Amber has changed meds again and we have gone over the neurologists head to get her some meds he would not prescribe. We were able to get a new prescription for that muscle relaxer that the neurologist did not want her to have and this is doing a fairly good job of keeping the Dystonia at a level that Amber can withstand. We are giving her 3 pills a day which seems to be working. She had her first good nights sleep in months just the other day when we started this and actually slept 9 hours uninterrupted. A milestone for her. She is seeing 3 separate psychiatrists all working on different things. One on her depression and chronic pain and another on her overall well being, state of mind and attitude, and a third is going to see what she can do about her learning disabilities by doing some scans and tests and seeing if she can incorporate some medical as well as physical devices and environmental changes to help her succeed. This is somewhat dependant on how the others fair in their attempts but we are hopeful.

She has also gotten 2 new Orthotics that seem to be helping keep the Dystonia at bay to some extent. The leg orthotic is not doing so much but the hand/arm one is providing some relief. Actually it is 3 new Orthotics as she has 2 new ones for the hand /arm that hold the hand/arm in differing positions. When one stops doing the job she switches to the other. Between the 2 she gets a bit more benefit.

Her current meds are the muscle relaxer and the tegretol and a new antidepressant that is similar to Zimbalta. She just started the antidepressant this week so we do not know if it will have any effect. Since school let out her stress levels are down which in itself has helped.

Tami is still spending most of her time running people to Dr’s appointments and what free time she has is devoted to her crafts.

 Our son is off at boy scout camp for the week and I am still having severe problems with my broken leg. I can no longer see the Dr. that did the surgery as my insurance will not cover it and I called 22 Dr’s within 25 miles of Tacoma to get an orthopedic surgeon to look at it and none would accept me for one reason or other. All were on the list of preferred providers of our Molina basic health insurance but some said they did not take basic health and some said they did not take new patients and some said they would not take over what someone else had started and some just said they did not specialize in broken legs. If I am to see a Dr. I might have to go to Seattle??? I don’t know. Open enrollment is in October so I just might change from Molina to another health care provider so as to have a new list of Dr’s to try but as of now I just hobble along and hope it is healing correctly. I would have thought that after 7 months I would be doing better but who knows.

Money is tight as always and my mother has offered to pay for my sons braces. $6,000.00 is a fair chunk of change for her to part with being as at 76 years old she is living on a fixed income but she said she can no longer stand to look at our sons teeth and wants them fixed. I did not argue but am determined to pay her back if at all possible. I already owe her considerable and now with one of our renters moving out and stiffing us on the last months rent we are even deeper in the hole. If we cannot get the place re-rented soon we will be having to borrow more but mom has already said her rainy day money is almost gone. My mother in law has offered to help if she can but her financial condition is not so good either. We have tried to move money around so as to be able to make the best use of it that we can and we have cut back on a few things but one can only do so much. I think if we can make it through this year we should be OK. Unless something else comes up the only thing we have to worry of financially is getting the rental fixed up and re-rented and getting enough money together to pay property taxes in October.

I won’t be able to help much with any repairs to the rental so I hope Tami is up to the task. One of our other renters has offered to help for $8.00 an hour and I suppose that with today’s wages this is not a bad price to pay for cleaning and painting but it will set us back some. I hope repairs are minimal but with them having 4 kids and 2 dogs I expect the worse. I expect I’ll just have to pop a few percoset and do the best I can; and hope there is little damage that requires any replacements.

Our son will return next week and he can help with some of the work.

One bright note is that Amber’s childhood friend has come to visit her for a week and then Amber will be going to their place for a week. This has placed a smile on Ambers face and for that we are grateful.

Half the year is over and though it has really been a bitch I don’t expect the second half to be as bad. If we can survive the rest of the year I think we will be able to get our feet back under us. As for Amber she has several good people working on getting her Dystonia, depression, attitude and other problems under control and we can only hope they succeed. We still have some battles to win like the e-stem and proper meds for the Dystonia but we have come to expect we will have to fight for most everything so we are not dissuaded in the least. We have seen some improvement in Amber’s demeanor as well as the Dystonia and are hoping for more. If she can turn it around it will be a good year despite our financial difficulties and my leg.

So far this year I have had the broken leg with an operation and 2 metal plates and 16 screws installed. I had a kidney stone operation to get rid of one blocking the tube leading to the bladder and I had a colonostomy where they removed 8 pollups. I also had them take a look down my throat and stomach and they took a biopsy of something they found there.

Tami had that brush with her heart problem in January and still suffers skipped heartbeats that cause her concern. She is still fighting menopausal hot flashes and is now having dizzy spells, dry mouth and headaches but is carrying on like the trooper she is.

Our son has found he has knee problems but is unwilling to do what the doctor has recommended. He does go to therapy but does not wear his knee braces. We are tired of arguing with him; he will suffer his decision when he gets older. At least his chest pain turned out to be nothing significant.

I have already spoke of Amber.

Financially it has been rough but with the help of family I think we can get by, provided no more bad things happen and we are able to make property taxes in October.

Amber is suffering some new symptoms and we do not know if they are a reaction to the drugs or something new having to do with her CP or just some other ailment. She is having dizzy spells and headaches as well as vomiting, on some occasions she has vomited blood. We have taken her to the pediatrician once, the emergency room twice and the after hours clinic once, but so far nothing they have done has made a difference.

I am pushing for an MRI or CT and an upper GI but first we need to get another appointment with the pediatrician. Meanwhile Amber not only has to deal with her Dystonia without the e-stem but these new symptoms as well.

The renter that has stiffed us for July rent is still not out and it looks like we will be out August rent as well. We have hired a lawyer to do an eviction but the earliest we will get the property back under our control is late August so we are having a financial crisis right now. Several bills have come in that we cannot ignore like my auto insurance and insurance on 2 rentals.

My mother paid for Joey's braces and he got them last Monday. He was playing with the neighbors boy and got head-butted and broke them the same day. Lucky for us the orthodontist fixed them for free.

We are all getting more and more depressed but I think it is hitting Tami especially hard as she is having a real problem coping with all the problems. I think she feels helpless as there is little she can do to make anything better and is fighting the desire to give up. She and I are going to try firing off a new round of letters and phone calls to the insurance and DDD to try and get the e-stem as well as get the Doc. to get an MRI and upper GI on Amber to see if we can find the problem.

To top it off my niece still has not been able to get her health insurance woes in order and has been dealing with a kidney stone since February and is having to deal with constant pain. She also has Fibromialgia and has to deal with that as well. The best we can do is give her some pain meds I got for my health problems, but they will soon be gone.

Universal health care is looking better all the time.

I can hardly believe a month has passed since I last posted anything here. It has been a busy month and a lot of things have happened. I’ll not bore you with the small stuff but of special note is we almost lost our insurance. I failed to send the cover sheet into basic health as per what I was told by a DSHS rep., who said all I needed was the self employment worksheet and the documentation. So just because they did not get the cover sheet they dropped the kids from the health plan. I had to scramble and make several phone calls to get it straightened out, but now they are covered again. Amber has had no relief from the Dystonia and in fact the muscle relaxer is not as effective as it was. We are trying to get the dose upped but it requires the neurologist to sign off and he is not that easy to get an appointment with. We have had to make appointments with the pain management Dr at Children’s in Seattle again as well as the Psychiatrist at children’s, as she wanted to be in the loop of what was going on.

Ambers pediatrician refused to prescribe any more pain pills till we got documentation from all her prescribing Dr’s and that took a week and then some.

We were able to get the e-stim/TENS unit on order as a rental but it has yet to arrive and from what I was told they would only pay for 2 months, starting the day of arrival. We will try to get the insurance to pay for it once the rental period is up but I think it will be a fight and it does not look promising.

Amber is not looking forward to school which starts on the 2^nd of September but overall I think she is ready for it.

Her attitude has gotten a bit better in the past month. I do not know if it is the meds or her ability to deal with the pain. She has again talked of suicide but though we will inform her psychologist I think it was just a moments regression during a depressive state due to some bad times.

Overall I do not think things have really changed much. She is still in a great deal of pain and is severely depressed but I think we are all now used to the system working at a snails pace and the anxiety we once were facing has diminished somewhat.