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| Hopefully last trip to the ER!! Looking like the giant blue berry from Willa Wonka. |
So, I thought last time I posted about my sickness would have been the last "sick" post. Now it is August and we thought we would be farther out of the woods by now. Well, life has a funny way of changing things on you. I have been unable to stay out of the hospital for more than 2 or 3 weeks at a time it seems. My most recent visit was full of tests and more tests with no answers. I did get to spend the day with my dad though, which is always a good day.
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| Thanks for being the best nurse in the ER that day, Dad! |
We had good talks and some just daughter/dad time. He took good care of me. I sure have become more appreciative of my family this year and will never forget just how amazing they are. I wouldn't trade them for anything, they are all just too awesome. I am looking forward to my next 3 tattoos (lots of time to think these days) *A sister tattoo, a family tattoo, and an inspirational quote.* Lately, we have become all too familiar with the Bozeman ER and Progressive Care Unit. Oddly enough we were one of the last patients to be seen in the old ER and as much as we didn't want to see the new ER, we have been there twice due to continual brain swelling, I have to be very careful with any pain or headaches. Since the brain is still swelling regularly, the doctors must assume the infection is still present and able to cause problems in a hurry. This led me to a new PICC line being inserted in my other arm now and another 6 weeks of IV antibiotics. Just when we thought we were done with the IV we had to start completely over. This is only one of the factors that now limits me from going back to work this school year, I have been informed by my Neurosurgeon and Infectious Disease doctors that I must keep my life very low key. No stress, no work, and I must focus on recovery and keeping my immune system up because of where the original brain abscesses were located. They are located very close to the ventricles in my brain that connect with your spinal cord which produces all your spinal fluid and blood. If the infection spreads to the CFS it could move into my blood and that can go bad very quickly. It is dangerous. So, now I find myself in another scary place and more trips to the ER and hospital along with frequent CT scans, MRI tests, chest xrays and ultra sounds on my arms, legs, liver, and kidneys. In addition to doctor follow visits for constant monitoring and weekly blood draws and 7 times a day IV antibiotics. There just doesn’t seem to be an end in sight at this point. My mom always told me I was a challenge, well I seem to have stumped the doctors lately!! I have a new Neurosurgeon being brought on to help out on my prognosis and also a brain specialist coming on board to figure out what to do to “fix me”. We still do not have an idea of the grand total for this ordeal or an end date for recovery in sight, because every day is still a battle to make it through but we are trying to learn something everyday.
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| scary ventricles..... |
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| Science, the kids learned over the summer |
Usually, I am unemployed every summer and only work part time during the school year and now am unable to work at all at least for this coming school. I put in for a year leave of absence from my job and don't know what to do with my time now that the kids are back in school. It is very strange not being in training right now or setting up my classroom or seeing my fun coworkers. I will miss the work jokes and fun kid stories. Guess the bright side is, I will not have to do much paperwork or checklists thisyear..HA HA!
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| 2012 first day of school, they all rode the bus, no one wanted to be dropped off. First time ever. Sorta sad, but proud of my independent kiddos!! |
On a side note, they were so excited to go to school today! S is in her final year at middle school, R started second grade and C is my little cutie first grader. W and w are our big high school kiddos (sophomore and junior, oh my). D has decided to work full time and chill out before making a college decision. I am glad is taking some time to just live a little..it has been a rough year and a little too much reality for everyone to deal with. This whole brain infection and continual set backs (small or large) have been a scary and unexpected ordeal in our life. I can never explain to someone how scary it is to not know what the next day may bring. I am trying to tie up all the loose ends in my life but stay positive too. It is a hard way to live and raise my family. Living with this darn brain infection that affects everyday life is a lot for myself and for my family and extended family and friends. I don't even remember the last time I just "hung out" with my Donna. I still am currently unable to drive and need a person to be with me on a fairly constant basis to help with daily activities, medicine management, just getting around the house, and also monitoring my neurological progress. I get disoriented and confused frequently and miss my normal life. There are numerous side effects to the medications I am on and it is unclear at this point what long term physical and mental side effects will be permanent. Just when Nicole updated my "dosing" chart, my doctor called tonight to change it, sorry Nic. What is a little more paperwork..LOL. Thanks Nicole for making me do my homework, I wouldn't have gotten it done without you.
Dave and I still must make frequent trips to Billings Clinic for follow up visits because Bozeman Deaconess does not have the ability to care for my condition. This is an additional expense every month along with the growing list of medications I have to be on, (I have to stay on anti seizure medication for an undetermined amount of time since I had 2 severe seizures during this ordeal) but I must say though, we have found a way to pass time in Billings, The Burger Dive!! Great burgers!! We also spent an afternoon with the kids and my cutie pie nephew at Chucky Cheese, the kids had blast running around playing games and being noisy and the adults (well not my sober butt) got to drink a beer with lunch.
As a family we are looking forward to our extended family retreat at Fairmont Hot Springs. The kids are excited to sleep in a hotel for the first time all summer, (homebound is getting old). Swimming, cupcake decorating, and some individual and family goal setting activities. Time to recoup and regroup. We had a great time celebrating the new addition to the family, the beautiful new Kimberly Curry. The wedding was like a storybook celebration of sheer love. BEAUTIFUL!! The wedding was fantastic and now the newly married couple is chillin in our backyard in their "semi private" RV...it is great to spend sometime with them before they head down under to do some student teaching. The kids had a great time at the wedding, C danced her little heart out. We got some good fun family photos too!
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| C dancing with her new Aunt Kimberly! |
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| Sisters all dressed up. |
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| My nephews chillin with the big kids. Not sure why D had skunk scent stuff in his pocket....Poor Courtney stuck between the boys.. |
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The SCRWD family trying to act normal...
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| C Turning 6! |
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| R Turning 7! |
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| S Turning 13! Cute cupcake shoes, thanks to Aunt Angie!! |
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| C just had to take a picture of Mommy with Minnie.... |
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| Happy Birthday! The secret ingredient was Carmel...thanks Nicole. |
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| Pretty Pink Punk hair for mom for a day or two. |
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| Well, we celebrate D, W, and w birthdays here and only Dave was up for the hotwings challenge. WINNER!!! Good times for all, free wings for the boys and a sweat band for Dave. The T-shirts were better. |
Well, that pretty much is a quick check into where we are now and where we are headed. Pretty much still in the dark and unknown, but getting through. We are very appreciative to everyone who has been praying for us and keeping us in their thoughts and for helping out in the numerous ways they can. We live in an amazing community and have wonderful support! SO, let's hope this is the last post that starts out with...another trip to the ER!
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| S trip to the beach....lucky girl. |
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| All of the kiddos... |
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Keep smiling world...
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