Monday, February 23, 2009

I can't believe it!

I have posted previously that we are working on getting a stroller for Micah so we can get out of this house. So I wanted to share how ridiculous all of this is. There is only 1 stroller that Micah can have because all the rest do not lay flat. Now the company that my insurance is dealing with is telling me that the stroller we NEED is too expensive because the company that makes it will not give them an extra discount!!! They are trying to get us to buy a stroller that will NOT work for Micah and they are trying to tell me that the only one that will work doesn't do what I know it does. The employees at this company do not know I have been talking with the Vice President of the stroller company who has helped MANY families of SMA children! So I am supposed to hear from them today to tell me what they have found out over the weekend and make a decision. I also called the VP of the stroller company and asked if she could talk to these people and let them know why this is a MUST!! It seems to me that in some situations money should be left out of the mix and people should be helped regardless of how much profit there is in helping them.


Becky K. said...

I'm so glad you're blogging all this, Chelsea! I think about you guys every day and wonder how you're doing. And now we know! :)
We love you all and we're praying!

Whit, Lindsey, and Jonas said...

Hi, my name is Lindsey and I have a 14 month old son with SMA type one. I kind of randomly found your blog through Gwendolyn Strong's website. I just wanted to say Hi and tell you I know exactly how you feel. I'm sorry that you have to go through this extremely challenging journey. I know that it doesn't change things to know there are others out there, but in some small way it kind of helps. Thinking of you and sending prayers.

Cara said...

Hey Chelsea-

It's been a long time since we've seen you guys! We were down there at Thanksgiving visiting Marcus' parents but I think you guys were in the hospital at the time. Wish I could say we've been praying for you all the time - but it's only been here and there. Will try to pray for you guys more. Let me know how I can be praying. I'm sure everyone asks you that... so I'll just pray for now for that you make the most of the time you have (oh that I would too) and fall more in love with God.
I don't know if you or Devo remembers my friend Kim that was in our wedding, but she got married a couple of months after we did and she and her husband got pregnant shortly thereafter. Anyways, I've gone through over the past two years with my friend Kim her journey of ups and downs as both of her two boys (Titus and Noah 2yrs, and 11 mo.) have a rare fatal disease called Jobears (sp?) Syndrome. It's genetic so they won't be having any more kids. They didn't realize it until they got pregnant with Noah. They are both home but they have to have day and night nurses and their life revolves around the changing health of the boys. Anyhow... I was reading your stroller post and thinking of her as both of her boys are on feeding tubes, oxygen, etc. etc. and all the luggage that she has to haul around. She just got a stroller built specifically for their condition and all of their problems. She says it's pretty massive, but will do the job when they are out and about. She also got a chair for the bath tub as well to help support them recently that is pretty helpful. So... all that to say I have never been where you are, but she is... and if you ever have any questions about stroller, etc. etc. or would just like to connect with her I know she enjoys talking to others who are kind of in the same situation.
Tell Devo and Don and Debbie hi from us. Marcus says hi as well.

Amanda R. said...

Don't take no for an answer. Maybe you can contact the CA Dept of Insurance to see what your rights are and also your local government officials. They may be able to help.

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