Thursday, April 4, 2013

Huge dose of reality.

So it's been a busy and emotional few days. I got a call from my neurologist on Tuesday saying that it's slightly possible I'm coming out of remission from my disorder. He's not sure why the symptoms are reappearing now after being dormant for so many years. He suspects its due to being pregnant, delivering Alexander, nursing for 8 months + and gaining weight. Our first plan of action is to attempt to lose weight. I have 2 months to try to get some weight off, if it doesn't work or if I start to get worse I have to start my treatment of IVIG again. If I do it will be a weekly thing for a few months then slowly tapering from there. My treatments take about 4 hours. I would need to take Alexander with me and there is a good chance after a few weeks of treatments my veins would blow again requiring another portacath. If I have to get another portacath that's a surgery. There is a few risks with portacath surgery including infection in the port itself (which is very bad.. and potentially deadly) and possibility of puncturing a lung. I have had 3 of them. One was not in the right place, the 2nd got infected and required emergency surgery (like within 48 hours of finding out it was infected.. if I had waited 4 days.. I probably wouldn't be here) and the 3rd got blocked. I do not want to go under the knife again. I do not want to risk the dr's puncturing my lung and leaving Alexander and Jon. I do not want another person raising my child and having him call someone else Mommy. I am his mommy. This is now very real for me.
I know the risks are rare however they are there. I am now a wife and a mother. I need to be around. Losing weight is now my number one priority.
So here is my weigh in for this Tuesday:
Its only 1 lb but I'll take it!
One of the hardest things is trying to walk in the cold with an infant. There is still really cold days! I found an indoor track that's free (YAY!!) to walk at. So we have been doing that. Alexander enjoys it.
Yup that's his jammies. We went with a friend to get her wedding dress fitted and just woke up before we had to be there so we went in our jammies since it takes about 10 minutes to get him changed since he's so squirmy now. It's quite funny us being there as the track is mostly walked by older ppl as it's a little out of town and not near many peoples work. The older (60-70 yrs young) pass us. Drop foot is not fun to try to walk with. So I pull to the inside lane, where I'm reminded 4 times in 100m's that I'm slow:
Yup that's a turtle.. But hey at least I'm out and doing it. That's what really counts right!
I also submitted my return to work date. It's official on May 6th I'll be returning to work. I have very mixed feelings about it. I will be leaving my son at 4:30 every day. I know I'll be leaving him with his dad and the adult conversation will be a refreshing break. But I won't get bed time snuggles. I won't get kisses good night. But I will get morning snuggles and cuddles and I will get to play all day with him. I will also get a new car! Not until the end of June but hey I'll still get a new car! I have to give up the van next Wednesday. It will be a sad day for sure.

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