Tuesday, November 14, 2006


Whew, we are soooooo fortunate to have received the medical waiver!

I am still getting bills upon bills for the time that he did not have the coupon...and they are stacking up. I have been working with the insurance companies, DSHS and medical offices to figure something out. Fortunately there was only about a two month window without the coupon.

Beyond his medical appointments and procedures (the most pricey of the bills), he has mega equipment rental, medications, and therapy. Yesterday I received a whopper for the OT/PT that wasn't covered...that in itself set me back a pretty penny! Yikes!

I know Maxwell has more medical/developmental issues than many special needs kiddos and therefore his needs and expenses are much higher than average. (I don't like admitting that, but hey reality is reality.) But still, I don't know how special needs families can afford all of these costs on top of the time away from work or not being able to work at all.

And this medical waiver that Maxwell received is extremely, EXTREMELY uncommon. Actually another parent recently told me that our two sons are the only children who have received the waiver in this county for the last ten years! Yikes! That was difficult to hear (knowing how above and beyond medically fragile our children are) but it was also a reminder how incredibly fortunate we were to actually receive it. I am forever thankful for all the case workers and medical professionals who worked with me to make this happen. Wow.

As we move forward with the newly elected state and federal legislators, I kindly (and strongly) urge you to advocate on behalf of the special needs community. I never realized how much financial strain (in addition to the physical and emotional strain) was on families until Maxwell arrived. These families and their services need our support.

For example, here in Whatcom County they have a "payor of last resort" fund for families when they need financial assistance. Therapy appointments, sign language classes, special shoes (Dylan for example last week could have used this), etc. are just a few examples of items that can be covered through that fund. Unfortunately that fund has run dry and will not be replenished until next year.

These sources of assistance could be better funded if we advocate their importance to our elected officials.

And lastly, yes I know that many of you are probably going to post "what about the father? why isn't he paying?" Unfortunately that isn't going to happen without the courts forcing him to...so we are working on that. Yes indeed that is frustrating, I know! But I'm sure it will work out and I will be reimbursed eventually.

Ok now back to posting some super cute photos of Mighty, Mighty, Mighty Maxwell...


Mark and Jaye said...

Hang in there Amy...remember a few things...Grace and dignity go a long way, and your example of genuine love and concern will make a home that is safe and secure for Max to grow and thrive in..which he is OBVIOUSLY doing!!
Secondly, what goes around comes around. sometimes God doesn't make things happen the way we'd like them to, or in the time frame we'd like..but he DOES know what is going on and he WILL set it all right!
Hugs and prayers for you and Max as always!

Mary Karr said...


In Kanawha County, WV we do have a newly elected senator who I feel will work diligently for children with special needs. He and his wife have experienced illness with their own daughter. We also are fortunate to have a senator who is a MD and very sympathetic to the medical and pharmaceutical changes which need to be made. Hopefully the 2008 election will bring further changes.

I am so glad that you are getting some assistance with Maxwell's medical expenses. You are a super mother and Maxwell's improvement is amazing.

Lori said...

Ditto for me on Jaye's comment! What's that old adage... "A life well-lived is the best revenge..."? Amy, you have been blessed with the commission of being Maxwell's mommy, and I don't think there's a better candidate on the planet! And while it may be frightening for Max to qualify for the waiver, it is definitely something to be thankful for-- however "weird" that may feel for you-- under these dire circumstances.
Sending lots of love--

Anonymous said...

I am so greatful you were able to receive this blessing that it may help you and Max in your tightest moments. It will give you a chance to continue to focus on his care and development.

Much love to you both

elle said...

people who no ur ex shouldnt ask that LOL he is an evil git bet hes friends with bush LOL u can tell i hate bush and ur ex but i do love u

Sarah Key Storrs said...

I am hoping that I have gained the attention of the legistators in the 14th district. Tonight was our local "meet your legislature day." It was hard for me to go to that meeting and in front of a bunch of people I didn't know (or barely know) basically say "I can't afford the care my son needs to reach his full potential." I explained our situation and how we keep getting bounced around from agency to agency looking for assistance. I pulled out all the stops and wrote a letter to each legislator, and brought a picture of Evan when he was two days old and also his "2nd year" scrapbook. I found out our newly elected representative had lost a grand-daughter at 2 months to an undiagnosed syndrome. And our senator's aide asked me to email him and he would have the senator personally look into Evan getting a medical coupon or possibly the waiver. So we will see...I've been disappointed enought times now to know better than to get my hopes up. But it is a start.