"Life Support"

Fueling Life: Support

"Support"

Is a verb, it requires ACTION!

What action have the supporters in your feeding tube journey done?

Ours have been amazing, and I hope your's have as well.

They are the unsung hero's of our son's medical adventures,

The ones there in the middle of the night, wee hours of the morning for surgery, 

joining us in all the help we need whether it be:

• Financial
• Spiritual
• Emotional
• Physical

They have allowed us to endure bravely the things required of us.

 Like watching and waiting for our son to come out of yet another invasive procedure.

Like my Dad 

Who drove 2 hours to get there the morning of Nico's G-tube/Fundo. 

Because he knew we needed him, It makes me cry remembering exactly how much we needed him.

Or my Mom, 

Who has been there to hug me, call me, challenge me when I was about to lose faith in myself, the doctors, and God. 

Like my Sisters,

One who is willing to take on our older children at a moments notice and we know they will have the time of their life playing with cousins and not worry and wait in a hospital.

The other who took on a challenge and agreed to help me with a crazy book idea,

and did a wonderful job that I won't ever be able to fully pay her back for.

and has been a listening ear since distance makes physical help limiting.

My friend Mary,

Who has allowed me to vent and has taken the most amazing photos of this journey,

and deserves so much recognition.

To the friends and family,

 who promote our book and feeding tube awareness, even when they may be overwhelmed with the topic.

Friends and Family like:

• Nana and Papa
• Becky and Cy
• Aunt Eva
• Pat and Gloria
• Linda 
• Jesse Butler/Publisher
• Tabitha
• Alyssa Flores/Reporter
• Jc Penneys Salon Team
• Mt. Youth homes staff
• Lori
• April and Tyler
• And many more...

It's allowed us to get to where we are with book sales, news segments, and reviews.

These supporters have served as a foundation to prop us up when we were at our lowest or felt defeated by what our son's future may look like.

You all continue to give us the courage to keep looking for answers for Nico.

You are invaluable and we love you all.

How can you support a Tubie Family?

If you know one here is how:

• Learn to use the equipment
• Call them to see how they are doing
• Visit them if possible while in Hospital
• Take their other children, or if you know how to use the equipment then take all
• invite them to your home
• be supportive of raising feeding tube awareness
• Pray, chant, send good vibes whatever your spiritual good will is then focus it on them once in a while.

Even the smallest things are greatly appreciated and make more of an impact on long term health and success than you could know.

We can't and shouldn't do this journey alone.

Thank You For Your Support!

Fueling Life: Positives

Positives?

"How could an adaptive device like a feeding tube ever feel positive?"

This was my thought leaving the hospital with my 15 month old son...

 and since we have seen many, and come to love his tube.

Let's count the blessings of how a feeding tube is fueling Nico's life:

• 10+lbs of weight gain/maintenance
• 5 clothing sizes
• eating food at meal times
• playing and active with his sisters, and cousins
• physically almost caught up with his motor skills
• loving little man
• in a community with amazing supporters and cheerleaders who "get us"
• able to stay hydrated fully
• good medical team
• supportive extended family and friends
• smart
• Happy
• He's "famous" and inspiring others, thanks to "My Belly Has Two Buttons" book

Having a feeding tube is not the end of the world,

and as a parent I want you all to know...

• an invisible illnesses doesn't mean nothing is wrong
• we see doctor's regularly and if he could be without it he would
• we ARE good parents
• he IS happy
• he can play and do things like other kids
• if you want to ask intelligent, non-judgemental questions be my guest, but if you are just asking something to make it seem like you would do a better job with him then don't.
• we would love for you to come hang out with us, feeding tubes aren't "catching"
• it is safe for him to be watched/babysat so if we ask you to then you ARE CAPABLE
• If you want to know how to support us as a family, come learn how to hook him up and give him water...I am happy to show you
• I am NOT wonder woman, you would do just as well in this situation. It takes practice.

Let's not pretend that all parts have been positive, but a lot of the important ones have.

Because of that I will always be proud to say, 

"My son Nico has a Feeding Tube and it saved his life!"

No matter how long he has one.

Fueling Life: Awareness

It's the first day of Feeding Tube Awareness Week 2017!

It's not our first,

 Nico has has his tube over 1 year now...

We are seasoned, 

Refined, 

"comfortable" in this new normal...

One question we still get answered is.

"Why is Nico Tube fed?"

I will share the short version...

Nico was born a healthy, "normal" baby on June 28th, 2014.

Gained pounds every month until around 5-7months old his weight gain stalled at 15.8lbs.

He had never been able to drink from a bottle, but my jobs made it possible to breastfeed him on demand as he slept through the night and he nursed up to 12 times daily until 11 months old.

We thought other than Torticalis and hypotonia which affected his mobility and gross motor skills that he was fine...we were wrong.

we had been down this road before 

and the signs were there that like his sister eating might be a problem.

we brought this up many times and were put off every time saying "he just needs more time".

He began choking on any solid food attempts 

and refusing to let anything in his mouth other than to nurse.

by 11 months he was "classic Failure to Thrive"

but we had networked around the healthcare providers and sought ENT, SLP, and tongue tie support.

He had oral surgery to release a severe posterior tongue tie at that time. 

It helped a little bit with solids, but not at all with liquids from a cup.

we continued to seek help from the speech language pathologist (SLP).

And we thought he was gaining weight,

 and doing fine as he had grown 2 clothes sizes and looked  more plump.

Oct. 14th, 2015 he was admitted to our local hospital for "FTT",

we were not able to leave because he couldn't hydrate himself enough even with continued breastfeeding and his kidneys were in distress.

by halloween that year we had been in hospital almost a month 

and were heading home with our baby...and a feeding tube.

We were scared, exhausted, and no diagnosis in sight.

He has since gained to 29lbs and is in 2 T clothing.

Our "diagnosis'" are:

• FTT
• Dysphagia
• Torticalis
• Sensory processing disorder
• gross motor delay
• hypotonia
• ...and a few others that are minor

We continue to offer drinks in guided amounts as he chokes still and can't drink more than 3ml in succession.

His food skills are that of a 9-12 month old:

• soft
• disolves
• non crunchy
• cut up or mashable
• learning to take his own bites
• chewing enough to swallow safely

We are also still searching and doing tests to finally get a real diagnosis,

and our most recent doctor/specialist told us he will probably have his tube until around 6 years old.

But that is because his suck, swallow, control, reflexes complete around that age.

We may still find another reason for his struggles.

But while we search we are striving to pave the way for his future with this life saving device.

Teaching him,

• hope for a future without his tube
• tolerance and acceptance of other's unique qualities
• to love his body, including his tube 
• that he is "normal" and can do anything other kids can, with the right equipment

So please join us this Feeding Tube Awareness Week in educating the community around you about feeding tubes so that my son and others like him can have a safe and happy world to grow up in.

Nico, Age 2 @ "My Belly Has Two Buttons" book launch Sept. 2016

Heaven needed him more...

While our Nation seems at war over what rights women do or do not have,

 my Twin sister was fighting a battle all her own.

One that ONLY women can do.

This is a true women's right movement,

The choice to be strong when you feel broken, 

and bring a baby forth you know you won't be able to bring home.

Whether you are Pro-choice or Pro-life is not the issue in this instance,

All that matters is a baby's heart stopped beating and a mama who loved him had to make choices.

D&E, induction, or go into labor on your own?

All risky, all a heartbreaking end to pregnancy.

I have always been absolutely proud of the mother my sister is, 

Any child born to her is going to be cared for, healthy and loved beyond measure.

But I do have to say, until this moment I didn't realize I could be MORE proud of her.

2 miscarriages for her, Multiple for our younger sister and one of my own have taught me she is a fountain of reproductive knowledge and support. 

But a stillbirth? 

This is something completely different. 

You knew for sure the heart was beating, body moving, baby growing...

You had made it past the supposed "scary part" where everyone is just counting the weeks until the magic #12...

The part where you can for sure tell friends, family and shout it from the rooftops 

"We are having a baby!"

But to be in an appointment past the magic 12 and there be no heart beating where you knew there was one before? 

That for a mom is the stuff nightmares are made of...

and I believe was in the top pregnancy fears for my sister as I know it was in mine.

Well she has now lived it.

She has handled it with a grace and peace that I have never seen,

She is the one keeping other's strong and consoling them when she should be consoled.

She is proving that when a woman makes a choice she can move mountains.

And that a woman of faith is not a weak and cowed person, 

they are strong because they have hope for the future weather it be here or in heaven.

She has done this all despite being alone with her other children because her husband is away training for a medical alert dog.

When she told him about the loss of their unborn son he wanted to come home.

She told him No, not because he didn't need to be here with her.

But because she knew that watching and waiting for her to deliver this child would be more painful for her whole family, and the dog was needed more.

Yet another choice my strong sister made that impressed me in this tough circumstance.

In the days preceding the news she made the choice to deliver her son WHOLE.

I only say this because at the gestational age he was his body wouldn't have survived a D&E.

She wanted to see her son, Hold him, let him be born with dignity and love.

To use this to heal her broken heart and mend herself. 

Having done what she set out to do,

Be his Mother, 

Something she had dreamed of from the first moment she knew he was coming.

Something she had prepared herself and her other children for with anticipation, now never to be.

My own daughter asked me "why did God take the baby away?", 

My only answer was "Heaven needed this baby more..."

How else do you explain life and death to children?

It's a hard subject for Adults.

I have seen more teachable moments in this circumstance, 

More times where Nicole could have been angry, lashed out, 

but instead she has shown her children a loving example of how to deal with dashed hopes and tough circumstances.

She herself has drawn strength from the compassion of her kids and the child-like faith that they will see their brother in heaven.

SHE knows she delivered a child,

 but to those outside they don't know that... 

• No maternity leave to recover from her 16+ hours of labor, 
• No healing time from the daily marching on of life to grieve, 
• No baby in her arms to distract her from the after pains that leave you exhausted and on edge.
• Back to school just one day after, and back to work at less than a week.

McCleod Eugene was born the day our nation was Marching for Women's rights, and my sister "marched" right along with them in another way, 

her own way. 

She may not look "fine" but she will be.

She said it best...

Nicole:

The day I went in to deliver my child, many other women were marching at capital cities across the United States.

They say they were marching for women's rights, reproductive rights, the right to choose what happens to their bodies and the right to abortion.

My heart on many of those subjects are vastly different than the women who participated, but I was expressing my own reproductive rights, the right to choose what happens to my body, and the right for my son to be born whole, no matter his gestational age or what the medical community considers him. 

 The point is that we have rights as women. Some of us choose to stick up for the opposite side and it doesn't make us oppressed. I believe if many women saw the masterpiece I got to hold in my hands on Sunday morning that they may feel the burden I do. I was a mother, a wife, a daughter, a sister, a friend, and most importantly a woman that day doing something only a woman can do...bring forth a child from my own body. In all it's painful, heart-wrenching glory it is going to be one of the top 6 blessed and WOMANLY moments in my life. #iamfree #allwoman #daughteroftheking

Do you get time away?

While having a house full of 8 kids this week (yes, I said 8) ranging from 1-7 years old,

 it made me pause and think about how often we as parents of children with special needs get time away.

These kids have multiple diagnosis, disorders, allergies, delays etc...

• Autism
• Dysphagia
• G-Tube
• Apraxia of speech
• Celiac with Dairy intolerance
• Sensory Processing Disorder
• Frontal Lobe delay 
• Gross/Fine motor delays

Now I list this not because I want to get sympathy or a woe-is-me, I love having all these babies under the same roof.

They get a long so well with minimal fighting, and the food restrictions are not difficult to work with and everyone can eat and be healthy.

Just ask my husband I can't stop cuddling the baby because she is squishy and snuggly and my 2 yr old (baby)  is a touch me not because of his sensory needs.

I am posting this because for the first time in 7 years my sister is having a break.

I kid you not she has been with one or all her 5 babies since birth for the last 7 years.

 She needed a break a LONG time ago, but it's sad that we as parents of special needs kids struggle to feel comfortable leaving these babies in the care of other even for a few hours let alone a day or more.

Parts are certainly overwhelming and we all learn to move into a new "Normal" once a routine or plan of care is in place.

But it's terrible that we don't get to take time for ourselves. 

I am happy for my sister!

She is currently pregnant with #6 and will be welcoming that precious baby in July 2017.

She is also working and going to Medical Assistant school and will graduate in May 2017.

 My Brother-in-Law is in Florida training with his new service dog.

And honestly if he wasn't needing to be down there I know this 8+ days with the kiddos wouldn't have happened. 

Not because we weren't willing or able (we offered to take them so they didn't have a babysitter for 3 weeks to help while dad was gone).

 But because I think as parents of kids with multiple special needs/dietary restrictions we feel guilty.

Yes, GUILTY!

• To take any extended time/vacation away
• Ask for help
• Make plans that would involve more than a trip to the store
• Feel vulnerable and less than Super Man/Woman to friends and family

Why is it more acceptable when your child is "Typical"?

We all need time away to recharge and date our spouse.

We need to make sure our own mental and physical health is met, and that we can detach ourselves from wrapping up our whole identity in our child's disorder/condition.

Have we ever thought what life may look like when we no longer have to be the 24/7 caregiver? 

God willing because they have started living on their own or have mastered enough skills to function unattended outside the home at a job or school?

There needs to be a life for us outside of "mom/dad/therapist/teacher/driver/cook/maid" otherwise we will have a very hard time transitioning from carer to just ME.

And I know I am being optimistic, sometimes and actually more often than not the parent(s) have:

•  A limited and really non-existent local support system.  
• Don't get out much to be able to meet good friends. 
• Too expensive to pay a suitable babysitter.
• Child's needs are too great to have someone who doesn't understand complex medical needs

So friends and family of these special parents please I beg of you...

If you have an afternoon or evening offer to watch their child, 

If you don't know how to care for the child ask to be taught.

Come over and have coffee or lunch with them if they can't leave the house.

Call and chat with them.

Let them have a NAP! Believe me they are chronically exhausted.

It is these moments where someone else can meet them where they're at that will make such a difference.

Don't be afraid, if the parent's can learn and handle this then so can you it just takes a willing heart.

The Secrets of a Special Needs Christmas

Christmas

Magical for children of all ages, or it really should be.

But the holidays for a family with a child with special needs is STRESSFUL!

It's not the busyness of having friends and family over or making bigger meals.

It's helping your child have a special experience and just as magical a season as other kids.

That may not seem like a tall order, but it can be.

Many families ask for advice from "seasoned" parents or carers and ask what kinds of things to get.

It's nice to have a community of people who have gone through what you are newly in the trenches of. 

It can be very depressing to watch the excitement of children your own child's age or stage and see your own not be able to do the same.

Unfortunately we all compare.

This is our 2nd Tubie Christmas...and we did it better than our first :-).

We were so lost and scared last year, new adaptive equipment, 

just coming from a very stressful hospital stay, 

a baby still NPO and on bolus feeds throughout the day with continuous overnight trying to "catch up", 

and me still off work to help us adapt to our "New Normal".

Some of the items we typically bought for our kids or others did were not suitable for a child who couldn't eat by mouth, 

Clothes that he could wear before were now a pain to work around his feedings with.

All the special foods we usually ate he couldn't even taste and forget any special candies or cookies!

(2016)

This year he was more capable to eat the special foods, 

enjoy tastes of cookies and take guided sips of holiday drinks.

He eats during the day now and only has a continuous feed overnight so we could get him any clothing we wanted, 

and physically he is catching up so he can enjoy "normal" toys for kids his age.

We still needed to change the way we do stockings and keep special candies and treats out of it, but got him more little toys and smaller non-edible items.

I will share our ideas, and maybe we can all compile them to make it easier for others.

• Cars/Trains
• Animals
• Balls
• Flashlights-with multicolor capability or shapes
• Blocks
• Bubble machines
• Bath toys
• Noisemakers
• Movies
• Music
• Books...like "My Belly Has Two Buttons" By Meikele Lee <3 
• Adaptive clothes for tube/device access
• Sleepers
• Tablet/Ipad
• Ornaments
• Blankets
• Plush dolls
• Memory games
• Flashcards
• Saftey belts
• Stroller
• Moby wrap/Ergo/other carriers
• Car Seat
• Hat/coat/gloves
• Shoes/Boots

Items for PT/OT at home...

• Small Trampoline
• Adaptive cups, silverware, straws
• Foam wedge for sleeping
• Chewies/Teething toys
• Pacifiers
• Bean bags
• Compression wear
• Weighted blankets
• Nook Brushes
• Z-vibe/or in a pinch an electric toothbrush
• Bath equipment
• Play mats or foam mats
• Jonny Jumper
• Walkers
• Noise canceling headphones for SPD kids

It does get easier,

Give yourself some grace and learn to find the magic in what you can do now. 

 Merry Christmas Special Families!!

"How does she do it All?"

I constantly have people in my life who ask this question

"How do you do it?"

"How do you..."

• Work two jobs
• Home school
• Keep house
• Cook for/feed kids with disphagia
• Keep up with medical/Therapy appointments
• Get enough sleep
• Not fall apart

Here's my secret...I DON'T

I am just an exhausted mama trying her best to keep our family fed, housed, healthy and as happy as possible.

It's no magic formula and nothing that any other parent wouldn't do if needed.

I am not more strong, creative or resourceful than anyone.

I try my best every day to push through and be the best Mom, Wife, Employee that I can.

I fail on a regular basis to...

• Keep my house clean
• Hold my tongue
• Get enough sleep
• Spend enough time with my family
• Cook at home every day...Salon nights I use whatever tips I make to bring home food :-)
• I miss appointments when I forget to put them on my phone calendar

This life is hard

There's nothing glamorous about working two jobs, and even though one of them I do hair and have to look "put together". 

My other job I look like a crazy bag lady because comfort is #1 on a 10 hour overnight shift.

When I get home, no matter which job; it's to a chorus of "I'm hungry, what's for breakfast/dinner?"

I try my best to get my stuff done and spend time with my kids and husband, but sleep has to happen. 
So for the last two years my girls have jumped into bed with me and they take turns laying close to me while the other one holds my hand. 
They watch an educational show on the weekdays and on weekends a movie or kids show while I sleep. 

During the day they may only be in there a few minutes to get cuddles in or in the evening before my job starts they may fall asleep for the night.  

I pick up 1 or 2 kids every Thursday morning after working 10 hours and take them to one of 3 therapies...Physical, speech, or Occupational. And usually don't get done until close to 12pm. Then a quick nap afterwards or take 2 to ATA and then nap. 

My Friday "Day off" is ideally spent cleaning and getting laundry done, but work trainings or meetings tend to happen those days as well as the frequent doctor's appointment for 1-3 kids.

Homeschooling is fit into our day either before I nap or after, and sometimes after dinner.

I fall apart pretty frequently and hopefully it's in private, but more often than not its in the midst of whatever is difficult or stressful. 

I raise my voice more than I ought too when it feels like no one is listening to me.

I hope people can appreciate my honesty, and take heart that as I tell my kids "practice makes progress", and I feel that I am daily practicing to do and be better than I was yesterday. I may fail, but at least I try.

I look forward to one day having a "normal" schedule, whatever that my look like. 

I am not writing this for sympathy, I love my family and am thankful for my jobs.

But you never know from the outside looking in that the ones who look like they have everything under control are just juggling the chaos.

I am not superwoman, I am just "mom".

The best, hardest, most rewarding title I have ever had.

I hope that parts of this last couple years my kids can forget, but other parts I hope they remember fondly and can see how hard we worked to give them the best life we can.

Heading to ATA with Nene and Sanna