Tuesday, May 30, 2017

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!!

Sunday, April 30, 2017

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...

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 babies...life is precious and precarious. Soak up their voices and their abilities...it'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 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.

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.