Wednesday, February 8, 2012

Time Keeps on Slipping...

I don't know why, but I've had Steve Miller Band songs in my head the past couple of days. I feel like things are just slipping through the cracks all over the place. I start to get something done, then POOF! all my energy is gone and the kids have taken over the house. Last week I did great with exercising. On the flip side, I've thrown my neck and back out and can't get to my chiropractor until next week. To top things off, our basement was painted and wood was stained last week so I've had migraines for almost a week straight(I'm really effected by fumes). The only thing that helps is drinking Coke. It also means I've been eating like crap because I felt like crap and didn't care.

Overall I think it's that things feel like they're spinning out of control and I'm a control freak, so I don't like it. I can't wait to meet with Paul next Monday. Hopefully he'll help me figure out what's really going on. There is so much I want to be doing, it just feels like I have ADD every time I try to do anything.

At the same time, I'm getting really excited for this year. I bought a ticket to join Adam in San Francisco next month for four days...WITHOUT CHILDREN!!!! This will be my first time going, and I can't wait. Also, I've got three or four other trips in the works that should be a ton of fun. And, our housebound status is over in three short months!!!!!!!!!! Molly is doing well overall, and has shown us she is stronger than we thought. As of today she's taking zantac and benedryl again, courtesy of a cold. And we've discovered she can't really handle dairy milk either, so almond milk it is for our family from now on. Other than that, she's handled everything else she's tried.

Maybe that's my problem...I just keep dreaming of what will be instead of what is at the moment. Guess I should work on that.

Wednesday, January 25, 2012

Why Scales Don't Matter

Lately I've totally fallen of the wagon with sugar. It's been bad. I know at the root of it there's something that's bothering me, but I can't figure out what that is and it's driving me crazy! If I were to go off the scale, I still weigh less than I did at the end of the competition. If the numbers really mattered to me, I would feel content knowing I've loss additional weight since then. BUT.....based on how my clothes are fitting I'm heading in the wrong direction. My belly just doesn't want to stay in place anymore I guess.

I despise feeling tired all the time. It's no fun to only want crap food all the time while trying to teach my kids to make better choices. It's got to end. This week I've brought back the gum to see if I can't curb the sugar eating. And I've managed to work out two days in a row already, a big improvement over the last month or so.

Motivation is still not where I want it to be either, but it's getting better. I'm trying to focus on cleaning all my 'hot spots' this week because they're getting out of control messy. Hopefully I'm slowly but surely getting my groove back. Everyone is healthy, and it looks like all my surprise vacations are falling into place (at least for now). Here's to a better today!

Tuesday, January 17, 2012

No motivation

It's just not there. Every night I go to bed thinking about how amazingly productive I'm going to be the next day, and it always starts with a great workout. Unfortunately, dreams do not equal reality. I've been eating way too much crap, which just makes me tired all the time. I think I need to start my gum addiction again. Because at the root of the crap eating is just a desire for my jaw to feel like it's working. Can you get cabin fever with no snow on the ground? I think Big Baby and I are way past the stir crazy phase. She now cries every time we turn onto the big road leading back to our house.

One thing that's helping and making things worse at the same time is Molly's health the past few weeks. We had several doctor visits and some x-rays, and A LOT of vomiting, BUT she didn't have to go to the hospital and she didn't end up with rsv!!!! She is definitely still our miracle baby because everything pointed to rsv. Now that we've made it through the super scary first respiratory infection I feel much better about her immune system. Unfortunately, it also makes me want to just end the lockdown and start leaving the house. In talking to the pediatrician, he's really opposed to that idea still. Boo.

In spite of my crappy eating habits and not enough exercise, I am finding motivation to plan lots of trips for the year. I'm currently working on one family surprise, one couple surprise, one grandparent surprise, and two family trips for the year. Oh, and I just found out I get to go to San Francisco with Adam for a week in March!!! As long as I can get the five kiddos taken care of that is. I can't wait to explore while Adam goes to his conference. It will be our second trip alone since kids came into the picture.

Ok, I think I'm going to go running before Molly wakes up from her nap. Hopefully that will kick start my motivation for the day...week...month...year....you get the idea.

Thursday, January 5, 2012

Happy New Year...or not

Wow. How has it only been a week and a half since Christmas? My euphoric high left as my oldest got sick Christmas night. Based on how she described things to me, I thought it was a sinus infection. So the next morning I took her to the doctor only to find out she had strep. When I asked about bringing Molly in to get tested (this wasn't our regular pediatrician's office), I was told not to bother because she can't get it until she's closer to 3.

The next morning I took Molly in to get her lungs looked at and to talk to the doctor about the aspirating episodes that had been going on most of the month. When I mentioned Paige, he changed the plan of chest x-rays (to check for pneumonia) and adding a new medication, to testing for strep. When it came back positive, he told me strep was most likely causing all the aspirating episodes and the antibiotics for strep would also treat pneumonia if she developed it from too much aspirating. That meant Molly had been sick for three weeks with no other symptom.

That lead us to take in the rest of the kids just to see who all was sick. Little Man, yup. Fluff n stuffer, yup. Big Baby, no??? We took her in twice because we were convinced she had to be sick, but she is immune to it or something apparently. So four of the five kids had strep, but only one had any kind of symptom. This tells us that we are a family of carriers. Lovely.

I was really nervous about Molly going on antibiotics. There was a big possibility it would wipe out all the progress we've made with her intestines. Fortunately, she didn't react too badly. Yeast started taking over, but hopefully we got it under control without having to go on an antifungal again. Then the real fun started.

Big Baby apparently picked up a little germy friend at the doctor's office, a stomach bug. It went through her, then me, then it hit Molly and Adam. Let's just say a sensitive gag reflex is NOT a benefit when you have the stomach flu. Luckily it was only a 24 hour bug and everyone seems to be over it now.

Which brings us to round 3. After a few days on the antibiotic, Molly's aspirating episodes changed into more of severe choking episodes. Which lead to vomiting mucus. I called the doctor's office again where I was told it's fairly common with kids who have compromised lungs (or gag reflex issues or reflux problems) to not handle mucus. For some reason, she can't really swallow it, so instead she just chokes on it and sends everything back up.

So now we've added zantac and benedryl to her daily routine to try and stop the mucus production. Combined with her other medication and the antibiotic, that puts her at medicine 7 times every day. So naturally she chooses this week to start fighting us on taking it (naughty baby). It does seem to be working though, as she's only had a handful of episodes today and actually slept this morning.

Needless to say, Adam and I are stressed out. He feels like total crap and is starting to sound just like Molly when he coughs. I am afraid to sleep because I'm scared I won't hear her choking to lift her head up in time. And once she does vomit, she's awake for at least a couple of hours. Very not fun at all. I guess we used up our quota of good health over the past year.

One thing I have realized is that my patience for sick kids has really grown. As I rocked with Molly in the middle of the night this past week I haven't felt the normal resentment of losing out on my sleep. All I've felt is gratitude that I have her here to have these moments. I think I'm finally starting to grasp the whole 'parent's love' thing. It truly is a privilege to be the source of comfort when there's nothing else you can do to help. I love the snuggles she's willing to give.

And it's not only Molly. Big Baby is coming down with the same cold and has been pretty stinkin' onery this past week. But when I see her sweet face with the snot pouring down, I'm filled with the overwhelming urge to wrap her in a blanket and snuggle. Lucky for me, she likes that plan most of the time. The rest of the time, the screaming comes out. Instead of it bothering me and making me want to rip my hair out, I just start giggling at her indignation-usually directed at the dog for some reason.

While I'm thankful for the enlightening moments this past week, I'm REALLY hoping this is NOT an indication of what the year will be like.

Sunday, December 25, 2011

Christmas Is Here!

Before I go to bed tonight I wanted to jot down some of my feelings today. I don't think today could've gone much better if I tried. I tried to savor every moment and every feeling with each new activity. We kept things super simple this year and I'm so glad we did.

Last night I made my very first holiday dinner. We skipped out on the crazy chaos of Christmas Eve with cousins to stay home and have some quality family time with the kiddos. I made turkey, mashed potatoes, spinach salad, green beans, and Adam's favorite jello pretzel salad. The girls requested candles, so I decided to go all out and did the whole table cloth, china, goblets thing. Fortunately for me, everything turned out great. I was pretty proud of myself and the kids were SOOOO excited to use all the fancy stuff. They even turned off all the lights except the ones on the Christmas tree so it could be a true 'candle-lit' dinner.

This morning I was giddy. I started listening to the kids giggle and squeal about 6:30 and try to stay quiet until 7 am. When we finally let them see what Santa brought, their reactions were priceless. Big Baby bee-lined it to the baby stroller and doll, then spent the rest of the day taking 'dollie' on walks and crashing her into things. Reagan screamed when she saw her guitar, and Tyson and Paige were jumping up and down yelling as they looked through what Santa brought. Even Molly got super excited when she saw her walker.

After that, pure pandemonium took over. For the first time ever, we had all four grandparents here and it was perfect. Big baby is the perfect age for the wonder and excitement of Christmas, especially when you add in 3 very excitable older siblings. Molly was precious. All day I just wanted to stare at her. She loved opening presents, she loved eating the presents, and she loved all the craziness around her.

If I'm being honest, I cried off and on all day long. My heart was so full and content and happy and grateful that pretty much anything set me off. It made me realize just how overwhelmingly numb I was last year. I spent all morning crying because I wasn't with Molly, then spent the afternoon crying because I was away from my other kids. My Christmas dinner was spent alone in the hospital cafeteria thinking, "Man. This is just wrong on so many levels."

Not this year. No one had the stomach flu, we were all together, and my Christmas dinner was spent with close friends and family. Things were relax and comfortable and joyful again. Molly is doing so well and our kids truly love each other. We have grown so much closer this past year and really I feel like it's been Christmas all year long for us.

While I am getting worried about Molly again and will most likely spend the day at the doctor's office getting lungs checked and seeing if we need to do a swallow study, nothing could damper the spirit and feeling of this Christmas. I really think that 20 years from now our kids will be talking about this Christmas.

So Merry Christmas to anyone still reading this little blog of mine! I hope and pray each of us find health and happiness and peace to survive it all in the upcoming year.

Monday, December 19, 2011

Holidays

Today was the start of the winter holidays for both the kids and Adam. Two whole weeks of no school and no work! We had big plans for all the togetherness and Christmas-y things we would do together. Instead, I spent today running around like a chicken with my head cut off. Hopefully I got all the last minute stuff taken care of though. All that's left is mailing a few more cards and getting the presents for the NICU up to Primary Children's.

One really good thing that happened today was a session with Paul. The past few days I debated whether or not I should just cancel it because I've been feeling so good about things. This morning I realized that while I feel great overall, I've had several crying sessions lately. Last night also brought some things to light that have made me really think about relationships and how things are going with certain people.

We talked about how well Molly is doing and I let him know about the most amazing appointment ever with her GI on the 5th. We also talked about things I've become concerned with since then. She didn't do well when we took her off her reflux medication, so we will be seeing Dr. Pohl again because he has to do follow ups every six months for kids on reflux medication long term. Not a big deal, we'll just try again every six months until she's ok without it. Her reaction, or lack there of, to the blood draw is different. It made us realize that the nerve damage on the left side of her body is most likely permanent. Not insurmountable, but definitely something we will have to be on extra alert for to make sure she doesn't get unnecessarily injured.

I don't know why this revelation is hitting me so hard, but for some reason it is. I think putting a medical term to it is bothering me a lot. For some reason, saying she has brain damage doesn't bother me. When I put it in the context of a stroke or cerebral palsy, I have a meltdown. Nothing's changed but the word I use to describe it, but it seems to make a huge difference to me. So Paul told me to stop looking for a medical term and just celebrate the ways Molly has surprised us. I think I needed the proverbial 'slap in the face' to stop that train of thought.

Paul moved on to Christmas and how I am holding up. I told him I'm doing much better than I thought I would be, but I would be lying if I said the past week hasn't totally stressed me out. In the past, all I've wanted was to be with as much family as possible for Christmas Eve and Christmas day. I love the chaos, and screaming, and excitement that comes from all the kids together. But this year I'm craving quiet simplicity. All I want is to be at home with my family and my parents and celebrate the birth of the Lord completely together, without the distractions of everyone else.

Trying to get this across without totally offending some family members is the problem. I feel like I'm between a rock and a hard place. I know either way we will have a fabulous Christmas, I just want to feel like I'm in more control of it this year I guess. Paul recommended putting a fixed time limit on anything to do with someone else because our family is still healing from everything's that happened and shouldn't be forgotten. He even said I could blame everything on him if we decide to stay home. :)

I just wish it was that simple.

Tuesday, December 6, 2011

Memory Replacement

One year ago today (Dec. 6th), I got the phone call that no parent ever wants to get. The 'get to the hospital right now because your kid isn't doing well at all' call. When I arrived at the hospital I ended up pacing the floor for over an hour before they would let me back to see her because 'there are too many medical personnel working on her'. Once again, I knew what they were saying, but I didn't fully process it. It began a two day vigil to see what would happen. She had several crashes/codes/whatever you want to call it over a 20 hour period(the most likely source of the brain damage). At the time I forced myself to take a picture solely because I knew one day I would want one.

Fast forward one year.

Today was Molly's follow up with her GI. I was hoping to hear that she was doing well, and would only need follow up visits once a year and labs done once a year. Maybe get clearance to attempt dairy and think about switching her off of formula. What happened was even better than that.

He looked at her, examined everything, listened to everything, then we talked about how we handled her 'reactions' and what we were feeding her. Then he told me that she seems to be 100% adapted (about 2 years earlier than we thought she would), and from his perspective she is a completely normal kid now!!!! He was shocked at how good we've been with food, then he told me that there are no restrictions moving forward! That we should work on weaning her to whole milk, and no food was off limits (but still take the introduction to each thing nice and slow to see if she'll react first). I couldn't believe it! I asked about the prevacid and he said to take her off as of tonight and see how she does.

If it was possible to float on air, I think I would have. In my wildest dreams the appointment didn't go that well. As we walked past the hospital gift shop, I decided to get a little Christmas decoration to symbolize the awesomeness of the day. And then I cried on and off the whole way home.

We did the bloodwork to test levels of vitamins a, d, e, b12, iron, and her blood count. A while later, Dr. Pohl called me himself to tell me that everything came back totally normal!!!!! We can take her off the vitamin D supplement (meaning her bones are no longer overly brittle) too! I hung up and started to cry.

If someone would have said a year ago that today Molly would be doing so amazingly well, I would laughed in their face and told them to dream on. It would be impossible not to recognize the multiple miracles we have seen in Molly's short life already. The irony of the date was not lost on me. I've decided I could not have asked for a better memory replacement for the day.