Wednesday, April 30, 2008

One ticked off mom

I am SO angry. Three years ago our family had the devastating experience of helping a child through a horrific illness. #3 was a normal 2.75 year old, and started having seizures out of the blue. Days progressed into weeks, and she was having hundreds a day. Every 3 to 5 minutes she had another seizure. She ended up being diagnosed with a very rare brain disease that I won't really discuss here, but it required a tremendous surgery. It left her disabled on the left side, and she has fought hard to be the fairly normal kid that she is today.

Two years ago after starting therapy somewhere else to regain her left side, she ended up at Providence Hospital run by the Sisters of Charity - HA. It was a lovely place, but the therapists were having a heck of a time with whatever management issues were going on, and one by one they started to leave. Finding a therapist who helps your child is like finding the perfect hair stylist. If they leave the business, you follow. So as therapists left, children left, but #3 continued to thrive, and we met one of our favorite therapists there: Kathy. Kathy is from New York, and living in the South, and sometimes that is noticeable, but she works #3 to pieces and of all the people who have worked with her, she has done the most for our child.

One Friday out of the blue we get THE LETTER. This letter informed us that Providence Hospital was duplicating the services that other hospitals provided, therefore in 10 days all outpatient children's therapy would be halted. We were encouraged to contact Easter Seals, and the other hospital in the city, and thank you very much. I was outraged. Most of these kids are on some form of Medicaid. Even though my own daughter walks through the door with insurance (two different ones at the time) the remainder is picked up through the TEFRA program designed to help disabled children. Now I am very conservative, but I think this is one heck of a state run program, and will one day help to make our child an amazing tax paying, abled-bodied citizen. Our portion of #3's care at that time would have been thousands each month.

I called legislators who were told that it was a financial move. Well, why wouldn't it be. The hospital ends up eating the care for some of these kids who are only on Medicaid, but let's call it that - not a duplication of services. The reality is that adults who need Physical Therapy need it to recover from surgery, or an accident, or whatever. Kids who need Physical Therapy need it for a LONG time. My daughter's symptoms are stroke like, she needs a lot of care, but at the same time we have gone from not being able to move muscles on the left side, to playing soccer and hating ballet class. She swims on the country club swimteam in the summer (it isn't beautiful, but she can swim the whole length of the pool). She is really an inspiration each day.

Luckily for us, Ms. Kathy went to the other hospital who had the foresight to open a therapy clinic on the NE side about 7 minutes from our house. Meanwhile the people who went to Easter Seal's were screwed when that closed about a month after Providence, and soon another local therapy office closed to children. So children in the capitol city of my smiling faces state had one hospital to provide their care. Unfortunately that hospital planned a million dollar facility for the kids but then couldn't turn a profit, so they closed the NE office, let Ms. Kathy go, and invited all of downtown. Unfortunately because Ms. Kathy was no longer with them, #3 could only get an appointment at 10:00 am for PT, but could keep her 5:00 slot for OT, thankfully speech had been exited at that point. There was no way I could teach school, and then do a 60 mile round trip to pick her up at home, fight rush hour traffic downtown, and then drive back home with a tired 5 y.o who hadn't really had a break all day. Not to mention the fact that 10:00 was in the middle of both her school day, and mine. "Oh well" I was told by the administrator, that is what we can offer you.

So, I took a deep breath, and dug out Ms. Kathy's card from the last year which I thought might have her number on it, and called her. To my extreme pleasure she told me she was gearing up to see children through another clinic that would bill for her. This would mean a local commute, a reasonable time getting to and from therapies, but it would also mean crossing my fingers that her new business would take off and she would add in an OT. So we followed. We haven't regretted it even though we still need OT.

Today, however, the newspaper announces how Providence has finally made a profit, and all I can think of is how many kids were kicked out to fend for themselves. Yes, the hospital has made money and can expand, but how many children weren't lucky enough to get the care they needed because they closed. The article dares to mention the many uninsured children who need care, but they didn't care for the ones they had. How many children are on endless therapy waiting lists still waiting.... These kids are worth it. They may not fit the mold of the perfect child, but they are precious, and they deserve attention. Look at the picture below. Isn't she worth it?

Tuesday, April 29, 2008

Tough Tuesdays

Thank goodness my husband works from home. More companies should allow their employees to do this. Tuesdays are the day when I need a parent partner more than any other day of the week.

#1 child (I'm calling her Big Al in honor of what my father used to call her), has chorus after school until 4:00. #3 (haven't decide on her blog name)has physical therapy from 4-5, #2 (Dad called her T-Rex) daughter has drama from 5-6, and #3 also has dance from 6-6:30 (which she hates). So my husband and I have to both truck kids around this side of town - I definitely couldn't do it without him.

Today however the book fair was at school, and my girls (okay 3 out of 4) are big book lovers - so that added additional stops for both of us. They can't really help it, their dad and I read everything. We gave up a "formal living room" to create a library - and hopefully one day we will make it look like my dreams. Anyway, I ended up taking #3 to the book fair while Brian took the other girls later. #3 picked out a few books, but kept wandering around. I asked her what she was looking for, and she put on her pouty face and said she wanted to find the book about I can fly and my friend is sad. Hmmmmm I thought. I don't know that book. Thank goodness the librarian was there. I asked her if she knew what #3 was talking about and she introduced me to the books of Mo Willems. This guy is FUNNY. Unfortunately his books weren't in the book fair, so after we paid for a couple she picked out, we ran over to Books A Million for a Mo Willems hunt. Turns out the books she checked out from the library was one of his (her favorite book at the moment), and then we found his pigeon books. We pulled out all of the titles from the shelf, sat down in the aisle and started to read. She was giggling so hard at this pigeon who was trying to talk her (#3) into letting him drive a bus. She was yelling at the book, and laughing so hard. We ended up buying the three pigeon books (didn't benefit the school, but....) and I had to promise to buy more of his books later.

She is really getting the hang of the whole reading thing. I'm always pleased to see this, but especially in my disabled daughter. She had brain surgery 3 years ago, and just as I think we are about to be in trouble academically she amazes me and meets the challenge. She is developing preferences for authors (told me she could listen to any Dr. Seuss book over and over again) and then she discovers new authors and devours their books. I love when my "differently abled" child acts more and more typical.

Monday, April 28, 2008

In the beginning

In the beginning I created this blog. My hope is to allow people to catch up with the Dawsons. Although for safety's sake I won't be using the kids' names, I don't think it will be too difficult for you to figure out who I'm writing about.

It's 2:22 in the morning, and I can't sleep again. Hopefully I will get these allergies under control and breathe freely again. I really think I'm just allergic to this state.

I have been emailing a friend of mine lately about the latest Epilepsy flier that came last week. In it they profiled a young man from our city who had Rasmussen's but whose parents chose not to do the surgery. The young man wrote it from his perspective, and I was pleased to see that he had earned his eagle scout award. He wrote about how scary the surgery idea was, and how his doctor put him on an altered diet. The result - he has more problems than our #3 child, he can't use 60% of his arm, he's in resource classes (used to be in honors), has heart issues, etc. I spoke with this family when we were making the decision about the surgery, and I remember being discouraged that they hadn't chosen surgery, but I try to allow room for others to do it their own way. Needless to say, I had a very negative reaction to this article (as did my friend who's adult son had Rasmussen's and the surgery too) and contacted the epilepsy society to offer a different perspective: one of hope and a new way of doing things. They were pretty much stunned at all of the things #3 can do. They asked if I would speak with parents about our experiences in their support group, and they may profile #3. I have agreed, but don't want them to publish #3's picture because of the whole stigma attached to what she has left of her brain. I think that in the future it is up to her to decide what to tell people. For now, we just need to help other families see how fabulous she is, and how normal her life pretty much runs.