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'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. 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 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....

Saturday, August 20, 2016

New Seasons

Boy, this life of mine just keep shifting and it's a lot to adjust to.  Wednesday, we took daughter number 2 to college.  Matt planned to take thursday and friday off, which turned out to be a very wise decision...more on that later. Anyway, this trip was so much easier then when we took daughter number one.  We had no babies/toddlers with us which meant fewer stops and less drama.  (when we took Bethany, Ezekiel was a baby, hated the car seat, and was breast feeding, did not make for a fun trip) The down side to not having babies, less distraction.  So, I cried a bit on the way there and cried a lot on the way home.  It's that last hug...breaks me.  As I felt her hair blow across my face, I'm wondering how in the world did her life go by so quickly.  My mind is transported to her birth and the last 18 years of her life.  I know, this is how it should be.  I am proud that she is where she is but it does break my tender heart at times.  That being said, I woke up that morning with searing pain in my the time we arrived home not only was I full blown miserable, Matt was also running a fever and aching all over.  These last three days have left us sick, in bed, doing the bare minimum to get through each day.  Today, daughter number one left to head back to school and it is strangely quieter here as we all adjust to less in the house.  It's funny, Lillian and Ezekiel don't seem to notice a difference, but Isabelle and Madeline are missing their sisters.  I pray tomorrow leaves us both feeling much better and that the littles don't get sick/sicker than they are.  Ezekiel has swollen lymph nodes all up his neck and head and Lillian has been coughing and dripping since Monday I think.

Thursday, August 4, 2016

Graduation, Summer, and a New Year....

We got through another graduation, now we just have to get through another college drop off...UGH...not looking forward to that.  Summer seems to have flown by and I didn't do ANY of the things I wanted to do.  I wanted to go do things with my kids...take them on day trips...even just to the beach. With a spouse that works ALL the time and band commitments and teenagers wtih jobs, my great ideas remain just that...ideas. Oh and let's not forget vehicle break downs, financial limitations, OH and this very special girl of's just not easy.

I'm enjoying, as always, all the back to school pictures and it seems SO many of my friends have children going into the same grade Lillian is and the underlying sadness is there.  There is a sadness watching your child fall further and further behind.  I've mentiond it before.  I don't dwell on it..but it is a fact.  Recently, I attended an open house for a family member and she has a daughter that is a little younger than Lillian.  It floored me to see how much of a young lady she has turned into.  While Lillian has grown, thank the Lord, she still very much looks and behaves like a young child.  Seeing my cousin's little girl or rather very grown up girl, hurt my soul in a deep place.

I also had the pleasure of meeting, in person, a friend whose daughter had some similar medical issues as Lillian and it was wonderful to hug her and talk with her and see her little girl.)( her entire family is beautiful as well)  What a sweet personality and precious grin.  She shared some of her journey with blenderized diets and it has spurred me to step out of my fear zone and give it a go.  

In other news, our dog of 12 years died, pretty unexpectedly a couple of weeks ago and it has broken my heart.  She was my dog and she was a part of my every day.  I still see her and hear her and think about her as if she is still here.  Lillian did not seem to realize or be affected that she is gone, however, in my grieving, she wasn't able to see mommy so sad. I truly believe she was grieving for me.  So not only was I feeling heart broken, it was so pitiful to see her weeping for me that I just couldn't do it in front of her.  Strange, because she's seen my cry before.  (because anyone who knows me knows I'm a crier..i know you're all thinking it would be impossible for her to have not seen me cry HA!)

Speaking of dogs, we are going to be looking into a service dog for her, perhaps.  I'm really going to be leaning on the folks who train them to decide if it's something Lillian could really benefit from.  More details to come as I know them.

Of course, you know we conquered, I use that term very loosely, her first dental appointment.  Yay rah, can't wait for next month's.  

Lillian's schooling will not change this year...we have actually schooled all through the summer, so really we have never stopped.  I have been discouraged with her seeming lack of progress, BUT, I brought home some write and wipe boards from the dollar spot at target and I handed it to her and said, go write your name.  She came back a little bit later and, people, she had written her name..NO example, no instructions...she just wrote her name.  I'm telling you, the Lord knows just when to send a big blessing.  The fact that she did that burrowed into my depths and left me feeling light and joyful the rest of the night. Now, she has refused to do it since, but hey...I know it surfaced and it can and will again.  The smallest things, friends...just full of grattitude.

I leave you with this, a few weeks ago I had set aside 500.00 I'd been saving to buy school clothes.  The very day I pulled the money from the bank, our vehicle broke down.  That was almost half the amount I had pulled for the clothes and THEN, I realized I was going to have to pay a sizable portion to the school for Madeline entering into high school band. So you get the picture right?  Bye bye clothes money.    The older girls have jobs and I decided well, i could surely muster enough money to get our new highschooler into a few things Two weeks after all this occurred, I got a phone call from a church member, (who by the way knew nothing of what happened) and said she needed to give me something, could she come over.  I said sure.  Short story, she said the Lord had been telling her to give us 500.00 dollars and she did.  I was overwhelmed and crying, of course, like a crazy person.  

God is good, friends.  I know or feel like a lot of what I post here might come across in negative ways, it's how I vent.  There are times when I feel so alone and isolated and even feel far away from the Lord, even though I know He's with me every moment.  But knowing and feeling are two different things.  SO, I hold on to KNOWING and then He shows me HE is.  He always is.  I just want to be faithful and give honor and glory to him.  So, if you're reaidng sometime my words and wonder how does she do it?  My's not my own.  

Tuesday, August 2, 2016

First dentist appointment

Yes, my daughter is almost 10 and she's never been to the dentist.  Judge's ok,  For those not following along, Lillian has had LOTS of negative stimulus to her mouth, multiple surgeries....not to mention ALL her medical problems, dentist was just not at the top of the priority list. Of course, today, looking back I think not a great decision, but hey I'm doing the best I can.

First off, I really liked the dentist, she was very sweet and really wonderful.  Secondly, she was very accomodating to Lillian's needs.  They are allowing us to come in during winter hours on a day when she doesn't see patients so we can avoid germs. Woo hoo for that.  Today, the ONLY thing she was able to accomplish was to count her teeth and let me tell you, it was stressful.  Screaming bloody murder from the time they called her name back.  PS- you wouldn't believe by looking at Lillian how strong she can be when being held down.  When all was said and done I was left trembling myself.

So, we are going to go back next month and see if they can brush her teeth.  There were no real concerns as far as cavities go and she has some overlapping teeth, but she says not to worry about them.

We're home now, I'm still feeling a little ick...I just hate that she is so terrified and I don't even know what to do to help her get past it.  Bleck.  We go back in september for another visit..

Friday, July 1, 2016

How about an update

Be forewarned, this post is going to perhaps sound complain-y...not my's just the day in an day out life I lead.  Is it frusrtrating? yes. Does it reduce me to tears a lot?  Yes.  Do I still have perspective?  Yes.  Is God still good and in control?  YES YES YES.  So, here I go...

Feeding bag drama: about a year ago our homecare company started sending newly designed feeding bags. Almost right out the gate we found that they were defective.  They leaked...A LOT.  A TON actually, ruining the first mattress Matt and I have bought in our marriage.  (which we saved for and paid for a quality mattress and covered with a very expensive mattress protector) Now, mattress protectors don't cover sides of your bed...which is where the leaking lands as well tas the flooring.  I, of course called the HCC and stated the problem...repeatedly I made these calls until their solution was to send us an entirely different pump and bag system...FYI--- did not fly ( and I won't even tell you what they are telling me now in regards to that decision)  In case you aren't following along, Lillian is on a feeding ALL night.  So constant dripping ALL night and if she moves in her sleep, guess what?  the tubing moves so there's an attempt to catch the mess, but you can only do what you can do.  So basically, the homecare company reports the issue to the manufacturer.  Three months ago they start sending the old bags again.  The ones that do NOT leak.  I'm ecsatic.  Last month we got the defective bags again and her bed gets soaked and nasty. just about did me in.  I called, I cried...I asked politely for some it turns out, the maufacturer stopped making the bags and the homecare company sent what was left in stock.  Home care company blames manufacturer, manufacturer blames HCC, and we are left holding the bag, literally, with two runined mattresses.  No accuntability...and us with NO choices.  Now, we are not independently wealthy....we have a budget we follow and stick to it for the most part...I don't budget for new mattresses and we don't ahve the ability just to run out and replace 1500.00 + in new mattresses.  I'm frustrated.  The manufacturer told me to file a claim with my homeowners insurance...and I should have reported this issue sooner.  I DID!  They took my name and number and I have not heard one word back.  3 weeks ago.  I reported all this to the HCC, they say they will make sure someone contacts us.  We pay thousands of dollars for those bags.  Need I say more and when I said that the HCC rep said "well, insurance pays that" HELLO???  WHo is paying the insurance rates???  US.  There are SO many more details in this story, but you get the gist I hope.

It's a vicious circle in my mind.  Rough things happen, we don't have money to fix them, and a whole circle of self loathing starts in my mind.

We have been *trying* to get new glasses for Lillian since February.  Long story short, multiple trips in to look at frames that have been ordered in, finally pick a pair I'm not happy with that are too big for her in every way. Sit crooked on her face because  the anatomy of her ears is very unlevel and over a houndred dollars later plus what insurance pays this is what I'm left with.  I just don't think it should be that hard people.  And it makes me SAD and frustrated and now sitting here in tears.  Our eye doctor is a fantastic guy...but his office operates so poorly...I just don't think I can keep going there.  We've been there for over 11 years. I'm done in.  Done.

The other girls have had a new dentist here in town and as the appointments drew near I foumd myself dreading it. Like, actually feeling anxiety over going. Couldn't figure out why except I think in general, I'm just tired of doctor's offices and the bad experiences or outcomes we have in them.  The appointments did go fine and noone had cavities..HOORAH!

I have found my legs back on my bike at night which does help alleviate some stress. It's good to have friends to ride with most nights as my own thoughts and prayers generally lead to tears which makes it hard to see while mantra, don't cry and ride. HA!

  Our 16 year old is driving and we just had her "heart interest aka teenage boy" to dinner last night.  I'm just not ready for her to date yet.  Time is slipping through my hands.  Two off to college in the fall, two in highschool...*shaking my head*

Lillian is doing well, although today I see she has a bit of a runny nose.  So pray that doesn't manifest into anything.  She and Ezekiel are bossom buddies for the most part, but some days are me putting out lots of fires.  A friend recently gave us a weighted lap belt to see if that will help with some of her sensory issues and it seems to be helping, thank the Lord and Rachel too for lending it.  Am thinking purchasing a blanket woudl be a benefit but something we will need to save for as they are very expensive.

 I think that about wraps things up for now. ( if you  have managed to stay with this rambling update) Life goes on and we are attempting to enjoy the summer.  Hope you are as well.  Wrap your arms around your babies and hold on a little longer. Be thankful for their excellent health and remember, if today is hard,  tomorrow is a gift and not something we are promised. Be blessed.