Tomorrow & Today

1stly: Tomorrow N has surgery for his second implant, bilateral. We leave our house at 4:30 in the morning.

The doctor, the doctor's office and the hospital haven't really told us anything to expect. This is disappointing. I've been reading things online, some is very out of date. Sigh.

2 Facebook comments I left at 2 different places:

Andrew, you are right. On my list of things I don't get: why DO (many) women run around 90% naked. If it is that comfortable why don't men, aside from legal restraints, do it too? AND! Why would there be the double standard legally for men? Must be like TV and politics ... men must be in suits, big, pasty & nasty while women have to be rail thin, in tight suits, and have   (usually long) hair, show legs, and feign sweet bitterness. 

RE: Rally to Restore Sanity:

--> "Hard times and not end times."

AND! I love that Tony Bennett sang. This is the team I want to be on. Let's make America better, not just bitter. And, let's laugh a little on the way.

My two youngest children (N, 9 & M, 5) have AB CIs. I feel that we are adrift and don't know where to go for specific advice. Nether of our children seem to be able to wear ear level CI, they fall off and are so expensive that it makes us nervous to let them wear them to school. Our insurance won't cover a 2nd. We don't know where to go for extra speech therapy and it is so expensive! We are currently driving 1 hour to the University of Utah. To get the CIs mapped we need to drive 3 hours to see Dr. C P. Dr. C S and his office have not been very helpful or responsive. The Utah School for the Deaf and Blind is a bureaucratic quagmire and also don't provide services since our children are no longer in their system. We do not live in an isolated area. I look forward to hearing from someone soon. My mobile number is ... and our home number is ... . Thank you for your attention, H

Small Talk & K Cake

Hey K!~ It's a spoon, not a shovel!!!

Tomorrow is K's 14th birthday! We are celebrating tonight with a triple layer lemon cake (Ashley's recipe). (Giving Stephanie H the day off.)

While mixing and heating and stirring and removing, N asked, "Mom, what does 'remove' mean?"

This is happening a lot lately. As N reads more and more, he is coming across words that don't add up to either his experiences or maturity. It is clear that his language/vocabulary is missing some critical and basic words. I need to keep a list. Review them with him.

The kitchen conversation continued:

H: M, what do you want to be when you grow up?

M: I want to be the same like S [sister S], cause she sings on the radio. And I want to drive too. And I'll drive safe.

And tres chic, like Mlle. S, to boot!

I've been making a lot of these flower pompoms lately for our entryway. They are from a great $10.00/5 Martha Stewart kit at ?! Wal-mart.

V is for Verb-ing. Or: I got a bad case of the Verbs.

I'm up late. Have an odd sore throat, should be in bed but I'm doing something I haven't done in weeks & weeks... catching up on friends/family via blogs. Honestly, I don't get the entire computer thing but I did love watching my niece KtG's 2 beautiful daughters be adorable with lollipops (she calls the candy "a sucker"--which is what S, at age 2.5 (14 years ago!) wanted to name her little brother, which is how he got the nickname, Lollipop, just sounded like a more polite name). And I enjoyed seeing my pals Noelle & Molly in the fine Utah Valley Magazine. Zina's very authentic chicken stock is, ummm, inspiring.

Learning Facebook, houseworking, reading, grooming, shopping, cooking, loving, spinning, yard work/rototilling/planning, speech therapy going, homeschooling, churching, skiing, visiting, quilting, attending parent/teacher confrontations, I mean conferences... Right now I feel that I'm doing a lot and none of it very well. Did I mention praying?

Actually, my mind often drifts to a cousin, the mother of a baby who later this month will have surgery for bilateral cochlear implants. He is actually a very blessed child. (N & M would really benefit from bi-lateral CIs but I can't sacrifice my family on the alter of insurance appeals and we really don't have approx $+50,000 EACH right now.) My thoughts are on his mother though. For all the blogs, Facebooks etc. I wish I could just call and talk to her. How is she doing? This is a brilliant, connected mother, with a super-fantastic husband. I don't want to intrude or leave any more messages. Their family is huge and supportive so I wonder if I need to talk to her for my sake. There are so many questions that I'd like answered. Perhaps I could answer some of hers...

M, whose language is faltering, told me today that my sketchbook is all fulled-up. I'm going to filled it up a bit more and am looking forward to starting a new one.

Kudos for KSL!!!

Thanks to everyone who told me about this story on KSL-5. The Cedar City family's plight is exactly the same as ours. Now that my computer is back on my desk I finally am able to look up the story. Here is the link:
http://www.ksl.com/index.php?nid=148&sid=5047066

The following is my comment:
Thank you KSL for covering this story!

My son Nathan also needs a second implant. We fought the fight with SelectMed as well. (They are indeed SELECTive.) On the day of the final appeal the Let Them Hear attorney flew in from CA, we had a journalist there, I showed a video and had a brief presentation... it took 11 months to get to that point and then, surprise surprise, my phone rang as we were driving out of the parking lot and we were told that just that day they had changed their policy regarding cochlear implants. Nathan was 5 at the time and was so happy! He, and his sister, were born with a condition that caused their hearing to deteriorate. Their hearing issue is our family's only major health issue.

The 11 months cost him the ability to differentiate many sounds and his speech is very affected. During that time he was angry, destructive and very lonely. His is still frustrated and often isolates himself. He spends a lot of time with books.

As small business owners our insurance rates went up and up as our coverage went down. It was especially frustrating for us since we didn't qualify for medicaid and would have to completely deplete our savings, and borrow money, at the time we were told it would cost us $80,000 for one implant. Time was also of the essence since people learn to speak/hear best in early childhood. Hearing, in general, is an invisible and discriminated disability. The hearing aids ($2000 each) and batteries really add up. When we appealed for hearing aid coverage, for our infant, we were told they are cosmetic.

Another issue in Utah is the Utah Schools for the Deaf and Blind. KSL please visit the Utah County preschool facilities. 25 year old, broken, NOISY trailers. Please chat with the entrenched, retrogressive administration. Ask about the USDB's budget and especially about weak services for the lucky Utah children who have implants, especially compared with other states' programs.

Thanks for listening!

C is for Car Trip Critters.

Here is N with one of his recent car trip critters. Playdoh/wikistix aren't really so great for car trips. N made fantastic things on the windows; the window in the WAY back of the van.

He is a doll. Wish his CI was working better. On Saturday he said that he thinks M hears better than he does. That is an amazing statement. She does hear better, how does he know that? Chance pointed it out to him and N has noticed too.

:(