Monday, March 27, 2017

I'm Back

 It's been almost exactly 4 months since my last update and I've decided I want to write.  I want to come here and share our journey.  It helps me.  It might reach out to someone else.  Who knows, I just know I need to be back here. So, updates...

Lillian had a dreadful bout with a stomach flu about 4 weeks ago which led to an ER visit, a 4lb weight loss, asthma flare,  and a total week of trying to get feeds back on track. Thank the Lord we did not have to admit her. (said flu also took out Dad, Little brother and one big sister)

She resumed speech, occupational, and physical therapy a couple weeks ago and she will be doing those things two to three days a week. After having been in therapy since her third month of life and continuing therapy until she was seven, we've had a three year break and the hope that she is older and more cooperative and able to do more.  I'm really looking forward to new feeding hopes and strengthening her core.

Getting her an appointment to get her fillings for her cavities has proved to be a challenge.  I spent almost three hours on the phone this afternoon trying to find someone, talking to insurance, more doctors, just exhausting...wouldn't think it would be so hard would you?  And, nothing is yet resolved in that regard.

Gosh, seems like there was so much more to say here....

We would ask your prayers as we need to purchase a new vehicle for myself...it's a long story, but we really need something reliable and honestly just newer.  We have been dealing with an issue with my vehicle for some time and we just can't seem to find a mechanic who can fix it.  We don't want to keep pouring money into something that is not fixing the issue...not to mention we rolled the passenger window down and it jumped the track for whatever reason...the heating and air is now not working properly...as in blowing hot air out of one side and cold out the other a vice versa.  We need air conditioning in summer due to Lillian's lung issues.  We also just need to know when we go somewhere, especially when we are far from home that the car is going to start when it's supposed to .  Keep that in prayer, please.

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 buy...so 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 well....it 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 hour...LOL...so, 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!http://lillian-takeawalkwithme.blogspot.com/2010/11/happy-4th-birthday-my-precious-gift.html

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!