Life as we know it......(9/13/16)

Alice was born with a Congenital Heart Defect called Atrial Ventricular Sepal Defect (AVSD) when she was about 2 months old she went in to Doernbecher Children's Hospital for her first Open Heart surgery. Her surgery went well but her heart didn’t start up correctly so she needed a pacemaker, that pacemaker was placed in April 2011 and worked perfectly until January 2016, 5 years! 5 years is all we got before one of the leads fractured and she passed out at school and we were taken by ambulance to Doernbecher which is where we informed that her pacemaker had fractured and she would need a new one. That day they took her back and changed her pacemaker, she healed amazing and we were sent home about 4 days later.
About 3 weeks later we were back at dornbecher for a 14 or 15 day stay because her pacemaker didn’t want to stay put. It actually was trying to break out of the skin so they did 10 days of antibiotics and then they re-did the placement of the pacer and 5 days to heal and then we were home to heal which was amazing.
Right after this happened my oldest had her tonsils and adenoids removed this is her very first surgery, 7 days after the surgery she ended up hemorrhaging and had to be taken back up to doernbecher where they tried to cauterized the hemorrhage but that didn’t work so they had to place 7 stitches in her throat, and she spent the night. This was my January-March!



This post was moved from my old blog to my new one so it's kind of back dated

The last few days.......

Alice's Recovery in the Picu @ Doernbecher Children's Hospital 1/22/16

This last year has been a year of reflection for myself. I think for a majority of my family as well. My 4 year old Alice experienced an episode of Syncope (passing out) while I was dropping her off at Pre-k. She was taken by ambulance to Doernbecher where they determined that the lead to her pacemaker had fractured (broken) and they needed to do surgery to place it. They needed to wait to place it because 1. She was going fine at the time and 2. They already had someone in the OR getting ready for surgery so they couldn't get in there and do it until later that night. I was ok with that because she was doing fine. They finally found us a room we could go to where we could relax in while we waited for surgery and just as they were wheeling her out of the ED room she says "Mommy, I don't feel so well" and she passed out. They wheeled her back into the room and called a code blue.........She had flat lined and became completely unresponsive they did 4 rounds of CPR and finally got a response that was the longest 15 minutes of my life. All I could do was stand there and cry. Finally when she was stabilized they decided to move her straight into surgery. The kid that they said we had to wait for they cancelled that surgery, I felt guilty because I'm sure those parents are scared out of their minds but, at the same time I was appreciative that my child was getting the fix that she needed.

This was a long day for us, This all started at right around 8am 1/21/17 when people were dropping off their kids off at school, and she came out of surgery at 7:30pm. Hours of waiting, wondering, hoping, praying, and feeling the love thoughts and prayers that our small little community was saying for us. In all my life I have never felt so much love and concern for my family, I knew that everyone was rooting for Alice to pull through and that those who asked were really just concerned for her well being. Alice was in the hospital for 5 days and then sent home, I can honestly say that this time around the hospital stay was a lot harder because she didn't want to stay still but she really couldn't move around either.

Does the beat go on?

     So, it's been almost a full year since I have been gainfully employed and I'm starting to feel guilty that I'm not bringing home the bacon any more. Don't get me wrong I love being home when my babies need me, which happens to be a lot here lately. But I wish I could find a job that I can do from home so that way when my babies are sick it's not an inconvenience to call in sick.
     Both my kids have like zero immune systems so they are always getting sick which sucks for me because I feel like I'm failing them at life, which I mean I'm not. I didn't cause them to get sick, I just happened to give them a mutated gene which allows them to get sick more often. For those of you wondering we vaccinate but it doesn't seem like it matters. We found out that my girls have an immune deficiency we just don't know which one and that sucks. When we know which one then we know how to treat it and what we can do to make them feel better. I am just not looking forward to treatment. It can be as simple as extra vaccines or as difficult as a bone marrow transplant. I'm hopping it's more of extra vaccines.
     Anyway my point is.....is there life after giving up your job because you have sick kids? Is there a way to build up your professional life again? I am looking for something that will accommodate my crazy life as a mom who desperately needs to feel like she's pulling her weight but can do it from home. Anyone have any ideas? Anyone? Buller, Buller?

For Christmas we gave my oldest daughter a retro looking Polaroid camera that prints out pictures and saves them on an SD card. It's really kinda cool because they print a copy on sticky paper and it also saves it which I think is awesome. Anyway my oldest took this pictures of my youngest and their daddy. This has got to be one of the best pictures that I have seen of these two.

Alice loves her daddy like no other and I am so thankful that they will have an incredible bond forever. I never had a great relationship with my dad and that always hurt. I am so thankful that they will always have that special relationship and that she will know what type of relationship to expect from a man.

Storm of the new Year

Welcome to 2017!  Lets give you the coldest weather you've had in 30 years.

Oy vey! I know I live in Oregon and yes it normally gets in the high 30's low 40's in the winter time but this is ridiculous. There is still snow and icy on the roads from where it snowed a week ago. It hasn't warmed up enough to actually melt the snow and help it go away.

It's so cold my fingers and toes hurt, my heater will not turn off because my house will not get above 65, which is a bummer. We are supposed to have a winter storm that hits tomorrow and I am honestly dreading it. On top of all this I'm terrified of losing power because it will be way to cold to not have heat. I also won't drive if the weather is bad because well people scare me with their driving. On top of all this I am dealing with having a sick 5 year old which sucks. This is the same sickness she's had since September and it sucks that she's not getting any better.

This "Cold" I've been told by her Dr could actually be an immune disorder, which ironically we are currently going through with my 12 year old. We know she has something we just don't know what yet.

They have 2 totally different Dr's so it was kind of a surprise that they are both going through the same thing. We've got appointments set up for my oldest to figure it out because her allergist just kinda dropped what was going on with her. So we are leaving the allergist and switching her primary care to my youngest daughters Dr which is great because they will have the same Dr and he wants to test my youngest for the same thing my oldest is getting tested for so this will simplify my life.

The new year

A new year a new you! How many times has that been said? I'm sure more than we want to admit. A new year comes along and we all want to make improvements to our lives, bodies, homes, finances and such. But after a few weeks we all give up and go back to what we were doing before. What were your new years resolutions? I made a few they are rather general because I want to try to keep them
1) Be kinder
2) Be a better me, mind, body and soul.
3) Better my financial situation
4) Add to our savings
5) Taking time for myself
6) Finally get the braces situation handled
All of these resolutions or goals are to help improve my life as a whole. Not being superficial accept for maybe the braces thing but that is for my health mainly. My teeth hurt because of how they sit so when they are fixed my mouth will stop hurting which is all I'm asking for. I've needed braces for 25+ years but never had the finances to do it. Now we do so I'm going to fix that before we don't any longer.

Let's Play Catch Up

Life is always busy.....I never feel like I'm ever going to catch on on anything and I'm home. So my mom was evicted from her home and her official move out date was 12-6-16. The people that owned the house were really nice about waiting to evict my mom until she found a place to go due to her health. But in November I got a phone call from the owner just screaming at me telling me we are nothing but users and abusers and that we've done nothing but shit on him and his family when all they did was be accomodating. I have no idea what that was all about but he kept telling me that he wanted us out by then. My brother lived there and was supposed to be getting the house packed and what not but that wasn't happening in a quick enough manner to apease him although we legally had until December 6th.