Coleman update from his Mom

Is it 2009?

Posted 26 minutes ago

Updating from the Hospice House-

On New Year’s Eve Coleman woke before dawn with a lot of pain…he whimpered for hours in spite of the morphine I was able to get into his mouth through his clenched teeth. Scott and I were doing our best to keep him comfortable, but it was obvious we needed more than what we were able to do at home. Each time he would move just a little, he cried out in pain. It was a long few hours.

Our hospice nurse arrived and worked on getting some new meds for us that wouldn’t have to be oral…after much discussion, we decided to bring him to the hospice house where he was able to have his port accessed and they could give him the morphine through that- it made things so much easier. That drive was not a happy one, and we did our best to fight back a lot of tears on the way. Caden wondered WHY we were packing our bag AGAIN and WHERE we were going. We tried our best to explain- and stay positive about the whole thing for his sake.

The staff here couldn’t have made the transition any easier… THEY ARE WONDERFUL! They took Caden right away and got him set up with a snack and showed him the toy room. He told them, “This house is nice, your toy room is very organized.” And after coming from the mess of Christmas still all over our floors, I’m sure it DID seem really organized to him! He still cracks us up and is the BEST medicine for us all. He's made himself right at home.

When we got here Coleman was pretty out of it…and unresponsive most of that day. He’d open his eyes and stare up into the corner of the room as we held his hand. We were just relieved he was at least resting comfortably. Since then he has rallied again- he never ceases to amaze us…as he used to say, “I’m one tough tookie- wight mommy?” The kid really does have the “Neva-div-up” attitude!

He’s slowly begun to eat- at first soft foods, but moved up to cheese pizza (tiny bites) and watermelon, and is drinking like a fish. He’s only able to say a few words here and there, and a lot of times they don’t make sense, but sometimes they do. Talking is a struggle for him, but he pushes on. He even wanted to color a picture last night! We keep telling him how proud of him we are and how much we love him. We’ve had a lot of visitors, but a lot of time he pulls the blanket over his head…he says he doesn’t like everyone looking at him! :)

I swear each place we go the angels just keep coming! The staff here is beyond awesome! We can’t say enough about how much we appreciate each and every one of them. They came in and asked for a grocery list for the boys, cooked Coleman pizza, bought and cut up his watermelon, have played with and entertained Caden and wait on us hand and foot. It's a beautiful house. A couple of wonderful ladies even came to do hand moldings we started yesterday…one of me holding Coleman’s hand, one of Caden and Coleman, and Daddy and Coleman. They take a few days to get finished, but I’ll post pics when they are. We have a beautiful room, (actually rooms), and are all very comfortable.

Caden is able to come and go with family and friends we have close, so he gets out a little during the day, but wants to make sure he comes here to sleep with US at night. He didn’t want to go with anyone today, so decided he wasn’t going to get dressed this morning- he thought if he stayed in his pajama’s all day he wouldn’t be able to leave! Which was fine, because it’s been kind of an ice storm here today, so pretty slippery out there- I'm glad we’re safe and warm and not driving in this.

We continue to take one day at a time- THANKING GOD for ALL of our many, MANY blessings and always trusting in Him, as we enjoy our time together. Each moment is a gift. We don’t know what the future holds, but we know God is carrying us.

Again, the support showered on our family is overwhelming. Scott and I will never have enough words to say THANK YOU. Please know how much we appreciate your prayers and positive messages. I haven’t been on the computer much- most of my time is spent laying with Coleman, holding his hand, or playing with, snuggling and talking to Caden. He’s handling things the best he can…Scott and I are doing our best to answer his questions and remind him how much we love him.

So that’s about all from here. Oh before I go, Please know that we’ve gotten MANY suggestions of things to try- remedies, places to take Coleman, etc.…it’s overwhelming to sort through them all, but we do appreciate everyone caring enough to share them… a lot of them are things we HAVE done, some are new, but Please don’t be offended if we haven’t gotten back to you on the suggestions- it isn’t because we don’t appreciate them- it’s just a time factor right now.

Okay, I’m back to snuggling and praying…not just for Coleman, but for all the families riding this rollercoaster. Way too many kids- too many families. WE NEED A CURE.

Until I get back on,
Happy New Year and Blessings to you all,
Team Larson

She also has two videos on her carepage post