Wednesday, August 26, 2015

praying for gains - join me?

Many of you know I've found a new passion for health and fitness.  While I might be working hard to count my calories & watch my nutrition to lose the final stubborn pounds, I'm adding butter, oil, high calorie powder and more to Zachary's food and praying he gains weight!

Zachary has been on a downward spiral for about a month.  He eats pretty good but the weight has been slipping - every weight check lately he's lost a bit..  The majority of Lowe Syndrome kids end up on G-tubes and we are sure hoping this is not the direction we're headed.

What are we doing?  Pumping the calories and praying!  Praying lots that my little man starts to gain again. Even a tiny gain upward and stopping the downward spiral would be fantastic.

Here's 2 ways to pray...

1. That Zachary would grow and gain weight

2. That Zachary would once again begin to drink his Pediasure.  One of the keys in the past to his ever so slow gain has been his drinking 3+ cans of Pediasure per day.  His large shipment of mega-calorie Pediasure arrived this week and my heart sunk a little knowing he's refusing to drink it lately.  I'm hiding it in his baby cereal to still get some in him, but my faith that he'll ever lose his stubbornness and drink it is fading.  Will you pray with me that he'll shock us all and start drinking it again?  (Right now if it's not pure water in a regular cup he refuses to touch it)

Trusting GOD can do miracles! (and signing off because we need to head to yet another weight check at the doctor)
Thursday, August 6, 2015

Keep On Trucking / Crying Over a Pajama Shirt

I hope it’s not crazy to cry over my son’s pajama shirt, because that’s what I did this morning.  As I was laying Zachary down to change his diaper and get him dressed for the day my eyes read the words on his shirt as if it was the first time I’d ever read it.  A shirt I’ve put on him countless times caused my stomach to do a twist and turn, and if I wasn’t already sitting down I may have felt my knees buckle a bit.  That feeling when you know God is stopping you in your tracks and trying to get your attention?  That’s the moment.  Yep – over a pajama shirt!  I started to weep.

It’s just a shirt.  Really.  But when I read “keep on trucking” those simple words Carters’ put on a cute pair a pajamas became inspired words that soothed my soul.  I get asked all the time “how’s Zachary doing?”  And lately I don’t really know what to say.  “He’s doing good” is a typical response.  But in all honestly I feel like he’s a little stuck.  Not a bad thing.  I’d say he’s getting good at the skills he currently knows.  And he actually has 2 words and several signs he’s using to help him communicate.  That’s so great!  But I’m feeling the weight of stagnant progress.  I’m feeling the stand-still, holding pattern he seems to be in.  I’m feeling the gut instinct that he’s not gaining any weight. (actually since I wrote this we now know he’s lost some weight) And when my eyes see these things my heart tends to sink and get frustrated.

God’s words to me this morning? 
“Keep on trucking.  Keep going, Jessica.  I’m right here with you and Zachary. I know you’re weary and extra busy this summer, just keep trucking along.  I haven’t forgotten Zachary.”

It’s the little moments like this that keep me going and remind me I’m not alone.  I may not have a lot to report on how Zachary is doing, but what I do know?  God’s still got Zachary in the palm of his hand just like He always has.  And at the same time God's working in and through my little boy to teach me so very much!

Monday, August 3, 2015

We Have No Idea How God Works

Matthew 16:21 - 23
21From that time on Jesus began to explain to his disciples that he must go to Jerusalem and suffer many things at the hands of the elders, the chief priests and the teachers of the law, and that he must be killed and on the third day be raised to life.
22Peter took him aside and began to rebuke him. “Never, Lord!” he said. “This shall never happen to you!”
23Jesus turned and said to Peter, “Get behind me, Satan! You are a stumbling block to me; you do not have in mind the concerns of God, but merely human concerns.” (NIV)

23But Jesus didn’t swerve. “Peter, get out of my way. Satan, get lost. You have no idea how God works.” (MSG)

Jesus begins this section of Matthew 16 by telling the disciples of his impending death & resurrection.  I think I would have reacted exactly like Peter did.  “Never, Lord! This shall never happen to you.”  I wouldn’t let this happen to you!  Of course we’d be quick to defend and encourage our friend and say those awful things wouldn’t happen. 

But Jesus’ response dropped me to my knees today.  To sum it up – God knows best.  Jesus responded basically saying that Peter had a simple view and understanding but God knew the whole picture.  He knew beginning to end and the reason behind it.

Oh how that can be hard to comprehend and accept.  I like verse 23 in the Message version. “You have no idea how God works.”  The disciples didn’t know Jesus’ torture and death would result in Life for the believing world.  God worked in a crazy, unusual, amazing way! 

God’s working in our lives too.  Through the impending hurts, pain, struggles that we will face or may already be facing.  I have the mind of man so often and want to say “no, I won’t let that happen.”  No.  I don’t want to have a flooded house.  No.  I don’t want Gma’s health to fail.  No.  I don’t want a child with a syndrome and challenges.  The list could go on, and on, and on. 

While verse 23 could give me a bit of fear – that I don’t know what, why, or how; I actually sense peace.  God – our big all seeing, all knowing God who loves me dearly has everything in his hands. And like his big amazing plan that from human eyes just looked like pain and death we now see He used that plan for the most good of all. 

So I trust You, Lord God, with all I face.  Work your plans in and through me.  And may I respond the way You, Lord, would have me respond to the trials I face.
Friday, June 5, 2015

tough days but lasting joy

Doing life with a special needs kiddo is not for the lazy or weak of heart.  Especially during those weeks that seem to be cluttered with appointments.  There's always a therapy appointment to head to, a doctor or two to call, an appointment to schedule, medications to give, a prescription to refill and pick up, all the while juggling the rest of the family's schedule, housework, and I haven't mentioned my work responsibilities.  Add keeping an eye on 92 year old grandma who has been extra needy lately to the mix and some days my head feels like it's just spinning!  I could mention that in the past few weeks we've had to evacuate our living space and the 6 of us are living mostly out of 1 bedroom but that's a story for another day and quite honestly thinking about all of this is making me a little sick to my stomach.  We've been busy and faced a lot of adversity in the past month.  Phew. I need a nap!

Back to life with Zachary.  This week started with lab work, an ultrasound and a kidney appointment. So far his kidney function remains good and with just a little tweak to some of his meds we are good to wait 3 months for his next appointment.  He continues to be stuck around 23 pounds, but hey, we were at 22 pound all of 2014 so 23 pounds is some weight gain, right?!  We REALLY need this teeny tiny skin-and-bones boy to grow!

The appointments aren't stopping.  His kidney doc is referring him to a hematologist due to his continued low red blood cell count, and we made a special dentist appointment to get his teeth worked on while he's under laughing gas or something to hopefully make it possible for him to cooperate.  The last dentist appointment was a major fail and may have ended with mommy tears.  Last month we added a rehabilitation doctor to the list and learned after xrays that he has scoliosis and minor hip displacement - as in his hip is not completely in the socked. Like I said - this life isn't for the weak of heart.  There's always something new to face!

We celebrated Z's 4th birthday last month!  Incredibly hard to believe.  While being massively behind developmentally he's making some great strides on his own time table.  He's race car fast using his walker to help him get around, he can climb on top of almost anything now including the kitchen table and straight into his high chair when he's hungry!  Zachary has grown to love his weekly Hipo Therapy - therapy on a horse!  His favorite past time is splashing all of the water out of the toilet and either slamming doors loudly or shutting the squeaky doors ever so slowly so that the creaking sound lasts for about a full 30 seconds at a time.  Cue the earplugs!  A lot of his whining and screaming has stopped as he is learning to communicate with sign more and more.  Hallelujah!  He can now tell me when he's hungry and what he'd like to eat (he only has 3 favorite items maybe that's why it's easy to figure him out now).  You know how you know it's time to run to the store when the toilet paper is out?  It's that urgent when the cottage cheese containers are gone. We buy 2 at a time - the large ones from Costco and we still run out!  A blessing of our special Z turning 4?  FREE diapers!  Yep.  Delivered to our door in massive boxes to last a month.  Hooray!!!

I'm tired.  We've been hit with so much tough stuff lately.  But there's so much joy in the midst and I'm looking forward to seeing the little blessings the summer months will bring.
Wednesday, March 4, 2015

busy mama & answered prayer

Remember when I wrote a few weeks ago about how I'd been so busy with therapy?  Well - I can honestly now say that was nothing!  Not only am I working part time jobs, running to therapy appointments, caring for Grandma and our family, but I am now up to my eyeballs in a month of classes to become a CNA.  In our state, as the parent I can become a licensed CNA and be Zachary's home healthcare nurse!  I'm spending every evening this month in class practicing all the nursing skills, taking notes, praying my way through tests, and drinking coffee.  Lots of coffee!  This week are class finals, next week are clinicals in a nursing home facility, then next month I will take my state test.  Phew!  Prayers are appreciated that I actually pass after all of this hard work! :)

Yesterday we received an answer we've been waiting on for almost 4 months.  Zachary will get the insurance coverage he needs!  No more restrictions on therapy, and I can make the calls to get the medicines and pediasure we've been waiting on as well as get him his own walker. (We've been borrowing one from therapy) Of course God made me learn to wait and pray and trust all the way till last minute, but He came through and answered all those hours on my knees in prayer and yes, sometimes doubt!

Thank you for walking this journey with us.  Many of you have been bringing us meals during this busy month and I can't begin to tell you what a huge help it has been.  How much better it is to not do life alone!
Tuesday, March 3, 2015

Stream P90X, Insanity, 21 Day Fix, T25, and much more for $13 a month!

I'm so excited to announce Beachbody On Demand is here!  With on Demand you can stream $1,500 of the most popular workout programs from any mobile device, laptop, or TV for $3 a week!  With On Demand you have instant access to all the following programs including their calendars and nutrition guides 

  • P90X
  • P90X2
  • P90X3
  • Insanity
  • Insanity The Asylum
  • Hip Hop Abs
  • Turbo Fire
  • 10 Minute Trainer
  • Brazil Butt Lift
  • P90X 1-on-1 Series
  • Chalean Extreme
In addition you get one workout from each of the following new hit Beachbody programs
    • 21 Day Fix
    • 21 Day Fix Extreme
    • T25
    • Insanity Max:30
    • Body Beast
    • P90
    • Piyo
    • Slim in 6

    Here are the two On Demand Packages

    Package 1: 3 Months of On Demand - $39.95 (.44 cents a day, $3 a week, $13 a month.  Incredible value no matter how you slice it!)
    With this package you get 3 months of instant access to everything mentioned above.  Once you sign up just pick your favorite program or take a few for a test ride and see what trainer and what program you like best. No waiting for your program to arrive in the mail.  You will have instant access to everything mentioned above!  
    In addition you get one workout from each of the following new hit Beachbody programs
    And if that weren't enough you also get 10% off all future purchases, customizable meal plans with recipes, free coaching by me and everything TD Nation has to offer!
    I'm sorry but it's crazy not to take advantage of all this value!  If you want results and you want them fast this is your answer!  Skip the gym membership, skip the personal trainer fees, skip Daily Burn where they charge you the same as above plus an additional $15 a month for a coach yet have far less superior workout programs and take advantage of the best deal you're going to find with GUARANTEED results!  Try it out and if you don't like it just call in for a full refund.  You have nothing to lose but the weight!

    Order Package 1 HERE

    Package 2: On Demand + 1 Month of Shakeology - $140

    With this package you get 3 months of On Demand plus a month of Shakeology and everything mentioned above.  Shakeology is normally $130 so with this package you're basically getting 3 months of On Demand for $10!!!  
    Plus, with Shakeology, you get the healthiest superfood shake of the day that will help you reduce cravings and increase energy for those tough workouts. Shakeology is the most delicious, nutrient-dense superfood-packed protein shake on the planet. It contains more than 70 natural ingredients derived from rich, nutrient-dense whole-food sources from around the world!

    If you order On Demand make sure you reach out to me via email so I can get you in our private support group.  In this group I will help you select the perfect program to reach your goals and I'll help tailor a nutrition plan so you see the fastest results!  

    Thursday, January 22, 2015

    January 2015 Update & Prayer Request

    Remember me?  It’s been ages since I’ve gathered my thoughts on this white screen.  Pen to paper.  Fingers to the clicking keyboard.  I missed sharing our journey.  Life has moved at an incredible pace.  Mostly because we entered another round of intensive therapy and between the 9 hours of appointments a week in addition to my regular jobs and responsibilities, I hardly found time to sit still long enough to think let alone write. 

    Zachary is doing great.  During this last round of intensive therapy he spent 9 hours a week working on walking with a walker, starting to do easy puzzles, learning to drink from a cup, etc.  He made some great strides and conquered some of his fears.  We have lots to learn still but he made massive improvements.  Walking with his walker suddenly became fun and if you were to stop by today you’d probably find him walking back and forth down our short narrow hallways.  He absolutely loves it and frequently giggles while he travels back and forth.  I continue to work with him in our Upsee that was generously provided by a bunch of dear friends.  He needs to get over the fear of walking with open space in front of him and not holding on so tightly.  The Upsee is the perfect way to work on this fear he has.  Some days I think he’ll never catch on.  But then I remember how far he’s come already. 

    How can you pray?  We have run into a glitch with Zachary’s insurance coverage and are working on a solution.  Through what seems to be God’s hand guiding each step we have hopefully found what will work for his needs, it’s just going to take a bit of time.  Pray that Zachary’s file is approved quickly so he can receive the services and medicine he desperately needs! 

    I feel like a lot of this journey is waiting.  While I don’t like waiting and feeling helpless in this journey, I’ve learned the peace and strength I receive when I spend time on my knees.  Prayers of family and friends sustained me even yesterday when I went into a meeting about Zachary’s insurance coverage.  I’m grateful for a God who knows, sees, and hears.  He loves Zachary.  And he’s teaching me so much all along the way!