Day +30 (1 MONTH)

It's been one month since I got my stem cells back.  One month since my CIDP was stopped.  One month since we watched fireworks over the lake.  One month since I felt so sick and longed for my children and their sweet hugs.  

Being home is a lot of work.  My body aches everyday like I've done an extensive workout at the gym.  

We are all still getting used to this "new" normal.  What it means for mommy to need to wash hands all the time and stay away from lots of people.

This was my view for the past week and a half.  Thanks to Jesses Aunt & Uncle for sharing their condo with us, we were able to be together at the beach, the boys got to enjoy the sand and waves and I was able to sit, listen and heal.  Such an awesome way to end our transplant journey.  My brother Caleb and his family joined us for a week.  He is also the one who made my video.  At the end of our time at the beach he said, that was the exclamation point to our transplant adventure, a good way to end it.

Next week, I see my PCP and will be talking about physical therapy and massage as I heal.  My muscles ache so much each day.  My nerves are trying to heal and this is very painful at times.

So far, my blood work has all been great! All in all, my recovery is going well.  It's lots of work.  I can still remember what the constant CIDP electrical surges felt like.  The fact that I can feel some on my fingers and feet, amazes me!

I've had to explain this sensation a few times now.  This is what I've come up with, imagine that you're wearing 5 pairs of socks and gloves.  You go to pick up your cup, but can't feel it, you feel the pressure of it as you squeeze it, but you can't feel the cup.  Now imagine that someone just took the socks and gloves off!  You can now feel the sensation of the cup.  After not feeling things for 4 years, being able to feel anything is amazing!!!

My last IVIG treatment was 53 days ago!!!  I can't even tell you how awesome this is for me and my family.  If you haven't seen my video, go here and watch (http://youtu.be/mxTq3tz1yeY). IVIG saved me in one aspect but it destroyed me in another.

This is hard work but so worth it to be able to live again. :)

3 Weeks Old! (+21)

It's hard to believe that it's been 3 weeks since I got my stem cells back.

We are currently at the beach.  The air has never felt or smelled so good.  I may not get to enjoy the sun or the waves this year, but I am appreciating the time away with a new perspective.

Monday, I went for my weekly blood draw.  I'm masking up because I don't want to risk someone sneezing or coughing on me in there and getting me sick.

Our youngest son, he's a little over one, spiked a fever and daddy just wouldn't do.  So, I did what most Mommys would do, I put on a mask and held my baby...I also prayed I wouldn't get sick.  ;). I woke up looking like this...so tired.

We were exhausted from lack of sleep and dealing with the kids (who are still adjusting to us being home).  Thankfully, he slept better and so did we.

As for the kids, it's been a little over a week of us being a family again.  There have definitely been some trying moments.  The oldest has been experiencing some major stress due to everything.  I read this great article several months ago that helped us remember what we needed to do to help him process...we forgot, so we read it again last night.  

http://www.handinhandparenting.org/article/setting-limits-with-young-children/

The baby, has been dealing with separation anxiety.  Everyday he is getting better.  The cumulative 6 weeks away was hard on both of us.  I've had to prove to him everyday, that I'm not leaving for long periods of time...that I'm coming back at the end of the day. 

As for this week home, each day I feel little stronger.  Our first day back, when our boys came home, I pushed myself and did way too much.  Ended up getting sick from the stress of it all.  Lesson learned, I have to take it slow.

I am extremely grateful that I was able to get the transplant when I did.  My CIDP was "under control" with the IVIG I was receiving.  I had built back most of the muscle in my legs that I had lost from previous flares.  As the transplant was approaching, I could feel a flare coming on (probably due to the stress and all the traveling back and forth).  That meant that my body was telling me I needed the IVIG every 1-2 weeks instead of my usual 4.  This was not an option for me.  If you've followed my journey, you know that IVIG makes me extremely sick.  It takes me an entire week to recover.  So the transplant happened at the perfect time for me.

I lost almost all the muscle in my legs from being in bed at the hospital nearly the entire length of my stay.  Every day, I've tried to walk a little bit more than the day before.  

Last night, I walked on the beach!  I got to see my boys play in the water, I got to take photos of them like I used to, I got to cuddle with my baby on the beach.  And the best part?!  My legs hurt...in a good way!  Not in the "I can't take another step from the pain" way or the "my legs aren't going to work much longer" way.  They hurt in the I've used the muscles and they are sore kind of way...a feeling I haven't felt in a long, long time.  

We are enjoying the ocean, we are enjoying each other, we are uniting again into a new and improved family.