Somewhat Rude, Yet Valid

Well, I have already deleted some of the last post and I'm sure I will go back and delete more eventually. You know you've rambled to much when even your husband says, "I opened it and then decided that was to much to read." Somewhat rude, yet valid. Seems to be the way to describe him a lot of the times. Haha

Little man is sick again. I'm praying today I start to see a whole lot of improvement. 

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.

Burn It!!

Something happen the other night. Bricen fell asleep without having to play with my face/eyebrow. It's all this blankets fault! We've recently had a lot more blankets out because of the winter storm and he has fallen in love with this one. It's a full size blanket yet he will try to drag it all over the house with him. More than once I've almost tripped and fallen over it! He's growing up to fast! And even though I joke and call him my little weirdo for having to play with my eyebrow, it makes me a little sad that he fell asleep without doing so. So, I can't decide what I want to do with this blanket. Burn it vs keep it out and let my sweet baby grow a little independence. Burn it? Totally. Hahaha :0)

We see the ENT for the first time this week, will have our regular two therapy sessions and then have our yearly eval for therapy as well. I have mixed emotions about ENT. I'm just gonna leave it in God's hands. There is a high of 47 today. We might break out of the house. But with all these young flu and H1N1 patients on their death bed at work it makes me nervous. I need to invent one of those fans that clip on you like the mosquito repellent ones but instead let it blow off Lysol. Money. Brilliant. :) 

Goodbye to Papaw and "Playing in the Snow"

Well, Dennis headed to Miami today. He stopped by to say bye last night. Getting these two to take a decent picture is near impossible with a TV on. :0) 

Love them both and the IU apparel. Mom would be proud. 

What does a mom that has a kid with no immune system that catches a cold that turns into puking and losing wt when he already weighs 2 lbs do when it snows? Well, I can tell you she does not let him out the door to play in it! lol So, on a whim, I got a bowl full and let him play in it today. 

How cute is he? 

Even more spur of the moment, we decided to try making a snowman. Which entailed me running to the cabinets and fridge for things to add to him. And I say running because anyone that has a two yr old, or has even been in the presence of a two yr old, knows their attention span is short! My dear sweet pumpkin is no exception. Add that to being in his feeding chair and you can cut that attention span in half because his patience for eating in general is zilch. Anywho, it was a fun time and I loved getting to do it with him. 

I can't help but laugh at the snowman! I was limited to Bricen safe foods to choose from. haha

In the end he was munching on the "snowman parts". That is our ultimate goal in these activities. success. 

3:40 am. Goodnight 

Cookies, Jello Jigglers and A Haircut

We've gotten a break from therapy these last few weeks. I will admit that it has been nice. I of course will do anything for Bricen but it's been nice not to have to clean up the house or get ready for therapy. I think it's allowed more time for me and Bricen to do fun stuff that is therapeutic to his feeding aversion. 

Wheat, milk and egg free chocolate chip cookies. The first batch was horrible. But I had never had them before so I could not tell if that's what they were suppose to taste like or if they were just that horrible! Second batch was good. Bricen took a few licks. (sigh) But we had a good time making them!

Good time making them and counting them. 

 I had made bacon for the potato soup for dinner. He decided the bacon was way better than the cookies. I love that I have to tell him not to stuff his mouth. Even though he is still not swallowing most of his food, I never thought I'd have to tell him to slow down and not stuff his mouth full! 

side note: see the old party napkins I'm using? out of paper towels. remember me saying daddy stresses w/more than ten items on the list? paper towels did not make the cut. :) In all reality though, Marty has been working late out in the weather every night and even on the days when only emergency traffic was to be out so a grocery store run has been put off for now. 

I guess I didn't realize in order to make these you have to use boiling water. Not so kid friendly. We survived. Good thing Captain Safety wasn't home!

Little help with taco night from my favorite almost 3 ft man. 

Notice the haircut? Yep, yours truly did that. It's a little short but I was still impressed w/myself. There is a picture in the cookie making pics that he looks like he has a receding hairline. It's that picture that made me decide it was time for a cut! And of course, I am not getting him out in the weather so a little snippity snip later and here is my Mr. Handsome Pants! 

He loves to "roar". That's what he was doing here. Love him so much!

And then you have the serious, down to business face. haha I think one more post should do it! 

Snowmageddon 2014

Snow, snow and more snow. Plus a little freezing temperatures. This hit while I was at work Sunday. I was so glad to be going home that night. The day had been...less than fun and I needed my Bricen fix. :) It was a beautiful drive home with a foot of snow on the ground and me and only about two other cars on the road, literally.

He was bundled up and layered up because our furnace was having a hard time keeping up. He was less than enthused about it!

Love 

Ol' Scruff needed some added warmth. An old sweater (that I never liked to begin with) of Bricen's worked great. 

But then Bricen kept trying to put other shirts on the poor guy. 

This dog. I usually can't get her to go out. Wind chill of -36 and you can't get her to come in. She's a nut!

And this is what's under that snow. I confess. I love it all. 

Random Picture Dump

Jake, this might hurt a little. 

He gets that Jake might want a drink, still doesn't take drinks himself. What am I going to do with this boy? I've gotten in the habit of sitting a drink on that table everyday. It might be working. I've seen him take a few sips lately. 

Chips and apples are still the recent kick. He swallows some. Most he holds in his mouth until we make him spit it out because he will be running around and we are afraid he will choke. 

Caught his "reading". He was making the chewing sound as he raised up. Cracked me up! 

Rotten face. 

I knew he would like the pipe cleaners because he is all about texture! Captain Safety deemed them unsafe because of the wire in them. They are a play together activity. :0) 

Loves to help with whatever I'm doing. I kept telling him he'd need a big chair. He had to learn the hard way. Oh the things to come. Haha

Ol' peanut has resurfaced. Kind of missed that bald headed baby. 

Bricen is restless tonight. He has been sleeping so well! I have to wonder if it's because I have tried cutting back prn breathing treatments the last two days since he has seemed perfectly healthy. Praise Jesus. He has had a little cough but that could be reflux as well. We are continuing w/the pulmicort twice daily. Think i'll add the albuterol back tomorrow and see how he does. He's a "handful", but he's also a few handfuls of cherished love.