25 Days of Lillian (HAPPY BIRTHDAY LILLIAN) Day 25

Happy Birthday to Lillian.  I hope you've enjoyed these "25 Days of Lillian posts".

I wanted to do a little photo montage of her each year on her birthday, alas, it's taking me way too long to find pictures, which is pitiful considering the digital age we live in.  Anywho...

She enjoyed coming down to her peppa pig decorations.  There were tiny gasps and giggles as she saw each thing. (thanks again friend!)

Tonight we will celebrate by going to Taco Bell as that is what the princess has requested.

It has been made known to me, my sneaky daughters took it upon themselves to plan a birthday party for her on Sunday afternoon and while we are way to busy with other things, we will pause and take the time to gather with a few friends and family to really celebrate her.

Thank you again for the cards and gifts arriving by mail, Lillian has enjoyed that immensely and truth be told, we all have.

I cherish each of my children, but that goes to a whole new level when you face losing one.  We will celebrate and be grateful because you just never know what tomorrow holds.

Happy ninth birthday, my angel.  I love you more than my heart can tell.

25 Days of Lillian ( Day 24)

Hey everybody, thanks for praying, I know you were because I woke up feeling so much more refreshed today.  I've still cried today, but hey, it only lasted a few moments this time :)

ONE MORE DAY!!!  How have almost 9 years come and gone?  It hasn't passed by quickly by any means, but at the same time it doesn't really seem possible.

Today, a sweet friend came by and dropped off supplies for a little party set up for her tomorrow morning....I'm so overwhelmed with grattitude.  While I know Lillian won't really know the difference, I know the difference.

Her life is a miracle and I don't want the day tlo pass without celebration and thanks to Maggie, we will have a special morning with her.

This is not an easy walk and there are hard days, BUT we are BLESSED be-yond measure.

I'm grateful for you friends! I'm grateful for you family! I'm grateful for those who have been there that have never been made known.  Your prayers and generosity mean more than you will ever know.

25 Days of Lillian ( day 23) Things that happen..a day in the life

Well, today has been a bad day in the world of being a special needs mom.  First off, two nights ago in my exhausted stupor, I got up in my sleep and turned off Lillian's feeding. She did not receive over half her volume of nutrition because I for whatever reason turned it off.  Talk about your parent fail.  While I try to let those things go because it happened and I can't do a thing about it, it just feels really, really, bad.

Today, I found myself totally alone.  Noone to call for help...alone and in a pickle.  It was early morning and Ezekiel had been up most of the night wailing complaining of neck pain.  To the point that I was crying because I was becoming scared by what was going on.  At one point, I was sitting in the bed, holding him like a baby while he cried.  At some point Lillian needed attention, breathing treatments, restroom assistance...I was stuck between to babies who both needed me and one of them was going to suffer.  It's not the same when you are dealing with "normal" kids.  A normal 9 year old can help themselves.  Be self sufficient, mine cannot.

I had to make a rush doctor appointment and go in there unshowered and unkempt, because I only had time to get Lillian's needs taken care of in order to be able to care for Ezekiel's.

I can't just run out my door.  I have a feeding that has to be prepared and go.

It's been a bad day for me, as a mom.

Ezekiel needed an xray and looks to have some type of muscle strain.  He's had a rough rough day.

It's been hard day and I'm feeling even more disappointed that I can't do something special for her birthday because we are just too buried in everything else.  Lillian, Ezekiel and I are also try to recoup from sickness.
 bad day, just keepin it real people.

25 Days of Lillian (day22) Her immunity disorder explained as best as I can

If you previously read my post on Lillian's medical issues, I listed ciliary dyskinesia as her immune disorder.  Basically, the pulmonologist had a suspicion that this was why Lillian was getting ill so frequently and after  biopsies in her nose, sinuses, and lungs it was confirmed.

We have these tiny, tiny hairs in all those cavities that move mucous up and out of our bodies.  That's part of how we stay healthy.  Lillian's happen to be missing and what is present does not function.  This means that all bacteria remains in those areas and her body isn't able to get rid of them.

They have her on respiratory treatments that are the same protocol they use for CF patients.

She gets a nebulized IV antibiotic every other month twice a day.  She has a vest treatment 20  minutes twice a day every day to move junk up to the point where she can cough it out.


Even with all this, Lillian still gets sick.  We have found that minimizing her exposure to large crowds and escpecially groups of kids helps. This actually translates to really not going anywhere much at all..and flu season is even more "bubble time".

I get super stir crazy this time of year and I'm always weighing what I want and even what I need against how it might affect Lillian, because seriously, it's just not worth her getting sick and being hospitalized.

So, there you go...is that clear as mud?  OH- and this is probably  connected to her genetic diagnosis. It's not a primary diagnosis...secondary to her genetics issues more likely.

25 Days of Lillian ( days 20 and 21)

So, I forgot day 20.  Add it my list of accolades.  I'm sick, the two littles are sick, I haven't slept in over a week and I'm tired.  My stress level is off the charts as we have had SO much happening.  So, yep, I forgot and I didn't even realize i forgot until today.  sorry.

  I have been busy packing today or attempting to do so...packing here, unpacking there...ugh!

I'm just going to share some pics of Lillian opening today's cards.  She is thoroughly enjoying this and especially likes the singing cards.  Thank you to each and every person who is taking the time to send a card and all the love!!

25 Days of Lillian (day 19) Painting pumpkins

Thank goodness for big sisters who buy pumpkins and paint....a happy day!

25 Days of Lillian (day18) A little more medical info

Tube Feedings.  Yeah, let's talk about it. Many people do not realize that Lillian is (for whatever reason) unable or chooses not to swallow most all foods.  She gets three tube feedings through the day and she is on a drip that runs continuously all night.  She has what is called a mic-key button that inflates a balloon inside her stomach, which holds it in place. We have a feeding bag that runs into a feeding pump and feeding tube that attaches to the button and voila...she gets fed.  She does drink pretty good, but not lots of anything and always something with carbonation.  I think it has to do with the way she feels it in her mouth.

We have to carry a replacement button, special syringe, extra bag, ky jelly,  and extension tubings at all times, because yes, her tube gets ripped out of her gut and it is generally very unpleasant for her.  We also have to change it about every other month or when it starts leaking and won't stay inflated. It's not a difficult process except when she is upset she is tense which makes it hard to get the tube reinserted.  

I don't think I ever thought she'd still be tube fed by the age of nine.  Keeping her healthy and just trying to keep food in her gut always took precedence because she had such terrible feeding intolerance.

She's on a metabolic formula and her feeding supplies cost close to three thousand dollars per month. Praise God for insurance.

I'm currently looking into real food tube feedings, I think it would be so much better for her to be getting real food and not a formula based diet.  I think it would help with her bowel problems as well.
When we do eat, we always make her a plate, but she tends to chew up and spit out anything she puts in her mouth.

She chokes quite often on most solids she chews even though she chews it up very thoroughly.

I'm grateful we have the ability to still provide her nutrition thru feedings, but there is a flip side to it as well.  The pumps can be very touchy and tubing gets kinked and ports get popped open...all of which causes mess and stress.  My alarm every morning for the last eight years is the howling beep of a feeding pump signaling it's finished.  It can, on some days, be my total undoing.  Just being honest.  I mean I never really thought we'd still be here and I'd still be mixing formula every single day at age 9.

A sweet friend once reminded me that I also thought she'd never be potty trained. So, when I'm discouraged or when the pump is driving me IN.SANE.  I remember her words.

It sounds strange, but I still get an extreme sense of amazed wonder and gratitude when Ezekiel eats.  AND, just to tell you how crazy I am, I've actually chased him around several times, trying to hook him up to HER feeding.....oh mercy, what a journey.