Sacrament Meeting talks

Monday, June 30, 2008

E and I had the opportunity to speak in Sacrament Meeting on Sunday. A few people have asked for copies of our talks. If you are interested in a copy, please feel free to email either of us and we will send them to you. Alternatively, you can post a comment requesting a copy with your email address (if you think we don't have it) and we can send it to you that way as well. I promise not to be offended if you only ask for E's talk and not mine : )

Programs for Children with Disabilities and Special Needs

Sunday, June 29, 2008

E and I continue to discover state, federal and private programs to help us care for Caroline. We recently discovered Nevada P.E.P. ("Parents Educating Parents"), a parent training and information center for parents of children with disabilities and behavioral issues. The office in Las Vegas is rather large and has several parents that work there that have children of their own with special needs. These parents can really relate to what we are going through and many are experts in a wide-range of disabilities ranging from severe autism to adhd. I wish we would have started with Nevada P.E.P. because they have all the information on other state, federal and private programs that we have slowly found on our own. They also have a library devoted to books and videos for parents with children with special needs. I cannot say enough about this place. If you have a child with a disability or a behavioral issue or would like to know more about children with disabilities you should check it out. I am told that there are P.E.P. offices in every state, so if you do not live in Nevada you can still check this out.

Other programs I would recommend looking into if you have a child with special needs are: Desert Regional Center ("DRC") and Nevada Early Intervention Services "NEIS". I am told that these programs exist in other states as well. DRC is similar to Nevada P.E.P. but also offers respite services. NEIS is for children under 3 years old and offers physical, occupational, speech and audio therapists that will come directly to your home. While they do not come as much as we would like, it's nice for E not to have to drive to an appointment now and then.

Finally, to cover all of the things not covered by your primary insurance, even all the co-pays, deductibles, respite care and over-the-counter medicines associated with caring for a child with special needs, (which can add up very very quickly), I would suggest looking into the Katie Beckett option here and here. It is also somtimes called the TEFRA option. I am told that only a handful of states have this option. Nevada has it and I have confirmed that Idaho has it. I am pretty sure that California and Utah do not have it. If you aren't sure if your state has it or not, it is definitely worth checking into. Also, even states without it sometimes have a similar version of it (I am told that Arizona has a similar, but not identical version). The Katie Beckett option does not look at parents' income, so even if you do not think you would qualify, you should check it out. Keep in mind, however, that Katie Beckett will never reimburse you for things you already may have paid for out of pocket.

There are a lot of programs out there for children with special needs. However, we have found that many of these programs will not present themselves to you, rather, you have to search for them. For many of the programs, you also have to be an advocate for your child and push for the things you want. I often hear excuses, particularly from NEIS, like "we don't have money for that" or "we are stretched too thin." Keep in mind, that that is not your problem, it's their problem. If you need help advocating for additional services, Nevada P.E.P. has case managers that will assist you and even come to your house for appointments and evaluations with NEIS (or Individual Education Programs "I.E.P." after your child turns three years old).

I hope this has been helpful to you. I wish we had had this information from the beginning, as many of these programs do not come up in simple internet searches. I am sure there are many other programs out there that we are still not aware of yet. If you know of one that I have not mentioned here, feel free to post a comment. We would love to hear about it.

Happy Father's Day!

Sunday, June 15, 2008

It's been a great day for us. Not much time to talk, but I did want to post new pics of Little, as it was a special request from my father on this very special day.

C w/her dad

"Daddy lets me do whatever I want...

"...which mainly consists of..."

"...sucking on my fingers. I'm easy to please."

It takes a village

Monday, June 9, 2008

Bryce and I really enjoyed our weekend (Friday night - Sunday morning) away. The first thing I'm sure you're wondering is "How did they leave Princess C?" Well, that's where the title of this post comes in because it definitely took a village. My mom and dad came in town and were here until we got back yesterday; to help them care for all of C's medical needs, we had a nurse here from about 12pm-9pm each day and another nurse here from 11pm-7am each night - obviously, not something we can do often! And, thankfully, things went smoothly with the Little - we were worried that we'd get lots of frantic calls, but nothing like that happened.

Here's a little trip report - sorry in advance for the stock photos - I forgot the camera:( :

I got into Phoenix Friday afternoon. Bryce met me at the airport (he'd been there since Thursday doing work) and took me to see his firm's Phoenix office in the Collier Center. It was a very impressive tour; their offices are beautiful and the building is in a great part of downtown Phoenix, right next to the US Airways Center, where the Suns play.

Then, we had a truly memorable dinner at Barrio Cafe. A little background first: some people are big planners for vacations, planning every moment (fly in, get up early, go see this, hike that, take picture here here and here for scrapbook, eat where ever food is served, fly home). That doesn't sound like a vacation to me at all. I do make an exception though when it comes to local food. I almost always look into the food at a location because my time and my calorie count is too precious to waste on mediocre, touristy food. So, I looked around online on the CHOW Southwest msg boards and noticed that Barrio Cafe kept topping people's lists.

Because of its location in a let's just say interesting part of town, we passed this place a few times while trying to find it. But, once inside, this restaurant did not disappoint. It serves not so much Mexican, more like Haute Mexican. Our meal included: Lobster Quesadillas; Duck in Tamarind and Chipotle Sauce; Slow-roasted pork with Yucatan salsa, grilled veggies,and fresh corn tortillas; and, for dessert, the best churros I've ever tasted with goats-milk caramel and vanilla bean ice cream (see this page to download the full menu). Try to go here the next time you're in Phoenix.

Warning: more indulgence ahead.

We made the most of our time away Saturday by spending the day at our resort's spa. We got there first thing after breakfast (and by first thing, I mean 11am), and parked ourselves by the pool - we swam, soaked in the hot sun, sipped cucumber-lemon water, talked, read, and slept. After an hour or two of that, we went to the gym (I know, we're so diligent with working out:). Then, we treated ourselves to a couples massage. Gentlemen, don't knock it til you've tried it - so relaxing and luxurious!

After that, B and I seperated to the separate mens and womens locker rooms to lounge in their steam rooms and jacuzzis. We ended the day by the pool again for snacks and a final dip.

That evening, the firm hosted their Summer Sizzler, a dinner and casino night, from 7pm-11pm. We thought it would be a pretty long night, but it actually was really fun. The people that Bryce works with are great and were a lot of fun to get to know. We did participate in the gaming (it wasn't really gaming though - fake money) with blackjack, roulette, and attempted to learn craps. PS - that is a surprisingly complicated game - we were such rookies around that table, but Bryce did impress the partners at the table with his lucky run of the dice - hopefully that off-set our newbie behavior....

Anyway, we left Phoenix early Sunday morning, got home mid-morning to take over from my parents, and, just as we were getting the update about Caro's wknd, I looked over at our entertainment center and there was a new TV in place of our old one!

My Uncle Jeff surprised us (surprise is an understatement - we were shocked) with a Sony Bravia 40"tv. He thought it would be nice for us to put our old tv upstairs in the loft - that way when C needs to stay up there (to be on her non-portable humidifer and O2 concentrator), we have more to do. We thanked him already but can't say thank you enough. A great way to end the weekend!
I encourage everyone to plan a small getaway soon - maybe you too will come home with great memories, a tan, and a new tv (you never know...)!

A Getaway!

Friday, June 6, 2008

B and I are going to Arizona for the weekend - his firm is having a retreat. Look for an update on Sunday or Monday!

Frank the Tank

Wednesday, June 4, 2008

Official weigh-in -

Weight: 24 pounds 6.5 ounces (50th percentile!)
Height: 30 inches (25th percentile!)

"Mom, I'm just a healthy girl who enjoys lounging around while getting her meal."

Here's a first: her GI slightly decreased the amount of food to give her! Not because she's unhealthily large, but just because she's not as active as a typical 16mo. old and doesn't need so many calories - hopefully she'll plateau for a little while and give our backs a break.

Onion Rings?

At a Silent Auction Benefit we went to over the weekend, Bryce bid on...and won...a deep-fat fryer (he has fond memories of college days, where his roommate had one and deep-fried Twinkies, Snickers, and Reeses galore, so he was very excited to win it).

So, last night, we decided to try it out. Hmm..but what to fry, what to fry... how about the Videlia onions my mom brought us last week? Yes, good idea, that's easy enough - cut a few onions, dip them in batter, throw them in the fryer? Right? Umm, not so much.

First, I of course had to search for the perfect batter recipe, but I only wanted to use the ingredients I already had on hand, which meant I made my own recipe out of a hodge-podge of other recipes...

Then, after having the onions soak for AN HOUR in a milk/water bath (from JofC), we drained and dabbed them...

...and I began making the batter - not messy at all...

Meanwhile, as I dabbed the onions dry, Bryce tried to fill up the fryer with enough oil. One bottle's enough to get to the minimum oil line, right? Try FOUR ...

As the oil heated, I whipped up some egg whites to add to the batter at the last minute...

...but the fryer would only go to the factory-set heat, as Bryce figured out here...

But, all's well that end's well - they turned out and we were happy w/them...

Now if only we'd remembered our Econ 110 lesson on diminishing returns - one or two would've been plenty...

Ensign Classic

Sunday, June 1, 2008

I know, I know it has been awhile. But we have a good excuse.

I'm an executive director for a charity supported by Senator John Ensign, and we have one main fundraiser each year, the Ensign Classic (see link under "Check These Out" for details). It's a three-day event with a registration, a reception and silent auction, a golf tournament, and a driving experience out at the Las Vegas Motor Speedway. Most of the attendees work in Washington, D.C., so I also needed to coordinate their travel.

This event was last week and ended on Thursday - I've been recovering ever since! But, it was successful; we raised $338,000, which will be distributed to Nevada charities. I've felt very blessed to be a part of this for the last few years; I get to work from home, keep my contacts pretty fresh, and do something with my talents.

B and me at Bouchon, right before the start of the Ensign Classic Reception and Silent Auction. Bryce helped me so much with this event. He's the best support in the world.

B took this picture once the golf tournament at Cascata was underway - as you can see, I was already unwinding with a book because the golf tournament is the last part of the event

My mom and a nurse watched Caroline while we were putting this on. She was excited for it to be over (although these pictures of her from today don't properly convey that emotion).

"What do I do with all of this attention?"

"I guess I'll just be a little lady."

Blog Design by Nudge Media Design | Powered by Blogger