Tag Archive - Special Events

Carmen is 17 Months Old Today

December 20, 2007 in Lana's Journal, Tay Sachs with 0 Comments

Today is Carmen’s 17 month birthday! We celebrated by staying home! Sometimes the best days are ones in which I just rock Carmen and play dolls with Lauren.

We now have night duty nursing, 10 hours per night/7 days per week. HOORAY! Dave and I are finally getting some rest and Carmen is doing better because her nurse is doing Chest PT (Physical Therapy) at night. Today she sounded amazingly better. When her nurse showed up tonight, Carmen was in bed and smiled and laughed out loud when she came in and said hi.

We got a suction machine today. Carmen sees her pulmonologist in January and I think we will discuss medication to reduce drooling so that she doesn’t aspirate on saliva.

Carmen is doing well with the NG tube and continuous feedings. I managed to take both girls to Carmen’s neurologist appointment yesterday, with Carmen attached to the feeding pump. I was quite proud of myself! I set Lauren up with a purse full of Polly Pockets and she entertained herself for most of the visit. We are debating whether or not to start Carmen on anti-seizure meds. She is only having mild seizures and her neurologist didn’t think we needed to start anything now to control seizures. But, he suggested we try for a week or two and see if the meds might “wake” her up a bit and make her more responsive. Granted, making her more alert might make her fussy, so we shall see how that goes.

Today was Lauren’s 4 year old appointment and I am happy to say that Lauren has cracked the 30 lb. mark! She is now 31 lbs. 5 oz. and 40 inches tall! Carmen is somewhere around 25 lbs. at 17 months so they are built really, really differently!

Lauren was Mary in a play at pre-school yesterday! Her friend, Jack, was Joseph and I imagine that was just fine with Lauren. I hear good things about Jack from time to time! He’s a cutie-pie!

Tonight Dave and I met with a Hospice Social Worker who counsels parents dealing with the impending loss of a child. We had a good visit and got some very solid advice on helping Lauren deal with her sister’s disease and inevitable death. Lauren knows that Carmen has a disease (we decided not to use the word “sick” so that Lauren will understand the difference between what Carmen has and a common cold, advice we got from a family dealing with Tay Sachs, thanks Laurie!). But, like any 4 year old, Lauren does not truly understand what is happening. After we brought Carmen home from the hospital last week, Lauren commented that Carmen doesn’t have a disease anymore, that she got better in the hospital. I explained that Carmen is doing better with eating but that she does still have a disease. It’s tough knowing what to say. Lauren needs some information but we don’t want to over-do it and scare her. I pray for wisdom!

Thank you to Monica from Hospice who watched Carmen and played with Lauren today. And, to my friend Nicole, who sent over dinner!

Jesus in her Heart

December 15, 2007 in Everyday Family, Lana's Journal with 0 Comments

We are sitting here waiting to be discharged. I just had the honor of meeting Carmen’s little roommate’s family. I mentioned this sweet little girl before. Her parents have three adopted children, two medically fragile. I am humbled by their attitudes, love, and complete unselfishness. We did not purposefully adopt a terminally ill child and I am in awe of people who choose to care for very sick children. I think I have a lot to learn about giving of myself. I am becoming a very different (hopefully better) person because of Carmen.

Dave called last night to tell me that he and Grandpa took Lauren to our church’s Living Nativity. Afterwards, Pastor Joey did an invitation and Lauren raised her hand to accept Jesus as her Savior! She whispered the words as Pastor Joey prayed and then went up with Dave to talk to Pastor Joey. She is barely four years old but I think she meant it. I cried when Dave told me!

Happy 4th Birthday Lauren!

December 5, 2007 in Lana's Journal with 0 Comments

Lauren woke to a wonderful birthday surprise. Snow! It snowed all day and Lauren had a blast making snow angels, snowballs, and eating lots of snow! Carmen also got to experience the snow on her face when I picked Lauren up from preschool.

I really cannot believe it has been 4 years since Lauren was born. She is such a little lady. She makes me laugh every single day. She is so sensitive and concerned about others. I love that she thinks Carmen is perfectly wonderful, just the way she is. If only we were all so accepting of others.

We gave Lauren a Princess bike for her birthday. She has been asking for a pink and purple sparkly bike and this one is just perfect. Granddad and Nancy sent a doll named Lauren and Texas Grandma sent a Veggie Tales movie, The Wonderful Wizard of Has. Grandma and Grandpa C. gave her pink sparkly pants and a Princess bike helmet and pads. Carmen gave her a new teddy bear. Oh to be four again and get such fun presents!

Lauren asked for pancakes for her birthday dinner so we had pancakes, eggs and oranges.

It truly was a great day!

Turkey Day

November 23, 2007 in Lana's Journal with 0 Comments

We had a wonderful Thanksgiving! Dave’s parents came for a visit and we had quite a feast! I fixed sweet potato casserole, green bean casserole, creamed peas, mushrooms and onions, homemade cranberry sauce, Southern cornbread dressing, and yeast rolls. My mother-in-law cooked the turkey, gravy, mashed potatoes, butternut squash, stuffing and chocolate pie. My father-in-law made a pumpkin pie. The good thing is that we will have leftovers for the rest of the weekend!

Today we did a little shopping. My friend Karen is making a castle cake for Lauren’s Princess birthday party and I found a carriage with Sleeping Beauty and Cinderella figurines at the Disney Store. Lauren will LOVE it! She asked for a teddy bear from Carmen and my mother-in-law found one from the James Fund. (The James Fund is a non-profit organization dedicated to meeting the needs of orphans and widows around the world.)

Last weekend we had the honor of having Dave’s grandmother for a visit. Dave’s dad drove down with her and we had a wonderful time. We got some nice pictures of the girls with their great-grandmother.

Turning 32

November 7, 2007 in Everyday Family, Lana's Journal with 0 Comments

Today is my birthday. My friend Karen had a lunch at her house with a few mom friends and kids. Karen fixed yummy chocolate-cherry cake. Thanks Karen! Lauren and Carmen both had a nice time. Carmen gets tired out when we go places and took a little nap on my shoulder. She is such a cuddly baby! Lauren played with her friends and only came to find me to ask for a second piece of cake!

Tonight Dave got my favorite- Indian food! Carmen and Lauren gave me hand lotion and a nail kit. Dave gave me Red Letters by Tom Davis (author of Fields of the Fatherless). This looks to be my kind of book. The introduction starts with an apology. Tom writes, “The Christian church owes an apology to the almost fifty million individuals in our world currently infected with HIV/AIDS. Those of us who claim to follow Christ’s teaching should be ashamed for what little we’ve done to help the countless millions of women, children and orphans who have died or are dying.” Dave and I certainly aren’t doing enough to help the plight of so many in Africa. We sponsor a little girl in Malawi thru World Vision. I am looking for ways to do much more.

Since today is my birthday, I’ve been thinking about the past year. This was definitely one of the most exciting and the most heartbreaking years I’ve had. In one year we brought Carmen home, found out Carmen has Tay Sachs, AB Variant and sold our house at a huge loss and moved into a rental. It was a hard year and I don’t even remember the person I was a year ago. It makes me cry to think that as hard as this year was, a harder year is coming when Carmen loses her battle against this disease. I try not to dwell on the fact that Carmen is dying. There is ALWAYS room for a miracle! I want to enjoy each day with Carmen and Lauren. It has only been 4 months since we found out something was very wrong but seems like a lifetime.

As I write this journal, I am watching the CMA (County Music) awards. I do love country music! Kellie Pickler made me cry!

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