Levi started to open his eyes a little bit more yesterday which made us all so happy to see those baby blues!  He continues to need support for his kidneys and breathing so we are taking things one day at a time.  He has needed a couple of transfusions due to the effects of chemotherapy, but that should start to get better soon.  We’re hoping to see him wake up a little bit more over the next few days and plan to continue watching his Blaze video with him multiple times, reading him stories, and holding his hands.[...]

Levi continues on dialysis and the breathing machine.  His kidneys have still not woken up so we’re giving him a little more time and adjusting a few things to try to jumpstart them. Keep the prayers for urine (a sign the kidneys are recovering) and that he is able to wake up a little more coming![...]

Unfortunately Levi’s kidneys have been unable to recover and at this time he needs to start dialysis.  The first 8 hours are the most critical so please keep our little man in your prayers that everything goes well and we get rid of all the extra electrolytes and medication byproducts that are causing him issues.  The plan is to continue dialysis for the next 72 hours and then reassess as we hope this gives his body the rest and support it needs. [...]

It has been exactly one year since Levi first went into the hospital and we learned of this awful disease.  When looking back, despite how hard it has been, it really has been nothing short of AMAZING.  A year full of Levi playing his favorite games, chopping and kicking like a ninja, reading us his favorite stories, singing songs, and, of course, asking us about our favorite colors.   He relearned how to sit up on his own, scoot and even crawl…none of which are easy feats…meeting each with the same excitement and joy - “I did it!”  He is as silly and lovable today as he was a year ago no matter what he has endured.  We are extremely lucky to have been able to witness the Amazing Levi in action.  [...]

Levi was allowed to have a special visitor at the hospital today - big brother Owen!  Owen wasted no time in ignoring all of the machines and went right over to Levi to say hi and hold his hand.  He wanted to sit right next to Levi so we raised up his chair to make it easier. He then picked out a funny movie for them to watch together.  And, as you can see, he held his brothers hand while intently watching The Croods.  We all know how much Levi loves his silly brother so it made getting chemo again tonight a little easier for sure![...]

The last few days have been full of changes.  When looking for the source of infection, we obtained a ct scan of Levi’s abdomen.  Unfortunately, what we found was that instead of infection, the cancer has now spread to his liver and peritoneum.  The cancer is what is causing the build up of fluid in his belly (ascites), and this is putting pressure on his lungs which is making it harder to breathe without support. This was definitely unexpected and has led to a change of plans.  

Levi will be receiving chemotherapy both today and tomorrow to hopefully stop the cancer from leaking fluid into the abdomen.  This, plus possibly some drainage of the fluid if needed, will help as we hope to get the breathing tube out in a few days.  For now, we are praying the chemo is hard on the cancer, easy on Levi’s healthy cells and that it works quickly to allow Levi to start feeling better.  

[...]

We know you’ve seen him in pictures throughout the last year, but wanted to formally introduce you to Stompy the elephant.  He has been Levi’s loyal companion through all of the ups and downs and the only one who rivals Beth and Zack for number of snuggles.  Once again he is accompanying Levi in the ICU to make sure we’re keeping Levi as comfortable as possible.  
Levi remains on ventilator in the ICU.  He has continued to have fevers so today he will be evaluated by an infectious disease specialist to help determine the best treatment as the source of infection is still unknown.  At this time, we are thankful his seizures are being controlled.  He still has a lot of fluid in his belly and lungs although perhaps slight improvement today.  
Slow and steady…[...]

Thankfully, there have not been any more big changes for Levi.  He remains in the ICU on the ventilator on continuous medication to control his seizures.  There have been no fevers since late last night so we are hopeful the antibiotics are finally helping him out.  They will be leaving as much the same as possible today to give his body some time to heal.  
Above, you can see one of the X-rays they took right before he needed more support for breathing.  Normally the airspace looks dark grey to black like you see near the upper part of the X-ray.  Due to all of the extra fluid, a lot of Levi’s airspace had collapsed making the bottom look white.  Yikes!  So glad he is getting support.  [...]

It’s been a very hard day.  Levi started having seizures again but after some time they were able to get them to stop.  As is typical, Levi was more concerned with others, using his first words when coming back to us to ask “Mommy, how are you doing?”   [...]

Levi is still fighting this illness and has now been transferred to the ICU.  He has extra fluid in his stomach (it looks like someone put a full size basketball in there) and now in his lungs.  This has made him very uncomfortable and it is increasingly hard to breath.  But, we know they will take great care of him in the icu as they have in the past when he has faced tough challenges before. 
He continues to fight the c difficile infection, but likely has another infection somewhere else that they have been unable to find as he is still having fevers.  We are hoping that they can find this soon and get him started on the right treatment.  
It has been a couple of very long days and nights for all, but especially our Amazing Levi.  Hoping he can get some rest to give his body a chance to heal.  [...]