Random Things I Love…

Sometimes life throws you for a loop.  Sometimes it seems like it would be easier to just hide under the covers and pretend that the world has stopped moving.  Sometimes it is hard to remember why to keep fighting.  Of course my family and friends make that easier.  A silly dance by Scout or a grin from Truman can turn the whole day around.  But sometimes you just need to remember the little things that make life great.  The random things that you love and make you happy…

Here are a few of mine.

Flannel sheets

The smell of a bonfire

Candy corn

Gilmore Girls

The moment the lights go down before a performance

New underwear

The song “Shoop”

Feeling chilly after a day in the sun

Peanut butter fudge ice cream

Watching someone open a gift you have given

Sitting on my parent’s porch

A perfect avocado

Books by Herman Wouk

Weeping Willows

Sand between my toes

Believing in Santa

Getting a card in the mail

School supplies

Coffee with dessert at a fancy restaurant

Singing at the top of your lungs…with the windows rolled DOWN

There are many more and I could go on and on.  And that is a good thing.  It is a great thing.  Life can throw a lot of garbage in your path but these random things are worth it all.  I know it might sound cheesy but it helps. 

So…your turn!  Share some of the random things you love!

It doesn’t make sense…

I found out last night that a friend of mine had passed away.  He was only 30 years old. 

We were not incredibly close.  In fact we saw each other only on occasion.  We met a few years ago when I was working at the Chamber.  He was a business owner and a member.  I had the opportunity to work with him on a couple of events and we had a few really great conversations.  He was the type of guy who could immediately make anyone feel comfortable.  He was full of ideas and was committed to our community.  I was so impressed that someone so young was already so successful.  He didn’t take himself too seriously though.  We joked about being the next generation of leaders and how to take Lawrence by storm.  And he had a great smile. 

So although we weren’t close, I am overwhelmingly saddened by his passing…in a way that I can’t really explain.

I keep experiencing waves of emotion.  I cannot stop thinking about his wife and what she must be going through.  I picture trying to explain to his 2 year old son that Daddy is gone.  I try to imagine how it is possible that we will not run into each other at an event sometime in the future and catch up with everything that has been going on in our lives.  I don’t know how his parents can breathe or his friends that were with him can function…because this isn’t supposed to happen. 

This isn’t supposed to happen.  A healthy, young, vibrant man with a beautiful family and a wide open future should not have been taken so soon.  It doesn’t make sense.  It is not possible to process.  He wasn’t fighting a long illness or involved an a tragic accident.  What happened was tragic, of course, but this was different…one minute he was here and the next he wasn’t.  And from what I understand he was alone when it happened.  Was he scared?  Did he know what was going on? 

I consider myself a religious person.  I am not a study the bible, go to church every week no matter what, pray at dinner type of Christian--but I do believe.  In fact I have spent more time in prayer during the last couple of years than I have pretty much my entire life.  But his death shakes that core.  Because how does religion explain this man taken before it was time?  I know the standard answers and to be honest—none of them are good enough.

When things like this occur it is natural to want to pull those you love close and thank God that everyone is safe and sound.  It is also natural to be in awe of the complete unknowns that life holds for each one of us.  Maybe awe isn’t the right word.  Fear plays a big role too.  How do we deal with dropping our child off at daycare or sending our family down the road on a trip? 

There are no answers.  There are no words even.  It just doesn’t make sense.

The world was a better place because Gavin was in it and I was lucky to have known him.         

Don’t Cry for Me Argentina…

The other major update about Truman and one that I still don’t know how I feel about came from the eye doctor.  We took Truman in to make sure his vision was OK.  Sometimes balance issues and other delays can be caused by poor vision.  We also realized over a year ago that Tru didn’t cry tears.  He is a happy dude and doesn’t really fuss much anyway but when he did there was never a tear.  His eyes watered when he coughed or had crap coming out of his nose but he never had that big tear slide down his face that makes us all giggle.

The good news was that Truman has perfect vision.

The bad news is that the doctor is 99% sure that he was born without the “response tear gland.” 

Apparently there is a gland above your eye that fills with tears that come from an emotional response.  The gland as it fills has overflow that comes out of the eye and we call tears.  He told us that 2-4% of the population is born without the gland.

He told me that Truman will never cry tears.

Truman will not cry at a sappy movie, on his wedding day or when his child is born. He will never laugh so hard that he cries or put on a show of tears to get away with something.  He won’t cry when someone he loves passes away or breaks his heart.  He will never know how cleansing it can be to just let it all go and sob.  He will never experience the salty taste when his lips are coated with tears during a moment of pure sadness or joy.

I don’t know why this one has been so hard on me.  Maybe because it is so real.  So permanent. 

Because we don’t have a final diagnosis at this point I still can imagine that he is going to “grow out of it.”  It is still very possible that Truman will eventually catch up or at least get close and we will all breathe big sigh of relief.  Part of that is the assumption that he will grown to get married or have a child, have his heart broken and laugh uncontrollably.   But the truth is…we don’t know if that will happen.  At this point so much is unknown so it is much easier to imagine a “normal” life than anything else.

But this was a “never” moment.  And all of it really crashed down for a bit.  It still really hasn’t sunk in.  And I know it sounds a bit crazy to get so upset over such a relatively small thing.  But I come from a family of criers.  We cry at everything.  Dog food commercials, sappy songs, beautiful sunsets, funny stories…we are big with the tears.  I can’t watch Extreme Home Makeover because I literally boo-hoo from beginning to end. 

Will people think he is hard hearted or soulless when they realize they have never seen him cry?  I know it is sexist but I guess it is better that he is a boy since big boys don’t cry and all that crap.  (Don’t tell my Dad that…he is worse than all of us put together!)

Tears are a big deal.  Having to face a big reality is bigger.  Hiding in my closet so I don’t have to deal?  Possible.   

Medical Stuff

After a few weeks Truman is now doing so much better since he had his tonsils and adenoids removed.  It really is incredible to realize just how bad his breathing had become when compared to now.  He doesn’t snore anymore!  I used to be able to listen to him snore through the baby monitor and know that everything was OK.  Now I have to check on him all the time just to make sure!

That is the good part.

The bad part is that he is continuing to have issues with swallowing.  The issue actually goes back to birth.  He struggled as a newborn with nasal reflux.  Basically he would have milk or spit up come out his nose.  His eyes also watered and his nose was always stuffy and he got a lot of infections.  We had a swallow study done and the doctors thought that it was a muscle tone issue.  (See all the other medical posts to learn how much I love hearing THAT as a reason once again!)  Basically they thought that he wasn’t strong enough to swallow everything all the way down to his stomach so some would squeeze back up and come out his nose.  So we started thickening his formula to help weigh it down and make it easier for him to keep it down.  And it worked!

As time went on we slowly decreased the amount of thickening he needed and eventually he stopped needing anything at all.  He did continue to have infections and suddenly his tonsils & adenoids were huge.  So off we go to remove them to make him better.

After his tonsils and adenoids were removed he suddenly started having stuff come out his nose again.  I was trying to feed him some ice cream a few days after his surgery and suddenly two lines of chocolate ice cream started pouring out of his nose.  Freaked out I called the ENT who reassured me and said that it can happen because the soft palette can get stiff after the surgery and to give it a couple of weeks.

Typical doctor—if HE had food coming out of his nose when he ate would he wait a couple of weeks?  I don’t think so.

So we waited.  And waited.  And while it has gotten much better he is still having some problems. 

Adding to the concern we started to recognize that he had lost his consonants since the surgery.  He suddenly wasn’t saying Dada or Baba or any hard consonant any more.  He has all of the vowels the softer front of the mouth consonants but that was it. 

So we called in the Speech Therapist.  She was immediately concerned and I could tell very confused.  She has recommended going back in for another swallow study.  Apparently there is also a nerve that can be hit during this type of surgery that can cause speech issues.  Great. 

We are headed to his neurology follow up tomorrow.  The hope was that he would be walking by this follow up appointment so we could remove the possibility of a few neurologic issues that we still haven’t been able to dismiss.  No such luck.  He is close.  At least everyone tells me that.  He seems like he is ready to go but as soon as he feels the lack of support he immediately crumbles.  Part of me thinks it is confidence.  He is just scared to let go.  (Sound familiar Mommies?)  The other part of me thinks it is a balance issue.

Because he isn’t walking he is officially “delayed” now at almost 19 months.  That delay with the additional small motor skill delays and speech issues all add up to another trip to Genetics and scheduling an MRI to check out his beautiful brain.  Something about grey matter and white matter and what’s the matter. 

My little medical weirdo is happier than ever.  He has also recently discovered how to fight back against his sister or anyone who wants him to do something he isn’t interested in doing.  Trust me, when he whacks you across the face there are  no low muscle tone issues there!  He loves to clean up and then make a mess right away.  And the boy can EAT!  He puts it away.  I swear that he should weigh 40 pounds by now by the way he eats.  And he loves to try new foods.  He really likes to be outside and this cooler weather has helped give him the opportunity to be out much more.  Add a bath and the kid is over the moon.

The saga continues but I am much more calm.  I think.  I sound like I am calmer, right?  Right. 

I Suck

Why can’t I just buckle down and write?

I need to get over myself.  Plain and simple.

I know that I have a billion things going on and that everything seems to happen at once…but is that really an excuse?  Nope. I think the real issue is that I need to get over myself again.  I started this blog as a release and then people started to really read it.  It made me happy that people enjoyed it but then I got nervous.  What if I wrote something that upset someone?  What if someone found out something about me that they thought was horrible?  What if…

The old “perfect” gene kicked in and I started watching myself.  I would sit down to write and unless I could come up with something that was completely readable by the masses I would give up and check Facebook. 

Recent events have re-energized my need to write and my lack of concern about who gives a damn.

So life unplugged here we go.

Tonsils and Adenoids are Outta Here!

Truman’s surgery to remove his tonsils and adenoids was today and everything went very well.  I was shocked by how quickly the whole process was.  We had a few hiccups to start but overall I was really happy with the care we received.

Because of Tru’s muscle weakness issues he has special anesthesia needs.  He cannot use the “gas” that makes you fall asleep before the actual anesthesia is put in the IV.  The gas can cause issues for certain muscle disorders and lead to some pretty scary complications.  So instead of getting to head into surgery, get the gas to go to sleep and then receive his IV he had to get the IV done before he went in.  IV’s on little ones are hard especially if you aren’t used to doing them.  The folks at Children’s Mercy are typically bing, bang, boom and done.  This time not so much.  They did give him some medication to relax him first and my high pain tolerance kiddo didn’t even cry through the entire pin cushion process.  That IV therapist should thank his lucky starts that he is so weirdly able to handle pain!  They also had to prep the room and remove any gas from the lines before he went in so we were running about an hour late after everything. 

We didn’t get to walk him back which was very hard.  I had to hand him over to the nurse which just killed me.  I felt like my whole world just left my arms.  It literally felt like my heart was ripped out of my chest.  He just looked at me and smiled and I sent him off.

The actually surgery only took about 30 minutes.  I was so amazed.  When I got my tonsils out in 4th grade it was major surgery.  I spent 2 nights in the hospital and I remember it being this crazy long procedure and recovery.  His ENT came out and told us it went very smooth.  He commented about the size—BIG.  He is positive that he is going to be able to breathe much better.  Our hope is that with better breathing he will sleep better, grow more and become stronger.

The experience of seeing him in the Recovery Room was horrific.  NOTHING like what we experienced for his muscle biopsy.  When we came back then he was a little fussy but comfortable.  Once he was in my arms he calmed down immediately and I gave him a bottle and he was a happy camper.  Today when I walked in the room a nurse was holding my thrashing baby who was screaming and had blood dripping down his face.  He was not really awake and he was scared and in pain.  The blood turned out to be normal secretions but he just had a lot more than normal.  He was having a really hard time breathing through them and he sounded like he was drowning.  On top of the screams he was unable to control his body and his head was flying all over the place.  I grabbed him out of the nurses arms and he calmed down a bit but he was still very confused and was really struggling to breathe.  They told me he was “much better” than when he first came out.  WTF?  THIS was better??  I cannot imagine what he was like now that he was “better.” 

They added some more pain meds and used a suction tube to help him.  I crawled onto the bed and held him on my chest just like we did every night when he was a baby.  He settled down and slept.  We had to add some oxygen to help him keep his O2 stats.  As long as he had the meds and we could keep him suctioned he was OK.  After about 45 minutes things got much better.  The doctor came in and gave us the all clear.  We removed the oxygen and checked his stats and then we were out the door.  I was simple amazed that I was taking my son home only a few hours after surgery. 

They sent us home with pain meds and Tru was OK at first.  He was sleepy and a bit whiney.  Then it was time to give him a dose of meds and it was horrible.  He screamed and grabbed at his mouth trying to get it out.  Most of it dripped down his chin and the rest was on daddy.  I had no idea how much actually went in but it wasn’t enough to keep the pain down.  He was super fussy and couldn’t get comfortable.  He wouldn’t drink.  Finally he slept and when he woke up it was time for another dose.  Same situation.  This time I think even less actually got in his body.  I called the  nurse and had them order the same meds he took after his muscle biopsy.  When he took that dose it went right in and everything was just great.  Within a few minutes he was smiling, drinking and even stood up and played on the floor for a while.  He then went into a perfect comfortable sleep.  Whew.  What a difference.

He is almost ready for another dose and hopefully this one will be the same.  The next few nights we will need to wake up everything 3-4 hours to give him his pain meds and get him to drink.  If his throat gets dry it makes the pain worse and can cause complications.  I pray that he spends the next few days sleeping and just letting himself heal.  Hopefully after a few weeks we will start to really see some improvement. 

I had a dream the other night that it was the day of Truman’s surgery and I handed him to the nurse.  A little while later the doctor came out and told us that it went well and he was doing amazing.  He couldn’t wait for us to see him.  When I got back into the room he stood up by himself, walked over to me and said “hi mommy!”  I hope that it is a sign that this surgery was the right decision and will help him accomplish all of these milestones.

Thank you to everyone who sent out prayers or good juju.  It was felt and it was powerful.  Keep us in your thoughts a few more days while he heals. 

It is done.  Thank God.

Truman Update

Things have been running along smoothly so of course something had to happen to throw us off course...

Truman has had breathing issues since birth.  Actually for the first few days of his life he made this noise the nurses called "singing" to help himself breathe.  It was cute at first.  It sounded a little bit like a sigh mixed with humming.  After several hours we were all pulling our hair out.  He needed some oxygen but the nurses said it was fairly normal for c-section/early babies and that he would eventually stop.  And he did--thank God!  How horrible that I spent even a little bit of time being annoyed by my newborn?

He also has an incredibly high palette.  He was examined by a couple of doctors to make sure that he didn't have a hidden cleft palette because it was so high.  Part of his low muscle tone caused him to have nasal reflux.  Basically he didn't have the tummy muscle strength to get his milk completely swallowed all the way down to the stomach so part of the fluid would come back up and into his nasal cavity.  Yes--my kiddo spit up thru his nose.  But most of the time it didn't actually come out it just hung around in his sinuses.  We had to add a thickener to his bottles to make the fluid heavier and therefore easier to get all the way down to his tummy.  It was called Simply Thick and it was like adding gel.  It worked pretty well and it cut the issues almost down to nothing.

But as the doctors told us if you shove enough food up your nose eventually you are going to get an infection.  Interesting way to put it but true.  So the poor little guy has fought sinus infections and allergy like symptoms his entire life. 

The reflux also caused him some pretty significant issues with being on his back.  Instead of being strong enough to spit up and get it out of his mouth he would spit up and it would sit in the back of his throat.  We would lay him down on his back to change a diaper and he would suddenly turn blue because he stopped breathing.  The scariest part was that it was silent.  He didn't gag or choke.  He would just stop breathing.  We quickly realized that he wasn't going to be able to be "Back to Sleep" for the SIDS factor.  So our doctors recommended that he sleep on his stomach on our stomachs.  Our breathing would help him from getting into the deep sleep that stomach sleeping can cause and SIDS issues arise.  So Chad and I would switch nights sitting up with him laying on our stomachs while he slept and we "slept."

He also snores like a man.  A large man who has been drinking.  His has woken himself up because he snored so loud.  I didn't think much about it until I realized that snoring is also a symptom of sleep apnea.  My dad had sleep apnea for years and had to wear a special breathing mask at night because he would actually STOP BREATHING.  I started listening closely to his breathing pattern and realized that he did have several apnea episodes and it scared the poo out of me. 

As he has grown his has become stronger and a lot of the reflux issues have gone away.  But he was still constantly congested.  He frequently has a running nose and it would sound horrible.  It was that deep congested sound that you get when you have a horrible cold.  We would suck and suck and suck trying to clean out his sinuses and it never felt like we were getting any where.  Eventually his ENT gave us an electric version of the sucker and we would use this long tube and this machine would suck the boogers out.  Wow.  That was a lot of snot.  It was weirdly satisfying to see it all come out.  Tru wasn't quite as thrilled with the process as we were.

After awhile the sucking didn't seem to be doing anything.  We no longer got that satisfied tube full of boogers and the sound just got worse and worse.  His regular doctor put him on baby Singular thinking it was allergies.  The medicine helped but off and on it would get bad again no matter what we were giving him.  I finally decided to take him back to the ENT to see what we needed to do.

His doctor took one look at his throat and his eyes got big.  Then he looked in his nose and his eyes got even bigger.  He sat down across from me, but his hand on mine and told me that Truman's tonsils are almost touching.  His adenoids are bigger than he has ever seen in a child his age. 

He wasn't congested...he was trying to breathe through a blocked throat and nose.

His doctor was very concerned of course and mommy started to freak out a bit.  He got me settled down and we discussed our options.  He said that he probably wasn't this enlarged all of the time but that an allergy flair was probably causes them to be bigger.  He also said that it was time for his tonsils and adenoids to come out...sooner rather than later.

Our ENT in in Lawrence.  He is the only doctor that we have gone to that is not at Children's Mercy.  So after I left his office I immediately called Children's to get in with an ENT there so we could get his surgery done at the hospital that has been taking care of him since birth.  I just feel safe there.

The phone call didn't go as planned.  The nurse I spoke to told me that it would be October or November before we could get in for an appointment and December or January before we could get in for surgery.  I explained what the doctor had said about his breathing and how he could stop any time.  I also told her about his developmental delays and that we didn't have a diagnosis yet.  I explained the muscle tone weakness and how careful everything has to be because of this issue.  She told me that every mom who calls has a kid who is "special" and it it is common for kids with developmental issues to have ENT problems.  I nicely told her that I didn't give a rats tushy about other people's kids, just my own and then as politely as I could I asked how we could get in sooner because I was afraid he would stop breathing.

Her response?

"Unless he is coding he isn't getting in here before October or November."

WTF? 

I was so shocked and so upset that I hung up the phone.  I drove sobbing to find my mom at her hair appointment and burst into the salon like a crazy person.  Once I was calmed down and my mom could understand the words coming out of my mouth we went to work trying to find out what else we could do.  Our neurology nurse was shocked by what had happened and she promised to get some movement.  She called a little while later and said that she had us placed on a waiting list for August.  Whew.

So we waited.  And waited.  And Truman got worse.  And worse.

And now we can't wait any more.  He is having horrible nights because he is constantly waking up when he stops breathing.  He is always grabbing his head and looking at me like, "Mom DO something!" 

So we are doing something.  Truman is getting his tonsils and adenoids out at LMH next Wednesday.  We are not going to wait for Children's to be available. 

I am terrified.  I know that LMH is a great hospital.  I know my ENT is amazing.  I also know that they don't deal with developmentally delayed, low muscle tone, 18 month old babies every day. 

Our ENT spoke directly to our Neurologist and got information on anesthesia.  He is going to do it at the hospital and not the surgery center. 

I am still terrified.  I don't know if I would be this scared if he was at Children's or not.  I know that I would be nervous.  I was nervous about his surgery that he did have at Children's.  But I also knew that he was surrounded by people who did this all the time and knew little bodies. 

Second surgery...18 months old.