Tuesday, February 24, 2015

Heart-i-versary

Happy One Year Heartiversary to our little man! He is now one year past his Glenn operation, so we decided to celebrate with a heart cake! It is heart month, after all!

In Josiah's world, singing and cake does NOT warrant any smiles.  He's probably sitting there thinking...here we go again...they're going to try to make me eat this stuff!

He's holding the cake up for the camera so well! And, as you can see, that little finger with frosting on it is careful not to touch that sticky object again!

Well, as usual, cake ends with tears.  However, we are still so proud of how far he has come from a year ago!  He may not be eating cake just yet, but he is eating food by mouth. And for that...we are thankful. :)

Trains

We had a few free moments before speech therapy one day, so what better way to use our time than to take adorable pictures in front of trains?!  His balance came in handy as he was able to stand on his own while I backed away to snap a few photos!






I just can't get enough of this little boy in his overalls!

Thursday, February 12, 2015

Been a While!

Wow! It's been a while since I've written a post!  A lot has changed since the little man's first birthday in regard to his eating.  He conquered a HUGE hurdle and has begun to eat by mouth. We are so proud of him for taking "bites" and not needing his feeding tube throughout the day. The majority of our attention has been toward this feeding journey that we're on.  Josiah has really come a long way, but it seems that we're at a standstill. His lack of weight gain, constant throwing up and aversion to textures have made it very difficult to make progress.

We have three main goals right now. One: Figure out what causes him to throw up. Two: Get him to eat/chew textured foods (and enjoy it). Three: Get him to drink from a straw. Now to the average joe, these really seem like pretty simple goals. A few nights ago, as we were trying to get our tired and sobbing baby to eat a sweet potato, I looked at my husband and said, "Man, this stinks! I've seen other babies just pick small bites of food up off their plate and eat with no problem. Why can't this just be easier??" 

When we are about to try a textured food, we have to prepare ourselves--build ourselves up for the challenge.  It's going to be a battle, but when we see him pick up one bite of food; the size of an ant, mind you, it's a giant victory! We feel like we've accomplished something huge! So that's one of our goals--to make it to a place where it's not a battle, but something to be enjoyed.

Our third goal also seems pretty easy, but for a little person who has NEVER used the suck reflex, it's a pretty big challenge.  He drank from a bottle for 2 days and we've sampled with sippy cups, but nothing has ever stuck. It's quite the process to teach him to drink from a straw.  Currently, in speech therapy, our therapist dips a straw in water and puts her finger over the end. Then, keeping the water in place, she puts the straw in Josiah's mouth and lets that tiny bit of water drip into his mouth. We do this again and again, but she eventually keeps her finger on the end of the straw to get him to try and suck the water out, rather than let it drop in his mouth. And eventually, she turns the straw into the cup in one fluid motion to keep his suction going in hopes of him drinking water through the straw. Sounds easy...right?

And that first goal...the one I skipped over because that's basically how we feel in general.  There seems to be no solution to his throwing up, so we feel lost.  We've tried medication, checked allergies, done GI studies, etc.  Doctors are stumped by him and have no insight for us. Meal times become frustrating because everything ends up coming back up anyway. So we pray. We pray every night as we put him to bed.  We pray that his tummy will get stronger and that God will heal whatever it is that's ailing him. Pray for God's hand on this tiny life.