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By Lana, June 30, 2008 2:59 pm

Carmen is not doing well at all. She has been awake for days, only sleeping for a couple of hours at night. Her heart rate is staying in the 160s while awake. She is really laboring to breathe. Today her Hospice nurse, Leslie, came by and we are putting her back on an antibiotic and prednisone. We have started giving her Morphine and Lorazepam (Ativan) to calm down her breathing and help her sleep. Carmen is having many apnea episodes where she suddenly stops breathing and then restarts.

Leslie said today that the end could be at any time.

Carmen is not following a “typical” Tay Sachs pattern. Perhaps it’s the AB Variant. I am not sure we will ever know why she is having such intense breathing difficulties. There are no AB Variant patients to compare her to.

All along Dave has been praying that, no matter what, God would be merciful to Carmen. As heartbreaking as losing her is going to be for us, I cannot think of anything more merciful than for Carmen to be in Heaven. She will be able to run, play, smile and laugh.

When I am having a hard day I think it is horribly unfair and wonder how this could be God’s best for our lives. But, then I remember our pastor’s wise words when he said what a privilege we have been given to usher this little girl into the Kingdom of Heaven. We so often ask for blessings but then tell God what those blessings should be. There is no doubt that Carmen is one of the biggest blessings of our lives even if we only have her for a brief moment.

I don’t know exactly how I will feel when Carmen dies but I think we will just feel so incomplete as a family. We may go on to have or adopt more children but no one can replace Carmen. I am going to miss her so very much. I want her to keep fighting so I have more time with her but I do not want her to suffer.

Last week I had a really bad day. The next morning Dave let me sleep in and when I woke up he told me that Wendy had dropped off Chicken Parmesan! Now, that is a good start to a day! Thank you, Wendy!

My sister-in-law, Karen, and her 3 kids have stayed with us since Friday and the kids are having a blast. Lauren loves having her cousins to play with. Dave got some great shots of Dakota, who is almost 8, holding Carmen.

We are working on Carmen’s Celebration of Life party on her birthday. I think it is all going to come together!

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By Lana, June 25, 2008 2:58 pm

Happy 27th birthday Kevin! I hope you had a really great birthday! Kevin is one of my younger brothers. He is best known for his chili made with something like canned Wolf brand chili, BBQ sauce, jarred spaghetti sauce and maybe even ketchup!

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By Lana, June 25, 2008 2:57 pm

Carmen and Lauren are both doing much better. Carmen is on her second day of Zithromax and is responding well. Her biggest issue right now is uncontrollable secretions. She is soaking thru several bibs per day. We tried the Scopolamine patch and it worked really, really well for a few weeks and then became completely ineffective. I guess we will go back to Robinul to dry up secretions. Last night Carmen’s nurse said she sounded like she was drowning. I hate this. One day one thing works and then the next it no longer works. She can be on an insanely high dose of a drug, larger than an adult dose, and have no relief at all from symptoms. And we have never found anything to help reduce her strider (LOUD breathing sounds). After listening to her distressed breathing all day, I often want to scream. Not out of frustration at Carmen but out of complete frustration that there is not a thing I can do for her.

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By Lana, June 22, 2008 7:02 pm

Last night we had a wonderful time with our friends Ted and Karen and their kids. Dave is becoming a master griller! The secret’s in the sauce!!! (Anyone see Fried Green Tomatoes!?) I have two favorite marinades and I’ve tried a ton of them and made my own. But, these two are the best, in my opinion. McCormick Grill Mates Tomato, Garlic and Basil Marinade and McCormick Grill Mates Hickory BBQ Marinade. You add olive oil and vinegar to the dry package mix and marinate the chicken overnight. Yummy!!!

For summer I LOVE salads. My friend Karen brought a salad last night that I really could eat for every meal.

Karen’s Delicious and Nutritious Everything-in-the-Fridge Salad
Mixed greens
Grape tomatoes
Canned black beans, drained
Canned corn, drained
Cucumber, sliced
Onion, sliced (I like Vidalia)
Green onions, diced
Black Olives
Cilantro

Dice or chop whatever needs chopping and mix everything together. No need for salad dressing as the corn and beans add a little bit of moisture. Enjoy!!!!

Big thanks to my friend Cristie who picked up Carmen’s birthday party invitations yesterday! You are thoughtful and kind and congratulations on finding out you are having a BOY!!!

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By Lana, June 22, 2008 2:54 pm

Carmen’s fever is back and she sounds worse than usual so please keep her in your prayers. Her Hospice nurse is going to call in an antibiotic tomorrow. Hopefully whatever is brewing will respond to the antibiotic.

Lauren also woke up with a fever. She told me that her forehead was hot. Yes, 103 is hot! She is taking an afternoon nap right now which it totally uncharacteristic of her. Tomorrow will most likely be a doctor day for us!

I haven’t heard Carmen cry in months. Friday she burst into tears. I couldn’t find anything wrong and she stopped after a few minutes. It was hard to see tears rolling down her face and not have the slightest idea what might be wrong.

I went to church today while Dave stayed home with the girls. After the service, I walked past Pastor Dale and he asked how we are doing and said he is praying for us. We go to a big church, something like 6,000 people. With this many people, I am sure Pastor Dale and Terry know a ton of people with huge needs. I feel blessed to know that this very Godly man prays for our family.