Home Sweet Home

It feels so good to be home!  Let me first say that.

Boston went well, which was such a relief.  LJ's labs were all good.  The only thing was, his prograf level was a little high, so the dosage was decreased, with repeat labs on Monday.  His liver function tests were better though.  Right now the doctors are planning a meeting in the next couple of weeks, to determine the change that they are going to make with his medication.  LJ was taken off his cellcept which is one of his immune system suppression drugs, because of his elevated liver enzymes.  Now that he is off of that, he still needs another medication to replace it.  He has to be on 2 immunosuppressants, right now he is just on one, and the steroid prednisone.  Hopefully, they will find a mix that keeps his liver happy... soon.

Aside from that, everyone in Boston was so impressed by how well LJ is doing.  They were all so happy to see us, and see that he is doing good.  That is one thing that I LOVE about Boston Children's Hospital; they are very positive, and supportive.  Those things are extremely important to me.   I mean, I have heard some discouraging, and just downright hurtful things from doctors when it comes to my son and his health, so to have positive people involved in his care....I need that.  Anyway, in the past year, LJ grew 6 inches in height, normal is 3 inches on average, so needless to say, my baby is tall.  Everything else was good with his check up, which was such a relief.  It ended up being a good trip to the doctor.

Everything actually went pretty smoothly that day.  We were on time for everything at the doctor's and, even got to the airport a little before our pilot arrived.   I have to send a huge thank you to everyone at Angel Flight !!!  They are AWESOME!!! we had two amazing pilots get us to Boston, and back.  The best part is, they volunteer to fly you in their personal airplane....for FREE!  It is such a great resource.  Everyone is so friendly, I love it.  The only catch is that someone has to volunteer to fly us.  If no one does, we usually drive.  Either way, I appreciate any help that we can get.  Like I said before, it is so much easier by flight.

Of course we took a bunch of pics while we were gone, here's a few.....

LJ throwin' up the peace sign in the hotel room

All smiles, but know he so tired

My baby know he wanna walk so bad

LJ doing duck lips, lol :) 

On our way home, getting ready for take off

LJ got his Mr Potato head pilot

Snatched the camera for a selfie :) 

Knocked out before the plane even took off.  My baby was exhausted

UPDATE!!!!!:

I found this video of LJ when we were getting ready to fly home.  I had to share it with you guys.  I love to hear my baby's voice.  Just follow the link, I had to show you all this cuteness :)