Hellooooo

So, it's been a while again.  Which usually means things are going well, and they are.  I feel bad only posting about the hard times, because that isn't an accurate picture about what goes on over here.

For a little over 3 weeks, Maddox has been tolerating his full feedings at his full rate.  He is getting all his calories and is gaining weight.  It's a beautiful thing.  The puke buckets are put away, we aren't under constant alert, and we can actually do things again.  It feels like a normal life again. At least a normal life with a feeding tube.  Maddox has recently gotten more stamina and endurance for walks and play and he is also taking 2-3 hour naps a day in the afternoon.  It makes for some late nights some times, but without the nap he falls apart.  I am assuming he is growing as well.  It's amazing what nutrition does.

Mason is doing well. He's a bit tired of his little brother, because with Maddox's increased nutrition and calories, he can be quite a bit of a stinker.  Mason continues to do well with schooling and his sense of humor is maturing, and he is quite funny  most days.  He is also getting taller and taller and taller.  It won't be much longer before he is taller than me.  A few days ago he told me he isn't going to college because he is going to be an agent, or detective, or cop.  Once he understands the difference between the three he will choose.  Love my Mason!  Mason also loves watching black and white episodes of Rin Tin Tin, the old episodes of Batman and Lost in Space.

Maddox is still into his superheros and dressing up. He has also developed the fever for Legos! He and Mason can build with them for hours.  It's nice because Maddox can now build his own creations so he is feeling pretty good about that.  He has been interested in school as well and needs to sit down at the table with Mason.  I found some preschool units on Batman and Star Wars, so he has been very happy with that.  Those are some of my favorite moments. Sitting at the table with Mason and Maddox, helping both of them with their school work. 

Jack the dog is amazing.  He has been a bit of a stinker lately though.  Just refusing to listen and he had been listening so beautifully.  Training doesn't start until July, so hopefully he doesn't get too out of hand before then.  He isn't awful, just testing. We absolutely love him though.  He fits in perfectly with our family and is a dream with the kids.  The boys love him as well and I am sure Jack gets more hugs and kisses than he would like.

So, these last few weeks I have come to terms with the fact that our lives are not exactly "normal".  Our son has a feeding tube and that is not "normal".  I still fight tears when strangers look at him differently or when people think Maddox has on a harness thing with a leash.  We actually get that a lot.  People will chuckle and smile and comment on the harness.  It's hard not to scream "It's a backpack with a feeding pump!!! He has a feeding tube connected through his stomach!!!".  It's not all the time, but it happens enough.  I have also accepted the fact that there is no end point for this feeding tube.  I do not know how long he will have it.  No one knows.  I had to give up the dream that it would be short term like they originally said. (Initially we were told he would have the nose feeding tube for just 3 months; that was 8 1/2 months ago).

I have also accepted the fact that when Maddox gets ill, he will not be able to tolerate full feedings and he will probably lose weight and we will need to adjust the rate and strength of his feeds to keep him out of the hospital.  And that's OK. (well, it isn't completely ok, but you know what I mean).

I would love nothing more than for Maddox to be completely healed and to be able to eat enough on his own. That is my daily prayer, but I am also grateful that he is doing well, growing and is currently healthy.