Monday thru Thursday December 3rd - 6th

Hello Everyone,

Last chance to get an Otto Strong T-shirt if you haven't already. Here is the link: www.rsvpinvitations.net/shop. Order by Sunday.

It has been a long difficult week. Otto's nights are still restless with bathroom trips, occasional coughing, nose bleeds, and nausea. We've peeled back some meds to help relieve some of these side effects making him more comfortable and we've increased his pain medication to alleviate his pain.

His baby tooth bleeding has finally gotten under control after several days trying various techniques from some starch/potato powder, gauze with pressure, amicar(spelling), "magic mouthwash", gel gauze, to some surgical glue - sorry,  that was not too specific with the medical names, but rest assured it was a lot of attempts and failures, but finally not bleeding! Throughout it all we were down as low as a count of 2 for red blood cells and 8 for platelets. Otto received several bags for support. 

Monday thru Tuesday:

Otto was able to leave the hospital for a day trip Monday, really about 3-4 hours. It was great!  We went to the West Haven skate park to rip it up with his RC car. He did some amazing jumps and flips, and landed the car rather well several times until one landing was a little off, breaking some suspension linkages. It wouldn't be fun unless we broke something. Dad is now in parts buying and fixing mode. It was nice to get out to see the beach, play a bit, get some fresh air, and drive around. We also passed a place in West Haven named after him, Otto's Garage.

 

Otto's Grandy and Papa from Rochester showed up Monday night along with Jeremy and Harley and Jeremy's mother Faye. We all visited and talk with Otto and hung out in his room. Otto was super happy to see his cousin Harley and get great big hugs from everyone. 

Wednesday:

Our Rochester family left after a morning visit. It was sad and we missed them the minute they left.  Later in the evening we enjoyed visits from the Samson and Lowells. Earlier in the day we talked about great games with our nurse Michaela. One game mentioned was whats that Meme, something Michaela mentioned. Later that evening the Lowells brought that exact same game. It is a fun little game that will have you smiling and laughing. 

Thursday:

Today, Otto went to radiation earlier in the morning. It was his last day of radiation on his broviac area. We have a few more days of radiation on his mouth lesion. Today we stopped giving Otto one more of his anti-fungal meds which has side effects such as increased urination and thirst. Hopefully this will allow Otto more restful nights. 

Otto was tired (when isn't he tired lately) Thursday and didn't want too many visitors. Uncle Karl came by for a couple hours which Otto was happy to see him. Team Velky (Jimmy, Joe, JD and Joe Jr.) stopped by in the early evening and brought some amazing spirit that roused Otto from his napping and moved him to chase after the Velky's down the hall to walk them to the elevator. His nurse Ryan also wins some awesome brownie points for bringing in french fries from McDonald's and Wendy's to have a taste test comparison. Which do you think Otto liked?

We are very lucky to have such an awesome community, family, friends and nurse/doctors to walk with us. Are you familiar with the poem Footsteps where the narrator asked God why he left his side in a time of struggle. God commented that it was not the narrators footsteps, but His footsteps carrying him. In our case, the footsteps through the sand are many rather than one. So many, there isn't a single area of untouched sand.

Sending you all love and gratitude,

Mark, Leigh, Otto, Tess, Lulu