Thursday, April 13, 2017

PT, Vitamix, Dentist...

Lillian continues to struggle with the stretching I'm doing with her.  The PT contacted the brace guy and asked him to increase the height on the SMO's we are getting for her.  She also asked me today if I've ever thought of getting her botox injections.  Well, let me tell you right now that scares the you know what out of me.  I know lots of kids get them...but man that is just scary stuff.  S.C.A.R.Y. to me. Going to have to consult her PED and pray on that an awful lot.  We have an appointment with him Monday to discuss how to progress with her real food tube feedings.  She's getting a half pack twice a day and she actually tolerated a whole package at once yesterday because we had a timing issue with another dental appointment.  So, first...the day after I posted my last update, a sweet family contacted me and offered to provide a Vitamix for Lillian when we got to the point of needing one.  Which brought me to complete tears (i know, hide your shock face) so so so incredibly grateful.  This past Sunday I came home to find a very long time friend of mine had, unbeknownst to us, dropped off a new certified reconditioned Vitamix to us.  I'm telling you friends, God is good good good.  He didn't give us one, but TWO vitamixes...that's how I see it anyway.  Really, I'm at a loss for words to describe the generosity that continues to pour out on us from others.

Second, Lillian had her fourth dental appointment and did relatively better.  She only cried through about half the the exam.  I mean she was still highly anxious and trying to scoot away from the hygienist (it's funny how she can move herself down a table so quick), but better than the past. Her appointment at Riley is in a couple weeks for her consult for fillings.

Still trying to find my footing in getting a new routine going on in the house.  Feels like I'm just keeping my head above the waters.  That is life though, isn't it?  Ebb and flow.  

Thursday, April 6, 2017

I am...

overwhelmed, a bit exhausted...and struggling a bit mentally.  Adding three days of therapy a week to my schedule has been all of the above.  Not to mention, finally getting her dental appointment scheduled, which happens to be at Riley due to insurance/financial reasons.  She has also had an appointment for SMO's  to be worn in her shoes every day.  Adding stretches two to three times a day and just trying to find a new routine in keeping the house in order.  Which I haven't .  Have NOT.  I feel like I'm constantly behind and I am.  Then, going to therapy and being told how tight her muscles are and what is lacking.  It's brain over load.  It's heart hurting.  It's wondering, can these issues be corrected and what will happen if they can't.  Her feet cannot, we already know it will just lend support for her ankles and then just not listening the voice that tells me I've failed when I could have done better but I don't really know.  Her health has been so frail over the totality of her life and that has been the priority.  It's a lot.  Pushing aside the thought of all the exposure she is now getting with being around people.  

The RFB feedings are going well, she's only getting half a pouch once a day. Our DME provider doesn't carry them and the only place in Indiana that does is IU home care which we just quit three months ago and I have no intention of using them again. Irony, evil karma...kinda feels like the latter. It is difficult to push the feedings through the tube, like I know I'm building some muscles.  Just the thought of trying to undertake a blenderized diet on my own is daunting, but as we progress with giving her more, affordability of those pouches is just not in our budget and neither is a vitamix which is the blender we need, and I've contacted them regarding any programs they might have to help and I got a very vague email back stating a program was going to be available...but that was it. (wow that was a LONG run on sentence) Yesterday found me in tears as I blew out her feeding tube trying to push her RFB in, and trying to get her to swallow the food in her mouth and there are just things I can't physically make her do.  I was so discouraged and feeling like ALL these things we are putting her through are all for naught.

Many things to be in prayer for, mostly my sanity.  The Lord is my strength...and I know my feet would not hit the floor daily were it not for Him.

I am just continuing to thank God for the blessing He pours out on us.  He is good.  Our circumstances just aren't always.  Have a look at our beauty as she models a new dress she found today.  I was crying the other day and she came and put her arms around me the best she could and was just pouring out her comfort on me...precious...there are times she's so in tune to me and I realize the Lord is just reminding me of His goodness.  Be blessed.  Hug your is precious and precarious. Soak up their voices and their's easy to take things for granted.

Saturday, April 1, 2017

Real food???

This happened today.  I had ordered these real food blends off their website.  Our insurance would likely cover them, however, our DME provider does not carry them.  Maybe I need to make another call Monday.  Anyway, it's pricey.  I only bought the sample pack and this is what we received.  Today she got her first bolus feeding and that is all we are doing.  Slow and steady.

We also got this on Thursday night.  Praise the Lord we were able to get financing with a reasonable rate...better than I anticipated anyway.  Nervous, though, as we have not had any debt in over ten years.  2016 Chrysler Town and Country.  I feel so blessed.  We have not owned a vehicle this new in over 20 years.

A sweet friend from my church dropped in on us a couple days ago and gave me this precious.  So humbling.

It's been a busy busy busy since Lillian resumed therapy.  Monday we actually have an appointment to get her seen for orthotics.  Fun never ends.  Tee hee.

I just finished making 18 breakfast sandwiches, 4 little turkey meatloaves, 1lb of turkey taco meat, packaging and freezing it all.  Busy day.

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'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 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 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.