Levi is having a few good days. He's sitting up, talking, and doing his other therapies to help his speech, movement, strength, cognitive, swallowing, ... okay, just about everything we take for granted. [...]

Levi is doing well today. He's out of the PICU and has moved up to the 11th floor

AND...[...]

Levi continues to get a little stronger and more alert each day. Hopes are by the end of the week he'll move to a big room upstairs. You remember, the ones where they can take walks to see the fish and paintings, and also see the stadium. Not that there are games but the view is much better, not to mention the extra space for Beth and Zack. Fingers crossed he meets those benchmarks! [...]

Levi made another big step today as he was reintroduced to his old friend - the big red chair.  As you can see, he did not necessarily welcome this reunion, but it’s great news that he is doing well enough to start activities like this.   Getting stronger every day![...]

Levi’s treatment was changed ever so slightly this morning - to include cuddling with Mommy in the chair!   Otherwise, things remain stable at this time as we are waiting for his transplant to continue to engraft.  He’s sleepy and it is hard to wean down some of the medications as if it’s done too quickly he’ll be in pain, but each day gives us little glimpses of his progress.   And, any day that includes cuddling with this little man is a good day!  [...]

Slowly but surely Levi is making gains.  He is now completely off oxygen!  He is still very sleepy due to the medications he is on, but they are weaning those down gradually.  He isn’t really talking to us yet but he is making it clear that he wants us to leave his blanket alone.  He is resting peacefully until someone tries to move that and then he surprises everyone with the decibels he can reach in protest.  We don’t blame him - he deserves some sleep for all of the hard work he is putting in!   [...]

Hope everyone has a fun but safe New Year’s Eve!  We are all celebrating that Levi was able to get off of the ventilator today - a great way to end 2020!  He’s tired but hopefully will continue to improve steadily over the next few days.  We are so thrilled with his progress and so thankful for the support as his journey continues.   [...]

Levi is making small improvements day by day.  He is still on the breathing machine but there is hope that he will be able to have this removed in the next couple of days.  The infection seems to be controlled at this time with ongoing antibiotics and the return of his white blood cells.  Hooray!!!  We are still waiting for his red blood cells and platelets to follow suit, but it is normal for those to lag behind.  
Today they were able to wean down some of his sedating medications and for the first time in 11 days he was able to communicate with us by shaking his head yes or no.  It comes as no surprise that it all goes back to Blaze...when asked about which tv show he wanted to watch - Daniel Tiger and Paw Patrol were firm no’s...but Blaze got a pause and then a definite head shake “Yes!”   That’s our little amazing Levi! [...]

Levi is now ten days out from his transplant.   And for most of those days, we could all agree that it has been a terrible, horrible, no good, very bad day (yes, we love children’s book references).  He remains in the ICU and on the breathing machine for now.  He has had many challenges in this short amount of time requiring antibiotics, antifungals, medication to support his heart’s hard work, blood transfusions, platelets, and medicine for pain.  But...yesterday we got the first signs that his transplant may finally be taking hold which for him will be his path to recovery.  That combined with Beth and Zack’s tireless support of him, holding hands, reading stories, and staying by his side means that today is a little less terrible.  [...]

Levi wants to wish everyone a Very Merry Christmas! 

He's still heavily sedated but his blood pressure is better and the antibiotics and antifungals are fighting off the infection.[...]