Beth's Birthday - Jan 2014

Beth decided she wanted homemade pizza for her birthday. We had fun making it, but decided it tastes much better when we buy it, plus it's actually cheaper to buy it, so I don't think we'll be making it much in the future.

Pizza also is not a fabulous birthday food as it stains your face, something we didn't realize until I just uploaded the photos and saw the orange ring around Beth's mouth :) At least it was yummy!

We put all her presents in a box instead of wrapping them, as usual :)

Beth picked a cake shaped and decorated like a wrapped present. 

Happy Birthday Bethy! We're so glad you're part of our family!!!

Gingerbread Houses - Jan 2014

Due to Cricket's death, we waited for few days to decorate gingerbread houses, an activity we usually do on New Year's Eve. Kiki and her boyfriend Dan (also Rob's best friend) joined us.

Eva picked up on the idea of taking a photo of finished gingerbread houses and announced that she was done with her house after the addition of each piece of candy. 

Laura skipped decorating her house and just ate the candy. 

It was only the second time Dan had decorated a gingerbread house.

Megan wore the New Years' crown she made out of a styrofoam cup.

Christmas 2013

Christmas was really low key this year. It was just the eight of us (ok, so even without guests, we have a full house).

We opened stockings first. I still haven't made Laura's stocking, but she didn't seem to mind :)

Then we got the ham in the oven and opened presents. The kids each got three presents from us. We also bought five small gifts for each child and the kids went "shopping" in our bedroom and picked out a toy to give to each of their siblings. We had a few gifts from relatives and friends like Jojo, Damien and Rhea, and Aunt Rosalie and Uncle Frank Kile. I think it was just about the right amount of presents as the kids had plenty to open, but finished before they got bored.

Three of the kids (everyone except Beth, who isn't interested) got a Nintendo 64 controller. 

The older four kids each got a game. Megan got Cranium, Kylie got board game based off Temple Run (a game she plays on her friends' tablets), Beth got Clue, and Jack got Jenga.

Tita Rhea made the girls each tutus and made Jack a superhero cape. 

Neither Rob nor I can remember what we got each other for Christmas. That's what happens when you wait three months. We each pick out our own big presents, then get each other something little. Rob finagled his way into getting me pralines from Neiman Marcus (he won them at work, so I had no clue he had gotten them), and candles. I can't remember the little things I got Rob.

Christmas Eve 2013

I've gotten really far behind on my blog posts. We've spent the last three months figuring out how to make the EECP treatments work and then just getting through the seven weeks of treatment. I haven't taken many pictures over the past three months, but there are some highlights that haven't been blogged about yet.

First is Christmas Eve. I love cuddling with my smallest munchkin in the morning after we wake up :)

Rob worked a half day. It was casual dress and when he got home, he looked so much like his dad that we snapped a picture before making him change for Christmas photos (which I posted back in December). 

As usual, the kids got new pjs. We didn't get matching ones this year. There are very few places that sell matching pjs that range from size 18m - size 14. 

Then the kids and I read "The Night Before Christmas". We all recite it together.

Rob read the Christmas story from the Bible.

We watched the kids' individualized Santa videos.

  

Even Daddy got one. Santa told him he needed to work on tooting less. The kids found that hilarious :)

EECP

I had my last EECP treatment last Monday. Thirty five hours of treatment, plus twice that in driving time. We had pretty much forgotten what it was like to have me home at all. I saw Laura and Eva for a couple of hours on Monday and Tuesday and saw the older kids on Tuesday nights and that was it. I left the house every day as everyone else was getting up and got home after everyone had gone to bed. It was a hard seven weeks.

I took few pictures on my last day. My phone takes horrible pictures inside, so please excuse the quality.

The first is me with Shauna and Ricky, two of the techs who ran the treatments. Getting to know them was definitely one of the highlights of the treatment. I got to see them pretty much every day, along with another tech named Julio. I loved talking with them every morning and I really miss getting to see them. 

This is me strapped to the bed as Shauna sets up the treatment. The facility had eleven beds, ten of which were in the main room. One was in a private room, and by luck of the draw, that was the room I ended up in. If you want to learn more about the treatment, detailed information and videos are available here - http://www.eecp.com/

The first two weeks I felt horrid. The third week I got dramatically (for me) better. Enjoying having some energy, I pushed myself and ended up crashing and burning within a week. I never really recovered from that. With cardiomyopathy, you have to walk a fine line between a beneficial amount of exercise and too much exercise, which makes you exhausted and increases water retention. The EECP treatments were similar to physical exercise and an hour a day, five days a week, was significantly more than my body could maintain. I started gaining weight (water retention) and by the end of treatment had about a gallon of extra fluid, mostly in my chest and abdomen, but also in my arms and legs. I weighed as much as I did when I delivered Laura and Eva. My cardiologist doubled one of my diuretics and I lost a few pounds.

By the last treatment, I was run into the ground. When treatments stopped, I crashed. I left work early for the first time ever on Wednesday and didn't go in at all on Thursday and Friday. Rob went into work late on Wednesday because I was doing so poorly. Our sitter watched the kids Wednesday, Thursday, and Friday afternoons, even though I was home Thursday and Friday. Megan stayed home from school on Friday and watched Eva and Laura so I could sleep as late as possible. She hasn't missed school almost at all this year and it was a day off for her too, so it worked out well. I barely left my bed from when I got home on Wednesday evening until Saturday afternoon.

I'm slowly getting better. We're hoping the benefits of the treatment (which can take up to six months to become apparent) will be worth everything we're going through. Either way, we had to try. It was really disappointing that I didn't see the dramatic improvements I saw in week three continue through the treatment.

More than anything else, this has made both Rob and I realize that this is a long term issue. I think we were both just hoping for quick resolution, either due to medication or treatment. We figured since they caught it so early, it would be easily fixed. We are coming to terms with the idea that this may never resolve, or it might take years to heal. That has been really hard for both of us.

We're making more permanent changes. I'm taking even more sodium out of my diet. I'd rather be on almost any diet other than a low sodium diet. Food without salt tastes like crap. On the plus side, it makes it easy to consume less calories! I eat less than 2000 calories a day, often significantly less, but I'm gaining weight. It's a side effect of cardiomyopathy. Yay. According to diet calculators, I should be eating 4500+ calories a day to maintain my current weight. Apparently those calculators are not made for those with heart failure.

We're so grateful to have someone like Kala to do the things I used to do with our kids as I can't do them anymore. She takes them on walks and to playgrounds. She makes playdoh and bubbles with them. She lets them help her cook and makes cookies and "dirt" out of chocolate pudding and oreos and gummi worms. I'm so glad the kids get to experience things like that. I used to do things like that, but can't now.

We've adjusted our schedule so Rob takes the elementary kids to school, which lets me sleep an extra two hours a day. Rob and the kids do all the housework. I cook meals whenever possible, although Rob now is in charge of meals about half the time. I can still do things like balancing the check book and paying bills as that can be done from bed. I'm able to go grocery shopping about half the time, although I go with Rob now in case I start to feel bad while we're out.

I've permanently stepped back my hours at work. I work Wednesdays and Thursdays, half days on Fridays, and Monday evenings. I'm so grateful I work in private practice where my schedule is flexible and that I have a boss who not only supports me when I need to take time off, but encourages it. I'm so grateful that so many of my clients are ones that both James and I see and that James is more than happy to fill in for me if needed. I don't think any other type of job would have worked. I love working though and it gives me a chance to think about something other than myself. At home, I'm surrounded by things I can't do that I want to do. Not that I don't want to spend time with my children and Rob, but it's nice to have somewhere that I can go that gets me out of the house and where I can actually do something. I've withdrawn from the TCAP planning board. I've skipped PDI nights for the last two months and won't make it this month either. This is our life now.

There have been some amazing benefits though. The kids are much more self-sufficient. I can't micromanage everything anymore, which was something I did. They've had the opportunity to grow their own wings much more so than they would have if I hadn't gotten sick. Rob and I get to spend a lot more time together now. He likes taking things easy and I preferred being more active, so my current physical capabilities allow us to hang out and relax.

I'm glad our roles aren't reversed. I'm afraid I wouldn't handle Rob being in this position nearly as well as Rob has handled it. He continues to amaze me with how supportive he is. Not only does he never complain about me not being able to do almost anything I used to do, but he doesn't even seem to think complaints about it. He has an unending supply of patience for me and is always there when I am having a hard time. I've loved growing closer to him and spending more time cuddled up against him, watching shows or talking.

We are so lucky he has the job he does. Our insurance is amazing and hearing the stories other cardio patients tell about the bills that have piled up makes us incredibly grateful for that aspect of his job. His boss has been amazingly supportive and lets him take whatever time off he needs. He works really hard not to abuse it, but it makes it so much easier. 

This sucks, but I don't think we could have been in a better position if it had to happen. We're still hoping that I will get better at some point, but that doesn't seem to be in the cards as of right now, so we're playing the hand we've been dealt to the best of our abilities :)

Over a Month

I haven't posted since New Year's Eve. I haven't gone that long without posting since I started the blog. I know I need to update pictures and stuff. It will happen at some point.

Right now everything is on hold for a bit. I started a new treatment called EECP (Enhanced External Counterpulsation) on January 31st. Each treatment is an hour and treatments are 5 days a week for 7 weeks. I lie on a special table. I am wrapped in pressure cuffs from my ankles to my waist and hooked up to heart monitors. The pressure cuffs inflate in ascending order between each heart beat, forcing the blood back into my heart and lungs, then deflate right before the next heartbeat so there is significantly less pressure as the heart beats. It allows my heart to rest, increases the amount of oxygen getting to my body, and encourages the growth of new veins in my heart. It was originally created as a non-surgical alternative to bypass surgery, but they are starting to use it for other heart conditions. It has a really good response rate, with at least 80% of patients showing signs of improvement.

I've done six treatments so far. I feel like Wesley (from Princess Bride) after he's hooked up to the Count's machine - "we've just sucked one year of your life away. How do you feel?". According to the doctors who run the program, that's normal and I'm actually responding well to it so far. Considering my ejection fraction and age, they predict that I should start feeling better at about the twelfth treatment. I'm halfway there.

I really hope they are right. Right now it's killing me. Wednesday I spent half of the day lying on the floor of my office (during times when I didn't have clients), trying not to throw up. The nausea has gone for now. I was so exhausted when I got home on Friday that I was shaking. I've never gotten to that point before. Rob and I ran out to the grocery store and to grab a few things today. I had to have us stop and come home. It made me so tired that I had to spend the rest of the day in bed. I lay there and tears started running down my face - not for emotional reasons, just from sheer exhaustion. Rob is making me stay home from church tomorrow and sleep. 

This experience has been one of the hardest things we have ever gone through. It has definitely changed our lives. We've lost friends because of it. There are people who I think are so afraid of death that they don't want to come anywhere near us. There are people who got offended because we don't have the time or energy to do things they think we should be doing. There are people who think we're dealing with this the wrong way and judge us for the choices we've made (such as continuing to stay in school and having to miss a lot of church because of changes to my medication or me having a bad health day).

We've missed out on a lot of things. For the first time in years and years, we didn't take a family picture for the 4th of July. Kids' birthdays have been really, really low key. Holidays have been minimal. We've missed out on activities. We've missed church more times than we attended church over the past 10 months. Pretty much everything not essential has disappeared.

There's so much good that has come out of this though. Rob and I are much closer. The possibility of having my life end so much sooner than we expected made us appreciate the time we have. I spend less time with the kids, but the time I spend with them is higher quality. Rob has gotten much closer to the kids. The kids have had the chance to step up and learn to do more on their own since I can't micromanage their chores and activities. I think that will end up being a huge benefit to them. We have had the chance to look at our lives and figure out who and what is really important.

It's really hard for me to accept help. Asking for it is even harder. I think that is part of the reason God allowed me to go through this. I am learning to ask people who love me for help and accept it when they offer. It amazes me to see how much my friends care about me and about our family. When I started treatment, I had to set up child care for every weekday. It was one of the biggest hurdles in getting started. When my friends found out what I needed, they jumped in. Jojo comes over every Monday. The girls love her and she loves spending time with them. Betsy takes them on Tuesdays. She does things like take them out for donuts. Betsy also set up rides for Megan every day since her school starts much later than elementary school. Kala watches the kids all day Wednesdays, Thursdays, and Fridays. The kids love having her here and get excited when it's Wednesday and they get to see her again after having not seen her for four days. All three of these ladies told me they were more than happy to help. All of them love the kids. It means so much to me that my precious children are being loved and cared for when I can't do it. I come home and they are happy. They are cuddled and pampered and loved.

To me, one of the best parts of this has been growing closer to my friends. Having Jojo tell me to stop worrying about having her watch the kids because she WANTS to help. Having Betsy text me and tell me she can't wait for next Tuesday to see the girls again. Having Kala text me through the day with updates on whether or not the kids napped and what they ate for lunch. Having James sit on the floor next to me at the office as we're discussing something so I don't have to get up to see the chart we're talking about. Having Mark tell me to do whatever I need to do and take whatever time I need to take off. Having the kids tell me it's ok, they understand if they don't see me much for the next seven weeks and that they would rather not see me for seven weeks if it meant I had a chance of getting better. Having Rob rub my back and my legs because they are sore and holding me when I need to cry.

Beth was baptized a week ago. I have pictures from it that I will post at some point. As I was sitting there at her baptism, I was so grateful. The last couple of years have been really, really hard for me for reasons other than health issues. Unfortunately my relationship with most of my family members has dissolved for various reasons. I've hated things like holidays because they seemed to emphasize the lack of those relationships in my life. Sitting there at Beth's baptism, I realized I had a family that loved me. Sometimes family is created by something other than blood.

I would go through this all over again knowing what I would get out of it. Not that I don't want to it be over, but I am so grateful for how it has changed my life. Thank you so much to all of you who have supported us. Thank you for your thoughts and prayers and good vibes and comments. I have amazing people in my life :)