Brody's pain continues to increase but it has been managed pretty well

Brody has continued to have increasing levels of pain in his right leg and abdomen.  Fortunately, the hospice team is managing the increasing pain levels quickly and overall his pain is well-controlled. 

Brody has been sleeping for much of the day.  He seems to have developed a bit of an actual sleeping pattern though.  It's nice having somewhat of an idea of when he will be awake.  He seems to have settled into a schedule of falling asleep around 3pm in the afternoon and then sleeping until around 8 or 9am the next morning.  So he has a good stretch lately between 9am and 3pm that he tends to be awake.  When I say he's sleeping from 3pm til 9am the next morning, this is by no means straight sleep.  He is awakened every couple of hours or so for some sort of medication and/or bag needing emptied etc.  We try to not wake him whenever possible but usually he awakes.  He often has nausea and pain episodes that frequently wake him during his sleep too.  There really is not any significant stretches of time without some sort of Brody care needing attention.  Bill and I have worked out a caring for Brody/sleep schedule that assures Bill and I both get some sleep at some point and all of Brody's care needs are met too.  It's a very strict schedule which also includes time for home school for Jaden, taking care of household chores, and helping Geordi with homework.  It gets tricky handling special events and getting Geordi and Jaden from Point A to Point B for some of their activities but so far we are working it out. 

Geordi and Jaden will both soon be starting basketball.  Geordi was pretty upset with me last year that we didn't get him signed up in time.  This year, amazingly, I came through for him.  Practices start next week and Geordi is getting excited.  Jaden loves to play basketball in our driveway so I signed him up too.  He was surprised to find out he's starting basketball practice next week.  He seemed a little unsure of whether he wants to do so but I think he will find it fun. 

The boys all had a fun Halloween.  Geordi and Jaden went Trick or Treating with friends in a nearby subdivision.  It was cold and raining but it certainly did not stop them from having a good time.  Brody was too tired for Trick or Treating but he enjoyed hanging out with his brothers and friends afterward.

Today we all enjoyed a visit from our friends, the Musil family (Amy, Judd, Austin, Ashton, and Aiden).  Austin, Ashton, and Aiden are all roughly the same age as Geordi, Jaden, and Brody.  The boys have remained great friends despite the Musil family moving away to Lima, Ohio (to start up the very successful Lulu's Diner in Lima).  We don't get to see them very often since we don't live as close so it was an extra special day to get to spend some time with them.  It's so much fun to watch all the boys get together again.  Every time they pick up playing like no time has past since they have seen one another.  They almost never fight or argue with one another and just have a plain old wonderful time.   They will be friends forever and ever no matter what.  Amy and Judd are amazing friends too!

Brody is now looking forward to Thanksgiving.  We normally travel to my mom and dad's for Thanksgiving.  This year though we plan to stay home.  Traveling with Brody is more than difficult and worrisome.   Brody is wanting to "taste" some turkey and stuffing.  (He can't eat.  He just tastes things and spits it back out.  His gastrointestinal tract is not moving at all.  Actually swallowing would make him later vomit.).  It should be interesting figuring out how to prepare this meal.  Brody cannot tolerate the smell of food cooking.  Most smells make him very nauseous.  We cannot cook in our house.  I think I have a plan of how to actually get Thanksgiving meal prepared anyway though.  Brody is hoping it works out that his cousins, aunt, and uncle from TN can make it to our house for Thanksgiving and also my mom, dad, brother, and nana.  Keeping my fingers crossed it works out.  We're hoping to do a little family Christmas party that weekend too. 

Most years, Brody participates in a Christmas Horse Parade in Lebanon, Ohio the weekend after Thanksgiving.  My parents have miniature horses that pull decorated carts in the parade each year.  Brody normally always rides in the cart (as do his cousins and brothers).  He is already talking about the parade again and says he wants to ride in the front of the cart for the evening parade and the back of the cart for the day parade.  I am so hoping he gets to do this parade again.  We'll do what we can to make it happen if he still feels up to it when parade time arrives. 

We are all continuing to get through things one day and one moment at a time. I am trying to stay in the moment and not let my mind wonder to all of the what ifs so much.  It's easier said than done sometimes though.   It's still an emotional roller coaster.  I am fine one minute and not the next.  Brody's laughs and smiles pull me out of the sadness.  (Time with Geordi, Jaden, Bill, family and friends does too).  But, I must say, there is no laugh in the world like Brody's.  He has the best laugh ever and he loves to laugh!  

He got a pretty good laugh going at Bill's phone the other day.  Bill was speaking to is phone to set an alarm.  He said, " set alarm to get ready to start chili."   (He wanted to remember to turn on the crockpot for some chili he was getting prepared ahead of time).  Then his phone set/typed the alarm out as, "to get ready to start killing."  Brody was quite amused by this (as were the rest of us...lol!). 

 Be sure to take time for laughs with your loved ones and cherish each moment.  None of us are promised tomorrow.