Day of Rest

Yesterday was Oakley's last day of chemotherapy! He has done far better than Trevor and I expected and prepared ourselves for. He had very little pain, and wasn't too nauseated either. He only vomited a few times, which is less than on a regular basis! We are still headed into the waiting period where his body has to accept the transplant, and the transplant has to accept his body as it's host, so there is still a lot to come. He hasn't lost his hair yet, he hasn't gotten the horrid skin rashes and diaper rash that is apparently inevitable.



try to ignore the lipskin and focus on his teeth



This morning, he did have some mucusitis starting up; which means his system is going to be shedding it's lining. He sounds awful, and has so much phlegm that they ran cultures again, just to ensure this isn't an infection. I'm kind of sick of them doing those every couple of days...this time he doesn't even have a fever...why would you figure it would be an infection, and not the expected side effect of his conditioning?



CPAP; looks like a rhino huh?



As Miranda pointed out, I must have forgotten to update the blog that Oakley has been teething. His second tooth broke the skin on his 6 month birthday, so he's had two teeth for almost ten days and I haven't loaded pictures yet! So sorry! He really is growing up right before our eyes, and I just wish he'd slow down! I'm not ready for him to grow out of his baby stage, but he's trying to sit up, he's rolling to his sides to get better views, and he understands some of what we say. (He kicks on command and is trying his hardest to give high fives now. He also kind of smacks his lips when we kiss him.)

He's pretty dextrous now too. He's pulled his NG tube (the tube that goes down his nostril to his tummy-he got it so we can give him his meds without fighting him) a few times, he actually puked it out once. His nasal cannula has been through the ringer, because he can get that thing off with his hands mittened! Oakley's an expert hair and beard puller too.

or maybe a snork?

Tomorrow is transplant day, but since the marrow is coming from Europe it'll be here pretty late in the day, and then it has to go through testing in the bloodbank before we actually get it here in the hospital. It will probably be given in the wee hours of Tuesday morning. Everyone here says that bone marrow transplant days are second birthdays, so Oakley can't hear of this, it's too close to Christmas time for us to give him this second birthday!

We are still in the PICU, and noone has really talked about any desire to get him out of here and back on to the SCCA floor, so I don't know if Oakley will get to don all of his Halloween costumes and outfits. He's allowed to wear two for now, because they button all the way down the front.

The other bummer about the PICU is that only one parent is allowed to spend the night, so Trevor and I have been drawing straws as to who gets to sleep on the sleep number bed across the street, and who stays here and is here for rounds in the morning and guards Oakley from being intubated for practice. 

Well, we'll keep you updated as the process drags on, thanks for keeping us in your prayers!

Love,

Sam, Trevor, and Oakley

P.S - Trevor here, we are super excited to have our lil dude go through this next part and if his tenacity and ability to be a rotten lil fighter is any testimony of how he'll handle the next few rounds of what is coming, I think he'll do just fine. Things haven't gone as we had thought the last few days or even weeks, but then again, none of the last six and a half months has been to the T. We can't wait to take him outside, put him in his stroller, and promptly drop him in a mudpuddle. He deserves it. Believe me. We miss Idaho and cannot wait until we can be back with you all!

Also, please remember to vote. 

Love, Trevor. 

and Sam. 

Oakley's asleep right now. 

Just now, enjoying his day of rest