Monday, March 22, 2010

Medical Insurance

** This post is just my opinion based on my experiences and I know others have different view points based on their opinions. I just needed to get my thoughts out.

Medically Ethan has been doing really well, and we had not had a bleed in about 3 months. We have been so fortunate to have a wonderful team of physician’s that KNOWS hemophilia, they specialize in it and that knowledge helps him to lead a more normal healthy life. Some days it is so easy to forget he has hemophilia, others not so much. It only takes one little, minor thing to remind us. What was it this time? Honestly we don’t know (the ER doctor loved that one). It was just a small series of bumps that would have not even left a mark on you and I. Hemophilia is really a manageable medical condition. By the time most children with hemophilia are Ethan’s age they either have a port (a permanent IV line on their chest) or their parents have been trained and can administer the drug intravenously to the child. Ethan is not like that at all. He is what his nurses call an “Anesthesia start,” basically 9 out of 10 times it takes an anesthesiologist to start his IV line, I have watched many nurses become humbled by my toddler. As much as one can get used to seeing their kid get a hematoma I have, my real struggle is making the doctors and nurses understand why I come in to the ER with him. During the week 9-5 we can take him to his team of specialist, but nights and weekends we trek into the ER. It is always a struggle; doctors always want to over treat him (give him Ct scans and things that are not necessary and I understand they are just doing what they need to do to cover themselves in a very litigious society). ER doctor’s don’t understand his hemophilia in it’s entirety (and that is not their fault, again they are just doing there job) They don’t get why us, his parents, and his hematologist have not gotten him a port and why I don’t give him shots at home and they like to give their 2 cents on the matter after seeing Ethan for about 5 minutes over his hematologist who has been with him since he was one. Again not their fault, hemophilia is so rare that most doctors don’t know the standard of care for a hemophiliac and as Ethan’s parents it is our job to inform them and sometimes it can be quite the battle to get them to understand.
This brings me to the main thing that has been running through my mind since the hospital visit last Sunday, the healthcare reform bill. It has been on my mind so much lately. Last summer I even download some of the draft versions and started reading them. While it presents some appealing things (like getting rid of “the preexisting condition” and so far it looks like there is no lifetime caps) there are so many things that scare me about it. Chris and I work so hard to provide insurance for our son and are so grateful that we can do that. I don’t want my fellow taxpayers to pay for his medical needs. Do we really want to government in our medical records? Do we really want public/socialized medicine? Can we afford more taxes? And the bill is even looking at getting rid of special funding for specific disabilities and taking a public health care approach. Meaning the Hemophilia treatment center, at San Diego Children’s Hospital would not get full funding since they are specializing in certain disabilities (blood disorders, not just hemophilia). Instead of E being able to see a hematologist who specializes in blood clotting disorders and knows him, he would go to whatever public health care hematologist was out there. I have met lots of them and again I go back to my experience at the hospital, they just don’t have the experience with hemophiliacs to given them the proper and most efficient medical treatment. So our ER experience would be our ever experience with him and hemophilia.
It is just my opinion, but I don’t think a one-size fits all healthcare plan will work for my family and me and feel like we had no say. I hope that I am wrong about how some it will play out but I really do want to know, where has democracy gone?

Sunday, March 21, 2010

Happiness is...(March 21st)

Recently my sister started a weekly blog posting called Happiness I thought I would join in and post what it is that makes me happy this Sunday night.

Ethan has recently found a deep love for stickers. When given a sheet of stickers he must take every sticker and put the stickers ALL over his clothes. It makes me laugh; he get so excited.

This photo was taken last Sunday. We had an a minor injury that required a trip to the good old ER (totally routine for us, I actually knew two of his nurses from previous trips. A blog for another day). Getting his IV started (that's the thing on his right arm) is difficult so his sweet nurse promised him stickers. She brought him three sheets of stickers and he put them all over, on his shirt and down each leg of his pants. So funny. It make me happy to see how something so simple he can make so much fun. Love this little guy!

Monday, March 15, 2010

What's new Friends

It has been a bit since I have blogged. I have been busy, life ran away from me so to speak. So for those who are curious, or not, this is what we have been up to (really more for my own recording keeping).

** Ethan has been in preschool for about a month. He is adjusting very well and his language is really taking off! He is saying all sorts of things. The attention span on the other hand could be a bit longer.

** After a lot of thought and prayer we have decided to rent a house in a nearby city. We will be moving in about 3 weeks. So excited to move. The house is near our church, has a backyard for Ethan and Chatzski, a garage to store all of our stuff and we will have a washer and dryer (no more coin operated laundry). The story about finding this house is pretty cool. Maybe I will blog about that in a future blog.

** The dreaded March 15th deadline has now past (or will in a just a few hours) and I am relieved to know I have not gotten a "pink slip." Which means I will have a job for next year. Although I am deeply saddened as some of my closest friends and co-workers received "pink-slips."

** After months of searching and applying, my youngest sister found a job and it is in the San Diego area. So "N-Tee Sam" (Ethan's name for her) will be moving into our new house with us.

**Our youth group trip was a great success and the kids had a great time playing in the snow! Thanks for all the prayers.

** My mom and I celebrated our birthdays recently. It was really more of a surprise to celebrate her birthday. It was such a fun day. My mom had been wanting an updated family photo for a few years now. So we finally got around to it for her party.

That's about it for now. So what have you all been up to lately?

Thursday, March 4, 2010

30 before I turn 30!

A while back a good friend posted a list of 30 things she wanted to do before she turned 30. I became inspired and now that I have just under a year left until I turn 30, I have made my own.

30 Before 30
1. Weekend vacation with husband
2. Go to France
3. Move to a new house
4. Get our debt snowball rolling
5. Get on a regular devotional schedule
6. Finish Christmas scrapbook
7. Have a mommy and Ethan Day 'O Fun
8. Go to Hawaii
9. Take a cake decorating class
10. Get a new family portrait
11. Scrapbook night with friends
12. Walk on the beach and collect seashells
13. Go on a Missions Trip
14. Work on wedding scrapbook
15. Have a girls night out (or in)
16. Get on a regular workout schedule
17. Have an Auntie and Madison day
18. Get on a cleaning schedule
19. Fishing with Ethan and Chris
20. Everyday remember that life is precious and not guaranteed
21. Get more involved in Hemophilia Association
22. Go to Disneyland
23. Go see a taping of a live TV show
24. Get new larger coffee mugs (current ones are too small for my caffeine needs)
25. Go snowboarding
26. Go to a spa
27. Update my passport (maiden name probably won't cut it anymore)
28. Clean out closet and donate clothes
29. Swimming lessons with Ethan
30. Put music on my iphone (finally)

**Those in red are ones that I have accomplished. :)