11 years and counting

November 25,2006.  The worst, best day of my life..or is it the best worst day of my life?    Waking up without your baby is one of the worst feelings I can remember.  I was not expecting to have Lillian...let alone the trauma that would ensue after her birth.  I can only partly imagine the harsh reality of losing a child.  I do, however, understand what is like to sit on the brink of it.  More than once and actually, with more than one of my children.

I am SO SO SO very grateful for the life of my girl.  Her life has brought SO much to mine.  We continue to be gifted another year to celebrate, when we were told only to expect one or two.  There have victorious mountains climbed and valleys that have taken us low and, at times, kept me there a while.

We celebrated with some of our family on Thanksgiving since we were all together.  She was showered with love and gifts.  She walks around, delightedly, with all her gifts in bags unloading and loading them as she moves from room to room.  She chose her cake and frosting, though she did not partake any of it. She also chose the "sprinkles" that went on top.


Lillian continues to touch the hearts of others near and far with her sweet smile and gentle spirit.  There are few days that go by without a whisper of gratitude to the Lord.

Thank you, Lord for 11 years and counting.  Thank you for the daily reminder to be grateful in all things.  Thank you for the blessings in good times and bad.  

It is amazing to look back at ALL the wonderful encounters her life has brought to us.

Thank you, friends, for 11 years of prayers, thoughts, kindnesses, encouragement, and blessings.

Happy 11 years and counting to my angel.  

Updates and where have I been

There are so many things to tell, so I will try to keep this brief. I had to go back to my old posts to see where I left off.

Update one: her dental work turned out much more in depth than we were expecting.  We took her in August to have four fillings under general anesthesia in the hospital.  They came out during the surgery and told us they needed to pull one permanent tooth and two additional baby teeth. When we  arrived back to post op, they had actually removed six teeth total.  It was a tough couple days following the surgery, but she is all recovered and her teeth are coming in quickly.

Update two: She gained two more pounds from her last weight check in.  Can I get a woot woot???  So exciting...just brings me to tears.  Real food for the win!!!

Update three: we've had several re-visits for her leg braces.  She has actually experienced some skin break down and all the guy keeps saying is " I've never seen that happen before"....we are not surprised as our Lillian always keeps them on their toes.  He does feel she has outgrown the braces, but we are trying to hold out for another month or so because it is not easy to get these things approved through insurance.

Update four: Her feeding therapy took a big back step due to all the teeth being removed.  Can't practice chewing when you don't have any teeth.  You know, her teeth are poking through, but not enough to balance the big gaps in there. Her PT has improved much since we started and the braces are definitely doing the job of helping give her legs stretch. We will be taking a break from therapies beginning November first to avoid the nasty flu season risks.   Our therapy office moved into the main hospital, so we felt it was in her best interest to pull out for the season.

Update five: Remember those weddings I mentioned, well one of them got moved up and is actually happening this Saturday.  My oldest daughter will be saying "I DO" to a great young man.  My former laptop  kicked the bucket in the midst of creating her wedding shower invitations several months ago.Hence, the lag in posting.

Update six: Today, my two oldest girls and soon to be son, gifted me a new lap top today and I'm beyond grateful.  Just beyond.

There you go, I tried to be brief.  I think I covered the majority of the last few months.  We have had a recent pulmonary visit and that went fine.  OH---and we had her regular dental cleaning a couple weeks ago and let me tell you, friends, she did so great!!  She only shed but one tear and just breezed through like a champ.  Thank you so much for keeping Lillian in your prayers and our family as well.  We are so blessed.

Growing, Botox, Losing, Growing more....Fillings

Ok, is that a crazy title or what?  Trying to grab your attention.  :) Did it work?   Anyway, I've been derelict at posting updates so I'm going to try to make this quick.  The second month we did a weight check, she did  not gain, but she did not lose...however, she grew 3/4 of an inch taller.  We ( the doctor and I) were both pretty amazed.  So, last Friday she went for another check and she lost four ounces but grew another 1/4 inch taller, so now we will check again in two months to make sure we are progressing.

Botox injections were recommended by her PT/OT for her legs and brachial palsy injury in her arm.  The shots are remarkrable successful in loosening tight muscles.  Today we saw a pediatric orthopedist and after xrays and examination by the PA and the doctor, it was quite refreshing to NOT have a doctor trying to push us into something. She felt that shots may cause the opposite effect for her.  She said that Lillian did not fit the typical mold.  Shocking, right?  Nothing new to us, that's for sure.  Personally, I had deep reservations about her having the shots.  I mean, I would do it if I thought it would bring great improvement, but what she said today helped confirm that we didn't need to do this.  If she would have the shots she would need to be put out with general anesthesia.  She also thought that was a greater risk, with Lillian's history, than the benefit of having the shots.  So, no botox.

We would ask your prayers as Lillian is having dental work in August and she will have to be put under for the fillings.

The last few months have been crazy with all of her appointments, but I'm so blessed to be able to do all this with her. I've been a bit discouraged with eating and speech progress....BUT, she did eat a quarter cup of cocoa puffs in milk and she chewed and swallowed it all.

Side note...two of my older girls have gotten engaged and we are in full wedding planning mode.  Prayers for us all appreciated.

Urology checks in and walking a new walk...sort of...

Today we had to be in the Louisville area at eight a.m., yes, I said 8 AM, for a renal ultrasound.  I thought about rescheduling, however, I figured we might as well just get it over with. So up before five and out the door at 6:47.  At least it's summer, otherwise it would likely have been dark.  We had to travel to a different Norton hospital, which is a place we've never been before.  Missed an exit, got lost trying to find actual place we were supposed to be.  Stressful.  By the time we arrived, she was crying because she had to "go" so bad.  Thankfully, they were able to get the bladder ultrasound ( her crying hysterically because she had to go so badly) and the rest of the test was easy.  Then, we arrived for our appointment.  The radiologist hadn't read the report yet, but the NP thought everything looked good.  So, for now, unless she becomes symptomatic, we will just do renal ultrasounds every six months.  She also said it's safe to assume that since she had reflux at age 7 she most likely still does.  If a child hasn't outgrown it by age five or so, they usually don't.  If she starts having issues, as in UTI's then we will have to go back to getting VCUG's and more invasive testing.  Missed an exit on my way home, more stress.  I do not like going new places alone...too hard to navigate.

We also got her braces about a week ago.  She's been doing well with them, although she wants to take them off after she's had them on for a few hours and she's supposed to wear them all the time until she goes to bed.  Good times.

I wanted to share a bit more here, but my brain is scrambled and I keep having to reread everything I type.  Hope I don't sound any crazier than usual.

Here's some pics of her in her braces...she picked out the pattern.

The recently added this play kitchen at therapy and I couldn't get her out of it to take a good picture, but hey, playing is definitely more important!!

How are our feedings going you might ask....

well, Lillian is tolerating them well.  She is completely off of formula and four days ago she startled me coming out of her room.  It is the first time in over 10 years she has been able to get out of bed on her own...with nothing connected to her.  I know it doesn't sound like much, but it was very profound to me.  It felt so momentous.  (didn't cry, but I wanted to) I'm still trying to get used to it.

Now, I've done several different home blends and basically, after researching..I am just using the USDA guidelines for what she should be getting each day minus the dairy plus a lot more good oils.  It is time consuming and i'm still trying to get accustomed to using the vitamix, it is very powerful, but I'm finding I am trying to do too much at once or something.  I've tried very hard to find videos of folks doing a home blended diet, but most of what I've found are just doing a lot less than I am.  I try to do two days worth of meals at at time.Still trying to find a routine...it's not easy and it adds another level of stuff to the day.

The other little glitch, well...that stuff is just down right hard to push through the tube and multiple times we have just exploded it all over the ceiling, walls, all over us...today, fresh out of my shower, I exploded 10 mls and it went on the ceiling and proceeded to plop all into my hair.  As I cleaned up the mess, I became tearful...thinking of the future...our hope is that Lillian will eat by mouth eventually, but it gets me to wondering as we age, how on earth will we keep up with pushing that food through a tube...most often times I have a pounding headache when I'm done because of the effort it takes.  Then, I think, I love her, I will do whatever is necessary for her, but gosh it's just a hard walk.  I realize there are people walking harder roads and there are parents  who have lost.  I have perspective...but it is not easy.

So here's a little picture walk of what these feedings look like...

These are pictures from when we first started, this blow out actually went about eight feet across the kitchen floor and Lillian cried pitifully because it got on her dress...

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.  

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 babies...life is precious and precarious. Soak up their voices and their abilities...it's easy to take things for granted.

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 gift....so 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.

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.