Off to the beach

for the week!!! We are headed to Topsail for some fun in the sun and the weather is supposed to be sunny, yippee!!

I am so looking forward to some much needed time off from work.

Have a great week everyone and I will catch up with you next week!

Trying to come to a sense of understanding...

We had our monthly Bunko game last night. It was something I really needed after this week. It felt good to laugh. Eva plays with us sometimes so her presence was deeply missed, especially since we did a St Patty's Day theme. She always gets into the spirit with her garb and different head gears.

Thanks to a fellow blogger, Kelly, who posted a comment on my last post. I have put Eva in touch with her to help her in anyway she can. Apparently there is a trial at Duke Hospital here in NC that Hayden may be eligible for. I am still holding out hope that the diagnosis may be wrong. One can dream, right? Thank you again Kelly. You are a remarkable person.

On a brighter note, my softball team had a scrimmage game (just a game for fun that doesn't count) Thursday night and we won!!!! The girls did so well. I am so proud of them. They are really coming together as a team. We picked our team colors. They will be teal and black, very pretty. They wanted hot pink, but the shirts didn't come in that color. We have practice again today in just a little bit. It's a pretty day for it. Another perfect Carolina blue sky (and no it is not Duke blue for you ACC fans, lol!!!) Basketball is probably the one sport I cannot watch, so I am not thrilled about the tournament going on right now. I will root for Carolina just because Steph wants to go there (along with all my money!!)

Have a great weekend everyone. And just once, if only for a moment, take the time to just enjoy what is around you and appreciate it for how precious it truly is. You are all very precious to me.

This is my 100th post....

and unfortunately I only have sad thoughts today. A good friend of mine, Eva, has a small son that has been having health problems. They finally got a diagnosis of Krebbe's Disease which is fatal when diagnosed in children under the age of 2. The longest known survivor only lived until the age of 8.

My heart is heavy and my thoughts range from complete devastation to outright rage. The question that keeps entering my mind is WHY????

I know we all have different religious and spiritual beliefs so the answers will be varied. I want to share something that Eva put in her email to me. Her courage astounds me.

"My mom-in-law made me come home for a few minutes today while she sits with Hayden in the hospital. His G-tube surgery went well. He seems to be doing well post surgery as well. His tummy is still sore-you can tell when the pump pushing the pedialite through the feeding tube kicks on because he makes lots of noise and some upset faces. He hasn't actually started using the feeding tube for food yet, the X-ray yesterday showed some air behind the tube in his tummy. The doctors say that is normal and we have to wait to make sure there is no infection from that air before actually using the feeding tube. We heard from Dr. Tennison (the neurologist in Chapel Hill) yesterday. We have a diagnosis of Krabbe's disease. While it is not an immediate your son is going to die diagnosis, it's pretty close. This is a apparently one of the rarer forms of leukodystrophy. We have an appointment with Dr. Tennison tomorrow at 4pm. From the information I have been able to find quickly online (I want to get back to the hospital ASAP), it appears that Hayden will be with us for about a maximum of 5-8years.

Changing subjects for a moment - Laura, I'm glad your mom came through okay, she's been in my prayers since I talked to you earlier.

I'll let you know what Dr. Tennison says tomorrow. Thank you for your prayers. God sent us an angel yesterday, a red tailed hawk flew up and sat on our hospital window for about 5min. He was very interested in what was going on in the room (which was me going WOW! there's a hawk in my window) and kept looking around in the room. Then just as quickly, he was gone. It was really cool."

The Laura she is referring to is another good friend whose mom underwent a mastectomy yesterday for breast cancer. Eva is an exceptional person to be able to think of something other than Hayden right now and remember Laura and her mother in the midst of all of this. Her comments about the red tailed hawk were awe inspiring.

I am at a complete loss of what to do and say. I have never had a friend or anyone for that matter that was faced with this before.

I want to be there for her, but I don't know how. My tears are hitting the desk as I am typing this. I have to go...........

Off to the beach!

Well, we have finally decided that we are going back to Topsail Island for spring break. We are staying for the whole week this time though. Last year we only stayed 4 days. We are staying right on the sound so we will probably bring Will's boat. That will be nice. Relaxation here I come!!!

30 days and counting. We will be home for Easter though. Not that we really celebrate it much anymore since the kids are bigger. We still hide their Easter baskets though. There are some things we can't give up.

We are also getting ready to book our cruise for next year to the Eastern Carribean as soon as the dates are available. We have been watching a lot of shows on cruises on the Travel Channel (which has become one of my favorite channels now) and I am getting psyched. One cruise ship even has a British Pub on board, Woo hoo!!!! You know which ship I am hoping to travel on.

Have a great weekend everyone!