June 15, 2016

Cleft questions

So clefting is a huge umbrella hosting a pile of various cleft combinations and concerns.  This post is geared towards the specific procedure Bauer had.  Some kids won't have to have it.  Some kids will have to have a larger portion implanted.  I have many friends that are literally having this procedure done between tomorrow and the next 6 months.  Just wanted to answer a few questions and may relieve a little stress at the same time.

I felt way less prepared concerning food on this procedure vs. any of the others.
Here are a few things that might help.
1.  PRACTICE with syringes before your surgery date.  It doesn't have to be a long term thing.  We practiced with gently pureed potato soup and one other item I can't recall.   I think it helped Bauer mentally knowing what to expect.
2.  remember their jaws are not wired shut for this one.  So the fact that they can move their jaws gives them 1000s of more options with food.  Bauer uses his tongue to smash the food against his palate.   YOU NEED TO TRY IT so you can idenify with and help them figure out what to do.
3.  I started to quickly understand that pure liquid wasn't going to have to last long as long as he could use his tongue without using his teeth.
4.  THEY CANNOT CHEW.  If you break an arm its in a cast for 6 weeks because the bone has to heal.  Their mouths are in cast-mode for 6 weeks.  You don't want to chance them eating something that would tempt the chewing process.   Our brains naturally want to chew but we have to help them think every time they put food in their mouths.  I can't explain to you how often I say, "No teeth.  Just tongue."
5.  Stick with jello, yogurt, and applesauce packets if they aren't comfortable.  Let them eat whatever they will eat!!
6.  THEY CAN EAT ALMOST ANYTHING THEY WOULD NORMALLY EAT.  YAY!!  You just have to be creative.
Catch?  It has to be blended.  Example, we had hamburgers at a restaurant.  I took our blender with us and blended them with ketchup.  It wasn't soup but MUCH smaller, softer portions.
7.  If you're not sure it can be eaten...PRACTICE IT FIRST ON YOURSELF.
8.  We have a blender, food processor, and magic bullet.  I take the bullet with me in case we need it while out.  We've used it several times in the restaurant.
9.  BREADS ARE NOT THE BEST.  I would not advise using breads.  We've let him have tiny bits of bread but it just doesn't dissolve.  That leaves him eating chunks of bread that sit on his stomach.  Again, try and see for yourself.  French toast is on the list but I think it would have to be REALLY soft.
10.  I would advise to only use paper cups and plastic spoons.
11.  Let them eat whatever they will.  I've noticed Bauer getting irritable and I wonder if low sugar was because of it.  Let them eat.  They aren't on a diet.
12.  If you even THINK they are using their teeth GO BACK TO MORE PUREEING.  Not worth chancing it.


FOODS WE'VE USED
If we fed - we either used the syringe or dumped into mouth with a spoon.  If the food was thick enough we would also set the food upside down on his tongue as he stuck his tongue out
If he fed himself - we tried to get him to turn the spoon over before eating to avoid suture hit.  They can self-syringe but its tricky.
1.  Jello
2. Pudding
3. Yogurt
4.  Eggs  - scrambled, broken up into tiny pieces - NO TEETH!
5.  Ziti Meatballs - Blended to think consistency - smash on palate
6.  Hamburger - early on it was liquid goo but moved into blended tiny pieces
7.  Chicken and yellow rice - goo early - rice can be tricky.  You don't want it getting stuck in suture lines.  Milk, mashed potatos, broth helps
8.  Mashed Potatoes
9.  Even tried Pulled Pork - not my fav idea but we chopped it super fine.  It was soaked in sauce and tore apart easily with the tongue
(I do not advise big hunks of meat early on - blend blend blend)
10.  Mac and cheese - overcook the pasta
11.  peas - steamed - smashed well
12.  soups - I used potato soup and added a can of black eyed peas - cooked it - blended slightly and would sit on the spoon easily
13. Cereal pureed with milk - basically like a milk shake - nothing with nuts or seeds
14.  Ice cream! :)

ALSO - toss out the idea of straws - they are not allowed to suck
NO CHIPS, PRETZELS, CRACKERS, NUTS (even in ice cream), or anything to cause possible chewing.  Not worth getting it messed up.

YOU WILL BOTH DO GREAT!!  You will figure out what consistency works and what doesn't.  Go day by day and take it slow.  Don't get too excited and try too much too soon.  Always keep jello and pudding on hand.  They love it and its easy.  There's 8 million flavors too!!

I didn't appreciate how much the jaw not being wired was going to help.  Use it to your advantage.

Please feel free to email if you have questions!!!


Sitch Day

Day 6 was FULL!


Got up early to get a run in before we headed downtown.  Its about 45ish minutes away and the appointment was 1:45 p.m.   No problem!  We left around 11:00 and figured we'd have plenty of time to get a bite for lunch.  The plan was for Adam to drop Bauer and I off at the hospital while he went to get my grandmother at the airport.  
Well......a "let's stop by the running store on our way" ended up putting us on the other side of the planet in the middle of China town.   If there's one sure way to destroy a marriage its city traffic.  Throw in hungry kids and being late for an appointment and the apacolypse is right around the corner.   However, I was encouraged that if we were permanently stranded this beauty was nearby... ----->
After yelling at Google maps and attempting to click my ruby reds together we finally found our way back.
Hulk-smashed some ziti noodles in the cafeteria and B was able to get a little bit in his belly.

So getting stitches out is NOT big deal but Bauer was not looking forward to it at all.  Part of me gets irritated but I tried to stop and realize this boy has been through an incredibly amount of pain and discomfort and is tired of being poked and prodded.   So here goes.....

When they are little the docs put them to sleep to remove stitches.   Bauer ordered up a dose of anesthesia and was greatly disappointed.  Again, you and I realize its not a big deal but this is the first time he's been awake for stitch removal AND the previous 4 days have been a bit rough.   Its just not what he wanted to do.  I mentioned the catheter again and that seemed to help........ for a few seconds.
Do you think the doctors realize their shadows lurking at the doorway initiates an immediate fear of the unknown?   Lol!  Every time we saw a shadow we'd look at each other and wait........then the shadow would leave..... Whew!  Bauer was secretly praying they'd forget about us.
Then we hear the hospital intercom, "Attention, we have a code red on level 5...code red!'
Bauer, "We need to leave."  Lol!  Umm...oh no.  Nice try.  We are NOT missing this appointment.
"Bauer, we should lock the door." "Yes, Please, Mom!"  Then we hear a baby in another room screaming her head off and Bauer says, "Bet she's getting her stitches out."  I was dying laughing but he was seriously nervous about the whole thing.  "Mom, you've never been through this!"  In my mind I'm thinking, "You're right.  I've only been carved open to have 2 children shoveled from the depths of my womb.  What could I possibly know?"   Haha!  I just tried to remember his situation and be on his team without letting him run!!   He's been my hero and one tough kid through this whole thing.  Prayed for strength, cried a bit, talked a bit and it was time to go!
The shadow lurketh once more and the door opened.  We were hoping for lunch but the doc and his team emerged.   Lol.
They were very pleased with the lip and nose site.  Stitches came out quickly and we were ready for the next set.   You can see there was still a bit of swelling but MUCH less than a couple days ago.  Dr. Mulliken said everything looked great!

Now Dr. Padwa's team would take the hip stitches out.  This one took a little bit of coaxing.  The bandage was tight, sticky and sore.  The area is tender and understandably uncomfortable when people touch it.
One stitch was far from easybut afterwards Bauer did end up laughing bc he realized he may have overreacted a bit.   He has rarely shed a tear through this whole process but I think his nerves had maxed out.   This is the incision area just above his right hip.
I don't care what you say......THIS BOY IS A BEAST AND WE COULDN'T BE PROUDER!

Again, I can't say enough about our doctors and their teams.  They are absolutely incredible.






Surgical Procudure (a bit graphic) 
this isn't Bauer's but its an example of the bone graft

Afterwards, Bauer was asked to talk to a little guy who was nervous about his bone graft happening the following morning.    Pretty neat experience.

We are finally free!!  We'll  return in two weeks for a check-up but then nothing until our annual clinic in the spring!  Woohoo!!    Praise God we made it!

Whew..glad we can relax!!   And other than Aubrey peeing her pants, a truck in front of us jack-knifing and flipping his vehicle, Adam almost choking to death, and nearly getting rear-ended in a car pool line whilst choking episode......it was like being at the spa.

Needless to say we spent the remainder of the day taking it easy and enjoying some down time.









June 12, 2016

Good Times!

Much better day today.  Lots of laughs and a big smile from B man.   Swelling gets better every day.  We were able to get out of town for a bit too.  Bauer was less worried about being around people. Side note:  Does the back seat have an amplifier that detects when bodies under the age of 10 are present?  WHY ARE THEY SO LOUD?!?!  Its a cinemax-theatre-Star-Wars kind of loud.
And in reference to an earlier post....we are never allowed to have grapes in the car again.  "Aubrey, here...I bought you some grapes."  one millisecond later..."Ahh, man.  I dumped them all on the floor."  I bet if it was a candy bar you could've held that thing through a demolition derby!
Breathe.....breathe.....turn up the music and roll up the pretend limo window.   :)

On the way back we found a great playground!  I did have a list of "not to dos".  You will not...
- make a ninja warrior course
- climb rock walls
- climb trees
- get on anything higher than your knees
- chase ANYTHING
Bascially, you can stand still by the baby swings and watch all the little kids and your sister have fun. Ok....so I didn't actually give him the list, but it was running through my mind.  Listen.....if this boy trips on a Tic Tac and messes up his mouth I'm booking the room next to him during the repair.  This mama's nerves ain't got time for that!
There was a great skate park too!  Aubrey now says she wants a skateboard.  Might as well.  We've met our deductible and have 6 months left!!  Hahaha!  You gotta laugh.

Food is fairly steady.  Smehyls Smorgasbord served up Mac and Cheese, cereal, pudding, jello, and eggs today.  He's not eating nearly what he usually does.  I think its mostly due to the need to chew and the goo menu being a little too goo-like.   Poor guy is trying so hard.  We just have to keep being creative and try whatever he will eat.   We cut off a little bit of the syringe today to give him more food at one time.  Seemed to help.

Got out by the water this afternoon!  It is FREEZING and covered in toe-cutting rocks so naturally the kids wanted to take a few laps.  We settled for feet dipping.  It didn't last long with these Florida babes.




This guy was scuba diving near us yesterday and brought his catch of lobster over to show the kids. He said if he found more he'd bring us some!!  We had chicken for dinner.......

We get stitches out tomorow.  Pray they gas him, otherwise, he says he won't let them do it.  That oughta go well.
Gotta go school these kids in some Pac Man!!

Dad got back safely today and Ganny heads up tomorrow.  Pray for safety!

Love y'all!



Roller Coaster



Its been beautiful weather here.  Sorry if I made my fellow Floridians snarl!  I heard everyone is wearing floaties down there.  :)
50s and breezy up our way.  But if you know me, that's getting really close to my "stay-inside-and-hibernate" temp.   Again, my sweaty Florida friends......I'm sorry.

So the last 2 days have been up and down.
I am so so thankful for a couple of things...
- my husband for his patience and not on a permanent walk down the beach.  :)
- my dad for spending time and money to come up here and help us.  Its been such a blessing
- my grandma for coming up after dad leaves to do the same.  They are a true gift.
- friends and family that have sent texts, emails, gifts, and other surprises just to show some love.  Absolutely humbling and it has brought great encouragement.
- for blenders. Thankful I don't have to regurgitate my food for Bauer like mama birds do.  (However, the curb appeal may be about the same.)
- Cleft mamas!  You girls are amazing!
- that MidFlorida hasn't called and canceled our account.  Lol!  I'm just sayin'.
- for Christ.  He is supplying when we don't expect it and He's patient beyond measure.  Wish I could say I was such a put-together believer that trusting God was just easy.  But the truth is its a daily struggle to just know He's got this.  To remember what all He's done in the past and He's worthy of trust.  So thankful He continues to whisper - its alright.  Thankful for the Creator of all things that we get to call Father.


Well.....the blender has been a champ.  My dad's Vitamix has been great.  Bauer wanted hamburgers for dinner so....... cooked the hamburger, gravy, etc...........and then pressed puree.  And Voila!  Gooburger!!Mmmmm.....
Bauer said, "Its looks like vomit but takes like heaven!"  Haha!   We used a syringe like this one.


Yes, it looks awful but I've been trying to make sure we taste it too.  I think it helps.  If you can get over the awkward smell/texture combo you're fine!  IF you can ....... :)

Other successful meals have been chicken and yellow rice (be careful with rice),  soup, peas, chicken breast, mac and cheese.  Its pretty amazing how many things can be pureed.  We also have lots of fruit and veggie pouches like this one.
Most of them are on the baby food aisle.  They aren't too bad.  Lots of options.  Great to have in the bag when out of the house or just need a quick snack.  We have actually been able to use the spoon a little bit but it makes me nervous.  Its allowed but if its in a spoon it means the food is a thicker consistency which your brain automatically wants to tell your mouth to chew.  CHEW = BAD.  Watching him like  a hawk, Bauer seems to be doing really well using just his tongue with a few of these foods.  Just BE CAREFUL!!

We had a visit from the tooth fairy last night!  Bauer had 5 teeth extracted - show me the money!!  He woke up to a nice little gift that I hope he offeres to buy me coffee with.  :)
So Team Smehyl does not like to sit very long.  We are outside, on-the-move people.  Trying to remember we need to take it easy but we're starting to get the kind of cabin fever that a game of UNO just ain't gonna fix.   Thankfully, outside the rental is a small rocky beach area.  Its no Anna Maria but its outside!  Didn't go out much the first couple of days bc we didn't want sand, etc. getting in his sutures.   But by day 4 we were crab digging and rock hunting!   And zero reports of being pinched!    Kiddos had a blast.   I kept praying the vision I had of Bauer face-planting on the rocks wouldn't happend.   Is it just me or do other mamas think this way??  Lol!

Honest assessment of the last few days?  Exhausted, encouraged, discouraged, confident, clueless, laughing, crying and taking it day by day.

Did I mention what a trooper this girl has been??  She asked if the tooth fairy would leave her money if she left the shark's tooth she found under her pillow.  Haha!


June 10, 2016

Breakin' Outta Here!

575 papers signed and 3700 lines disconnected and we are FREE!!    This was yesterday.  He was ready to go home!! Ah man....I was really enjoying the toddler-sized chair/bed I was using!! Whatevs...let's get!

 
The last time we had a big surgery Bauer was 9 months old.  It was just Adam and I so we could just stay wherever.  And we didn't have food concerns bc Bauer was still on formula and baby food.
This round we knew a simple hotel room wasn't going to cut it.  This surgery involved a longer stay and obvious food modifications.  We needed a kitchen, laundry,and room for a family of 4, visitiors, and way too much luggage.
The city is ridiculously expensive for almost zero room.  We figured if we were going to spend the money we might as well have what we need. We researched places on the outskirts and found a cute area near the coast about 35 miles away.   Email me if you need details.
I am so thankful this place was available.  Plenty of room and most importantly a grocery store nearby.    My opinion...If you need the room just get it.    Let's be real.  We'd all rather be home right now.  Its not like you're spending nonsense money on randomness. I felt guilty for a while but I had to get over it.   Its necessary.
We ended up having to rent a car too. We would have come close to $600 or more in taxis after the 12 days so it was a no brainer.
Now, I may end up leaving Adam in Boston for a month or seven to pay it all off but he'll be ok.   :)
Till death do us part, right?   Haha!

Beleive it or not this is a 7 seater.   Lets play.....Where are the kids???  Lol!  We have enough luggage to open up a thrift store.  Might not be a bad idea.  Where's Shark Tank when I need them?!

But on a more important note.....WE GET TO EAT TODAY!!  I asked the nurse if we could start chowin'. Otherwise, Bauer may start gnawing on the furniture.
Remember....they can't chew ANYTHING!  No straws either.   Spoons I tried but I until his mouth his healed up a bit more I just don't feel comfortable.   Spoons work if you just dump food like jello or pudding items but they can't put pressure on the spoon itself.   I wouldn't try to "make it work".  Its not worth something getting messed up and having to go back.
Sooooo...........
Blended Mac and Cheese baby!!  Mmmmm.......
Short Story - It blended, he ate, he's as happy as a bird with a french fry!
Tonight he wants hamburger.......Mmmmm....liquidy hamburger.....with a side of pureed tater tots......Mmmmm.
Not hungry anymore???   Sorry.   Ha!
I told my teeth today how thankful I was that I can use them.  

So today he was much more swollen but the hospital said to expect it.  Not scary or anything but just be prepared.   He doesn't like the picture of himself today so email me if you want it.  I told him I wouldn't post.  Little bit of a chipmunk-look happening.  Cutest chipmunk I've ever seen but still.

And we've already begun our Star Wars marathon!!  Watching Episode III tonight.  Aubrey loves it but starts to get a little side-tracked about half way through.   She's been such a trooper.


I apologize if these posts are a little more info than you are really wanting but I know some families want the details bc their babies will be going through the same thing soon.  

Much love!





June 9, 2016

Long NIght!

Morning!

"A thousand years in Your sight are like a day that has just gone by, or like a watch in the night."  Psalm 90:4 

For us, the night felt like 1000 years!!  Lol!  
Anyone that has every stayed over night in the hospital knows what I mean.  I should've just locked the door.  I seriously believe they make it loud and disruptive so you never ever want to stay longer than you have to.  I mean.....if it were quiet...I'd be fine with people waiting on me all day!  Lol! 

And praise God for my husband and Starbucks Ice Caramel Latte's!!  I'm just sayin'.  Its legal so I'm drinking as many as possible.  :)   Big shout out to my kids and parents at school for the Starbucks Card gifts!   

Bauer came through all surgeries incredibly well!   His face was understandly swollen and very sore.
So proud of this kid.

We had started giving water but I think it was a little to soon.  He swallowed so much blood that it didn't sit right and eventually came back up.  If you are going to try liquids just make sure its slow.  We used the syringe and will use that for the next several weeks.  They said the paper cup is fine as well but be careful while they are swollen.  It tends to spill everywhere.    

The nose revision was minor compared to his first round.  This one was done to help with symmetry.  This part wasn't very sore this time.   I wish I could explain the time and precision our doctors give to their patients.  They want it perfect.  And we are so appreciative!


The Bone graft brought back memories from his palate surgery.  Swollen mouth, tender and bloody.  (not gonna give a pic - little gross)  There are lots of stitches from the teeth extractions and grafting.  I said, " Hey buddy, try not to let your tongue mess with your stitches" B, "I can't...they're everywhere!"  Well then lets just meet in the middle and try not to tie square  knots with them.  :)  He also has gauze in his nostril that was driving him crazy but couldn't be taken out until Dr. M arrived.   The boy couldn't breathe!!
Next phase....catheter.................yep.
He was able to get up and walk to the bathroom with help.  Not gonna say it was pretty but we did it.  Could've used a Bauer-sized Bjorn.  Haha!   Gonna try and get some miles in later.  Feet....I meant...Feet!!  ;-)

Dr. Padwa's team came in and said he was doing better than 99.9% of patients!!  YAY!!!
The Lord has been so good every time we go through a round like this.  Yes, Bauer cries, whines, and he hurts but he hangs in there and fights.
Her fellow doctor checked out his hip and everything looks great!

And then out of nowhere we heard bells ringing and we have the go-ahead for JELLO!!!  Might as well have been a T-bone!  Bauer says, "Man....that's pretty good!".   I tried to keep my fingers out of the way just in case.  This boy is hungry!!
Dr. Mulliken arrived and out came the 4 1/2 foot packing!!  Ok...maybe it wasn't that long but I could've used it as a dinner napkin.  No wonder he couldn't breathe!!
He said everything looks great and he sees no reason that we can't be released.  HALLELUJAH!

This incredbly gifted man and his team have been with our guy since day 1!!  So thankful for him and the gifts God has given him.   Like Adam said, "God could have healed him in one second but He chose to use man in the process."  What a neat experience to be able to give such blessing to families.  Not sure if some of you know how we even found Childrens Hospital Boston.  When we first heard about Bauer's cleft we started researching in our initial clueless attempts to find a great facility.  I, being a new mom and scared to death, wanted to see if anyone could do the surgery in utero.  A friend called me one day and said, "Hey, I found a hospital that does this but they've only tried it on goats."  haha!  Well, my bleating wasn't quite up to par but what the heck!!  Let's call.  We did, and no, they hadn't tried it out on actual humans(dang!) but I remember Dr. M calling me back on my cellphone within 24 hours.  He spoke directly to me and acted like I was already a patient and that Bauer was one of his kids!!  I knew the Lord had opened a door and we would do whatever we needed to make it happen. God supplied and our adventure began.


Dr. Padwa is another incredible blessing.  This is our first round having to deal with dental concerns.  She has been great with Bauer and truly treats him like he is important.  She is one of the main reasons we were able to get in so quickly.  At our April appointment she made sure Bauer was scheduled ASAP bc his teeth were moving in too quickly.   Many doctors with a booked schedule like hers would have made us wait and said, "sorry.  can't do it."  She made it happen and we are so thankful.  

Being released soon.  Thank you all for your texts and love.  Your guys are a treasure!

Pray for B.  He's sore and the stitches are irritating him.  Walking is a task right now so we are praying for strength and quick healing. We know your prayers are a major part of why he's doing so well!
Lots of love!!





June 8, 2016

Done and Done!

Woohoo!!!

God is good and big man is done!!  Dr. M said everything went great.  Will be able to go back to see him in a bit.  Next phase - FOOD.

These mama and daddy hearts are rejoicing!!  Thankful for the gifts the Lord has given people to take care of our babies!!!
We saw a little girl getting off the elevator this morning with a shirt that said, "I have a new heart!"
Takes your breath away that God has given us such abilities to help bring life back to people.
Can I get an "Amen!"  :)

Phase 1 done!

Hey guys!

Sorry it took so long.


Finally got him back into the OR around 12:45.  They tried doing the IV without gas and it was NOT happening.  No big deal.  It just takes a few minutes more to make him oozy doozy before the actual IV.  Can't blame him.  I hate needles being gouged in my arm too!!
No worries....Dr. Smehyl is in the house! 

For you cleft mamas...they give you gas or iv option.......go with gas.  Not worth them crying and panicking.   Remember the harness??? Yep....thought I was gonna have to use it.    

The nurses were so wonderful, as usual.  I was able to sit back there with him until he started seeing unicorns.  (They really should box that stuff up and put it on the Tylenol aisle).   Have to admit I kind of broke down too.  I know he is going to be completely fine and our situation could be so much worse but a mamas heart is a mamas heart.
But on that note....I NEVER EVER want anyone reading this blog to think we ever feel sorry for ourselves or need a pity party.  We share because we know God has used other families' testimonies and we pray ours is an encouragement to someone too.  This entire blog was started to educate and encourage other families because we knew what it felt like to have absolutley know idea which direction to head or what different stages held.   God has been beyond good since day 1 and we know He will continue.  All thanks and praise to HIM!!


I think we'll all agree that there comes a point in one's life when spying someone's bare end out of the back of their gown is not in adorable in any way whatsoever.  Thank God...we're not there yet.  Lol! This was Bauer at his first surgery at 5 months and the other is today.  We promised we wouldn't post one with his butt out (not that we don't have the pic :))  so this will have to do.  Still super handosme.

We were updated around 2:30 p.m.  Bone graft is complete and incredibly successful.  His little bootay is going to be super sore but after a couple of days he should be functioning a little closer to normal.  He had 5 teeth extracted as well so I hope the Tooth Fairy has a savings account!

Dr. Mulliken is now starting his lip and nose.  He should be done in about an hour.   Hoping we will be back there by 6:00 p.m.



Blog Spot

Just read a blog about another little girl that had the exact surgery B is having.
Lots of encouragement concernig pain, walking, and FOOD!!!
My King Kong eater is extremely worried he won't survive! Lol!
Thankful to the Lord for last minute encouragement!!

And just so ya know......there's no coffee like homemade coffee.
JUST A GOOD CUP OF COFFEE, PEOPLE!!  I JUST WANT A GOOD CUP OF COFFEE!!
HAHA!!    And who has lied to the northern states concerning the life-giving power of sweet tea??? Its extinct up here!!  My personal opinion......may have lots to do with why people don't smile much in Bean Town.  :)
Dont' worry, once we get to the next place we are staying I will have that coffee pot burnin' and sugar packets rollin'!!
Hopefully, we aren't renting some crazy earth home that doesn't believe in electricity or sugar.  I guess there's always a percolator and we can hope for a nearby beehive.

Hahaha!  Sorry, y'all.  I think I'm reaching the state of exhaustion and we aren't even at the hospital yet.  5 year old feet jabbing me all night have made sleeping a challenge.

Will post later.  :)

Countdown

T-minus 3 1/2 hous and counting!!


Its finally here.  Woke up this morning so thankful the Lord got us here safe and healthy.  Now we just gotta put on our big kid pants and do this.  
I may tie a harness to Bauer just in case he tries to run.  Had a bit of a meltdown last night.  He's held it together so well up to this point.  He just needed to let it out.   
On that note..we've been so blessed to have so many other sweet families in the same boat.  Their kiddos have gone or are about to go through this same cycle.  The Lord has used this crew as a testimony to help get us all through stages and meltdowns just like this one.  
Headed to the hospital in about an hour or so.  
Bauer woke up saying, "I want some breakfast."  Umm.......quick....somebody find the Wild Kratts marathon channel and keep this boy occupied!!! ;)
Oh and I can't wait to go outside and see what Boeing Jet landed in front of our hotel around 3 a.m.!! It was probably just a dumptruck but seriously it sounded like we were on the air strip.  THE CITY IS SO LOUD AT ALL HOURS!!!  #gardenviewnexttime   Lol!  Upside??  No chance of us sleeping through any appointments.  :)
And thank you again for all of your texts and emails.   Beyond grateful.  



June 7, 2016

AND ITS A GO!!1

AND ITS A GO!!

We have surgery scheduled for 12:30 p.m. tomorrow.
Advantage - Don't have to wake up at the crack of dawn
Disadvantage - Big man doesn't get to eat after midnight.  Only water or apple juice.

He says, "I'll NEVER survive."  Pray for a full belly.

B will be under anesthesia for about 3 1/2 hours.   He's never had issues with it and he's been under way longer before so we are praying that continues.
I'm actually starting to feel so anxious that I might ask them to hook me up too!  :)

I wish I could explain how the Lord has been faithfully reminding me to stay calm.  I have failed miserably 99.9% of the time thus far, but I do sense Him saying, "Calm down.  I got this."
There is an expected (I may be the only one in my family to agree with this) level of concern and caution when trying to keep them healthy and away from anything that might hinder this surgical process.  SOOOOOO much time and money has been invested and I don't want to screw it up.   Yes, I occassionally move from cautious to CODE RED but its all out of good intentions.  I'm convinced, however, the Lord has a sense of humor and has reminded me I can't put them in a hamster ball. (Unless, of course, someone has one I can borrow.)

When I sit back and think of some of the things that I've said or that the kids have done over the past 3 days I have to laugh.  I want to cry.......but I'll laugh.  These are just a few.....

"Stop biting her hand!"
"Don't lick your hands, for the love of all creation!!!"
"Stop fighting or you'll get hit by a car!!"
"What in the......Why in the world are there random grapes smashed in the bottom of this bag?!?!?"
"Mom, we've already walked 47,000 miles!!!!" (not true - he was off by a good 1000)
"Stop eating cereal off the floor!!"
"Aubrey, leave the garbage cans alone!!!"
"Bauer, why are you  trying to eat leaves off the tree?!?!?"
Bauer was inches away from stepping right on a DEAD SQUIRREL!!  A DEAD SQUIRREL!!  Why is there a dead squirrel on the one path we are taking!?!?!?!
I heard a giant thump thinking the roof had caved in and  Aubrey had fallen off the bed!! Are we on a ship in a hurricane?? Did I miss something???  Why are people rolling off of beds??
"Dad, don't push me in the river!" - is that really something that needs to be feared???
"Bauer, quit climbing on the child impaling equipment!!!?  Exhibit A.....


And poor Aubrey's ear drum ruptured before we left Florida and she can't here "a dump truck drivig through a nitroglycerin plant!" (for those of you who know the quote.....you're welcome. :) ) She seriously is having a hard time hearing.  Please, pray the fluid in her ears dries up.


     What people may think we're feeling about it all...  

       How we really feel............

Keep the prayers coming.  LOL!

My dad arrived today and he treated us all to dinner.  Super Awesome!   Bauer decided he wanted lasagna before surgery day so off to Italy we went!
Our waitress brought his food and said, "Buddy, if you finish all of this I'll give you all my tips from the night"  Everyone's eyes at the table shot open and we all said, "Uh ma'am.....you may not want to make that bet."  Hahaha!!  Of course, we didn't see her the rest of the night.

I really have to give a shout out to my Aubrey Cakes.  This girl has been rolling with the punches!
LOVE HER SO MUCH!


We were able to get in a run today too!  Later, Bauer says, "This was a pretty good day." :)  Yep!



Thank you all again.  Your comments, texts, etc.  have been so encouraging.  I honestly think the only reason I haven't completely lost it is because I know we are covered in prayer.
Thank you!

Much Love!

FLAT AND HAPPY

Flat and Happy!


One of the most difficult parts of staying in a hotel room is not having a kitchen.  We usually find some well-priced eats close by.  There's a bagel/muffin breakfast included downstairs but if you know my kids......it might as well be 2 Cheerios.  They devour it as a starter.  Lol!  
Busy Bees breakfast diner just across the street was fantastic.  Our table looked like we were prepping for winter hibernation and wouldn't see the light of day for a couple months. Look..... I can't help it they serve all pancakes on separate plates. Space issues. Lol!  

Later we ran into an area that I think is suppose to be a state park.  I assume this based only on a random man in ranger uniform not on the scenery or wildlife.  Lol!  We did see turtles but I wasn't convicned they were actually alive.  

We tried geocaching but once Bauer picked up an old nasty lighter covered in reasons for antibitocs I was DONE!   After wiping our hands, face, ears, knees, and any other skin exposed to the recent wilderness wonders of Slime Park we took off to a nearby playground.   2nd round was much much much better.   We set up a few American Ninja Warrior courses (both kids won their division - :) )  , fed the birds our snacks, and watched a woman hang what looked like underwear from the swing equipment.  Odd.  We tried to stay upwind.  


"See, Dr. Mulliken, what had happened was........"

A quick ice cream stop and we headed home.

Anytime we travel more than a couple of miles we always take the pack mule!!  AKA....the double stroller.  We call her Natasha - (the reason why is a whole different story - Lol)  It helps tremendously when we have too much to carry or when both kids decide their legs won't work any more. It has taken us to more places than I can name and has never complained.......until today. Natasha was FLAT!!  I can't blame her!!  140 lbs of child and random travel supplies would make a buffalo surrender!  No worries though. Quick trip to the bike shop and we're back on the road!  
NEVER A DULL MOMENT!!!  Lol!  

Should find out exact surgical times this afternoon.  

Much love!





  

June 6, 2016

So it seems after our pre-op appointments that Bauer has changed his mind and would like to head home  Lol!  This is why God gives children parents.  But..if jumping ship were an option  I'd be airborne by 18:00!!!  :)

Our appointments went really well today.  Spoke with both surgeons and their teams and all will go as planned.  Looks like B will be out for about 3 1/2 hours.  Not too bad.  
We will find out an actual surgery time tomorrow morning.  

So now we wait, incubate ourselves from all germs, and eat as much as possible before Wednesday morning!  I would worry about Operataion Binge if we weren't taking a 480 mile trek every day. Cheaper and cleaner than taxis.  We occasionally use Uber when the volume of whining children makes me want to throw myself onto the floor and cry.  Haha!  I do have to say, however, that these kiddos are tough!  They seriously get dragged from one end of Boston to the other and rarely lose it... especially when the promise of ice cream is dangling near by!    

Our hotel is nice.  The only detail left out of the brochure is the TRAIN GOING BY OUR WINDOW EVERY 30 MINUTES!!!  ZZZZZzzzzzzzzz.............BEEEEEEPPPP BEEEEEPPPP!!  Haha!! You have to laugh because finding a quiet place in the city is nearly impossible.  Between trains, ambulances, dump trucks, Chernobyl birds (ha!), and college party scene you just have to expect noise.  Simple affirmation as to why we are staying outside the city after surgery.  :) 

These are the two surgeons that will be with Bauer man....Absolutely fantastic people that we are ever thankful for.   Be praying for them too! 

Will check back later!  Got a coloring contest to win!  haha!!

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