Love the Ride

The face of a guilty little man! Found him eating bathtub crayons! He had the pink teeth, tongue and lips by the time I saw him. Ha

This is a picture from aunt Bri's phone. Makes me wanna smother him in kisses!

Well, we paid a visit to ENT yesterday. I was a little nervous and I can't quite put my finger on why. Sheesh. Such an emotional roller coaster. Basically, he said we don't need him at this point. I'm still figuring out how I feel about it. Seeing as pulmonary released us from further sleep studies and his breathing/snoring/obstructive sleep apnea has not changed, there was no need for an intervention. His OSA is definitely worse when he is sick. The new PCP observed Bricen sleeping on my shoulder in the office while he was sick and that's when she made the referral. The snoring was that of grown men and freight trains and the obstructing was evident. You can watch his chest move as if he is taking a breathe and usually around the fourth breathe he will actually get startled enough to take a breathe. This is why mommy does not sleep much when Bricen is sick and she tries to keep him healthy. So, there you have it. It is what it is. 

After, I wanted to give him a chance to stretch his legs before going back in the car seat so we walked around and checked out the glass elevators and of course I took some pictures. 

I'm not sure what he was saying but there was some deep conversation going on with this horse! 

And then he showed the horse his car he got for being a good boy. I was cracking up! Love him and these simple moments so so much!

❤️ 

We got home in just enough time to attempt an oral feeding and a breathing treatment before therapy got there. I wanted to do a no tube trial since he is seemingly healthy right now but have been unable to reach the old therapist to have as a resource.  After talking to my husband I've decided perhaps this is God leading us in a different direction for a reason. I'm gonna ask for a dietician through our home therapy with our next eval and then I think we will give outpt ST from my hospital a try. 

We did end up trying a no tube day for the first time. I am telling ya, I will say it again. Even though I would buy tickets over and over again for this sweet baby, teaching your tube fed kid to eat by mouth is an emotional roller coaster! Its a wild ride but we are on it. We are strapped in, hands up in the air, hair and cheeks flappin' in the wind all while maintaining that somewhat creepy and usually ridiculous smile they capture in those roller coaster pictures!! 

 The shirt is off bc of trying to "drink" out of the water bottle and getting wet (and heading to the tub soon). The ruffle on the back of the diaper had caught his attention and he had worked that diaper down a little. He was cracking me up walking around like this! I  am a keep the clothes on type of momma. He's never really spent much time without a shirt on bc he gets curious about his button and it needs to stay clean (and in). After all, cleanliness is next to Godliness. Haha

I was telling therapy bye and we turned around to see this. It's blurry but to cute not to post.

As he was knocking he was saying "daddy?" "Ewo?" 

Now Ill ramble about that stupid butt feeding trial and the idea of no tube feeds. We lasted until about 8 pm and then decided it was time for a tube feed. What he had put in his mouth consisted of apples and bacon but both were spit out. As I mentioned, he was trying to "drink" out of the water bottle. 

 

He fell asleep around 4pm. He woke up obviously weak and fussy. My husband and I were both at the table with him offering practically everything from the cabinet but he would not have it.

At 8 we gave half a feed. My thoughts were to get him feeling better then maybe he would eat. Do half at 8 and a full one at 11 to get a good nights sleep. I had not even unhooked him from getting the formula and he was instantly vomiting/wretching and crying, formula out his nose, the whole nine yards. Ok. I'm telling myself maybe I gave it to fast. We let him settle down. Some time passed and we tried again. Same flipping thing but he at least kept part of it down. And these are my thoughts...

These people are freaking crazy! I know the course of therapy we have done with this therapist is a technique that has worked for kids. I've done my research. I know she is not just making this crap up as she goes. But for whatever reason, it is not the way to go with Bricen or he is just not ready. 

After puking a part of our second attempt at half a feed, I wondered for half a sec if he had a flu bug that was just surfacing. I say this not to make you all think I'm crazy yet again or to make you think I really need prescribed some Xanax. I guess it's to say if you know any moms trying to teach their kiddo to eat, be nice to them. Hahaha or really any parent/caregiver trying to deal with a chronic condition. Be nice to them. But I'm "tough" ;) it's not me that I hate it for most, it's Bricen. Time to regroup. Time to find another therapist. I know this post is all over the place and I'm sure has lots of errors but I'm posting from my phone. I think I also noticed that the font changed. Weird. 

If it does seem like I'm a little on the cray cray side... eh, maybe I am. I know I'm crazy for this little man! But hey, we are doing it, arms up, cheeks flappin' in the wind, maybe even a little drool flying out the side of the mouth, lovin' every minute of the ride. ;) 

*just a reminder that we know how incredibly blessed we are to be dealing with the minor situation at hand and have to ask that you remember the other kiddos fighting cancer, waiting on new hearts, etc etc and their families.