Comment

Comment by Wendy Bertellotti on August 13, 2009 at 1:31am

Great! Thank you. Would love to meet your family soon. Hope you are all doing well.

Comment by MicahsDaddy on August 12, 2009 at 1:44am

Hi Wendy, try putting it in a spoon with apple sauce or pudding, but have a cup of something to drink it down to mask the taste, Also, teach him how to swallow mini MM's with water. Shouldn't take too long to learn since the chocolate doesn't taste bad when failing to swallow it in the begining. Once he has that down, he should be able to take the pills.

Comment by Wendy Bertellotti on August 11, 2009 at 11:36pm

Hi. My son, Jake (5), started deflazocore today. We made it into powder and put it in orange juice. He could totally taste it. Does anyone have any ideas to make this go more smoothly? Thank you in advance. Wendy

Comment by Susan Rathfelder on May 30, 2009 at 12:32pm

Is anyone in the So Cal area planning on going to the Abilities Expo at the Anaheim Convention Center this weekend? We will most likely be there this afternoon. Here's the website so you can check it out: www.abilitiesexpo.com
We need to look at lifts for the house and the vans. I am not sure if we can get Jon to go, but we are going to try. After all we are looking for stuff to make his life easier and we want him to have a say.

Susan

Comment by Wendy St.Geme on September 9, 2008 at 2:07pm

Some of you are already aware, but for those that are not, my sister is hosting a poker run fundraiser this coming weekend on the Sacramento river. Chevy's (on the river, Garden Hwy) is donating a percentage of all food purchases this Saturday from 1p - 4p to PPMD. I am planning to be there with Nathan between 1p & 2p. Please come if you can - I would love to meet other Northern Cal families!!! All you have to do is tell the server that you are with the poker run (even if you're only having lunch). Hope to see you there!

Comment by Julie on September 4, 2008 at 3:39pm

Hello California Families

We live in Yuba City Ca about one hour north of Sacramento. Is there anyone who lives close so we can meet. Our son Aiden is 6 years old and still doing good.

Julie Malecha

Comment by Beth Kilgore on July 24, 2008 at 6:36pm

Hey, Christian,

Just wanted to tell you you've done a great job putting together this group together--the page looks great!

Everybody should take a look at Julie's comment below. Supporting the legislation is so important to help our boys!

Comment by Julie Garcia on June 29, 2008 at 3:22pm

Heidi,

Thanks for the information!

I am sure as you have been around and see a lot we need to be very active with legislation to keep research going and bills that will impact durable medical equipment.

An important bill for our families is both S 1428 and H 1845 which is about DME and how it is purchased which has been referred to various committees in the Senate and House. I believe no further action will take place until September at the earliest.

The Centers for Medicare and Medicaid Services, CMS, is changing the way Durable Medical Equipment is purchased. They wish to open purchases to bid and provide clients equipment based on the lowest bid as a cost savings measure. When dealing with certain equipment it is imperative that the consumer work with knowledgeable providers to ensure they obtain an appropriate device. In particular, mobility devices and seating are items that require a trained individual who can assess the needs of the patient when selecting the appropriate product. Working with traditional Durable Medical Equipment suppliers who understand what is needed will cost CMS more, yet the outcome for the patient is much higer. A less expensive power wheelchair looks great on paper to those only concerned with budgets, yet if the device does not fit the patient, meet his/her needs is underpowered or is constantly breaking down, what good is that to the patient? Children with DMD require complex arrangements for their power chairs and these devices don’t fit out of the box and often require special modification.

The bill for House and Senate listed above was recently introduced in the House by Rep. Tom Allen, D ME, and Ron Lewis, R KY, that would exempt Complex Medical Rehabilitative Products from this bidding process. There are other proposals being drafted, yet what is important is to let your Senators and Representatives know you disapprove of this change.

So, we need to keep our eyes watching and in touch with congress to protect our families and resources for them. Our families already have enough to deal with.

Heidi, welcome to the California site!

Julie

Comment by Heidi Miller on June 29, 2008 at 12:21pm

Hi fellow Californians! Finally got around to joining. States do have differences, especially in their programs. As Mitch is getting older, his need for equipment is great. I have recently run into much difficulty getting a daytime ventialtor for non-invasive ventilation. Thank God we have Medicare as well as Medi-cal. To all you parents, please note that Medi-Cal is very hard to work with and it does not supply many things your son may need, such as a daytime ventilator. If you carry personal health insurance through emoloyment, keep your son on it after they turn 18. You should have your son on CCS (California Chldren's Services) now if you have a specific income. I don't now the cut-off amount, but you don't have to be destitute to qualify. After your son turns 21, he will qualify for Medi-Cal. Get the Medi-Cal, but keep your private insurance if at all possible. In my experinece, it has been very helpful to have 2 insurnaces. Just a tip!

Comment by Lee Ann Faeth on June 26, 2008 at 4:38pm

I love it Christian! Thank you. :)

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