Tuesday, February 16, 2010

W.M. Awards- I won!!!

We were letting her skin air out because the electrodes are hard on skin. But she crawled up next to me on the couch, kicked back, grabbed the remote and pointed it at the T.V. I really hope she didn't pick that up from me.

We took the girls for a train ride on Free day. Crowded, but the girls loved it. It was worth the smiles.
The girls on their school Valentine's Day. They wanted their hair curled for the festivities.

Ellie likes to hang out in any basket. Including the toy basket. She even tried to climb into a basket that was a not even a foot wide.

Well... I managed to do it again. I won the Worst Mother Award. It started on Friday when I got home from taking the kids to school, when I noticed that Adrie left her Valentines on the table. Since her party didn't start till 12:30, I thought I would run them to her right before. So when I brought them into her classroom, she had the saddest look on her face. And to my surprise, they had their valentines all passed out and were going through them. I felt so bad and was imagining her disappointment when she opened her backpack to find that they had been left at home! She ran up to me with a smile as the tears were welling up in her eyes. I am not sure if it was a mix of disappointment and happiness that I finally showed up.

The day before Valentine's Day, we make an extra special trip to the store, of course I am doing this last minute, to buy some candy for the girls. I put the bag down and didn't think more about it until morning. So I recruit Nate to take the girls upstairs so I can make their Valentines. (Last year I did a Heart Attack Valentines where the girls woke up to a Valentine by their bed and followed yarn wrapped through the entire house. And every couple of feet their was a heart telling them what was special about them.) They loved this and look forward to what I come up with every year. So after they got done making Valentines for me, they came and found their Valentines on the table. At least the finished product was cute. But I have always tried to have them wake up to their Valentines.

Then on Sunday, Macy almost 9, lost her tooth. She was so excited!! She talked about it all day and into the night. She hadn't lost a tooth for a few years, and because Adrie had recently lost a few teeth recently, Macy was excited that it was her turn. So when we tucked her in, the last thing she said was, "do you think the tooth fairy will come visit me tonight?" and we said, " sure, now get to bed." So we went to bed and I didn't have a second thought about it till morning when we heard whimpering coming from the girls room. We walked in to Macy crying and Adrie interpreting for her. She goes on to tell us that Macy is sad because the tooth fairy failed to come. As I am racking my brain, the only thing that I can come up with is, "maybe the tooth fairy took the holiday off." Then Adrie proceeds to tell us that the tooth fairy came on Christmas Eve along with Santa Claus for her tooth. This only makes Macy cry harder. Hopefully we can pull it together tonight. Once again, she is reminding us all night that she lost her tooth.

So you can see that I earned it. I nominated myself for the award. I just hope my girls forgive me for my short comings. I could blame it on the prego hormones, but I admit that I just dropped the ball this year. Hopefully I will have it pulled together next year.

Update on Ellie: She is so stinkin cute lately. She is doing this dainty clap and wave that is priceless. She has an MRI next week and I always get super nervous for that. So I think we will know more on her status, but every time I say that, we just end up confused as ever.

Monday, February 8, 2010

It's CHD Awareness Week!!!

When Ellie was 32 weeks gestation, she developed Tachycardia (a fast heart rate) and subsequently a severe heart murmur. Shortly after delivery, it was heard again by our pediatrician. Visit after visit I kept asking about the murmur and had other troubling signs that something was not right. She would breathe in short shallow breaths, she would sweat profusely when she ate. Her legs always had a marbling to them that looked like a rash and there were no pulses in her feet. She quit growing from two months to five and a half months. She also quite babbling about a month before she was finally diagnosed. These were things I continually went to the doctor for. But every time I was reassured that she was o.k. and that they had a simple reason for it. I am not telling you this to worry, but a mother's instinct is so strong and wish I had gone to a different doctor for a second opinion. It's worth it if you feel that something is not right. Ellie was born with a Coarchtation of the aorta and a bicuspid aortic valve. If caught at birth, is usually repaired with one surgery and possible stints later on. Because hers went undiagnosed, she developed severe dilated cardiomyopathy and at the time doctors said she was probably days away from death. Some have not been so lucky. This is when we entered the world of CHD. I have met so many wonderful people that have been such a great support to us and those that already knew us that have prayed on our behalf. We are so grateful for all the medicines and measures that have kept Ellie sustained thus far. I wanted to post about the statistics of CHD for awareness week.

CHD Statistics-

*Every fifteen minutes a baby is born with a CHD.

*Congenital heart defects are America’s #1 birth defect. Nearly one of every 125 babies is born with a CHD (almost 1% of all children born each year!).

*Congenital heart defects are the #1 cause of birth defect related deaths. 1 in 3 children who die from a birth defect have a congenital heart defect.

*This year almost 40,000 babies will be born with a congenital heart defect.

*In the U.S. twice as many children die from congenital heart defects each year than from all forms of childhood cancer combined. Yet funding for research of pediatric cancer is 5 times greater.

*From 1993 to 2003 death rates for congenital heart defects have declined by 31% due to advances made through research!

*There is not yet a preventative cure for any type of congenital heart defect.

*Of every dollar the government spends on medical funding, only a fraction of a penny is directed toward congenital heart defect research.

Hopefully by spreading awareness, someone might be spared the sorrow and the grief that comes along with this birth defect. I would love to see more research go toward this. And as technology gets better, we are hopeing to see research go towards a possible cure.

Update on Ellie-She has not had a passing out episode since she has been on her life watch monitor. Yeah!!! But it would be nice to see what her heart is doing. She has an MRI on Feb. 23 if she can stay healthy for 3 weeks before. Wish us luck on that one! Hopefully I can post on her first steps soon. She's taken a few so far.