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?!
Tuesday, July 8, 2014

a rest from therapy

It’s Monday night as I sit here writing and today was nothing like a typical Monday.  Life seems to stand still today and I am rested, refreshed, and quiet.  My older 3 kids are off spending most of this week with Grandparents, an Aunt, Uncle, and cousins.  Zachary is an only child this week and I think so far he doesn’t mind!  He likes the quiet like I do so we are soaking it all in – for now!  I’m sure we’ll crave the activity of a houseful in a couple days.  Amidst all of the deep cleaning I did this morning with no extra kids around, I found time to read a book in the afternoon.  Unbelievable!

Not only are the kids away to make the day slow but this week there is NO crazy therapy schedule!  As I drove to Walmart this afternoon my car almost automatically headed towards therapy.  Zachary has “graduated” from his first round of intensive therapy and amidst the excitement for a much more open schedule I think we already miss our therapists who have become more like family to Zachary and I. 

Intensive therapy, which included 8 sessions of PT/OT a week was absolutely the best choice for Zachary.  He progressed at a pace I never thought possible.  By the end of our crazy schedule he was walking with a walker, standing at a wall with one hand, crawling on all fours, and drawing circles on a magna-doodle.  We are amazed with his progress!

But now the hard part.  For the next 4 months it’s all on our shoulders now to continue to push and challenge him.  We were sent home with pages of pictures and instructions on how to keep him learning and we have the equipment we need.  We have our UpSee (what an incredible gift and help it is especially when we are Z’s only therapists for 4 months!), a walker, and soon will get his Orthotics (little foot braces).  It’s so much easier to take him to therapy and let a professional who know what they are doing spend hours a day with him.  Me?  I find myself surrounded by laundry and cleaning and job responsibilities.  I didn’t sign up to be a physical therapist!  But I guess God signed me up for this over 3 years ago.  He blessed us with a special needs boy and with that comes the need to find/make the time to be therapist, nurse, caregiver, mommy. 

I pray about how all of this time off will work.  I pray for the creativity and discipline I need to spend time helping Z continue to progress.  I thank God for this quieter week and seek direction on being the best mommy Zachary needs.  (And I look forward to 4 months from now when we see our PT and OT therapists and friends and start therapy mania all over again!)


Tuesday, June 10, 2014

How I lost 17 pounds and dropped 2 pant sizes!

This is a blog post that I’ve started to write about 18 times.  The picture below that a friend put on facebook last week prompted comments and personal messages asking what was up with my weight loss.  Writing and talking about myself is so hard for me but I so badly have wanted to share a new journey I have been on and the successes I've had.  So here goes try #19 – or so!

At the end of March I started hearing through a couple of blogs I follow about a 2 month fitness challenge.  The challenge was called the “1800 minute challenge” and the goal was to get active, log minutes of exercise and see if each participant could reach a total of 1800 minutes for the months of April and May.  Since I became a mom over 14 years ago I’ve struggled since then to get my weight down.  With each baby brought more and more pounds.  I also have a secret about myself – I don’t like to always follow the crowd and can be oh so stubborn.  So when my parents started getting fit a few years ago and always talked about their exercise and weight loss?  That threw me into an obstinate routine of wanting to eat more.  Yep – just imagine how I was as a teenager! 

But April 1 something changed for me and I honestly don’t know what was different this day than any other time I got on an exercise kick.  But 30 minutes a day turned in 60 and I wanted to push myself harder and harder.  Running and working out became something I looked forward to, especially when my husband joined in – I definitely don’t want to be outdone by him!  By mid-April I was in a new routine but wasn’t seeing physical results other than feeling better.  That was when I stumbled upon a DVD series put out by Team Beachbody called Slim in 6.  It was ½ off (still is) and I ordered and was so excited when it came!  A six week commitment to finish these DVDs?  I thought I’d at least try.  Worst case scenario it’d end up on the dusty bookshelf with all of the other workout DVDs I’d tried over the years with no success.

I don’t think I have ever been so sore in all my life.  I vividly remember Zachary had a doctor appointment at Children’s Hospital a few days into my program and I could only slowly hobble out of the parking lot and into the building.  I kept pushing play every day, worked through the pain, and was amazed at the things that once seemed hard were becoming easier and easier!  I sweat A LOT, yelled through some of the moves, and sometimes prayed for Jesus to save me from this torture I’d put upon myself.  Believe it or not I slowly began to enjoy squats and lunges!

I am living proof that this program works.  It’s legit people.  Those infomercials for Beachbody programs whether Slim in 6, Hip Hop Abs, P90X, etc. that you see when you can’t sleep in the middle of the night?  They really work!  In 6 weeks I lost 17 pounds, over 8 inches, and dropped 2 pant sizes.  Serious! There’s a lot of research and science behind those programs and they really work if you put forth the effort. 

The exciting thing is I’m not stopping at 17 pounds.  In fact this week I’m so very close to making the 20 pounds lost mark!  I have Peter on board with me now and last week we began P90X3 – 30 minutes of insane working out but oh so fun.  Every day is a different workout so it doesn’t get boring.  At all.   
I have a few things that have most definitely helped me on this journey:    
  • ACCOUNTABILITY. Having Peter do this with me has made a huge difference.  When I don’t want to work out, he does.  And when he doesn’t want to, I’m dragging him into the living room.  (I also have this thing where I don’t want him to lose more than me – so I regularly try to get him to eat cookies and ice cream.  But so far his willpower is staying strong!)
  • NUTRITION.  I’m eating and planning meals differently than I ever have before.  I’m eating as much fresh foods as I can and am trying to stay away from anything that comes in a box – especially those with ingredients I cannot even pronounce!  My goal is 50% protein, 30% carbs, 20% fat and I use the My Fitness Pal app to track my food and calories.
  • COACHING.  So those DVD programs you see?  One thing I didn’t realize is there are people out there to coach you along the way!  Not to necessarily sell you products (even though you can buy the programs through them) but to encourage you.  About a week into my Slim in 6 program I learned a close friend from when I was that stubborn teenager  – a friend who was like my big sister – had just become a Team Beachbody coach!  She helped me learn how many calories I should be getting, taught me about that 50%, 30%, 20% ratio for my food intake and has just encouraged me when I would get discouraged.  Between Kim & her husband they have lost 177 pounds!  I know, right?  Crazy!
  • FACEBOOK GROUP.  Kim added me to a summer slim down challenge group on facebook.  It’s a whole bunch of people who are keeping each other accountable and encouraging each other with every workout we do.  Checking in and saying “yes – I worked out today” makes me want to keep pushing play on that DVD.

So here’s why I’m telling you all this.  If I can do it, seriously anyone can.  You can!  I can’t believe how much better I feel and the energy I now have.  It’s really amazing.  And I can’t wait to see how much more success I will have during my 90 day commitment with P90X3.

Do you want more info on Slim in 6 and want to purchase?  All you have to do is contact my friend Kim.  Drop her and email at  Tell her I sent you!  Kim will help you get started and moving, and don’t forget Slim in 6 is still ½ off – I don’t know how long that will last.  Slim in 6 is low impact and was definitely the best way to get my body ready for the insane P90X3.

Let me know if you want to make your own commitment!

Oh and my minutes for April & May?  2,620 minutes!
Friday, May 30, 2014

Therapy Mania Update - A Picture Tour

After a few weeks of Therapy Mania in the books I think I can say with confidence that this was the BEST plan for Zachary yet.  Oh how our morning schedule is crazy.  The two days I leave him in the hands of the therapists and go to work are stressful and rip my mama heart out a little.  He cries through a lot of the sessions and regularly makes his opinion known, but physically he’s making such great strides.  I truly think it’s the consistency of how often he’s there and the creative determination of his therapists that’s really making this beneficial.  

How about a little picture tour of Zachary's mornings!

Here he is supposed to be learning to stack - but of course crashing the tower is much more fun.

Sitting on the edge of this stool with open space in front of him is a massive improvement for Zachary in the past week.  This is something his PT has been working on with him for months.  He's had a huge fear of sitting alone and used to scream and shake and cling to his therapist when she'd try to make him sit like this. Of course toys with music and lights are required as a distraction.

Look at Zachary on his legs!  

Aimee is great at pushing the limits and trying things with him that seem impossible right now.  Here she's just trying to get him used to the idea of a walker in front of him.  He'll also have to get used to holding on to a walker if he's going to one day use one.

This is the fun new skill.  He's actually starting to enjoy this little bike and pushes on his little heels to make this tiny bike go!  

They sent this bike home with us for the weekend to keep working on it and here's a video clip from here at home last night.  Such a miracle!


Thank you for your prayers and encouragement over the past couple weeks as we get this therapy mania started.  Just asking how we are doing has meant so much.  It's crazy, but so far so worth it.

Last month an amazing group of people surprised me with an incredible gift - they raised money to purchase a Firefly Upsee for Zachary.  My sweet friend texted yesterday to say it arrived at her house clear from England yesterday and we'll be getting it TODAY!  I am so incredibly grateful for the thoughtfulness and love my friends from today and years gone by showed toward us, and I can't help but see God's hand through this gift.  The timing of getting the Upsee during these therapy intensive weeks?  Zachary is at such a perfectly motivated spot these days.  I can't wait to see how the Upsee helps in crazy amazing ways on his journey of growing and progressing. 

More on that later!