Emailing Authors of Books

**THROWBACK POST**

October 30 2013:

Sometime last week Lillian asked me if she could email the authors of books she’s reading. I told her “Sure”. Well, she did just that and heard back from two of them. I didn’t know until I saw the reply emails … (I monitor her incoming email).

I emailed each of them back to thank them for replying and now she has an autographed copy of one of the books on the way to her. I’ll share who it is and which book when we get it .. and, you bet, with an awesome picture too! These two beautiful souls, aka: Thomas & Lillian, continually surprise me!! xoxo

 

Halloween is Spooky by Lillian Darnell

**THROWBACK POST**

October 11 2013:

Still email purging here! Down to about 2800 unread emails! Pretty good since I started at about 5000 a few weeks ago! Found this fun Halloween poem Lillian emailed me last Halloween! Just y’all never mind that last word in her poem …

“Halloween is spooky
Clean bis kooky.
Christmas is kind.
Mist tis bind.
Valentine’s Day is love
Tine’s Bay biz dove.
Fourth of July is about fireworks
North shove my his out dire clerk.
Birthday is how old you get
Dearth grey sis bow bold to tit.” -Lillian Darnell

(This one is included in the book too! – Arriving near the end of November 2017!)

I Will Never Ever Ever Ever Forget this Night

**THROWBACK POST**

October 8 2014:

“Last night was a night I’ll never, ever, ever, ever forget!” -Lillian …

I woke them up at 3:30 this morning to have a look at the lunar eclipse. We sat on a blanket and used the Star Walk app to help us see all the cool things happening that we couldn’t see with the naked eye! So awesome! Got them back into bed about 3:50. They instantly drifted back to sleep.

However, I never got back to sleep. Oops! I may run out of steam pretty early today!

Happy 16th Birthday to Lillian Plus Camilla and Lillian September 2017 Date Day

September 14 2017:

Happy Happy Happy Sweet 16th Birthday Lillian!! She requested dark chocolate cake with cream cheese frosting sprinkled with dark chocolate. Cake for breakfast! Yum!

Today is the Lillian and Camilla September 2017 Date Day too. Be ready for bunches of pictures, a special blog post dedicated to Lillian, and she held a Facebook live “Birthday Party”.

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Sweet, fun, and short “Happy 16th Birthday” video for Lillian Darnell! Just a few Team TLC adventures using Google animated photos. I LOVE YOU Lillian!!

Press the “i” in the upper right hand corner for a link to Wish Lillian “Happy Birthday” …. Or make your wish in the comments here … xoxo

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After cake and presents we went for a swim, then to pick out a special cookie.

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Ended the birthday/date day with a candle light sunset car picnic with an amazing view.

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Round and Round With Ridiculousness – Health Insurance Companies

August 3 2017:

“Those people at the insurance company are a fool’s behind.” -Lillian Darnell (I have no idea what a fool’s behind is, but in this case I’m guessing it’s not a good thing.)

Lillian’s craniosacral therapist left a message today that we need to cancel Lillian’s Monday appointment as Anthem Blue Cross has decided they will not pay for more sessions.

She’s ONLY been going for about 2 years now and looks forward to each monthly session for the relief it provides. It’s for pain management and they have been paying all this time (with disabled medicaid as back up).

Her amazing therapist only called as a courtesy so that we don’t incur a bill and to give her office time to dispute with Anthem. So grateful for her and the staff at the Northern Nevada Medical office.

As a side note, I had a lengthy conversation with a chromosome 18 dad at the conference who works for Blue Cross Blue Shield. I did not know there is a difference between Anthem and the Blue Cross for which he works. Anthem is for profit and Blue Cross Blue Shield is non-profit.

He wanted to help me so badly with an issue I gave up on with Anthem. Due to a mistake they overcharged me by $50 about 2 years ago. I tried for about a year to get the money back and eventually gave up. I have no patience in talking with the people who answer the phone.

They also have a flaw in their online system as I cannot register Lillian for an online account to pay her bill or find out which dentists take her insurance. One must be 18 years of age. Well, she’s not, but she has her own policy in her own name (grandfathered in since she already had the policy). No one seems to care about this glitch.

I am so thankful that we hardly ever go to the doctor and my heart aches for my C18 friends who go round and round on a consistent basis with insurance companies. Life is too fleeting and we should not have to worry and fuss with this … Sending so much love to all who have to go round and round for ridiculousness … xoxoxoxo

**Update** August 26, 2017:

Lillian’s craniosacral therapist had a peer review with someone from Anthem. It happened so fast I didn’t have time to get supportive documentation to her. She went round and round with them and they would only give her one more appointment with us. They said that Lillian is not getting better so these visits aren’t doing her any good ….

Next step is checking with the Research Center to see if there have been any research studies done regarding chronic pain and 18p- … Round and Round …

I’m the Queen of the Mountain

**THROWBACK POST**

February 22 2014:

“I’m the queen of the mountain!” – Lillian Darnell

Celebration time! This young lady remembered all on her own today that she needed to get a book for school from the library. I did not remind her at. All! We did not even discuss it today or yesterday.

Also in the past week, she has been doing basic addition and subtraction in her mind!! This girl! This girl who stood on this little hill today and without any prompting from me said, “I’m the queen of the mountain!”

Celebrate those milestones whenever they come …. however long it takes! ♡

Lillian on Hill 2.22.14

Lillian Interview – February 2013

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**THROWBACK POST**

February 11 2013:

Little Washoe Lake 6.14.13 #2

One of our sweet Chromosome 18 friends is doing a research project on Chromosome 18 affected individuals and their family for school and asked us to participate.

Here’s Lillian’s contribution!

Go Courtney MacMasters Go! Courtney is sibling to one of our C18 affected friends!

(We did this without using her iPhone and Proloquo2Go so it could be seen how 18p- affects Lillian.)