It’s been a long time since I’ve been on here, and we have been through A LOT! Little man was…

It’s been a long time since I’ve been on here, and we have been through A LOT! Little man was hospitalized much longer than we had originally anticipated from 11/9/17-1/9/18 and then again on 1/12/18 for a little over a week. During our hospitalizations Leo had his trach placed, and thank gosh, bc it has saved his life more than once. We had about 10 different infections while hospitalized including several pneumonia’s, MRSA, and a really bad case of RSV on Christmas Eve.... we weren’t sure if he was going to pull through, but here we are. After discharge we tried to adapt to our new life of 24/7 nursing and care. Sharing a home with other people was hard a first, but we have all become family. Leo was discharged the most recent time in January and we wound up getting RSV AGAIN!!!! We have continued to deal with major infections, and most recently.... today, were readmitted due to having bleeding from Leo’s trach as well as blood all in his poop. We know where the bleeding from his throat is coming from, however, we are not sure about the other end. We know it’s an active bleed, likely upper GI, and likely caused by his several medications taking a toll on his body. His heart has started to begin showing signs of weakening and we have been lots more dependent on the ventilator... meaning NO time off. Still, through this all, Leo is in good spirits. He can walk if you hold his hands, can talk over his trach (most kids need LOTS of therapy and a speaking valve, Leo just taught himself), he knows how to set his ventilator off just for attention, and is all around an amazing kiddo! I would be lying if I said I was not discouraged, bc I am.... the plan with the trach was never to be dependent on a ventilator. I am sick of him always having an infection, and just want him to be able to have a “normal” life. I am however reminded daily (by Leos doctors) how far we have come... they are right! Leo is ALIVE... the tubes don’t bother him, only when he can’t make them extend as long as he would like, and we have come far from the days when we were told they weren’t sure if he would make it to 3 months. Our plan for now is to have a procedure done next week, find the bleeding, try to stop it, and address the bleeding from his airway. With any luck, we can be out before next weekend! For now, enjoy these pics of Leo the Lionheart! He seriously is one of the cutest babies I have ever seen (maybe I am biased 😂)