THANKFUL #4-Medication

When you think about a natural disaster or something happens that requires you to flee your place, what would you take? One of the first things on my list are Ellie's meds. I shudder to think what would happen if we could not get her medication to her. One controls her blood pressure, the other keeps her function going and the other helps her fainting spells (we think). She used to take a very strong drug that I believe was the turning point for her heart called Digoxin. A drug loaded with things that could go wrong but also things that could go right. When they told us that she needed to go on it, I remember thinking, just stop with the side affects and remind me why we are giving this to her? All I heard was that this was an option to possibly stopping her heart from failing. Wow! I just don't know what I would do without these in our life. And if it means that we have to give them to her for the rest of her life, no biggie. It's becoming second nature. We have done it now for a year and a half. We went to Heart Camp in August, and some how, I managed to forget my Enalaprel. We were contemplating running back two hours when we had about five moms who had heard our plight offer to give us some of theirs. Sad to have so many on the same drugs, but very helpful. Every time their is a change to her meds Ellie's body has to learn to adjust. Particularly her passing out spells. We recently saw Cardiology on a Friday, changed meds on Saturday and has a pass out that Monday. Also, two of her pass out spells happened after I forgot her morning dose of Enalaprel. I think there is some sort of connection. That and getting those stinking Synergis shots which also start this month for the duration of the cold and flu season. Yeah! Fun for us. Bring it on, I dare ya to make her pass out exactly five days later. Do ya see a pattern? Even though I hate these shots, I know this will help her in the long run. Meds, we love you for all you do for our little girls. Even Macy is dependant on asthma meds. I am so thankful for modern meds.

THANKFUL #3 Claire Hope

Claire in her bouncer. She loves to be outside and loves to watch her sisters play.

At Halloween Claire got to dress up as Snow White. What a cutie and she left the wig on for quite a while.

The girls having their morning bottles. Yes Ellie still takes a bottle but it's the only way she gets down one of her meds. Plus the girls always have some good bonding time in the morning.

THANKFUL #3-CLAIRE HOPE

If you saw the recent news clip on Ellie, they forgot to mention Ellie had a sister born after her named Claire. We wanted to clarify that for those of you wondering what happened. She was born sixteen months after her. And let me tell you it has been a lot of fun having two babies. My life the past seven months has been quite a blur. Lots of diapers, lots of poop, lots of blowouts, lots of throw-up and a whole lot of laughing to help us get through it. One of these days I will get my side bar updated to show that she is part of our family also.

This little one has been such a blessing to our family. She is such a happy baby. When she wakes in the morning, I check on her to see if she is awake because she usually will not cry to let me know that she is up. Family has given her the nickname "Smilely." Her demeanor was exactly what we needed, when we needed it. She gave us a good distraction during some very trying times. There were many a nights at the hospital, where I had to remember the new life growing inside of me. Even though I wanted to stay up all night and watch my Ellie sleep.

Claire at six months is already scooting around. She started crawling on her seventh month mark. She loves to laugh at her sisters when they throw a plastic ball in her face. Or when you rub your nose in her neck. She has the cutest laugh. She sleeps fairly well despite her very scary start. She would sleep all day and cry (literally) all night. It was pure torture for about a month. Nothing would quiet her down. The swing, holding her, sleeping on us, gas bubbles, nothing! Then we discovered it. Rays of light are coming down this moment and the heavens are opening up to blue skies. As we were facing another night of no sleep, I happened upon a bin of clothes that my sister gave me. I pulled out this glorious garment that was white and had velcro tabs on it. It was a snuggie! We wrapped it around her that night and instantly she settled down. Nate and I looked at each other and with a glimmer of "HOPE" for the first time in a month and crashed. We woke the next morning at five to find her sleeping snuggly her snuggie. Best invention ever!!! This saved our Claire Bear from a disastrous beginning and into the beautiful little girl we know today.

Thankful #2

THANKFUL #2-Technology

This may sound like a funny one, but technology has been my saving grace the last few years. I had the pleasure recently to hear Paul Cardall's mother speak at a Heart Mom's lunch and I realized how lucky we are to be able to reach out and find other mom's and support groups out there to be able to lean on, cry to, vent to, learn from, mourn with and so on. I recently found a mom that started a group for Mom's with Cancer Fighting Kiddos. Awesome! I do feel a little lost when it comes to Ellie's particular type of cancer. I have only met a few with this rare type of childhood cancer. Technology has saved me many a times like when we moved to St. George and we were able to stay in touch with so many friends through Facebook and cellphones. And I get to still keep in touch with all our St. George friends that we made while we were there. In the hospital, I was able to skype Nate almost every night at home over three hundred miles away. I am so amazed at how far technology has come.

Thankful #1

I am going to make a THANKFUL list for the month of November. I may not get to post everyday due to our limited internet access but I felt like it was a good idea to note all that I am thankful for right now.

#1-My Family

I have been so blessed to have this beautiful family that Nate and I have helped create. Four beautiful girls and one angel make for such fun and chaos at the same time. I can't believe how far we have come as a family and how they have given me a reason to get up in the morning. I love them more than I can ever imagine I would.
In all that we have been through, this is the life that I chose and I have learned and loved so much!

We're Back...

This is Claire, she does exist...
The race...

We have been out of touch these last six weeks because our computer broke. We were able to buy my sister's computer, thanks Jill, so in the next week we have a lot of catching up to do. We had a very successful race, Eve's Birthday and follow-up on Ellie and lots of in between. Sorry if you are faithful followers. I have truly slacked on the blogging. Ellie had a beautiful moment on the news and we got to give the very simplified version of her story. She is a very special child and there's a reason that she has gone through these experiences and we are ever so lucky to be her parents. This journey has been a huge life lesson for us and our family and what ever the future holds for us, we feel blessed. By the way, we also have a little girl named Claire who seemed to not be mentioned in the news story. So we will get a update on how she has been doing. She has been a complete joy in our family. Heavenly Father new that with all we were dealing with, that we needed her constant smiles and easy going nature to balance things out.

Macy and Adrie are dealing well considering their own issues with having Ellie as a sister. That has been a balancing act in itself. Till next time...

The Ten oclock news!

It went better than expected. Ellie was a little hyper. But I think that's better than throwing a fit. They will air it tomorrow night at ten. I am not sure how much of her story they will air because hers is a very long and complicated one, or if they will just talk about the race. But I want everyone to know how grateful we are for the support love we have felt. We know many of you have prayed for our little girl and us throughout this journey. It means so much to us!

We are so excited for the race on saturday! If you've followed our blog and come, please introduce yourself to us. We would love to meet you. I am a little nervous about how I'm going to keep my emotions in check that day.

As for an update on Ellie, we recently had an MRI on the tumor, and the good and bad news is that the tumor is the same size. We meet with Dr. P October 6th to find out where we go from here. Please keep Ellie in your prayers so the doctor's will be guided to the best option for Ellie and her heart. Ellie's also had a few more passouts than normal and it's really stressing me out lately.

Ellie's in the News!

That's if she cooperates. It will be this Friday the 18th on KSL. I will update later on the time. We are so excited and nervous at the same time. They will mostly be doing of feature on her upcoming race so stay tuned. Ellie could go either way tomorrow, so we will see if she is her cute little self or her want to be shy and mad at the same time. With strangers you never know. We took her to the doctor last week and the first thing she did when the doctor walked in the room is pull her shirt up and say "heart." She is so used to people listening to her very own special beat. We would love to see whoever want to come to the race on Saturday. Thanks to all who have put so much time and effort into this. We truly appreciate it!