Monday, September 12, 2016

Dr Lungs checks in

Today Lillian had a routine appointment with her Pulmonologist, who we love.  She was relieved to realize he was the doctor we were seeing versus seeing the dentist doctor...tee hee.  Matt took a vacation day and went along with us, which was super nice.  The appointment went well.  We discussed the dental sedation and he gave us a recommendation for the dental school there in Louisville.  They have a pediatric wing.  It reassured me to know he'd taken his own daughter there.  Still hate the thought of sedation, but we really have no choice.  He also stated her wanted her on steroids for three days prior to sedation.  So...on we trod.

  Her appointment went fine.  Her sats were hanging between 95 and 96, oh how I miss you 100.  insert sigh.  Back in 4 months.  We also discussed some discoloration we noticed in her legs with increased activity...something I think we'll need to discuss with the cardiologist.  He didn't seem concerned from a lung standpoint.

Thoughts in my head today from the drive...her birthday is in November .  In roughly 2 1/2 months she will turn 10 YEARS OLD!!!  TEN!!!  A decade.  What a mighty wondrous blessing that brings tears right to my eyes.  I cannot help but think of those first days and years.  And here SHE is...almost 10...i say...10 years later.  I almost cant't stand the anticipation of celebrating her life.  Thank you God.  Thank you, God.
She didn't notice I was taking a picture
She noticed here...LOL
Obligatory selfie while we wait
Ezekiel and Daddy waiting

Wednesday, September 7, 2016

Dental Day #2

Dental day two pretty much mirrored dental day one.  The hygenist very gently brushed her teeth with a regular tooth brush and flossed her gently.  All the while Lillian is screaming and crying...trying to roll out of that chair.  Friends, getting her teeth cleaned is necessary.  I know this.  All of the traumatic things she goes through are necessary.  .Does it make it any easier on my heart to have to hold her down and see her so terrified? NO.  There really aren't words to describe how it feels to see her so terrified of something so non threatening.  If I could explain the look in her eyes to you...it's as if she's left this dimension.  At one point I was just pleading in my head for the calming touch of Jesus to flood over her, because, my words, my soothing, do nothing and it is hard.

To make matters worse, she has a cavity in the back molar, bottom.  The other three molars have what looks to be the beginning of cavities.  These are permanent teeth.  This means fillings which means sedation.

I hate, I HATE sedation.  Have you ever watched your kid be put to sleep?  I have.  It's awful...they look dead.  One of the hardest things I've watched her have done.  So aside from seeing your child look dead, there is risk.  There is risk for "normal" people, but her??  We're in a whole other world when we talk about her.  Lung disease...heart problems, asthma, anesthesia issues....and for anyone thinking conscious sedation, well, that won't work for her.  She doesn't respond to it until the procedure is over.  So sedation, which means going to Kosair.   I cried on my drive home.  Couldn't contain it anymore.

  I was thankful my mom took a half day and kept Ezekiel busy in the waiting room while we were in back.  She also stayed with me and helped me through sam's club and I was grateful.

I got home mentally exhausted.  Was grateful I had frozen some soup and was able to whip up some homemade corn bread and have a relatively easy meal.

Here's a pic this morning of Lillian "multitasking" . We usually do treatments separately, but we were rushed for time to get out the door.  Now, pardon me while I go ruin my 4.5 mile bike ride by finding some chocolate...oh and I'll be eating it too...

Thursday, September 1, 2016

When you rein in your crazy...

Every other week I do my grocery shopping.  I generally go the same place on the same day and it's usually my lunch treat day.  Since my big girls are off to college, I now have noone to help be a set of eyes in the stores.  Going out with Lillian and Ezekiel is a challenge, as I've mentioned before.  So, on our way to our destination, I realize we need to eat lunch and I just happen to be right beside a burger king and decide that's where we're going simple because it's convenient.  Noone is in the restaurant, we go in, get a bathroom break, come out and wait for someone to take our order.  First off, I'm ignored and someone behind us is waited on, ok, fine, whatever, no biggie.  I place my order, Ezekiel in front of me, Lillian beside me.  As I turn to go to the drink machine...a man behind me is removing his hand from Lillian's shoulder and backing away.  I'm telling you, I almost went ballistic.  I shot him a dirty look and headed for the drink machines....ARE YOU KIDDING ME??? DO NOT TOUCH MY KIDS....seriously what is wrong with people???  And that same group of men kept looking at her and waving at her, only when I wasn't watching, and I'm pretty sure one of them took a selfie with her in the background.You know how the little voice gives you the warning, it was a screaming loud voice during this ordeal.  I was totally creeped out.  Afraid to walk out by myself and decided to just wait them out.  They were clearly on their lunch break.

As I'm trying to get drinks, you know burger king has those pick a million drink flavor machines, I am having trouble with the one machine and just cannot manage to keep the screen from flipping, I move down to the other machine to look down and notice Ezekiel is pushing the handicap buttons....I finally get the drinks, get seated, and realize I have no straw.  Seriously...so I go up and a different group of men, clearly on their lunch hour, are up at the drinks and one guy is blocking the straws and I reach around him and he proceeds to tell me how tickled he was and how funny he thought it that I was having such a hard time with my drink predicament.    Hello.  What do you say to that?  I laughed him off and told him I was glad I could entertain him.  Really, I mean do you suppose he might have offered to tell me what was going on rather than watching me struggle?  Common courtesy is dead, I think at times.  Strangest day I've ever experienced in the public.  Or why did he think it would funny to tell me he enjoyed my struggling? Neither group of these men were older people there were my age or a bit younger.

Ironically, the last time I took them by myself was very stressful and this time was no different.

In other news, Lillian is healthy and her next dentist appointment is in a short six days.  Please be in prayer that calmness would flow over her and she can see that this process is not painful .  oh, and pray for me too...it is very anxiety filling to walk through these days and hold her down with brute force.  It's just hard.  You know how most kids grow out of such fears?  Lillian has grown into them and there is no reasoning with her.

I leave you with this, enjoying poppy-cickles in the garage....