Category Archives: Uncategorized

Wow what a month it has been! We are enjoying this summer more than we could have thought. This is what life is (mostly) supposed to be like. We have been trying to be active with Cristian to make up for the time lost last year, two if you include Covid. We’ve been having playContinue reading “Day 500: 6 Months Of Maintenance Done!”

Well not sure how else to say it, but we are enjoying spring time and feeling great! Don’t think we had a blog start off like this yet and that’s probably because Cristian hasn’t been this good since we started the blog. He is full of energy, laughing, playing, and learning new things. Such asContinue reading “Day 442: Enjoying Spring 22”

We are happy to report that we have wrapped up the week of steroids as part of this cycle! Cristian did great with his spinal tap last week and in taking his extra medicine, although we did have to bribe once or twice. The steroids have an expected side effect of moodiness, tiredness, and weightContinue reading “Day 413: On The Upswing”

Our little boy is back! Since our last update (sorry it’s been a while) Cristian has been having an absolute blast. He consistently has great energy levels, his hair is growing, and he has been able to have new experiences. This is the closest to normal we have seen in over a year. Some ofContinue reading “Day 398: A Mostly Sunny Month”

It is astonishing how much things can change in the course of a year. This time last year our family was reeling from a freak snow storm and wishing Mimi and Gpa a safe drive back to Colorado, not knowing what was in store. Tonight marks one year since we took Cristian to the ERContinue reading “Day 365: One Year In”

What an awesome time we are having! Cristian has been feeling wonderful the last few weeks and enjoying life. We have had no issues with him other than having too much fun and refusing to go to bed at night. Whether at home or out and about, Cristian is ready to take on whatever standsContinue reading “Day 348: Better Every Day”

Today Cristian turned 5 years old! This past year has been rough to say the least, which makes today even more special. We spent the day doing some of his favorite things including walking around the mall which we haven’t done since pre-Covid. Surprisingly enough he remembered the place and his favorite spot. He isContinue reading “Day 339: Happy Birthday Cristian!”

Since our last update we are happy to report that our family had a wonderful Christmas and New Years with everyone together! Leading up to us being discharged it was becoming very stressful that we might have to have a split Christmas, but I think that it only made it sweeter because we were ableContinue reading “Day 320: Starting The Last Phase”

We are home! We have been blessed that Cristian has recovered enough that it is safe for him to come home and we can all be together in time for Christmas. This mornings blood tests showed continued improvement in his immune system kicking in and the doctors felt there was no need to keep usContinue reading “Day 309: Christmas Come Early!”

Despite our hopes, today did not yield increased immune cell counts for Cristian. The counts did not drop, which is good, but we are looking for significant gains. It’s not uncommon for this medication to take a day or two to kick in and he did receive another dose today. Hopefully tomorrow we see thingsContinue reading “Day 307: No Progress, Yet”