Feeding Camp Days 20 & 21

I've posted before about how my soul just feels a song.  As I go through these seasons in life, I tend to just resonate with a song and I can listen to it over and over and over.... and over.  Sometimes it's a worship song, sometimes an unknown song I find randomly and others it's a popular top 10 hit.  right now it's Oceans by Hillsong United.  This feeding camp business we're in the middle of has been a roller coaster and at times I do feel like I am drowning but thankfully God is good and so in control.  Knowing and resting in this FACT is what gets me through a lot of things in life.  My hope is that through these trials, I can grow, grow in maturity, life experience, strength but most of all in my faith in the Lord.  That I may become a stronger believer for the glory of the Kingdom.  That God's light can shiner brighter through me.  And I hope that through all this, as Wyatt grows, his heart grow and come to know the Lord and he can use these trials to glorify the Lord too.  That he sees all the miracles God has preformed using him!  I hope you enjoy the song as much as I do.  :-) 

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Wyatt attempting to not sleep.  He pulled back the curtain between his bed and mine.  It's now safety pinned so he can 't do that.  :-) 

I want to say THANK YOU!  Your prayers have been felt, heard and are being answered!!!  The past two days have been so good and oh so sweet for my soul.  Please keep praying!!!! 

Wyatt's intake has increased consistently.... well as consonant as 2 days can show.  :-)  But a victory is a victory!  I'd like to ask for another prayer request though.  Just add it our never ending list.  ;-)  Wyatt still gags easily and when he does he pretty much loses his entire meal.  That meals he lost all that hard work,because eating is very hard work for him and he also loses all the calories he just took in.  It's always so sad and so frustrating to see.  Wyatt is so good about gagging, vomiting and just moving on like it never happened but I know it did.  And we don't get to add more time to his meal.  Once that timer goes off, it's over.  No eating until the next meal.  Breaks my heart for my little guy.  He is working and trying so hard to get this eating business.  It's just does not come naturally for him.  He also still has reflux.  He's a champ with that too.  He's been waking up and before we can even go down to breakfast he's trying to throw up.  And at 7am, there's nothing in his stomach.  So, a lot of work to get CCs of stomach bile out.   As I sit here and finish this very paragraph, Wyatt is laying in bed trying to fall asleep, coughs and vomits what's in his stomach.  *deep breath*  I don't tell you this so that you'll feel sorry for me but to be real and so you know how to pray for us with details.  God is in the details, big and small.  

Riding in the wagon with Grant!

I also have results for his gluten tolerance testing.  To understand all the medical lingo, I simplify it as much as I possibly can.  LOL.  So here goes my best attempt at explaining what happening.  When they ran Wyatt's blood, there are basically two test, we'll call them test "A" and test "B".  Test A, from my very limited understanding, is the 'deciding factor".  His came back negative for gluten intolerance = not allergic.  Test B came back positive.  And from what I gather, this doesn't usually happen.   I asked if it could be a false positive and the doc said there's always that chance.  But she wanted to call and speak with Wyatt's GI doc (whom we LOVE!) and see what she thinks.  Dr. A (the GI doc) wants Wyatt to stop taking one of his meds.  Apparently this med can have a negative effect after some amount of time and she's hoping that will help the vomiting.  She also requested the doc here order an upper GI test to see if maybe Wyatt's stomach is sneaking up through his diaphragm- pushing more on his esophagus as well as not allowing his stomach to empty properly and causing his stomach to physically be smaller.  The upper GI us basically a swallow study.  He'll have to swallow barium and they'll take a video x-ray while he is doing so.  He had one of these when he was about 7 months old.  This was before he was drinking anything at all by mouth.  Needless to say, it was awful.  

Always climbing.  Such a boy!  :-)  

So, depending on how Wyatt reacts to not receiving the one med and the upper GI test, he may be put on another med and potentially need to be scoped so they can see from the inside what's going on.  We currently have a routine appointment scheduled with GI for July 1st and that may be moved up to sooner if needed.  His eating is progressing and we want to help Wyatt in any way possible for him to be able to keep all his hard work in his body (until it comes out properly of course).  :-)  

Giant soccer balls are awesome!!!

I'll be honest, I'm not thrilled about the swallow study or the scope.  I'm really hoping the scope doesn't have to happen.  That requires Wyatt to undergo anesthesia and put on a ventilator.  Not sure if that'd equal a night in the hospital or not at this point. But what's one more night if we need it.  ;-)  

More wagon rides with Miss London!  

I also want to add, I've met some pretty amazing families while I've been here and our time isn't even up yet.  Some of the stories here are miraculous, heartbreaking, inspiring and very difficult all at the same time.  I am thankful for these stories God has written as well as ours.  

Thank you again for praying with us!    

"fear not, for I am with you;

be not dismayed, for I am your God;

I will strengthen you, I will help you,

I will uphold you with my righteous right hand...

For I, the LORD your God,
hold your right hand;
it is I who say to you, “Fear not,

I am the one who helps you.""

-Isaiah 41:10, 13

Feeding Camp Days 16-19

Whew.  I was not prepared for how busy and how tired I would be getting to be in the room and feeding Wyatt myself.  My days have ended and all I've wanted to was lay down and turn my brain off.  Again, I was not prepared.  I didn't think it'd be that different sitting and watching him through the mirror and actually being in there.  But it is a big difference.

A friend sent me this and I just liked it a lot.  

It's gone well overall I think.  His volume is still way down and he still has standoffs.  I've had moments where I've wondered if this was the right decision?  If this program is for us or not?  But in my gut, I know we should be here.  This is for us.

We had some concern for a couple of days.  Wyatt's feet and hands were YELLOW.  So they took some blood for a liver panel.  Everything came back normal.  No idea why he was yellow.  They also did testing for gluten tolerance.  I keep forgetting to ask about those results, I'm guessing normal.    

While his volume isn't up yet, he has made some big steps in his development and mouth motor skills... if that is such a thing.  Before coming, he could not move his tongue side to side, laterally, at all.  Now he is making very small twitches and slightly crossing his mid-line with ihs tongue.  That's wonderful.  His gross and fine motor skills have improved as well as his language.  And we still have 10 days left.

I was trying to fold laundry, watch some hulu and let Wyatt play on the ipad.  he decided that he needed to be half way in my lap to play ipad.  Silly boy!  

I've heard stories of families whose kiddos make giant steps in eating in the last week of being here.  My prayers are that this is true for Wyatt as well.  That the volume he takes in by mouth increases dramatically.

Wyatt brought me his shoes and insisted that I put them on.  I tried to convince him to get the correct ones not nope... two RIGHT shoes.  ;-) 

He really does enjoy food and all the flavors that he has tasted so far.  Plain and simple, he doesn't know what to do with it in his mouth and he doesn't connect hunger to eating.  Tonight, James was eating some watermelon and Wyatt was picking up a piece, putting it in James' hand for him to hold up to his mouth so that he could lick and taste it because he likes it.  Over and over again he did that same thing.

Wyatt pushing his friend Grant around on the blue squirrel.  

PLEASE pray with us.  Please beg the Lord that it would click for Wyatt in the next 10 days.  That we can return home knowing we are so much closer to Wyatt being an eater and able to not use his button.  And for peace for wherever we are when we leave here.  Thank you so much!

In the car, leaving Baylor, as a family.  Wyatt looks super excited! ;-) 

James did his in room observing yesterday and got to feed dinner tonight for the first time.  We've now both fed him.  We've both had to endure standoffs as well as successful eating.

Looking at all the animals. 

We also got to leave the hospital yesterday for a few hours as a family.  It was very refreshing to "get away" for the morning.  We went to the Dallas World Aquarium and Manny's Uptown for lunch.  We had to feed Wyatt lunch at the DWA.  James was his high chair.  I set the timer and followed protocol as best we could where we were.  He did good until the end.  He didn't want to drink his milk the last 2 minutes.

Wyatt was very clingy to Daddy.  I think he missed him while he was away with work.  

Daddy missed Wyatt while he was away at work as well.  

Very big fish!

Gigantic fish!  

A manatee and  sea turtles.  

Giant crabs!

sawfish

sharks

OUT TO EAT!  Manny's Uptown!

Such a happy boy! 

I don't think I've had a sip of alcohol in about 6 weeks... that was one strong sangria and it was delicious!  

James feeds Wyatt per protocol for the first time.  

Wyatt lays in Mommy's bed watching netflix before bed. 

Sara and Miss Kensley came for a visit last week!  

Brenna and Miss Aurora came to visit us as well.

We also had a couple of other visitors but forgot pictures.  Thank you Miss Amber, Aunt Robin and Uncle Stuart for coming to see us both! 

Feeding Camp Days 14 and 15

I couldn't blog yesterday.  I was so frustrated.  Wyatt barely ate all.day.long.  And not because he wouldn't take his bites but because he wouldn't drink his milk.  If he doesn't drink his milk, he doesn't get to move onto taking bites.  At dinner, he took his first three bites and refused his milk in a full fledged stand off for 25 minutes.   AHHHHHH!  I wanted to cry. I wanted to bang on the glass or put my head through it, not sure which... or run into the room.  It was two difficult days back to back.

Stealing some sugars!

If you are a mom or dad of a "normal" kiddo reading this, I have a request.  Please, stop reading this right now.  Stop and pray.  Thank our sweet Lord for your child(ren).  Praise His sweet name for your parenting struggles.  Praise His name for the fact that your kid(s) can do what should come naturally, like eat.  Thank Him for your picky eater.  (I promise you, after one meal of a feeding disorder you'd gladly take your picky eater battles.)  Just be thankful!!

Happy the mud is drying and we can run around outside again! 

I am thankful for days and emotions like I've had for the last couple of days.  Those days force me to lean on the Lord and those around me.  They are humbling and sanctifying.  I'm reminded of how big our God is and in control He is.  He wrote those days and those emotions.  And when the days get better and the emotions are happier, they that much sweeter.  I find that much more joy in all the moments coming to us.

This picture just cracks me up!  It's like he's had a hard day and just need to stand there and relax for a minute!  

I got to sit in the room today while Wyatt ate his meals.  I didn't feed him but I could talk to him.  I could encourage him to take his bites and drink his milk and praise him when did those things.  It's a learning curve because it's literally scripted speech but I'm okay with that.  He took his bites and he drank his milk with no stand offs today.  His volume was still no where near what I've seen his max get to.  Today was still successful.  No standoffs is success for today and I needed it.  I think Wyatt needed it too.  I found myself getting choked up with each bite, drink or silly face he made today.  I was am just so thankful.

Daddy and Wyatt having a good time on Sunday. 

We did have one little hiccup today.  For lunch, a tech trainee sat in on the feeding, to be the person feeding him.  It was her first time feeding so needless to say, a lot of time was wasted, not for her, she was learning.  While I am all for them learning and they need to get in there and do it but of all days, this was N.O.T. the day for Wyatt to be the kid they were getting the experience with.  Our overall goal is sheer total volume.  The slow moving feeder doesn't aid high volume.  All that was at lunch so before snack time I spoke to our fearless leader.  She agreed and it was the usual tech feeding him for the rest of the day.

Tomorrow I will get to be the one actually feeding Wyatt. I'm kind of nervous.  Prayers for my consistency with protocol and Wyatt's willingness and desire to also fall his part of the protocol.

Feeding Camp Day 13

I really don't feel like blogging tonight, so this may be a short one... or a long venting one... we'll see what happens.  :-)

I was trying to catch one Wyatt's silly faces but missed it.... he was avoiding taking a drink of his milk.  

Wyatt woke up happy this morning and I thought, "Awesome!  No tears upon waking up.  That means he got some good rest and ready for the day!  It's gonna be a good one!"

wrong...

Not to say it was bad, frustrating is probably a better word to describe this Monday.  That or uncontrollable.

Being a sleepy boy relaxing in his nap nanny!

I'm not sure what this kid is doing but I promise you, I AM RACKING MY BRAIN TRYING TO FIGURE IT OUT.  Is it the room he is in?  Is it the person feeding him and the words they are using?  Is it the toys and or videos they are offering?  Does he feel okay?  Is he sleepy?  Is he tired of milk?  Is he trying to show some "control"?  Does he need to poop?  Would me being in the room make a difference?  Is he just not in the mood? Is it his runny nose?  Oh.My.Word.... He did not eat a lot today and I do not know why?  I keep trying to pretend but I promise you, I'm just guessing.  I don't know why.  Maybe tomorrow will be better.  I sure hope tomorrow will be better.  I PRAY tomorrow will be better.

Finally getting to go outside to run around. 

Had our first official "Family Meeting" this afternoon.  I was disappointed that the ST didn't show up.  I know we all have things going on and I'm not sure why she couldn't make it but it was still disappointing.  There isn't really more than a moment or two before and after each session, so you really don't get a lot and these meetings are our "guaranteed 30 minutes" of face time and to have everyone in the room.  It would have been nice to hear from her, if she knew in advance, that she would not be there.  It was our first meeting since we got bumped last week and I opted to wait until this week to have an official one.

Pushing his milk around on a cart... NOT drinking it of course. 

On the positive side, Wyatt is back to his original admit weight.  Thanks for praying.  With that news, no changes will happen to his diet.  Night feed stays where it is and same for his day feeds.  We did decide to stop adding oatmeal to his blended real foods.  It was making it too sticky.  It works great in baby purees but not the real blends.  So, they are going to work to see how they can calorie boost.

Helping the nurses do some office work... or spit cleaning the mouse.  {Don't worry, I sanitized his mouth right after... kidding, I wish I could... }

We also had a sweet visitor this morning, with Starbucks in hand.  (I told you anyone coming bearing Starbucks or Smoothie King would be welcomed! lol!)  It was nice to hang out and just chat.

Miss Sara and Kinsley visiting us at BOCH! 

Wyatt did not throw up last night or today at all.  He got choked up a couple of times but kept it all down.  PTL.  

Running the halls. 

*Deep Breath*  God is good, as always.  We have good and bad days and I am okay with that.  he provides, sustains and is in absolute control.  I find peace and rest in Him and His promises.  Please pray tomorrow Wyatt will make the choice to eat and drink!

Feeding Camp Days 11 & 12

The Weekend

Yesterday {Saturday} Wyatt started his new schedule.  I think I'm going to stick with this one.  I mentioned before that it is the "early" schedule.  It's still not perfect but it's better than the "late" one.  I think nothing is going to be perfect until we get home and I can take control over what time I want all of Wyatt's meals to be and we can work that around his sleeping.  PTL for a little more control in the future!  :-)  Something to look forward to, as if being home with ALL of my family isn't enough.  LOL.  

How Wyatt prefers to work on the iPad.

James came {yea!!!!} at lunch time, suitcase in tow.  We had a good day.  Wyatt did a little better with his eating.  Still not back to his "high" total but better.  I took the night off and went home.  It was hard to leave my guys but I knew Wyatt was in good hands.  I was happy to be going home but it's just not the same to be home all alone.  I'd rather be back at the hospital.  But I did get some good, uninterrupted rest.  I can't say the same for James.  He said he woke up like 10x during the night. Poor guy.  I also think the bed is a little too soft for his taste.  A friend gave me the foam pad she used while she was here, I like it.  

In the room I have to keep the stroller folded up and kind of hidden otherwise all Wyatt wants to do is push it around and there's only so many places he can push it... and really not many places it can be pushed. 

Wyatt has thrown up a time or two over the weekend.  This morning at breakfast, James said he threw up at the end of breakfast and he emptied his stomach.  SO hard!  I wanted to leave right then and come back to BOCH, especially after James told me he was whining because he was hungry later on, gut wrenching!  :(  But the doctor came to visit, as she does every day and got him into lunch a little early.  As the day went on, the eating got better.  I was hoping to make it back in time to see Wyatt walk about from dinner to surprise him but that didn't happen.  

75oz worth of Wyatt's blended diet food.  If nothing changes in his diet, this will last for 6 days.  It is 47 calories/oz. 

I got Wyatt's blend for the entire week made.  James has a lot going on at work so we won't see him until Saturday this week.  Visitors with lunch, Starbucks or Smoothie King are allowed in to visit us.  lol.  

On a good note, Wyatt has not thrown up in 3 nights!  That's AWESOME!  Right now most his calories are being received at night and that hopefully means he won't lose any more weight.  I'm a little nervous about tomorrow morning's weigh in.  Like I said before, I don't want to know what they might suggest if he hasn't gained any weight.  I may strap him to a chair and not let him run around for a week so he can't burn calories running around all day long!  If only I could actually do that... Please pray for his weight gain!  And his volume intake!  

Playing in the courtyard with mommy and daddy.

I got to go to Bible study tonight.  That was refreshing.  If it weren't for me having that I would have not gotten up, worked out, worked in the front yard, done laundry or started ordering Wyatt's birthday party stuff.... So, not only was it good for me, it kept me home for longer.  

Daddy showing Wyatt what's over the wall.  

Yeah, so in just over a month Wyatt will be TWO!  How in the world will we have a two year old?!?  Our journey to get to two has been very different than most.  It has gone fast and super slow all at the same time.  I don't really know how to explain it.  I know most people would say, "Cherish it, in a blink it's gone" and while there is truth there it's just different.  When you have a kiddo that medically is challenging, I think we can kind of look at things a little bit differently.  While one mom would be so sad their baby isn't using a bottle anymore or has moved on to table foods... I am jumping up and down and praying for my baby to get bigger and drink from a big cup and eat table foods.  Not to say that I don't miss my tiny little baby boy that falls asleep in my arms every single day but I'm ready for him to be able to be a little more normal.  And I do cherish every moment I have with him because we weren't promised these moments and we were a lot closer to not having them than I'd ever like to be again.  :-)  

James making it difficult to take a family selfie!  

A little sneak peak of Wyatt's 2nd Birthday Party!