I thought that after a year of this I would have it together! NOPE! I was wrong, I have learned so many things along the way, I have learned so many medical things, having hope, meet new moms facing the same thing I am. I thought we would return to a some what normal. NOPE! Our world continues to be shaken, dumped upside down, and just as we think we may have it together again, it is gets shaken and stirred again. Just when we think that things could start getting back to a new normal, things are changed once again. It is like I am stuck in a tornado, and no matter how hard I want out, I know I have to ride out the storm. We learned Carson has restless leg syndrome and will need more medication, yay for answers, but the medication has many side effects itself, and can suppress his breathing. This is worrisome for the fact he already doesn't have a "normal" airway. I am finding along this long road, that nothing will be normal ever again. Cancer has taken my sense of security for my children. I worked so hard to build a life that I was proud of. I worked to have a house, cars, and pay my bills on time. I made my house a home, filling it with lots of love and a place that we can always feel safe. Now even at times our home doesn't feel safe. I am always feeling like there is something, someone watching us, and there is, GERMS. The smallest germs can take us and shake it all upside down once again. So with the constant worry of germs and cleaning and trying to make sure our home is a safe place, it builds. I am not sure most family or friends know how much goes into each day of my day. The cleaning, the financials, the medications, the worrying, the taking his temp 5 times in a day and even more if he even looks like he is pale, red, or just off. Always wondering when we go to the doctors if they will say the dreaded "C" word has returned. It is reality for me. Day in day out, it feel like I am holding on to dear life with out ever knowing when it will be shaken, stirred, or turned upside down.
Update on Tuff Boy!
We went to Lagoon! What an awesome time we had! We loved every minute of it! The kids enjoyed it and so did I!
Playing like they were in jail! :)
We did hair cuts! Much needed hair cuts! Thanks to our Chemo Angel for the gift card!
The crappy medical stuff. We did a sleep study to know more about Carson's airway. I don't know that you can call it a sleep study, because we both did not do much sleeping. First off they hooked him up to all these electrode things and then told me he wasn't able to get up to go to the bathroom! Umm would have helped if they told me that before hand! Then when we turned off the lights the room was creepy. There were shadows everywhere. It took Carson forever to fall sleep. Then they woke us up at 5:30AM! WHAT We just went to sleep 5 hours ago. Insert #&#&#&^ and eye roll here!
We then headed on Wednesday for Chemo. Oh boy it was a rough day. He was not happy about going to the "long hospital" as he says. But was excited to see him Uncle Cole who was at the U of U for staph infection. We visited uncle Cole and he made sure to tell him to Cowboy Up! :)
This started our 5 day steroid pulse! Oh help us now! Those have to be the WORSE thing of chemo!
We had many melt downs, some over nothing, some over food, some over Blake looking at him.
We had a big rain storm, I was nervous to let them play in the water, but sometimes you have to live a little.
We have the results from his sleep study... not the best, but not bad at all! He will be on Oxygen at night to sleep, and will increase his nerve medication to almost triple. He kicks his legs all night long making it hard for him to enter the REM cycle of sleep. I am sure the results would have been different if they would have let us SLEEP instead of hooking him up to 50 wires and kicking us out at 5AM!
