Trisomy 13 Awareness Day

Today is Trisomy 13 Awareness day. March because it is the 3rd month of the year and trisomy stands for 3 copies of a chromosome. And the 13th because that is the chromosome that is affected in Trisomy 13 or Patau Syndrome. March 13th also just happens to be the day that I went into labor with Reese, who was born 2 years ago tomorrow, with Trisomy 13.

I have always wanted to do more to help educate people about this disease. Don and I are still working on some of these ideas. In the mean time, I thought I would use my blog and facebook to help bring some awareness today.

Trisomy 13 is the presence of an additional 13 chromosome. Having a third (extra) number 13 chromosome, occurs about 1 time in every 5,000 live births. Trisomy 13 children have multiple abnormalities. Some include heart defects, brain defects, cleft lip, cleft palate and many more, including even more severe issues. Because of the many abnormalities, all of these children are survivors if they reach their mothers arms. They are true miracles of life. Many only survive outside their mothers womb a few short minutes, hours or days. While others can go home and survive months. Sadly, many of the children with Trisomy13 (Patau Syndrome) do not reach their first birthday. If you would like to learn even more about Trisomy 13, please visit http://www.livingwithtrisomy13.org/index.htm. Don and I leaned on this site nearly every day while we were pregnant with Reese.

Reese's memory page is on this site as well - http://www.livingwithtrisomy13.org/MemoriesOfReese.htm.

Also, here is a link to a news broadcast where Don and I were asked to talk about Reese and Trisomy 13. http://www.ktka.com/news/2007/jul/12/losing_infant_rare_disease_parents_want_help_other/

Recently Alaska governor, Sarah Palin, signed a proclamation stating that March 2009 would be Trisomy Awareness Month. Here is a copy of that proclamation - http://www.gov.state.ak.us/proclamations.php?id=1676.

My goal on this March 13th is to spread awareness of this rare diagnosis. By increasing awareness, I feel I am keeping my baby's memory alive. I know Reese's life had a far greater purpose, and maybe this was part of it.

Mommy loves you Reese.

"Held"

I added a song to my blog today. It is "Held" by Natalie Grant. I am going to leave it on through the weekend. Please take the time to listen to it and the words sometime. Today is Trisomy Awareness day. Tomorrow, March 14th, is the day my third baby girl was born. Reese Lorene Engel was born at 7:29 am and stayed here with her Daddy and Mommy and 2 adoring sisters until 8:38 am. And Tuesday, March 17th, is the day we said goodbye at her funeral. It will be a hard weekend, but I know she is in a better place. And as this song says, we are all held by God through everything - and we aren't promised a life without problems, we are promised that He will never leave us, no matter what.

Our Flooring Project

Whenever we found out that we were going to have our fourth baby, Don and I knew we were going to have to get new flooring in the dining room. It had carpet at the time and our kitchen table was too small for all 5 of us to eat at. So, after we received our tax refund this year we went floor shopping. We found some great wood laminate on sale and bought enough to re-floor our entry way, kitchen and dining room. Here is what those rooms looked like before our week of chaos...

Our kitchen with the lovely linoleum - I hated this floor! It showed everything and never looked clean. One time I sat and scrubbed every inch of it with a magic eraser and it was clean for the first time ever, but I also took the top coat off of it and it never really looked the same again.

Our entry way was fine, it just wasn't our favorite tile.

And our dining room, with the carpet. (Not the best idea if you are going to have 3 kids eating in there!)

The whole process was supposed to take around 3 days max, but they started on Tuesday morning and didn't finish until the following Monday evening. One of the days he was sick and of course, he didn't work over the weekend. As many of you know, I have some OCD issues and the fact that we were practically living in our bedroom and that my house was covered in dirt, debris and dust really took its toll. (They literally jack-hammered the tile out of our entry way!!) Here are some pictures of the mess and what we lived like.

This is where we spent all our time. My bedroom became Lily and Taegan's playroom and living room. Our master bedroom is not big enough for that!!

Before he left on Friday Don asked if he would be doing anything messy on Monday and he said no. He would only be installing the toe-kick and trim and finishing up a few things. So on Sunday morning I spent 4 hours cleaning my kitchen. Everything had to be cleaned - it was bad! Then Monday came and first thing he went to fix the cabinet above our fridge. (After we laid the floors, the fridge was too tall!) That would have been fine except he didn't take the cabinet down like we thought he was going to do, no, he did it right there in the kitchen. Needless to say, my spotless kitchen was now a total disaster again. All of my dishes, plates, cups, everything, were covered in sawdust, and wood shavings - and they were in the cabinets!!! So, on Tuesday I had to re-clean my kitchen, another 4 hours later it was done... again.

When everything was finally complete, we were very happy. I love the look and we are both so thrilled with our purchase! 3 days later, we finally have our house cleaned and put back together. It took a lot of work - that dirt and debris can fly everywhere!! Here are the final pictures!!

Brick Oven Update

I finally gave up on my husband calling Brick Oven to complain about our Valentine's day experience, so I called and spoke to one of the managers yesterday. She listened to me vent about our horrible evening and then apologized about how her restaurant had contributed to it. She said she was appalled by the thought that one of their waiters called us at home. She said they should never call a customer, but especially if it was their fault that they wrote the credit card number down wrong. She also admitted that the $50 extra that the waiter said it would cost the restaurant if we waited to process the bill till the next day, was a total lie on his part. I explained that we were so disappointed that we weren't coming back and she said she hated that this experience was the last time Brick Oven would have to leave an impression on us. So, she offered us a $50 gift certificate to make it up to us and hoped that we would take advantage of the offer and come try them again. I agreed to take it and come back some time. So, in the end I got want I wanted that night, someone to admit that what was going on was ridiculous and offer to comp our meals. This way they covered the cost of our meals plus some extra. So, hopefully the next time we return, we will have a much better dinner.