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!
    Friday, August 22, 2014

    new nephrologist & kidney stones

    Last Friday we drove to Denver to see a new nephrologist for Zachary.  Kidneys are a big factor in Lowe Syndrome and the past nephrologist we’d seen had the “come see us when something big shows up” attitude.  One thing I've learned so far being a parent to special needs kiddos is that parents truly have to take charge of their child’s healthcare.  If your gut tells you to get a 2nd opinion?  Do it!  If you’re not happy with a doctor?  Switch!  If you have a concern?  Don’t be embarrassed or afraid to call and talk to a doctor or nurse!  Thanks to the recommendation of another LS mom, and after the long referral/getting an appointment process, we saw a new doctor last week. 

    The experience in that doctors’ office was pretty much like nothing we’d been through so far.  We listened to Dr. Banks tell us she’s worked with LS kids before.  Albeit just a handful of LS kids that she’s seen, that’s a first to have a doctor already know LS and understand.  She already knows what to look for.  She looked at past lab work on Zachary and already saw a concern no other doctors had noticed before.  She ordered tests we’d been wanting to have done for several months now.  I kept picking my jaw up off the floor and probably smiled way too much in that cramped little room.  I wanted to cry and hug her and tell her she was a gift from God, but didn't think I should scare her off right away! J 

    In the past few days lab work and an ultrasound have been done and we have more labs and a blood pressure check early next week.  Yesterday we got the call that Zachary’s little kidneys are already beginning to form kidney stones.  Ugh.  He’ll have a follow up ultrasound to re-check in a few months.

    He’s started a new medicine that is typically given as heart medicine.  We are trying it with Zachary as it can help his kidneys slow down their leaking of certain proteins.  I give him the heart/kidney medicine multiple times a day and every time I give it to him I pray it doesn't mess with his blood pressure.  (Thus the blood pressure check next week) 

    My little boy is in God’s hands and I praise Him for the new doctor, new tests, and eyes on lab results that saw things other docs hadn't noticed.  God’s got my boy!  This I know.
    Tuesday, August 19, 2014

    I Cried In Kohls

    I’d like to tell you this was the first time I’ve cried in Kohls, but to be honest it’s happened once before. This time the tears had nothing to do with Zachary and all to do with my new journey to health and fitness.  It was the day before I was to fly to Texas for a conference and it was either time to buy belts and suspenders or clothing that fit!  I've lost 31 pounds in the past 4 months!  I knew my clothes had been getting bigger and I’d even moved into jeans several sizes smaller but I don’t think I really KNEW that a change was taking place.  I don’t think I really believe all my effort was working.  I grabbed several items that I knew logically should fit my new size but my mind told me “no way” will those fit.  As I stood in that dressing room trying on item after item that wouldn’t have even fit a fraction of my body just a few short months ago it hit me for the first time that this was real.  And I cried.  This is really me!  I’m down several sizes and all of my hard work to eat right and exercise are paying off!  I can only say that I didn’t do this alone – oh I have put forth the effort but I can only claim that “I can do all things through Christ who gives me strength.”

    I have a long way to go.  Some weeks the weight loss plateaus and it gets discouraging.  I still have a lot of weight to lose and I know there are muscles that are hiding somewhere that are waiting to be toned and strengthened.  This is a journey and new life style for Peter and I and I’m definitely learning a lot along the way.   I hope and pray that I am becoming a good example to the 4 sets of eyes that watch us work out every evening.  I pray for the message our new habits send to our kids – that they won’t see the need to get thin and look good, but to take care of the body God’s given us. 

    Recently I took a step that many would call crazy.  Throughout the past couple of months I have had many people want to know what I’m doing and what works, so I recently became a Team Beachbody coach with the goal of helping those around me start their own journey to health and fitness.  I want to share that this really is possible – I honestly never believed that.   Selling Beachbody products is part of it, but more so I want to cheer you on!  In my last post I mentioned the challenge/accountability group I was a part of.  The people in that facebook group have motivated me to keep going – to keep pushing play on those DVDs when I didn’t want to. They’ve guided me in how to eat right and get results.    They don’t all use Beachbody products and that’s okay!  It’s all about what using works for you and getting the encouragement to make changes and new habits.

    I want you to know this is possible for you too!  If you just need ideas and encouragement or if you want to join the free challenge group, head to my website,  Click on the orange "Join" link in the middle of the page and select "Sign me up for the FREE membership."  I can then add you to our fb challenge group.  I of course can help you select a fitness program that works for you, share what programs have really helped me, and share about the amazing Shakeology shakes that truly sold Peter and I on my becoming a coach.  If you’re not ready for that just do something.  Get up and go for a walk! Already have a fitness plan but just want the accountability and encouragement?  Let me know! 

    Photo Credit

    What are you going to do today to get moving?!  
    What are your fitness goals?  
    Sunday, August 3, 2014

    Declare Conference 4x4

    This week mama is leaving town.  One a jet plane.  To a writing/blogging conference!  This will be my 2nd year at the Declare Conference and I can't wait to learn, be inspired, worship, hear God speak, and see friends old and new.  

    I'm joining the Declare 4x4 link up to get to know each other a little better.  Here you go...

    4 Things About Me
    1. I grew up a “preachers kid” and had a love/hate relationship with that status when I was a teenager. 
    2. I married young – 19 years old by a month!  Now it’s been 16 years and I love my husband more than I did all those years ago. 
    3. I started playing the piano when I was in diapers – well maybe not quite that early but as long as I can remember.  Although I enjoy sitting down with a Beethoven Sonata, more than anything I love worshiping my Jesus at the piano and keyboard for weekend church services.
    4. I love sci-fi.  While I can be a quiet introvert, bring up Star Trek or Stargate and I’ll gladly join in the conversation!

    4 Of My Endearing Quirks
    1. My morning coffee mug must match what I’m wearing.  Don’t know why – but that’s why it’s called a quirk, right?
    2. I hate the feel and sound of paper napkins – it’s like nails on chalkboard to me. 
    3. I count stairs.  When I walk up or down stairs I’m typically counting them in my head.  The ever present predicament – does step 1 count as 1 or does the floor count so step 1 is actually step 2? Again – don’t know why!
    4. It drives me crazy when the couch cushions and pillows aren’t exactly in place.  I fix them about 13,000 times a day.  I should get over this – with 4 kids bouncing around on them all day.

    4 Things About My Blog/Writing
    1. While I’ve been writing for a few years now off and on I still feel like a newbie just getting started.
    2. I’m quiet and panic in a crowd not knowing what to say.  Writing has given me a voice I didn’t know I had and has slowly grown my confidence.
    3. I mostly write about our journey with our son with Lowe Syndrome and feel called to encourage other mothers with special needs kids.
    4. I hunger to learn and be inspired at Declare.  I’ve been sitting on a domain and hope to launch my new site sometime this year but my direction and purpose don’t seem quite clear yet.  The domain and switch to Wordpress are just sitting there waiting for me.

    4 Of My Favorite Things
    1. The last couple hours of my day after the kids are in bed.  My hubby, the couch, a movie, the quiet.  Stillness.
    2. Ink Joy 300RT pens.  Yes I just gave you the model number.  You’ll thank me later.  I’ll take one in every color please!
    3. Sak Saum bags/purses…LOVE them.  Just tried a pair of their earrings.  I might wear them almost every day.  Check them out!
    4. Coffee.  Anyone else super thankful the Keurig was invented?!