Wednesday, August 7, 2019

SARPE, Malocclusion, Palate

Wow...I used to love blogging.  It gets to be a different experience as your children grow and you're not sure where the fine line is of this your journey and this is their journey.   ......BUT, Connor is okay sharing, so I shall.  I flat out asked him if it was okay to share and he said yes.

This past surgery was Bilateral buttress corticotomies, V-Y advancement flap closure of upper lip, Corticotomy Maxillary, and placement of palatal and maxillary expander.  That's all straight up from the clinical notes and I'll allow you the chance to google it.  Basically, part of his Pierre Robin and Craniosynosis 'issues' included problems with facial bones, his palate, and how his adult teeth formed.  Some things don't grow as they should or don't grow at all.  His adult teeth had no room to come out and the teeth themselves are all over the place in an unnatural way or even fused together.  He's such a cute kiddo that it's not obvious that underneath that creamy kiddo skin/face, his bones are a mess.  He still gets pressure checks for his eyes and apparently, a good sneeze and his hearing or eye sight can go (exaggerating here but it's a thing that must continue to be monitored as he grows....and so far, his hearing has a few issues but he's good here).

So, to prepare Connor for surgery we got him this great book, The Surgery Book: For Kids by, Bhatia MD, Shivani  (weird text provided by copy and paste).     We sat down a few days before surgery and just talked about the reality that he was going to have bones cut above his teeth, a contraption would go inside his mouth, this would have to stay in his mouth for 4 to 6 months, and that it would hurt.  It would hurt bad but it would be temporary and it was to make room for his teeth to come in and when he was grown, all of these things that may need to happen in the coming years would be so that when he was fully grown, he wouldn't have to hopefully go through this anymore.  We said we'd deal with one thing at a time and do our best.  We said one day, you're going to have one hell of a tough story....that when you faced a crappy day, you'd look back and know you've been through some things and it would get better.   ........anywho, back to the book.  He didn't want to read the book so we just sort of looked at the pictures.  There were good pictures of an IV, pictures of an operating room, pictures of the big lights he'd see before he took his anesthesia induced 'nap'....great book really.  And then the kid getting a popsicle and going home in a wheelchair with a smile on his face.  ......we let him know, he'd not get the popsicle right away and the wheelchair leading him to our car as he smiled would take a day or two or three.   ......honestly, Connor is 7.  He was getting more done than a rough dental procedure or even tonsils coming out (though that deserves a sad face for little ones and much empathy).  ....anywho, Connor was rather bored with the conversation, slightly excited about possible attention and babying because of what would happen, and mainly concerned with shots.  ...we assured him that the nurses/doctors would be informed that he hates shots...and to please numb him or do what you can to make it quick.

Surgery day.....Connor couldn't eat after midnight and he could have some sprite (or juice or water) that morning but nothing for like 6 hours before the surgery.  He was fine with all this.  Connor already has a ridiculous diet and isn't a huge fan of eating or drinking.  He's been on Pediasure for some months hoping for a bit of weight gain is what it is.  He grows.  He's healthy-ish.

Pre- Surgery...he'd just got his cool hospital jammies.  He has his Joe (cute stuffed penguin) and Curdis (crazy little stuffed yellow thing from his fav place, Culver's).....and his blanket.  He's a penguin fan (though the blanket has polar bears)...even had cool penguin socks but nurse had him change out of those.  

.....his attitude was still not in what I'd call reality....or maybe it was for him.  He was chipper and cuddly.  I think he loved the attention because he's not that loud kid that does things for attention (bless his heart, that is Sawyer's thing ❤😉).  ......then, IV time came.  We had told the nurse his fear what shots and she made sure she let the IV lady know (there was a public moment where it was duly noted...HE DOES NOT LIKE THE POKING).  The IV lady asked if he'd like a count of 3 or not...he wanted it...she proceeded to count as fast as flash and placed the IV in record time...he didn't even know what happened.  Tape was placed and a smile was on his face.  Wow, she was good.

....anxiety started to show a bit.  Subtle, but obvious.  He sat on my lap, Mikey's lap.....we had the child-life specialist come and she showed Connor some pictures of his Anesthesiologist, the room he'd be going to, the hallway, the IV, a mask, he was assured that Joe and Curdis and even his blanket could come along.  Within minutes we saw his surgeon.  We were asked if we had questions and for Connor (and even us, really), we figured question would really be afterwards.  ......let me just reiterate, our surgeon is the best.  I'm not even kidding.  It's public record.  He's not only the best paid...he's the best there.  ....anywho, he left and within minutes the Anesthesiologist came.  She rocked.  She had a son Connor's age and she asked about any loose teeth and they bonded a minute.  We then gave hugs and kisses and Connor chose to be rolled out in the bed he was in.  .....we confused our goodbye point a few times, so Connor got lots of love before he was officially out of our care.

Things here that I don't fully understand were corrected.  He'll breathe better, he'll heal faster than an adult, he'll not endure painful things that come if not fixed.  How awesome to be a kid in 2019 with truly gifted doctors.

Most of his issues are internal...but you can kind of see how the top row of teeth are inward, tight and growing towards his center or sort of inward....hard to explain...even harder to try to capture on a picture....and these are baby teeth...those bigger teeth will not be kind here....  Debated posting this because we're that H word again (human) and try to compare it to ourselves or someone we me, surgeries are not performed for fun or vanity around here...this is pre-surgery


He went back a bit after 10:30am or so and we got to see him around 2:30pm.  At one point, his craniofacial dental buy came by to explain what we needed to do at home with Connor's expander....not too long after, the surgeon came to let us know things went great.  .....Really, this is the first surgery that we did look up but didn't allow ourselves to get overwhelmed with the details.  We knew he essentially had his upper jaw cut out, moved and sewn back the way it needed to be.  We know palate and nose things were moved around and that his breathing will improve, along with other very important things we all take for granted because we're human and that's what we do.  

There you go....his thing looks much bigger than this but here's something similar.

Honestly, he was slotted for 110 minutes for surgery (this includes anesthesia time) and we were slightly shocked by his timing but at the same time, Connor's always been slow coming out of his induced naptime.  According to the nurse, he actually did wake up well and he immediately got his stuffed animals and blanket, then pointed that he hurt and had tears come out.  She did her magic and gave him something so by the time we saw him, he was asleep again.  We're glad because poor baby.  This was a lot and how do you really explain all of this in an appropriate way.  We do our best.

Post-surgery....he looked rough but at the same time he was cleaned up well.  Our truest first look wasn't this great but....he was loved on by everyone and that's a BIG something.


Once we got his room, there was mainly sleeping.  He woke up for a bit and they immediately wanted him to swallow his medicines.  The medicines are stronger by stomach though faster by IV. only issue that I don't understand and simply must let go of is that his medicines were taken orally only.  I'm taking issue with this for the next surgery.  Connor always pukes after anesthesia and this time was worse than normal.  I'm going to be blunt and short here.  He puked a ton of blood and I'm convinced he was puking out all of his meds.  There was a point where Connor got extremely upset and I could not calm him down.  He was in pain, scared and totally confused.  This lasted for 20 minutes, possibly 30.  I can do very hard things when I must but this was horrible.  By the time morphine was approved, he had fallen asleep from sheer exhaustion of it all.  I'm not even close to exaggerating here .....if anything, I'm minimizing this.  I am teary around Mikey or close friends but I step up in front of my babies.  I believe I should not put my emotions out there because it can impact how my kiddo feels (and this is in no way has anything to do with how another parent deals with things, it's my way and my way alone..not a philosophy for the world here).........but that night, eventually I was a mess too.  He was asking questions that I could not answer.  He likes to know how many minutes until the medicine works (the nurse said 20 minutes).....and really, his speech right now was the worst, I could hardly understand him.  He asked the time and wanted to know when was 20 minutes.....I told him.....2 minutes after that time, he started crying because the medicine wasn't working......then he asked how many days....I said until the doctor says we can take the contraption out......then he wants to know if he can just pull his teeth out and puts his fingers in there........I'm telling you, it was an awful time. go around, I'll be "that mom".  He won't have surgery until I'm assured this won't happen again.  PERIOD.   
......anywho, we got through the night.  It was messy and awful and sleep was minimum.  I am rarely just weepy....and let me tell you, I was weepy.  I managed to go without the xanax that I keep for emergencies...because really, I didn't want to fall in a deep sleep and not hear Connor needing me.  Part of me should of took it...but then again, I know me and I didn't want to be out of it. ....I'm certain the nurse had his opinions and honestly, we have always had the best nurses but this guy....grrrrrr...I have no doubt he had abilities and I remind myself that what matters are skills but really, this guy sucked with people skills.  I'm going to leave it at that because we got through the night and anesthesia and simply having a surgery isn't exactly a recipie for a great night anyway., we had all male nurses, and they were good....I don't want to give them a bad report.      .......anywho, bad night lasted 12 hours but felt like a million.  Thank God for next days.  The meds started staying, we tried to get Connor to have pudding and he did have a bit of a shake fed through a tube....he's never been great on eating so this was all anticipated.  We had spaghettio's from home but those got stuck in Connor's expander.  ......eventually, we realized the meds were keeping pain at bay, there was no more puking, and we just wanted to go home.  We were allowed and simply told to work on his diet but know that Pediasure would give him what he needed.  We have a bunch of medicine and rinses and the tool to move the expander at night and each morning.  We'll have weekly appointments until the movement is where it needs to be and then it will need to stay put for 4 or so months.  Taking the thing out is supposed to be an easy office visit.  A year or two afterwards, he'll need a surgery for some facial bones.....we'll deal with that then, not now.
That morning after was rough (meet Joe..comforter extrordinaire...Curdis is inevitably behind Joe).

Sawyer got to come the next day and that caused some major healing.  How awesome is that?!

I'm not the selfie kind of woman (especially sans shower or sleep) but hey, look how cute my buddy is?!  His swelling has been uneven but I hear that's perfectly normal.  The next few months, simply taking a nap may cause weird swelling.

I show this because the truth was the game lasted all of about 2 minutes.  Connor was obviously dizzy from it and we were concerned with his face and eyes trying to keep up with the little puck.....he moved on.   BUT, this is an awesome place where there is just about any kind of entertainment/distraction for kids...there is even a separate place for siblings if a parent or patient needs that space...and awesome people around if parents need a break or a patient needs a fun buddy.

This was more his speed but this was kind of tiring too.  

We got home fairly late last night but we were all glad to be home.  Connor chose the couch versus the guest bed.  

The meds are strong and we'll keep them up for a day or 2 more and then hopefully taper off and keep the strongest for sleep.  He'll be on a soft diet for at least 6 weeks and we'll talk to school about maybe having a space to play board games in lieu of recess for a few, but it's a recess reality that it's just a jungle out there.  He's not going to like that so we'll approach that subject another day.

The play is easy and not very long but it's good to see.  We're going to relax our strict xbox rules....still no fortnight but they can play a bit longer.  We're going to try some longer books to encourage naps.

This was a gift from a few months ago and we hadn't really used it but oh my gosh, how awesome that we have this.  So far, we've tried to mix cereal with milk (not total win, but not total loser so we'll try different varieties) and of course, shakes are winners.

We just took these 2 pictures.  He's doing so awesome.  Swelling is different but I don't think it's as bad as they said it would be today.  He's wanting to scratch his face, so I'm thinking that means it's tight.  He also really needs to keep his hands out of his mouth but he has to be reminded a bit more than I wish.....the stitches are dissoluble so hopefully not too much longer.

.....Also, just as an odd add in note, his speech is off.  That thing in his mouth is big and his palate, nose and jaw were all affected by this he can be understood but luckily, he's young.  He's okay with it being cute and he has great friends at school.  He'll have speech therapy at school and if we think he needs something more as time moves on, we'll deal with it as we go.  

.......we've had so many prayers and well wishes our way.  All I can say is thank you.  Our world (meaning all of us!, you out there and me) can seem harsh and ugly sometimes....then you say we're having a rough moment and people care...that's not a small thing.    ......we hope this helps someone not be too worried about these things...and to also know the realities ...and possibly help in some way with whatever you have going on.  ☮❤😊

Tuesday, March 27, 2018

A Call to Action...the Local Social

Okay, instead of alluding to issues, this will be a point blank post.  Both boys have stuff currently going on and I don't think I'm crossing that fine mom/child line that I do my best to respect.

Connor's Pierre Robin is a syndrome where many of the kids with this end up with 20 or more surgeries when they're especially affected.  That would be him.  To date, he's at 14. We've had a nice few years mostly problem free, his scars are minimum and his speech is amazing for having been born with literally no cleft palate.  As of lately, swallowing is slowly becoming a problem.  Mostly swallowing meats or anything especially chewy.  Instead of the swallow study that directs massive amounts of radiation towards his head, we're opting to have a feeding evaluation where an expert watches him and sees if he could simply revisit some swallow therapy.  He's also got a smaller upper jaw and a ton of teeth that will cause overcrowding and possible ripping of his upper palate...he's slotted for x-rays and decisions will be made from there.  There is a possibility of him simply using a nighttime head gear...this is what we're hoping for and we won't worry until the day they say otherwise.  Why?  Because this is the card we...he's been dealt.  ...he's also got an umbilical hernia...we simply watch it and as long as there is no major pain or problem it's not going to be touched unless he's slotted for a surgery for something else.  He's also got some crazy old-school stitch from his g-tube repair that somehow has poked out of his stomach and occasionally gets infected...we watch it until the day he'll get that hernia repaired.  He's also got ear drums that are shaped the opposite of the way they're supposed to go but to date, fluid has stayed away and we get him tested every 6 months or wait for him to complain of pain or notice hearing issues.   .......he's a tough kiddo and one day, he's going to really understand how he's a complete, amazing wonder.    .......the school has wanted him tested because of delays but we asked for them to wait a year since really, of course he's had delays.  This past semester of school, he seems to finally have really been picking up learning sounds.

Sawyer has Autism.  He's not high functioning and he's not low functioning.  We're kind of past hating these terms.  He's totally verbal and a bit quirky.  We've had a few school issues and he's had a few personal issues that we were afraid meant he has been regressing.    ......Sawyer has had interventions since he was 2.  ABA therapy, speech, social groups, occupational therapy, a psychologist, now a psychiatrist...... most of it has felt like wasted money.  I'm not even kidding.  The bulk of his therapies have always felt if there was some master autism plan and he just didn't fit in it.

  .........yesterday was a rough day.  We finally got to see what our pediatrician calls the wonderful, triple threat (pediatrician, childhood psychiatrist, plus autism expert) and yes, he was great.  He was also the bastard that made me cry and feel a bit hopeless...and the guy who has me up at 3 ready to take care of business.  I'm going to make my own damn social group for Sawyer.  It'll be called the Local Social.  I'll figure out how to make this a real thing because the group I was guided to yesterday has a wait of 8 to 12 months and boy, it's going to be crazy expensive once we get in there and who knows if it'll even help him....also, the last place we went to...the place that has been THE place...was ridiculous for our needs.  It was a ton of money and for higher functioning kids.  I had to actually ask for a print out of what was actually discussed for an hour and a half because I was thoroughly confused when I'd ask Sawyer what they talked, the group leader would come out letting me know how Sawyer went off topic and didn't seem to understand what they were aiming for.   HMMMMM....

Sawyer has a moderate language disorder.  Two years ago the University of Utah tested him and the bulk of his issues were with expressing himself...or expressive language disorder.  Recently, we went back for the same testing and his issues are showing with both what he understands and what he expresses....or receptive/expressive language disorder.  Any basic idiot that sits and pays attention to Sawyer will know there is something going on ....the experts are needed to pinpoint things....but us basic laypeople can get a clue that he's got social and communication issues.

Sawyer's school year hasn't been all that easy.  He's smart to the point of he can read well for first grade...really well.  He's been pretty good with spelling  and has a great capacity for memorizing.....but........BUT, these language issues very much come into play when he doesn't always recall what he's reading or understand what he's memorizing.  His grades have slowly declined as work has gotten harder and asked more of comprehension in the Language's not really surprising when you take two seconds to think about it. ....Math is also starting to get harder for him.

The great triple threat doctor asked me yesterday if I could ask him one question, what would it be.  After circling subjects, feeling enlightened, feeling puffed up with compliments of my great parenting and doing the best I can....I finally built up the courage to ask when was this going to get easier and was Sawyer going to be just fine by 18.   I over spoke him and said that I've read so much and it seems that it should get easier....he chuckled...actually smiled with a little laugh and asked me what on earth was I reading.    ......ummmm...can you feel the deflation and tears???  He said no, it was highly doubtful that things would get easier.  Sawyer is not necessarily high functioning just because he can talk.  He has anxiety and that tends to get worse the more he misunderstands or feels misunderstood.  He gets incredibly quirky and visibly 'different' when he's anxious...he looks off and walks a bit different and his hands go up....he's either excited or a little fearful when you see this...he sometimes will meow or growl.  Because home is his safe place, he can get incomprehensible and yell if he's really upset.  .......apparently, as you age, people don't just smile that you said something sort of off and slightly 'weird'.  He's of that autism that is totally off socially and his communication skills are perplexing to say the least.  He's not got savant skills (as of yet) and he's not making the more obvious low functioning noises or gestures......he's the middle guy...the one you'll just wonder why he's acting and talking a certain way.  This incredible doctor and kind man said that most kiddos like Sawyer enter a sort of vicious circle of anxieties all based on his communication faults.....communication and socializing sort of go hand in hand.  The kids that get 'easier'...that become more 'typical'....that have a tough time but can integrate....they tend to learn how to communicate and they learn how to be social...... learning these things can become second nature just as if you practice anything day in and day out.  ....but most of these 'higher functioning' kids, do not have a lower capacity for learning.  They tend to have much better communication skills.....and this isn't to say they didn't work like crazy to get there........but the point is, they got there and Sawyer has not.  Sawyer isn't regressing...this is simply his autism.  ....and bluntly, Sawyer's sort of alone, 1st grade!, at recess.  The good doctor said you can learn most of what you need to know just by watching them during recess.  Who knew....

Fortunately for me, deep down, I think I already knew the answers to my burning questions because this past weekend I took to our local community facebook page and asked if anyone was interested in forming a social group this summer due to a personal need and really, the expense.  Surprisingly, or maybe not so, there are already 12 people interested and I'm betting the number goes up.

I was really upset with that doctor yesterday.  I came home and cried like I haven't in a long time.  Checking mail yesterday, a friend sent a gift that really was a well timed blessing...and then we also had a letter saying that our beloved surgeon that's been with Connor from the beginning was leaving Utah to head the Vanderbilt University Cleft/Craniofacial team., can we just say yesterday was rough.  .......Mikey came home and I cried some more.  I don't recall crying when Sawyer was professed as having autism...I suppose because we already knew.  Being told that your baby...and they all become your babies in these not going to fly the coop in the way you think, is a low moment.  ........but thank God, I'm me.  I've got faults aplenty but I tend to not stay down too long.

The great triple threat doctor gave us the number to a place that'll do in-school ABA and also evaluate what's happening at school.  He also gave us a number for a new social group and when I asked him what he thought of me doing my own social group, he gave his blessing and said he felt guilty for not thinking of that himself (his son happens to be a non-verbal child with autism and down syndrome).  He said even if the children do not necessarily stick with the curriculum (that I was given by one of Sawyer's therapist)...the point was to have him socializing. to keep you up, of course our insurance doesn't cover either places he gave us and the social group has an 8-12 month waiting list.  We're not too worried because with a call this morning, I should be able to get letters that'll satisfy insurance and I'm going to get to work on forming my own social group.  Another mother messaged that she was willing to help and I figure I'll call our community 'building' and see if they can offer up a room or two once a week this summer for a few hours.  I can't seem to get it together to write a book but I can maybe do a flyer for a social group...and I like the sound of the Local Social.  We're probably not the only people needing the benefit of something like this.

    .......I'm also going to call our state parent center and finally utilize their services.  I'm thinking Sawyer's IEP (individual education plan) needs looked over with a fine tooth comb and I need to know exactly what he's doing when he's at resource class and if he is getting the services he's entitled to. 

Okay.....that's the end of my's a few pics.  Peace...Love...Joy....always.  Happy almost Easter!

and to add a quick P.S.  ....please don't berate the doctor because his message was conveyed gently and kindly despite that initial chuckle...and it didn't feel hopeless though that was an initial reaction...we know very much what he was saying and we also know Sawyer has crazy amounts of potential.  And for both boys, prayers and well wishes are always welcome.

Connor's gift from the surgical dentist...

Newest member of our family...Lucian...adorable and I don't see him nearly enough.

Sophie, Connor and I being bums and taking a selfie.

Typical pre-appointment for something scene.

Sawyer lost his first tooth!!

This was before Sawyer had his university testing.

Sawyer slightly nervous about holding worries, he was surrounded...and on the floor...and Sawyer loves Lucian and gets a bit upset we don't see him more.

Last pic of all of us...we went on the Air Force base to sled a was crazy freezing!!!!!!

Monday, March 12, 2018

A random Day in the life....

This was a random day last week. (in February maybe?!) ........we only show what we want or feel comfortable sharing but man, life has felt stressful lately.  There are things you can't share because others wouldn't appreciate that and I totally get that.  ......I've got family I miss, family I worry about due to illnesses, those I worry about because they seem unreachable, there are friends going through such tough times, a friend's son having a crazy, unexplainable illness, my own feelings of having put everyone else first for years upon sons having things going becoming a father soon and stressing about so much, an autistic son that has unexplainably started going backwards in areas that seem to private to put in the world right now...another son that has the school wanting to test him and we feel it must simply wait a year (after conversing about medical needs he has already, the school understood and even agreed that he's only tests can wait).    ........ugh, but we face the days and row our boat.  Each day is going to have that sun rise and fall regardless of any worries, so we might as well focus on the beauty and the good.  I can not explain my beliefs so simply but I believe in prayer and giving things to I do this.  I do it's basically my meditation of being present and eeking out the good.   .......and when I'm rowing, I really do try to see the beauty and sort of let go anything that I can't change.   ..............anywho, enough lamenting.

My Soybean up at an ungodly hour!!!....sort of like his Mama

My Con-con woke up waaaay too early.

A little breakfast.....we got that table a few months ago.  I'm giving the other table that I had to Tristan.  I have had my older table since he was a baby and it feels right giving it to him when he's starting his own family.  .......we have paint and staining plans for this table that expands if we need to.

We have an alarm system that works for us.  This little guy used to be awful about arguing or getting upset if his morning was disrupted by me needing him to get dressed or brush his teeth or put on shoes.  BUT...we discovered an app with multiple programable alarms and once they go off, the boys know it's time to do something.  Somehow, this is magic for us.  We even use our Alexa (Amazon Echo) and Hey Google (google home) for alarms at random (game time, tv time, etc.).

Connor and his Christmas Cat/gift...Wheezie.  

Sawyer and his Christmas cat/gift Sophie.

random, outside......we're up EARLY around here.

Cool dishes from the hubby...  I ridiculously love nice bowls and dishes.

Connor and Sophie.

Random Connor sighting...I'm most likely finishing up something private and not really getting to be private!  😉

I'm trying to give a hoot about a little makeup now that I'm past a certain natural glow....

Where is Sawyer?....random floor play....we try to limit show watching...though we could limit even more.

This guy could eat spaghetti-o's 24/7....and we remind him to actually chew because he thinks you just swallow them like a drink.

Random message from a book I probably am reading...empty amazon box...God bless recycling because it's a problem....

I should sell these books....Usborne really does have awesome kids books.

Awesome picture of my Soybean.  He's such a photogenic little guy.

We broke down and bought an x-box...for social, educational reasons we tell ourselves.  We only have minecraft and so far, it's enough.

Good night, sweet heart.

Go to bed, sweetheart....

Tuesday, January 23, 2018

2017 photo dump

I haven't blogged in forever.....there hasn't been any rhyme or reason to it....I changed the name....started to think of blogging about various subjects....and basically, stalled.  No reason...simply didn't do it.  Now, I figure it's still January of 2018, so I'll start.  I'm going to simply blog for in making myself take pictures, write words ...then post.  That's it.  .........BUT, I do consider this a mild form of scrapbooking so will throw out pics from last year for posterity's sake.

Originally, the plan was waaaaay more pictures but for what's important's sake......this will do.  It was an awesome year of travels, new things, seeing family and prioritizing our own family.  This year, I'm wanting to add more in here to keep up with what we're doing.....and really, I'm doing it for purely selfish reasons.  I have a tendency to drop into depressive states despite all that's good in my life so this is a good way to chronicle and share with myself...and share with anyone else who happens to jump in here. to a great 2018.