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By Dave ©, May 30, 2008 2:30 pm

With everything going on with Carmen, Lana and I often think about how it will impact Lauren when she is older, which is something we no longer take for granted. How much of this will she remember? Will she be lonely without a sister her age? Will she think we were stupid for adopting when, to the best of our knowledge, we were perfectly able to have “our own” children? Will she turn away from God because He was so unfair to her?

                                                                                …

This past Monday afternoon, Lana was out running errands and Carmen was sleeping in her chair in the living room. Lauren and I were playing Polly Pockets on the living room floor. Not that it’s important but I was “The Dad”, “The Mom”, “The Grandmother” and “The Female Doctor”. Lauren was “The Three Sisters”.

Remedy, the David Crowder Band CD, had been playing quietly in the background for about fifteen minutes. Suddenly, Lauren stood up, walked across the room, turned up the stereo, walked back across the room toward me, sat down, picked up one of “The Three Sisters” and continued playing.

“What was that?” I asked Lauren.

“I couldn’t hear,” she said.

The chorus of the current song was just beginning and Lauren chimed right in. “You never let go. You never let go. You never let go-ohhh. You never let go. You never let go. You never let go-ohhh.”

                                                                             Silence.

“You know that’s true, don’t you?” I asked. “Even if you have a sister who can’t walk or talk or if she goes to Heaven before the rest of us or…”

“I know, Dad,” Lauren interrupted. “I know that God never lets go. No matter what.”

                                                                          More silence.

If only for a moment, all of my worries and fears were gone. She’s gonna be OK, probably even better than that!

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By Lana, May 27, 2008 2:37 pm

With much sadness, I share with you that another Tay Sachs child has passed away. Bryan, a beautiful 6 year old boy, passed away May 18th. He is in Heaven now with his older brother, Brandon, who died in 2005 at 5 years old from Tay Sachs. We ask for prayers for our friends, Mario and Marlin who have endured more than we can imagine. Mario and Marlin are Guatemalan and we had the absolute pleasure of meeting them and Bryan in March at the Tay Sachs conference. They traveled from Guatemala to the conference in Florida. We pray for God’s love and comfort to surround them as they go thru this very painful time.

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By Lana, May 21, 2008 2:33 pm

Please pray for one of our heroes and his family. Today, Steven Curtis Chapman’s youngest daughter, Maria, was killed. The Chapmans adopted Maria from China. The Chapman’s teenage son was driving down their driveway and accidentally hit Maria. She was just 5 years old. Click here to read the full article.

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By Lana, May 13, 2008 2:32 pm

HOORAY!!!!!!!! Yesterday Carmen’s insurance case manager called and our insurance is going to cover both private duty night nursing and Hospice!!!! Huge thanks to Dr. Dubelman who worked on this for us. Thanks to the medical director who understood what we need. Thanks to Carmen’s case manager who called us and said she just couldn’t wait to tell us. And, most of all thanks to God who daily shows me just how much He loves us. We love Carmen so very much and He loves her even more.

One of these days I am going to learn to truly trust God and stop worrying and stressing. He has provided so much for Carmen. The next challenge that comes our way, someone please remind me that God ALWAYS takes care of the situation! Maybe not always the way I would have expected or even liked, but always the best way.

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By Lana, May 12, 2008 2:30 pm

Carmen’s seizures have come back in full force. We got them under control with Phenobarbital for a couple of weeks and then a few days ago, she started having small ones throughout the day. Facial twitches, 2-3 minute shaking, holding her breath until starting to turn blue, etc. Yesterday, the big ones started again. From what I have read, it seems that Carmen is having tonic-clonic seizures in clusters (formerly called Grand Mal seizures). I emailed her neurologist and she is going to call me today.

I sure hope this isn’t a pattern. We add a new seizure medication and Carmen’s seizures stop for a couple of weeks. Then, new and different seizures start. Then, the bad ones start again. Not fun.

I just got an email from Carmen’s neurologist and we are going to increase her Phenobarbital to 7 mls, twice per day. Hopefully this will get the seizures back under control.