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Friday, September 28, 2012

Well isn't life GRAND

So I decided to go back to work. At the time it was not really about the money, yes we always need that, but in addition too, I just needed to get back to being around more adults, structure and just something that was mine. I decided to work at a school, an elementary school to be exact. I was hired on to be a Paraprofessional. I truly LOVED working with the kiddos. I never thought in a million years my entire heart would be into it. I knew that I would really enjoy it, but I truly  found my passion.

Well as life works, and seems to work for us, shortly after, Darin was laid off. Now we were left with no main income and no insurance. I had asked to see if I could have an increase in hours, but that would of meant that I would be eligible for benefits. Well they just did not have a position for me to do that.

Now with Darin home, it was nice and super convenient to have him home when the girls got home and he could meet them at the bus.

Let me back up a bit... our precious and wonderful provider had to leave us for personal reasons. We miss her sooo much... and she still comes to see Sarah. But we wish her the very best in everything and we are keeping in touch.

So with that said..... since there is no one else here in the afternoons.... it was becoming challenging for Darin. I found myself still needing to manage all of Sarah's care. It was becoming so overwhelming and I found myself just so caught in the middle of work, Sarah's issues and plus having to take care of new things with Hannah. I knew that Darin could not manage all of that like I had done for years, so with a super heavy heart, I had to resign. We would for sure be hurting for the money, and I miss the wonderful kiddos from the school sooo much, but my family really needed me and I think FINALLY Darin sees how much I do take care of.

So now, Darin is looking for work. Not sure if he can get back into the profession he was in and if he did, we are worried how steady it would be and if it paid the bills, plus the benefits too are so needed.

As for Sarah, I am getting concerned with her over all health. Since her shunt surgery... she has regressed in her feeding and just seems different.Some good and some things to worry about. I think its just a massive combination of things.... way to many big changes, and since things are stressful here, I know she can feel it.

Sarah was evaluated for an Aug Com devise, to help her communicate and hopefully we should have it before the end of the year. I am going to dive into learning all I can and help her all that I can too. I cant wait for this new one to open up her world... and our world to her.

Hannah is doing well. She is still the out going spunky girl. Now she is in the 4th grade... so different and so much more to do. We are finally getting her on a good schedule and at least at home she is getting better as each day goes by. Her grades are wonderful, math is kind of an issue right now, but we are getting there.

So that is whats going on at the Z house these days.

Have a great night!!!

Sunday, September 9, 2012

Yes... its been QUITE a while since my last post

For some reason this did not post.... its from a while ago.
I know its been SEVERAL months since my last post. So much had gone on that I had a mental shut down.
Our house FINALLY became a HOME. Well its always been a home, but now it looks sooo sooo beautiful.
It has taken and its still a work in progress getting moved back in. Majority of our things were boxed up in the garage and the living room. With it being summer and the girls out of school, Darin working and just feeling soo overwhelmed as it was, it was and still is taking literally forever to get things back together. Doing repairs, painting, touch ups and just getting all of our rooms back together along with redecorating made it for a long and crazy summer.
We were not even home a week and Sarah wound up in the hospital again. On the first Friday we were home, in the morning she starting fussing soon after I gave her the first morning feeds. I just thought she was getting board or tired or maybe it was gas. The fussing soon escalated into full blown screaming, crying, throwing herself down on the tile, hitting her head at the back arcadia door. She screamed so much, she threw up her feeding. I could not get her to calm down for anything. I was so scared. I had not seen her like that in such a long time. I just knew it was far more than gas. I yelled for Hannah to bring me the phone and called 911. Sarah was still screaming and I could not even hear the operator. Before I knew it, the paramedics were here and so was Shanon. Sarah was still sitting by the back door and still screaming while they were here trying to get information from me. Finally they started talking to Shanon.
All of a sudden she started slowly calming down and I was able to give them what they were needing from me. But Sarah still did not seem good. We talked about her going to the ER via ambulance, but I choose to drive her since she was calming down.
Once we got to the hospital, I immediately told them "My daughter is special needs, has seizures and has a shunt". The magic words, but honest words works every time. She got a room right away.
I still was feeling it was gas and she was backed up. They ran all kinds of tests, X-Ray, MRI, blood work.... they did it all. I felt so bad for her because she looked like a train hit her and had not eaten since the morning. They hooked her up to an IV too.
So we are waiting for the results, in the back of my mind, still thinking its just gas and she is constipated.
Finally the ER doctors came in and said "We are going to admit her." I was SHOCKED!!! They were not stating exactly why either. I just assumed it had to do with maybe seizures, or severe back up, which she has been admitted for before.
Once we got into the room, the phone in the room rang and it was Dr. Moss one of the neurosurgeons that works with her neurologist. At that point my head started spinning and my heart started racing. He was stating who he was, explaining all his experience, and on and on. All I could hear at the time was "Waaa waaa waaaa". and waiting for him to get to the point. (Not trying to be mean or rude when I say that at all. I was just in a state of shock and panic)
Then he said that her shunt was clogged and they need to do emergency surgery. They were waiting for a room. But things changed.
Later, we were told she will have surgery in the morning at 6am. They wanted to do more tests just to make sure they had all the information they needed.
So the next morning, at 4am she went  into have another xray and MRI. Then at 5am Darin and I met with Dr. Moss. He showed us all her previous MRI's X-Rays and was showing us the differences.
 There was a cyst with fluid build up that developed and the catheter that was suppose to help in draining fluid was practically clogged and causing the cyst to grow… causing pressure. The tubing that drains in her tummy, was practically clogged as well. Lord only knows if we had waited any longer what could of happened. I am just soo grateful that I followed my momma gut. I know in my heart that there is an angel looking after her and us. Soon after the surgery and she was back in her room, she had her color back. She was a healthy color of pink again. Before, she was so pale, ashy and almost looked jaundice. When she finally woke up and was alert, she quickly became the happy, ornery, beautiful sweet stinker we all know and love. Darin was right next to her when she woke up. About 30 minutes later, he got up to get some lunch, We soon noticed that she was very warm and started becoming cranky. Once again a fever spike of 101. So the nurse gave her some morphine and Tylenol and will stay on antibiotics for a while as well…. As it always seems to be with our coincidence QUEEN, she may of had an infection prior to the issues with her shunt or just some virus that flared up along the way. No one really knows. This fever and the throwing up lasted 4 more days. They did not want to release her until there was no fever spikes and she was keeping her feedings down. During the week of being in there, I got extremely sick. I had been up for 30 hours straight, slepted for 6, then back again for another 24 hours with no sleep. I took myself the the ER there, and was diagnosed with Bronchitis and had a fever. So I could not stay with her. I stayed at my moms for 2 days.... just slepted. Between Shanon and her Aunt Chris, she always had some one there. To get to the end of our story.... We came home on that Friday. Sarah slepted on the couch for 3 days with a feeding pump. By Monday, she was getting her strength back. Oh..... did I mention this happened on their BIRTHDAY???? We had a party set and everything. I feel soo bad that the girls did not get to have a party. We still have not had one for them. So much as gone on since then, but I wanted to post this just to catch up. I will post some more catching up in the next few weeks.