Monday, November 28, 2016

What a delightful, joyous day!

I think this might be the most exciting birthday Lillian has ever had.  She truly enjoyed herself.  Yes, we had an enormous cake...and yes it is store bought.  Every time we visit Sam's club she goes right to the cake section and oohs and ahhs over the cakes and picks out the same cake every time that she wants me to we bought her a cake.  We were expecting a couple friends and family that did not show up...but hey, a special girl deserves a giant cake!

I don't mind saying, and hold your breath because I know it's hard to believe, as I gave thanks for our lunch of "noodies" (picked by the birthday girl) I started to cry as I gave thanks for her too.  Someone said, why are you crying and I said, through tears, because I'm happy. (with a most hideous cry smile I'm sure, as I'm not one of those pretty criers...ahem, I digress)

I truly felt joyous.  I felt a deep stirring in my soul of what I can only describe as joy.

So, here's 10 things I'm thankful for

1.  I'm thankful for 10 years to celebrate
2.  hard days that remind me to be grateful for the good ones
3.  family that loves our girl
4.  friends who pour into her life and ours and are family now, too
5. daughters that cherish and love a little sister that made their lives a  harder, yet they don't view anything as lost
6.  strength when my own is gone
7.  the chorus of voices singing happy birthday
8. prayer warriors standing in the gap for Lillian and our family.
9. the ability to care for Lillian
10. God who is faithful.Always.

See these pictures?  Joy, pure joy.  Keep praying, prayer warriors, continue to stand in the gap.  You are a part of our journey too.

Happy first decade my sweet girl, I love you so much and the joy you fill me with is immeasruable.  I look forward to the next decade with you, Love Mommy.

Sunday, November 20, 2016

Birthday Countdown five days until 10 years!

Sorry I missed a day, life happened here in the Halcomb household.  I'm sure you get it.  As of today, I'm no longer going to recall Lillian's previous years.  I've been writing about her life for almost the entirety of her life (the previous web page I used was taken down so I'm missing all of her first year).

I find myself sad recalling those days.  This has been a hard, hard journey for her, for me, for our family...and most of these years have been filled with fear, heartache, struggle, and unknowns.  There has been joy, love, and laughter too, however, this is always a bittersweet time of year for me personally as it is the start of a life that will never be the same.  If you really are interested in the journey of the past, you are able to go back and read all the way to the beginning of this blog.

This ten year celebration may be the end of my public blogging.  I do love knowing that people are praying for her, for us.  A lot of time, I feel like I'm just saying the same things over and over again.  Maybe all that just needs to be private for me after this point.
Anyway,  I'm going to finish the countdown this week with daily pictures.  Her tenth birthday celebration blog, may well be my last.  Thanks for reading, thanks for praying.  Continue to hold her there.
Here are some photos from today of Lillian holding her baby doll Bethany and Grandma gave her as an early birthday present.

Friday, November 18, 2016

Ten Days to TEN years birthday Countdown...year 4, 7 days to go!

The big stuff going on this year was Lillian's holey neck.  They had removed the trach and the hole was supposed to close on its own, but really, I just don't believe that happens.  Not for someone who's had an open hole there for three years.  So, Lillian had multiple surgical closures that just didn't hold up.  When we went in the third time for another revision, I was devastated when the ENT came out with pictures and explained that we may have to reinsert the trach tube.  Seriously, I just broke down right there in the packed full waiting room.  I remember my mom and two of our ministers were standing there with me and I think they all were holding back tears as was so so devastating.  Thankfully, we witnessed a miracle when we went back a month later to see if that was really going to happen and whatever the obstruction was had gone away and that was the final closure she had to have on her neck. By her 4th birthday, she no longer had any type of hole in her neck.

Lillian continued to be very fragile getting illnesses easily.  Our amazing new pulmonologist had a hunch regarding her constant sickness and performed some biopsies in her lungs and sinuses and we got her immunity disorder diagnosis.  Relief, yet heartbreak as there is no cure.

At the age of three, she started into developmental preschool, which caused me to be a total wreck.  Her home based therapies ceased and we started therapies in outpatient rehab and she got school related therapies in the classroom. She missed quite a bit of school due to sicknesses.

Believe it or not, we were faced with another move prior to Lillian celebrating her 4th birthday.

I'm super tired and having trouble keeping up with details at this, I'm going to leave a picture of Lillian.  We made it through decannulation and throat revision, sleep studies, and even a tiny tornado that hit the property we were living on.

Here's the post from her 4th birthday!

Her daddy bought her this notebook for being so good at the Cardiologist.

Thursday, November 17, 2016

Quick Cardiology Update

Lillian had an appointment with her cardiologist today, a few months earlier than planned.  We had noticed some color changes in her legs and feet with increased activity and it caused concern.  First off, I asked for prayer on facebook because her anxiety is just off the grid...just the mere mention of a doctor appointment throws her in to tears and there seems to be no talking to her.  I was attempting to explain the apppointment to her in hopes of making things easier..but that just doesn't work for her.  It just makes things worse.

We arrived and I put some peace and calming ii essential oil on her wrists and we went in.She started to cry as we were taken into a room but quickly calmed as I had her taking deep breaths (where I placed the oil) and friends, I know, I just know the peace of God was over her.  She got a little upset when we moved on to the next test, but mostly laughed nervously after a few tears and kept asking if he was done and that test went smoothly as well.

The cardiologist told me that her PFO now appeared to be closed and she had a great looking heart.  He said, "her heart history is just that, the doctors fixed her heart and if you didn't know what you were looking for, you might be able to get it by some other doctors"

This is the BEST appointment I've ever experienced with Lillian.  We will, of course, have to continue seeing them every two years to make sure her coarc repair is growing with her body, but friends, I had to hold back the tears as I praised God for such an amazing report.  PRAISE be to GOD almighty!!

The problems she is experiencing will likely continue and we will have to watch her closely for dizziness and faintness when she is more active.

Thank you all for your continued prayers for this little warrior!!

Wednesday, November 16, 2016

Ten days to 10 Years Countdown Year 3 2009---8 more days!

Lillian experiencedher first seizure on Christmas Eve 2008, just a month after her second birthday.

2009 found us spending much of the winter months in and out of the hospital. She had 4 hospitalizations with severe respiratory viruses and pneumonia with a collapsed lung.  These illnesses occurred back to back with 10 day hospital stays every two weeks from end of December 2008 thru April 2009. Each illness found her close to being ventilated again each time and another surgery requiring a chest tube placement.  

Lillian finally met the criteria to have her palate repaired and then the trach could be removed but due to repeat tracheitis the doctors would not move forward with anything.

I could not get support from her pulmonogists and it seemed they didn't mind Lillian getting sick repeatedly and were willing to put her through another possibly devastating winter.  It was at this point that I removed her from the care of our local children's hospital and pursued care in Kentucky.

Lillian underwent her first cleft palate repair.( with new doctors)  What a dreadful surgery that was.  She never does things easy and we found that out rapidly.

That year also found us mourning the death of  my dad's mother.  The same week as the much anticipated palate repair surgery. The funeral was actually the same day as the scheduled surgery.  With my dad's insistence, we continued with the planned surgery.

My two children above Lillian were really suffering in school, but thanks to their awesome teachers, they saw a lot of growth in that school year.  

Lillian also learned to walk shortly after the age of 2.

We now had 4 disciplines coming into our home multiple times a week for various therapies.

With new physicians being added quite quickly, it was just before the age of three, I think, that Lillian's trach came out.

I felt I was barely keeping my head above the waters, but what can you do...sink or swim?  So I kept swimming...sinking just not an option.

We also experienced yet another move.  Pushing us further south than we'd ever thought we'd  move. We had a great deal of struggle as we prepared the home to be habital for Lillian.  We settled in and started treading water with a child who now just had a whole in the neck.

We celebrated THREE!!!

Ten days to 10 years Countdown, Year 2 2008---9 more days!!!

I think the most memorable part of aging from one to two was the flood.  Quite literally, we had to emergency evacuate our home to higher ground.  I had to carry Lillian, trach and all, through waist high deep flood water to get to a safe place.  That was a terrifying walk.  The flood, in turn, caused a need to move immediately from our current home to somewhere new.  More stress. But we got through all of that and settled into a new rental property.

At this point, little had changed for Lillian medically.  During this particular year, I said goodbye permanently to nursing care in our home.  

We were continuing to try to find answers to Lillian's difficulty with constipation and gas.  At this point we also opted to go to the use of a feeding pump due to the continued difficulties with her feeding intolerance.  I was no longer pumping for her and was desperate to try anything that might help her to retain her formula feedings.

As I recall, she was still unable to eat or drink anything by mouth, although we occasionally allowed her to take sips.

Lillian  had learned to sit up barely assisted by age one.  We continued to have home based therapies routinely in our home.  

By the age of two she was no longer on blood pressure medications, prophylactic antibiotics, reglan, or any meds as I recall.  I was sure happy to say goodbye to all those things. 

She was still monitored closely by multiple disciplines of doctors.  Almost every specialist minus neurology.  The appointments never seemed to end.  

That year also found us mourning the death of both my grandfather who had suffered long with illness.

My two children above Lillian were really suffering in school, which was hard.  I just had a break down during my fourth child's parent teacher conference.  

That year, I met one of my people. I was volunteering at the kid's school and met her.  Someone struggling that same but different as us.  She was a teacher at the school and our journeys brought us together and it was lifesaving for me to talk to someone else who got it.  I over heard her conversation to someone else and it turned out we had the same PT working with our girls in our homes. My friend, that teacher, moved away, but she is but a text, email, facebook message  away.  

Life got super intense with Lillian following her second birthday. But hey, year two...we made it.  A second birthday to celebrate and that was joyous!

Tuesday, November 15, 2016

Ten day to TEN YEARS OLD Birthday Countdown!!!

So I thought I'd do a little briefing of Lillian's first year of life.  She was born 11-25-06. We didn't know we were having her when we went to the hospital and we had NO clue the health complications she was about to face.

She was born, blue.  She needed to be bagged to breath.  Quickly, things were not as we expected.

She went on to spend almost two months in the NICU of our local children's hospital.

On December 6th we were given devastating details of her health complications and  a bismal life expectancy.

She got a trach just a few days later,  Open heart surgery 10 days after that and she remained on a vent unitl just days before she was discharged from the hospital and also received a gtube for feeding a couple days before coming home.

That first felt like I'd never had a child before.  This was a whole new ball game. Our home was filled with multiple medical machines and equipment just to keep our daughter alive. It doesn't seem real to me at times when I look back.

We had nursing care in our home at about the four month mark.  That did not end well.  We had multiple disciplines coming in to perform OT/PT/and DT several times a week.

She only had one return visit to the hospital and it was September of that year. She spent roughly 7-10 days in our local hospital after an emergency room visit to our town hospital.  I thought she was dying that night before we went to the ER.

That was her first return home on oxygen which she needed for months thereafter.

We never took her out of the house that first year except to dr appointments and once to church ( which was so stressful I never did it again)

She slept A LOT.  I think she barely weighed more than 13lbs when she was a year old and she's still a tiny tiny girl. I did take her to Sears for one year pictures and cried while the girl tried to show them all to me on the computer.

I could give you more medical details and such, but this is just a snapshot.  One of the most difficult years of my life.

Our lives changed forever that day.  We were told her life would end by the age of one or two but here she is today..( i took this picture just before writing this) fragile, complicated, sweet, and loving...bring it on 10!  We're ready and waiting!!

Thursday, October 13, 2016


I had a bad day yesterday.  I woke up very tired...I don't even know if tired is the right word...just low.  As my thoughts whirled around myself I prayed the Lord would help me turn my focus away from myself.  On a phone call with a friend, I tried to describe to her how I was feeling....and my words disappeared and my tears started to flow. I tried to describe the isolation I sometimes feel...the circumstances we live in and the limitations it brings and the tears just flowed...words are just not adequate to explain.  Few really understand.

I love my children. There is not anything I would not do for them...children if you are reading....there is NOTHING I would not DO for you because of my LOVE for you. I LOVE you more than you can understand.

That being does not make life any easier or limitations and isolation not exist.

Here's what I'm told

"what's "normal" anyway"
"what IS healthy?"
"I don't know how you do it"
"you are amazing"
"i admire you"
"no one is guaranteed tomorrow"
"we all make sacrifices"

Here's what I life is not normal.  Not in any realm of what it was.  That's ok.  I would not trade normal for what I have now...but does that make it easy?  No.  Healthy?  That is not my sweet angel.  She is delicate and fragile and it's a constant battle of knowing when should we risk going places and when should we's wondering if she's sleeping in the morning a little late or swallowing down the panic that she may not be breathing and being sort of terrified to go and see.  (totally normal, right>?) I don't know how I do it either.  Me in my strength can not, does not.  Thank God for His strength.  I don't feel amazing or understand being admired, because I'm just a mom loving my girl and doing what is necessary.  My necessary is just on a bigger scale.  Yep, no one is guaranteed tomorrow, but most folks don't look it in the eye every day.  Sacrifice.  Some are much more difficult than others.  It's hard.  Ways in which I never could have imagined but now live daily.

So, in my tears my friend began to pray and as she prayed the tears began to slow and my spirit was comforted.  She didn't know what to say, so she just prayed.

I wish I was eloquent and could write some awe inspiring post that people would read, be touched and feel encouraged... but I'm just me sharing the journey I'm on.

Keep praying for me, friends...keep praying. Do you know why? Because...when I'm feeling low and and alone and all that junk,  I tell myself or the Lord reminds me there are people praying...I just know they must be because I'm still walking this path daily and quite frankly I'm not broken.( or in the looney bin...:) )

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.


Saturday, June 4, 2016

I am not ready.

Tomorrow is graduation day for my second child.  As I visited open houses today for other grads, I became emotional.   As I've been preparing for this day with picture printing, party planning, and gearing up for the week ahead, I find my mind going back.  Like an old school film projector...going back over the years.  All the way back to birth of that amazing young woman we've raised.  And, I'm not ready.

Full of energy, full of will she has pushed me in my parenting skills and just like that I blinked and she's all grown up.

This is also time of pondering the future.  It's bitter sweet in more ways than one.  While I am joyful for the future, it's so hard to let that baby go and fly. No longer under my wings. I'm not ready.

Then my mind looks to the next child who will, before I can catch my breath, be right on her heels and I'll be back here again... not ready.

Then, I look at my Lillian who will always be under my wings and that's just a whole different level of emotions.

I'm not ready...but Rebecca is.  I'll try to let go and continue to put my prayers where my worries are.  In the hands of God.  I'll continue to trust that she is STILL and always under his wings.  So much mightier than mine.

Tomorrow is the end of one journey and the beginning of another, I'm not ready,

our family photos circa 2000. Rebecca just  2 years old.

Tuesday, May 17, 2016


Feeling so discouraged at the's so discouraging to me to realize I spend my entire days more days than not trying to correct inappropiate behaviors.  Of course, these issues are a result of sensory problems. but I'm telling you it's DISCOURAGING. I'm constantly, constantly saying two particular phrases all day, almost every day.

It's the same as when I'm "teaching".  Trying to teach her the same things over and over again that she never seems to grasp.  I'm tired.  I'm just tired and feeling sad and discouraged. There are nights when I just feel like I have nothing left...nothing left to give my husband, my kids or even myself.  exhausting.

Day in the life...

Monday, May 9, 2016

Dr Pulmonary gets a visit

Today we had a routime visit with Lillian's pulmonologist.  All went well.  Her sats were slightly better, but still not that magical 100 I was hoping for she kind of bounced around between 93 and 96.  I did ask him if he felt moving her to a year round warm climate would help her at all and his first response was, "are you moving?" My response was that it is not imminent.  That being said,  we've experienced a lot of untimely death recently and all my mind can think about is how can I improve Lillian's quality of life....we are, for the most part, house bound...and I thought a warm climate year round would at least offer the ability to be outside daily more often.  I still think it's a worth while thought.  Health wise, probably wouldn't matter much.  Initially, we would see improvement, but that would not likely continue.  He did recommend a dry heat climate if we actually did move.  Anyway.....I do find if she is off her pulmicort even one day she starts to cough immediately.  She absolutely needs that daily steroid.  It's kind of scary.  OH, OH, OHHHH, the biggest news, she weighed in at.....get ready now....a whopping 41 pounds.  I swear I never thought this tiny girl would break the 30's.  woo to the hoo.  I mean, it doesn't put her on any charts or anything, but hey, I'll take it!

I have been able to increase the rate of her feedings, almost getting her feeds in in about thirty minutes.  Maybe more like 40 but that's a big jump from an hour.

I think that's about it for today.  Kids are about to come home and I need to get on to making dinner.

Here's our doctor's office selfie.

Tuesday, April 26, 2016

Acceptance doesn't always mean painless

Lillian is doing very well currently.  She is on her month of gentamycin nebs right now and I have continued to keep her on albuterol once a day since her last asthma event.  I give it prior to her pulmicort which helps to open the airways to allow the steroid to go as deep as possible.

We recently had a Chic-fil-a open in a nearby town and it is so much closer than any other CFA all the others were at least an hour away and this new one is about 25-30 minutes.  Well, I had errands to run and I thought I would take the little kids inside and eat.  I don't often do this on my own because it's just a lot to handle.  It's like having twins.  seriously.  two toddlers.  As we walked in Ezekiel just kept right on walking before I could get a hold on him and Lillian just went right on behind him. (mind you it was pouring rain outside and I'm carrying a diaper bag and feeding bag and my purse) I got them gathered up and we waited in line all the while me explaining that we just don't walk away from Mommy.  Anyway, we discovered prior to ordering a friend from church was there as well and we immediately chose to eat together.  As I attempted to wrangle a high chair (which an employee kindly fetched for me) I began to remember why I don't take the kids places alone.  That friend I mentioned, well she was just a God send...and I mean for real a GOD send.  Various issues took place requiring me to leave the table a few times and thanks to her I was able to do so without dragging both kids along.  I kept thinking to myself, as I was feeling frazzled, what would I do if she wasn't there and how much more difficult it would have been.

We did have a good visit and chatted and enjoyed each other's company, but parts of our conversation reminded me of the "abnormalcy" of my family life.  I think, in a different world, we would have sat there, our kids would have gone off to the indoor playground and it would have been different.  We would have planned an outing at another location she mentioned and we would have done that and enjoyed another time of fellowship together. But, that outing is likely never to happen.

 As I drove home, my mind began to ponder on how badly I want Lillian to be able to enjoy the things that her siblings did and what every other child does.  We know, though, through these last years and have learned that those moments are fun, but in the end always detrimental to her health.  Honestly, on the drive to the restaurant I was thinking, I should let Lillian play on the wouldn't heart wants that, but my brain knows better.

I guess what I'm getting at is I accept our life the way it is, yet there is still pain.  There is a yearning for her to have "normal" experiences.  Maybe I can't even explain it unless you experience it yourself. Then I have to fight the urge to not feel so lonely or awkward.  It's craziness I tell you.  Just crazy.  So I pray and accept that that pain may always exist somewhere deep inside and i choose to be grateful that she is still here and thankful for friends that God puts in my path.

Monday, January 4, 2016

A pulmonary update and then some.

Lillian had a routine pulmonary visit today.  Her sats were only 95.  Now I know that isn't a terrible number, but she used to always sat 100. He said anything 93 and below is not good...that's not too far off, know what I mean? She has been in the midst of a significant asthma flare up for the last month and a half, so maybe that's the culprit, but the Momma sure would love to see 100 again.  He also upped her pulmicort and gentamycin for the next two weeks in hopes of knocking down the asthma flare.

We have made a pretty good transition with the move.  The kids are doing well sleeping in their room but the don't sleep through the night and I think that's what may be contributing to Lillian not being too healthy.  Along with the fact that her brother doesn't think she should be sleeping if he is awake.  

Life seems to be settling down, now that holidays have passed and the house is almost totally unpacked.

I have been on the search for a pair of high boots for Lillian because she L.O.V.E. loves the maxi skirts.  I found one pair before her birthday but they were fifty bucks. Luckily, while shopping with Isabelle for her 16th birthday, I came across a cute pair for 20 dollars and Papa's birthday money bought Lillian her boots.

This is a picture of her in the office after her visit with the dr today/