Comments (2)

By Lana, March 30, 2009 10:05 pm

A couple of days ago I was lamenting to Dave the lure of junk food. I truly do love salads, veggies, and all things healthy but I also LOVE a good cheeseburger and fries. As we were talking, I remembered back to the one and only time Carmen had “junk” food. Father’s Day weekend 2007, we drove to Atlanta. My mom and two of my brothers drove from Texas and met us there. This was the first time anyone in my family met Carmen. We ate at the Varsity, a hamburger/hot dog place. Carmen was 11 months old and having trouble with solids, although we did not yet know why. I gave her a french fry and she ate it right up and opened her mouth for more. So, I sat there and gave her one fry after another. I remember feeling a little guilty that I was stuffing her full of fries but in hindsight, I am glad she got a taste of something other than squash, green beans and oatmeal (all of which she loved).

I don’t have a picture of Carmen eating fries at the Varsity but Dave took a picture at the Coke Museum in Atlanta. It’s kind of hard to tell in the picture, but Carmen has a huge, excited smile on her face. She really liked the big polar bear!

Comments (5)

By Lana, March 28, 2009 8:58 am

Later this week Lauren and I are flying to Boston for the NTSAD (National Tay Sachs and Allied Diseases) Annual Family Conference. Dave is going to stay home with Carmen since she still has C-diff. We are excited that NY Grandpa and Grandma and Dave’s aunt will be joining us for the conference. Just so everyone knows, they are really shy, quiet people.

Last year we drove to Florida for the conference. We met families who have lost children to Tay Sachs and related diseases and we met families currently caring for their affected children. It was wonderful to spend a weekend feeling very normal. Suction machines and seizures weren’t at all surprising to anyone.

I really wish Dave and Carmen were coming with us. We will miss them very much!

Last year was hard in that Carmen’s disease symptoms were starting and this whole world was new to us. I am looking forward to getting new ideas from the Symptom Management seminar at the conference.

And of course, Lauren and I are looking forward to seeing the families and the children again. Quite a few children passed away this year. They will be painfully missed.

While I’m in various seminars and workshops, Lauren will hang out with the siblings and have a blast! This is a world we never, ever expected to find ourselves in but we are very grateful for NTSAD and the support this organization has given us.

Here is a picture of Rachel’s mom, saying hi to Carmen at last year’s conference.

Comments (1)

By Lana, March 27, 2009 6:43 pm

Carmen update: Carmen still has C-diff. I don’t think the Vancomycin is doing anything except giving Carmen thrush and a yeast infection. Ugh. Carmen also had a fever today. We are still searching for nurses. We do not have a nurse tonight. We do have a nurse tomorrow night who is fantastic so we will be going to bed early on Saturday.

Happy 3rd birthday Kasey! Kasey is Dave’s older brother’s daughter (so Lauren’s and Carmen’s cousin). Kasey and Carmen are 4 months apart.

Happy birthday to NY Grandpa! I was thinking today about all the times NY Grandpa has driven 7 hours one way to help with the girls. One particular time stands out to me. Dave was away on business and Carmen was sick. She kept having these coughing spasms and needed to be kept upright. This was before Carmen had night nurses or Hospice care. I sat in her room in the glider and rocked and rocked her. Sometime in the middle of the night, NY Grandpa came in the room and told me to go to bed. The next morning I found NY Grandpa, sound asleep, with Carmen asleep on his chest with her head on his shoulder. He had sat the rest of the night in the glider, holding Carmen. I sure wish I had taken a picture.

Here is a picture of beautiful Kasey. (Wes, I somehow made Kasey’s picture the screen saver on our computer. I have no idea how and now I have no idea how to take it off! The Mac has a mind of its own! Definitely not user error. Ha!)

Comments (8)

By Lana, March 26, 2009 1:51 pm

Monica the Magnificent came over yesterday and gave me two of the most wonderful presents! A 3 hour nap and a scrapbook! That nap totally revived me. THANK YOU! And wow, the scrapbook is amazing. Remember Dave’s post on my birthday? http://www.beautifulcanvas.org/2008/11/33-things-i-love-about-lana/ Well, Monica took that post and all of your responses and made a book.

We first met Monica 15 months ago through an organization called Hospice Caring. http://www.hospicecaring.org/ Hospice Caring is a non-medical, volunteer Hospice. Volunteers provide practical and emotional support to terminally ill adults and children and their families. Before we had night nursing and before we had medical Hospice for Carmen, Hospice Caring was there for us. And they have stayed with us ever since.

When you go through something really tough, there are certain people who just know what to do and do it. They go above and beyond and just keep giving of themselves. Monica is one of those people. Thank you Monica!!!

Comments (12)

By Lana, March 24, 2009 4:03 pm

The past few weeks have been rough. Our wonderful nurse, Connie, moved away. In her six months with Carmen, she really revolutionized Carmen’s night care. Yesterday we found out that Carmen’s other great nurse, Susan, turned in her two week notice. Susan has been with Carmen for 11 months. She was with us when that horrible Robinul and Tylenol overdose happened. She stepped up and took over the details of Carmen’s night care and made absolutely certain every order was written correctly and that every nurse understood Carmen’s care. I don’t know what we are going to do without her! She will be working for an agency with better benefits but I sure wish we could keep her right where she is.

In the course of a month, we have gone from 84 hours per week of night nursing to 12 hours. We do have one really good nurse on Tuesday nights and I think I will pass out if she leaves!

The nursing agency did send out two nurses who both fell sound asleep on their first shift. Falling asleep before Dave and I even go to bed does not make a good impression. Nurses who are too tired to stay awake, especially at the beginning of their shifts, start making mistakes. There is no room for error with Carmen. Been there, done that with the Robinul mess and we will do everything we can to ensure that Carmen is safe and well-cared for. As of now, the nursing agency does not have anyone else to cover the shifts.

We would greatly appreciate your continued prayers that we find good nurses.

Yesterday, I felt like I was hanging on by the thinnest of threads. The doorbell rang and a package was on the porch. I didn’t recognize the return address from Oregon. We opened it up and found the prettiest handmade elephant, coloring book and markers, stickers, a lovely plaque that says, “Treasure Yesterday, Celebrate Today, Dream of Tomorrow”, Oreos, a card and a picture for Carmen.

Debbie and her two beautiful girls sent the package. Debbie said that she made both of her girls an elephant before they came home from Guatemala so she made one for Carmen to share with Lauren. Debbie’s daughter colored a picture of her and Carmen on the swings at the park and said that Carmen is her friend.

Thank you Debbie for such wonderful gifts. Thank you for sending them at the perfect time. I think God knew I needed something to lift my spirits. Thank you for sharing Carmen with your girls. We so much appreciate your prayers.

Here is a picture of the lovely elephant!