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!!
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.

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.


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