Tuesday, January 22, 2013

SPF Required

The face that used to be ghost white is now red. Michael got his first sun burn this weekend as we went hiking at Chautauqua in Boulder. I haven't had him in the sun so much because one of his medications says not to. This certain medication makes him more susceptible to burning. Of course I'm the mom that didn't think twice because it was still too cold to get a burn right? Wrong! Michael beats all other odds so why not this one. Michael is also the most soggy baby you'll see right about now. He's getting a couple more teeth so the water works are on. I used to carry towels around for his excessive reflux and now I'm carrying things to mop up drool. I've never been big on bibs but recently I find myself thinking twice about how useful they may be.

Michael is hospital free now for 43 days. I think of how long it feels but when you count out the days it feels like only yesterday. Michael no longer sees either of his therapists. I miss them but am also thankful that he has no need of them. He's not delayed in any way. I spoke to his physical therapist this morning and she asked if I could call her when he starts walking. Not for a follow up but because she's become so close to him. His therapists definitely became friends that I will always be thankful for having.We recently took a trip to Englewood to get Michael his RSV Inoculation. He'll receive two shots, once a month through April. These shots are full of RSV antibodies. This means a drive to Englewood once a month. Believe me, I've done the research and there are NO closer offices that provide these shots (at least that my insurance covers).

The bathtub is one of Michaels favorite places to be (other than being held). With just a little bit of water in the bottom he crawls and splashes and climbs all over. He gets a bath a couple times a day at the least, or just after he eats. He's the messiest and, I know it's weird, he's also the angriest eater I've ever met. He yells while he eats, almost as if he's demanding the food to do what it's made for and get in his mouth! His favorites include crackers and Nilla wafers because he can use his teeth on them. He loves scraping his teeth against anything that gets in his mouth. He uses his teeth to rip away at the food as he growls and eats at the same time.

We just began trying to live a heart healthy lifestyle for the new year. We've began our weekend hikes as well as 20-30 minutes of cardio a day. If we want Michaels heart to be healthy then we need ours to be healthy as well. We're eating healthier and a lot better than we had been and just trying to stay more focused on what we're putting into our bodies. We're off to a great start and we're also feeling physically better. 

Coming up on Michaels 1st birthday we're also getting a good dose of reality checks. Financially we're still not making it. This has brought up a lot of conversations regarding Michaels condition and the possibility of leaving him in someone elses care for a few hours a day.As you can imagine, we're getting opinions thrown at us and even our own seem to be difficult to think about and our conversations seem to drop when they get to stressful to think about. Reality is, we need to find another source of income and it's not an easy thing to talk about. I don't like posting information like this because I don't like showing this side of our reality but I also don't feel like hiding our problems. I know that so many others are in similar situations and ours shouldn't be sugar coated. This is part of our daily story and even being 9 (almost 10) months down the road we're still running into road blocks. Life is full of lemons - The trick is finding use out of the ones that are bruised.

Friday, January 4, 2013


I am so happy to be sitting down and writing this right now. Michael just fell asleep and Zoey is distracted which means I get a few minutes to update and reminisce over the last couple of months. This time seems to be going by faster and faster and becoming a blur.

Michael is doing fantastic! We just celebrated his 1st Christmas and his 1st New Year. Of course I don't have the picture of Mike with Santa on my computer but I promise I will post it soon. Santa loved him and Mike found his beard fascinating. It was so wonderful to have him with us when we got to see both our families. He's so happy to welcome people into his life. Stranger Danger is going to be a tough lesson for him as he meets so many new people daily; through his doctors, nurses, and even people I haven't met that are more than willing to participate in our heart journey. It is so wonderful to see such a huge positive reaction started by such a small baby boy. Michael is now 9 months old. He's been home for 6 months. At 9 months he has 4 teeth, he's crawling, eating everything he sees (even if it's not edible) and he is even throwing great big tantrums when he doesn't get what he wants. This boy gets tougher every day and shows his spirit through and through. If you're grumpy - he's grumpy. If you're loud - he's loud. If you're quiet - he's still loud - haha. It's hard to appreciate it in the moment sometimes because he is so spirited but in these few moments of reflection I see a lot of me and Jaron in him. Also a lot of Zoey.

Michael follows Zoey Everywhere! He's her little groupie. She is his protector as well as his tormenter. If he has it, she wants it. If she has it, he wants it. Sharing is a tough thing to teach - Any advice is wonderful!

We've all had a tough 9 months. Our little family has felt trauma and emotion in a larger quantity than some feel in a life time. Zoeys 3rd Birthday was on December 10th and We wanted so badly to have her be #1 for just 1 whole day. She was definitely spoiled with gifts and love and she even had a princess birthday party. She was definitely a princess for a day. That evening Mike was sick and his color had been off for about a week. His color began to turn more purple moment by moment and again we made the trip to the ER at Childrens Aurora. During that drive I struggled with so many emotions. First off leaving Zoey on her birthday. Secondly, the thought that this could be it. This could be that moment that his heart gives out and needs his valve replacement surgery. That was the busiest I have ever seen a hospital. After we arrived Michaels color looked great and he was playing with us and having fun. But after waiting for an hour we finally said something and they didn't even have us set in the system. They got us in right away and ran every test they could think of and couldn't find what was causing this episode. They didn't see the discoloration as it had cleared up once we arrived.  His mood was good and he was eating great. They did a blood test, an Xray,  an EKG, And an Echo and found that everything was as good as it has been. As scary as it is not to have an answer, the fact that Michael was ok right then was everything I needed to hear. We got home the next morning at about 4:30am and I cannot describe the feeling I felt other than saying it was the worst hang over of my life. The rush so many emotions, good and bad, coming and going so quickly was more than our bodies could handle on no sleep. Another one of the hardest nights of my life.

For New Years I prayed for a less stressful year. For peace and calming. Seeing as the world didn't end this could actually be possible, Right? I got to spend New Years Eve at my moms and fell asleep well before midnight. I felt so old but wanted to sleep so bad! After breakfast we went home and we could not believe what had happened while we'd been gone. One of the neighbors up the street and struck Jarons car that was parked in front of our house. The back was smashed in and the driver side tail light was gone. There was no note, no message, and no one around. AGH! Our neighbor who is, thank heavens, a police officer was able to give me the non emergency number to call in to and him and his wife stayed with us to assess the damage. As we stood in front of the car, a girl came from up the street to admit what she had done (while driving her boyfriends car) and we were able to get her information and Thankfully!!!! he had insurance. This morning the car was declared totaled and next week they'll be towing it and we'll be looking for another car. It all happened so fast it doesn't seem real. I made sure I thanked her for coming forward. It had to be hard seeing us all surrounding the car so upset. But, she did it. Wow. People are still good. Even if it takes them a little longer to pull themselves to their feet and admit that they are capable of wonderful things. This year I challenge everyone to pay it forward. We've been given so much this last year that it makes me feel the need to give back in any way possible. Give to others even if it's a smile. You never know when someone needs to see a good spirit.

Happy New Years Everyone!