amber any help.

Called several State and County agencies for help in getting counseling for Amber. Finally Pierce County Health dept referred me to the United Way and they referred me to 3 counseling services in the Tacoma area and 1 of the 3 takes our basic health Insurance. Have yet to make an appointment but will after we see the neurologist. Apparently Pierce County has contracted with the United Way to handle all their community health calls. Way to go Pierce county. Waste more tax dollars and kudos United Way, making money just to do referrals.

On another note our son has been complaining of chest pain during exercise and some pain in his knees. You have to understand our son is very active playing most all sports and loves soccer and football. He never complained till just the last week or so. Said he could not run more than a fifty yards without resting. We had him seen as well. He has an appointment with a cardiologist on the 1st of May 08  and I'm not sure when, but he does have an appointment with an orthopedics sometime in May as well for his knees. We're hoping that this chest pain is not a serious issue.

Spoke with the social worker to try and get the Psych dept to bump Amber up but were told the waiting list is a year out. 

Did get some information that we might be able to get a gas card for taking Amber to all her Dr's appointments paid through the public transit. Apparently being on the medical coupon allows for this. All we have to do is contact them 48 hours prior to our appointment and they will credit the card with what they think we will need in gas. The problem is not many stations will accept the card and we need to give plenty of notice. Still it is something, 'IF' we can get it. Won't know for sure till next week and geez why didn't anyone tell us of this before. Do you have any Idea of how many trips to Seattle and Children's therapy and Dr's appointments we go to for her every week. I'm sure we could have saved thousands by now. If you have a child on the medical coupon check into whether there is a program to reimburse you for gas to take your child to appointments. We still do not know if we will qualify and get this but this is something any low income in WA. State and elsewhere should look into.

Was able to stop in at my urologist (close to Ambers Neurologist) and get some percoset for my kidney pain as my primary care refused to give me any more. He once mentioned he was afraid of being audited and losing his license for prescribing narcotics. Hell take care of your patients needs and you will not be in violation of anything. NO, he would rather I drive 25 miles to get a script cause percoset is one they cannot call in to the pharmacy. Ass.

Tami had to leave town on a family emergency as soon as we got home, so am here with the kids. Yea me and my wheelchair. Anyway will wait on making any more appointments till Tami returns.

Amber's "Aunt" took her to therapy today as Tami and her mother had to leave town.

She also kept saying things that made her appear totally self sufficient but again I had to remind her that there were many things she was incapable of doing without the use of her left hand and now that the Dystonia has such an effect on her motor control there are even more things she has lost the ability to do. Also as a minor she does not have a drivers license so just going to the store is impossible without someone to drive her. Another question she answered as if she could be self sufficient. The nearest public bus stop is over 2 miles away and what with the Dystonia in her left leg she can seldom walk the halls of her school without taking a break because of the pain. A 2 + mile hike to the bus stop is way beyond her ability.

Remember as a Parent or Guardian you must be on your toes and see to it that any question posed is fully considered in all its aspects. There are many things that seem very simple or even go unnoticed that will affect the outcome of your eligibility. Like the simple not being able to cut her right hand fingernails. This is a life altering event. Sure she can go and have a manicure but the question is can she do it for herself and the answer is NO. And also even if she could have manicures how is she to get there?

Anyway we made it through the 2 hour question and answer session and I think we came out at the same level as last year. She has gained in some areas but due to the Dystonia has lost in others. DDD should have her on the roles for another year. This year we asked that they fund the purchase of an E-Stem for Amber. I told the worker that we would not have any difficulty getting tons of letters from doctors and therapists to vouch for her need for this. But I hold no hope of their even considering it as they have never really done anything for us in the past. 

Amber is supposed to be entitled to $2000.00 a year in money for use to purchase needed equipment but in 13 years we have only been able to coax about $200.00 out of DDD and that only with tons of documentation and the threat of a lawsuit. We have been denied so often even with tons of letters that for the past 10 years we have not asked DDD for anything. I just want her kept on the roles in case we ever do find we have a need that we can sue them to fill.

*****

Amber was looking forward to visiting her cousin and her cousin's daughter of 4 years old, but that will have to wait till another day. Her cousin is 27 and has severe kidney stone problems right now and is in considerable pain. She does not have any medical insurance so is waiting to be accepted for Basic health to get anything done. They do not have the funds to afford any operations. She also has Fibromialgia, anxiety issues and other problems. I hope the State will help her and not consider it a pre-existing condition she has to wait another 6 months for. Last I heard she had one stone stuck in the tube from kidney to bladder and 3 stones in the kidney. At any rate Amber wanted to go over and play with the 4 year old and see to her cousins well being. Her cousin having had Fibromialgia since she was a kid can relate to Amber and her pain issues and they get along quite well. They only live 5 minutes away and Amber's "Aunt" her cousins mother was going to take her over.

Been a busy 3 days; hope the rest of the week is uneventful.  

But turning lemons to lemonade the CPS worker said she knew of a couple of counseling services that she might be able to get Amber into. Nothing promised but at least a possibility.