The Sad, the Rad, and the Bad

The Sad

Ella lost another fingernail last night. This leaves her with one left. It’s on the ring finger of her left hand. Part of me thinks God is sparing that fingernail for when she gets married, but the realist in me knows that it will be gone in a few weeks. The first time she lost a fingernail I was completely devastated. I felt like it was the first real tangible sign of EB that wouldn’t heal. Now, I realize that it’s actually a blessing. The fewer fingernails she has, the less she’s able to scratch and get more boo boos.

The Rad

For those of you not raised in the 80’s, “Rad” is short for “radical,” meaning excellent or wonderful. So here is the RAD news. After 9 months of dealing with my new insurance, the DME (durable medical equipment) cap has finally been raised! To look at an insurance policy and see a DME cap of $10,000, it seems like a lot. However, when your DME costs average about $3,000 a month (they have been as high as $5,000), the $10,000 cap won’t go too far. We tried to work things out with the insurance company directly, but after 9 months, several doctors’ letters, pictures of her wounds and 2 appeals, we were again denied. So, we took it to a new level…to the VP of my department. He then sent a personal email to the CEO of the ADA. The next thing I know, the CEO has walked down to the HR department and told them that they need to make sure we have the insurance coverage we need. He even personally came to my desk to tell me that they were going to take care of Ella. He said, “you guys have enough to worry about without having to worry about her supplies being covered.” The next day we got an email from our medical supplier saying that they had raised Ella’s DME cap and were even considering eliminating the cap altogether. This is a huge praise! I know that I am so blessed to work for such a tremendous organization that makes sure their employee’s needs are met. They have been so accommodating with Ella and allowing me to take family sick leave to take her to Cincinnati. The fact that the CEO was willing to personally make sure that Ella gets her supplies just adds to the fact that the ADA is a wonderful organization who practices what they preach! And, have I mentioned that it’s only 1 mile from home!!!

The Bad

While I understand that “Bad” can be a slang term that actually means “Rad,” in this case I am using “bad” in its true sense, meaning…bad. Ella’s separation issues are not getting any better. Every morning when we hand her over to Metti she cries and reaches out for me or Joe. I know that this is all normal and part of being a toddler, and I know that as soon as I’m gone she’ll be fine, but it doesn’t make my heart feel any better. Every time it happens I just want to take her back into my arms and give her a big hug! Yesterday morning she cried when I first handed her to Metti, but when I went down to give her a kiss and tell her good-bye, I also handed her her Elmo doll. She was so excited to have Elmo that she didn’t even care that I was leaving for the day. No matter how much she cries for me, she still cries for Joe more. She is her daddy’s little girl!

In other Murray news, Grammy Janet was here last weekend. She made some of Joe’s venison into yummy meatballs, which he loved, and she made a nice marinade for some venison steaks. I know Ella had a lot of fun hanging out with Grammy and playing. She just can’t wait until she’s old enough to help Grammy make cookies!

On Monday some friends of mine, Dino and Janice Crognale (and Elizabeth and Isabella), from Massachusetts were coming through VA and decided to stop and stay with us for a couple of days. It had been a while since I had seen them, so it was great to catch up. They are in the process of raising financial support to become medical missionaries in Kenya. If you would like to learn more about Dino and Janice and their service, please click here.

This weekend is more of the same, trying to figure out where to put stuff and hopefully hanging some pictures so that our place actually looks like a home. The good news is that the Elvis bathroom is mostly done! My wonderful coworkers bought me special Elvis shower curtain hooks. They are in the shape of a guitar and actually say “Elvis” on them. They complete the bathroom.