Life Lately // A Zachary Health Update

I'm well overdue for another life lately post. The last time I left you was a couple months ago when we were deep in the throes of Zachary's hip surgery recovery. I'm definitely happy to say those days are behind us! Zachary's hips have healed nicely and new bone is growing in where they cut and moved things around in there. He has had regular X-rays to re-check and we've been cleared to not go back to the see the surgeon for another 6 months where at that time they'll begin the talk about his follow up surgery. Yes you read that right - he requires another surgery approximately a year after the initial surgery to remove the plates and screws they have put in. 

Recovering and re-gaining his walking and standing skills have been a bit harder that expected. He's re-learned to crawl but had some progress delays due to unexpected issues with his feet. We will be getting new foot braces next week to hopefully help his feet. 

I am happy to say that we witnessed a little miracle this morning as he briefly stood on both feet! I quickly snapped the picture below before he knew I saw what he was doing. That's a HUGE little glimmer of hope in that picture. He'll get back to walking was eventually, I just know it. 

While we're talking about Zachary, I'll try to quickly share our last couple of weeks. Zachary seemed to come down with a stomach bug on a Saturday night and by morning was showing significant signs of dehydration. Due to his kidney concerns, the kidney doctor quickly got involved and asked us to go to the emergency room. After several hours of fluids and lab work, we were sent on our way.

Unfortunately the dehydration didn't improve and we were sent back to the emergency room 2 more times that week before they admitted us for a 4 night stay. After other symptoms began presenting themselves, additional tests were run and we learned Zachary had C-diff. C-diff is a very nasty "super bug" that can be commonly caught by those frequenting a hospital or who have weakened immune systems after antibiotics. While C-diff can be quite hard on the kidneys, Zachary's kidneys seemed to have hung in there nicely. We're not exactly sure when or how he caught the nasty bug but thankfully with some strong antibiotics Z seems on the mend. 

The only remedy to kill the nasty bacteria spores that can linger on a surface from months to a full year is bleach. Needless to say, I've been on a bleach disinfecting rampage and have even had nightmares about the pesky germs. 

We are grateful God has protected Zachary's kidneys amidst a week of frustrating dehydration and the C-diff bug and we are pretty much staying away from people and germs for the next while. It's somewhat common for the illness to return and so we are being extra cautious to keep Zachary and his weakened immune system safe and healthy.  When you have a kiddo that's extra fragile, many things are simply not worth the risks!

Want a glimpse into our days? We've been picking up the vlogging camera again and you can see a little bit of our hospital stays on our YouTube channel or check out the video up here ^^^ or down below! 

Want to not miss a vlog? Head to our actual YouTube channel and you can click "subscribe" and then the little "bell" in the corner to be notified any time we post a video.

Needless to say life has pretty much revolved around Zachary's health for the past several months, but we are doing our best to make sure we find time with the other kids as well. They have all been so patient, caring, and helpful as we navigate what has been an unusually hard 4 months. 

If I could give you one quick piece of advice whether you have a special needs child or really any other things in life distracting you, it's to not forget to make time for the others in your life who need you. It may mean saying no to others and other activities, but in this moment here and now the most important people we need to be pouring into are those 3 big kids right there.

Something fun? We found a gem of a hiking place yesterday.  I have no idea why we've lived here for so long and have never ventured this this park. But it's now our little secret place that I have a feeling we'll sneak away to often. 

I hope you have a great Thanksgiving week! We're looking forward to the "hopefully" quiet week ahead.

Surgery Countdown

Ready or not, here we go! It's Monday afternoon, and at this time next week hopefully Zachary will be just coming out of his predicted 5 hour long surgery. I can't believe the time is almost here. Do I feel ready? Not at all.

For those of you that don't know, in less than a week Zachary will be having surgery on both of his hips - a Bilateral Varus Derotation surgery to be exact.

I've been told the surgery will be a tough one and the recovery very long for our little man. Jesus, help us!

We'll get through it, I have no doubt. Again and again God has shown up with blessings from unexpected people - little nudges and reminders that God's got this and has his arms around our Zachary.

This week is a flurry of the usual work plus an added day of staff meetings but also I'm busy prepping everything else around here for our being gone for a week at the hospital. I know this week is going fly by.

The kids' summer is rapidly winding down and they will be spending the week here with my wonderful mama who is stepping in to take care of everyone else on the home-front!

For probably the quickest updates on Zachary, especially next week, follow my Facebook Page or Instagram. And we plan to upload video updates to YouTube so you can see how it's going.

Thanks so much for all of the love and prayers,

Jess

SPECIAL NEEDS SIBLINGS // A BIRTHDAY CELEBRATION

Last week we celebrated 6 years with our amazing Zachary. The past 6 years have been filled with countless doctor visits, book draws, different tests, therapy appointments, and lots of emotions. The years have also overflowed though with countless laughs, smiles, moments of gratitude, and awe. Zachary is a fighter and has reached milestones many didn't think he'd ever meet. God has been so good to our family and our precious boy. 

May 4 always comes with strange emotions for us. Zachary doesn't want a cake with candles, could care less about opening presents, and has no understanding for what all of the excitement is about.

What May 4 is, though, is a day to celebrate the blessing of having Zachary in our lives. We celebrate how far he's come and how far God has brought his tiny body in these short 6 years. You guys, he's gained so much weight compared to a year ago and is WALKING! A-ma-zing!

So how did we celebrate Zachary this year?

1. Chick-fil-a!

Zachary doesn't eat much at home other than soup and cottage cheese. (Thus we're so thankful for his G-tube!) He doesn't even like to sit at the table with us when we eat, so how could we even have a family birthday dinner? Why Chick-fil-a of course. His favorite!

We met Peter's family and some very dear friends from church at the restaurant. We had balloons, Zachary got his fill of chicken, and survived the excitement and noise for a little bit...before Peter had to take him to the car and escape back to the quiet. Zachary can only handle noise and activity for short amounts of time. He's definitely a homebody who prefers just his little family of 6.

2. Siblings

Here's the core of why I'm writing this post. Peter and I decided to do something a little different and unique this year and celebrate our big kids on Zachary's birthday. Being a sibling to a special needs child is not the easiest. Our 3 older kids are extremely patient, loving, helpful, and have put up with so much these 6 years so far. Our middle two kids have sat in plenty of waiting rooms and through long appointments. They've had to wait patiently to get a word in while I spent excessive amounts of time on the phone with doctors and nurses.

While his oldest brother is focusing on his final years of high school, Zachary can melt even the biggest kid of the family. The love 17 year old Travis has for Zachary is beautiful to see.

Our kids have put up with numerous moments where we had to give the majority of our focus to caring for Zachary. I hate to admit it, but sometimes they just have to get ignored. Yet they never ever complain. When Zachary does something new and exciting? They're just as proud and excited as we are. 

On Zachary's birthday, we decided to turn the tables a bit and celebrate our big kids. We took the day as an opportunity to thank each of them and celebrate what amazing "Special Needs Siblings" they are to Zachary.

Each kid received a card from Peter and I with a special message just for them and a small non-birthday present from us. Since there isn't necessarily a Special Needs Sibling Day, we created our own! And I've heard from each of them how much our gesture meant to them.

This coming year doesn't look to be filled with all sunshine and roses with a major surgery later this year for Zachary. But he has the best big brothers and sister anyone could ask for to love and support him and us through it all!

Travis, Kaylee, and Daniel - you're the BEST! You are the heroes in Zachary's life who don't get near the credit you deserve. 

Zachary is better because he has each of you!

What a Day :: Special Needs Stories

As you may know, our family has dabbled in sharing our stories in video form.

As I sat down the other day to download and edit footage from a fun day we had just had, I sifted through clips from the day before. Zachary and I had gone through a busy and stressful day and I almost deleted it all. I hadn't even filmed a whole lot and it was a plain emotional day.  

But before deleting I remembered our "why" of YouTube and my website. I remembered the people who have reached out to us for questions about our journey and experiences after sharing our stories in both video and written words. 

If you also live this crazy life - just know you're not alone! 

Here you go...a glimpse into a not so perfect day. WATCH BELOW...

Fragile Files - Weekly Update & YouTube NEWS!

I've grown to love this post each week. I've found it good for my soul to look back and reflect. The past few days have seemed a bit stressful in regards to Zachary's health but looking back allows my heart to refresh a bit. I kind of stir up what seems a bit "off" with all the good that I can look upon as well. My perspective can instantly change.

THERAPY surrounds each and every day of our week but thankfully Monday was a holiday which means we were able to miss both Monday and Tuesday's appointments! We had a refreshing weekend with my family in Nebraska. Fireworks, swimming, roasting hot dogs and smores, play time with cousins, and a trip to the zoo and splash pad filled our long weekend. So much fun!

Wednesday's SPEECH THERAPY at home was filled with tears and, well, I'll be honest - screaming! But this Thursday's session was life giving to my heart. Zachary's literally thrives at this session. He does so well. I'll put below a clip of him at his session. I just love the moments when he cooperates and the comprehension and communication barrier disappears even for the short 45 minute session. It's a life giving hour to sit and watch.

Friday was filled with a trip to the hospital for doctor appointments, x-rays, and lab work. The afternoon was busy with several back and forth conversations with his endocrinologist and his nephrologist. Some of Zachary's lab work numbers were way off and adjustments needed to be immediately made to his medicines. After a late night call with his nephrologist we are now in a holding pattern waiting until Monday when we will re-check his lab results. 

We're praying for an increase in his sodium and potassium as well as praying that we can control his vomiting. I can say unfortunately throwing up has become normal for the little guy and he tolerates it like a pro now. Not necessarily a great skill to have mastered, but...such is life these days.

GOOD NEWS?! Zachary's medical crib was approved and should arrive this week!  After 3 months of waiting there will be MUCH rejoicing when those bed parts arrive! 

Our family has started a NEW PROJECT! We don't want to miss a moment of the precious days with our family so we've began "vlogging" memories with our family of 6 and will be capturing our story with Zachary - the ups and the downs.

We pray these videos will not only be fun to watch but will encourage those who also walk similar journeys with medically fragile and special needs kiddos. Getting a glimpse into another special needs family's story can hopefully help other know that your not alone! Head over to our new YouTube Channel HERE and subscribe to keep up with our family.

Here's a glimpse from Friday's vlog - a trip to the hospital for appointments.

G-tube Update

I shouldn't stop writing. Because when I try to start up again? I don't know where to start!  It's been the fastest 6 months I think I can ever remember. The last time I sat down to whittle away at my thoughts was a couple of short months after Grandma Jo had passed away.  My life had changed in an instant and the hole left was deep.  She had consumed every waking and sleeping minute for so long I didn't know how to continue.  But life keeps moving at a fast pace and little glimmers of our times together still hit me throughout each and every day.

What I didn't know is that the months after Grandma's passing would be a whirlwind of events where Zachary would need my undivided attention.  While Zachary's weight gain has always been a constant struggle since his first weeks of life, we always had held out hope that we could get him to grow enough to avoid alternative methods of making him grow.  I tried so hard to get him to eat, counted the calories, added all the extra calorie boost.  Deep inside I think I knew I could only try so hard.  No matter my efforts he just wouldn't grow and was having consistent dips in his weight.  Meal times were getting more and more frustrating and unfortunately there's a part of this process that makes the mama want to blame herself. Blame that I'm not doing it right.  That I'm not feeding him enough.  Not trying hard enough.  That it's my fault.

Looking back?  It wasn't my fault at all.  Zachary's body just couldn't do it on his own.  He couldn't eat the amount of calories his body requires to grow even the littlest bit.  So early spring brought an NG tube - a tube in his nose to pump Pediasure into his tiny tummy.  We spent a few days in the hospital waiting to see if it would help and ended up coming home with the NG.  Oh how those days were stressful.  Trying to keep the tube from coming out, going back to the doctor to get it re-inserted and the torture that was for my boy was almost enough to make this strong mama break.  Thankfully it was decided that the extra feeding support would make a difference and surgery was scheduled.

The Friday before Easter Zachary had g-tube surgery.  Medicine these days truly is fascinating.  His stomach was pulled up and stitched to his abdominal wall and a button was inserted in his belly.  When we open the button we can attach a tube and he has Pediasure pumped straight in.

I'll never forget surgery day.  Peter and I sat in the quiet waiting room while our boy was in surgery.  We paced the floor watching the television screen on the wall like hawks for updates on how Zachary was doing.  When the nurse came back to tell us everything was done and went well, my stomach flipped.  She left the room and I'll never forget Peter's simple words.  "Well, we have a tube baby."  Tears began to flow.  "I'm sorry little man" my heard cried.  Again I felt like I failed, that it was my fault my boy was now in pain and his stomach would never look the same.

We are now almost 3 months into this new journey and I'm SO GLAD we made the decision to get the g-tube. Mealtimes are still a massive battle.  Of course I want him to continue to learn to eat by month.  But the pressure is off.  If he won't eat?  It's okay - he's still getting calories.  We definitely have not necessarily arrived to the weight gaining finish line.  He's been gaining but also losing, and as we adjust his intake by tube we've had lots of vomiting.  It's exhausting and very time consuming to give him his feeds by tube during the day.  I watch his every move hoping and praying the food stays in.

This is our new path and I'm now so glad we're here.  We have help and hopefully he will grow.  Zachary is our bright light and always smiling joy.

A couple of prayer requests:

1. That we would be able to figure out a feed schedule that help him grow and not vomit!

2. We have been waiting months for insurance approval of a medical crib for him.  Zachary is hooked to a tube each night so he needs to be contained.  Unfortunately he can climb out of a regular crib.  For now he is sleeping in a porta-crib so we would love to have a bed for him SOON!

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!

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 2^nd 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.

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!)

The Not So Quiet Birthday Presents

Birthday shopping is quite different with Zachary.  He doesn't really play with a toy unless there is a button to push with bright lights and continuous music. (and when I say continuous, I mean it!)  We have a giant bucket of toys that just sit while he plays with just his select few.  A select few that I've already changed the batteries in countless times!

So we gave him an activity table complete with countless lights, plenty of buttons and lots of noise and music. But the catch is he has to at least pull up to his knees or stand to reach.  Any way we can force him to use his sleepy weak muscles is a plus!

Lowe Syndrome kids can have autistic tendencies, some of which show up in Zachary in the way he plays - or doesn't play.  His favorite activities include repetitively slamming a door, twanging the door stopper, and tapping on walls.  He could spend hours at that door stopper at the top of our stairs.

His other gift was my husband's best idea ever and I think we could probably sell these.  Zachary loves this...I don't know what you'd call it. Zachary's love of door stoppers turned into a toy?  My Lowe Syndrome boy's dream come true!

Why I have no pictures of him using it?  I have no idea!  Other than it may have driven me crazy and I left the room.  Because he can make those door stoppers play for the length of a Beethoven Sonata before he moves on.  

I'm thankful for the banging, twanging, slamming, and the challenge of having to think outside of the box for present for little Z.  He's a blessing and joy!

Happy Birthday Zachary & Choosing Joy

Birthdays are quite different as the parent of a special kiddo.  Zachary turned 3 on Sunday without the rambunctious, activity filled, fun themed party.  There wasn't a favorite cartoon character cake, no piles of wrapped presents and no little friends to run and play games with.  In his mind and body which is more like a 6-10 month old it was just a normal day.

I’m learning a lot of this 4^th parenting journey we are on is about choosing my own attitude and what I will dwell on.  I could have chosen on Sunday to have thought about all of the other 3 year olds I know having fun birthdays this year.  I could have taken time to remember all the impressive parties I did with my other kids when they had their 3^rd birthdays and feel sorry for myself and Zachary.  Don’t think I have it all together.  Those ugly thoughts tried to sneak up on me throughout the day.  Often!  But I’m learning and re-learning that so much of this journey is about CHOOSING JOY.  It's about my choosing to see GOD and the good instead of dwelling on what I cannot have. 

Zachary might not "get it", but we celebrated him anyway.  It just looked a little different!  We celebrated another year of life for our boy.  We celebrated God’s hand in his life.  We celebrated the crawling, the climbing, the pulling to stand that came in the past year.  We celebrated the way he can communicate a couple of signs and sounds.  We celebrated his beautiful tiny life!

And a trip to the zoo with a few close friends was just the perfect quiet way to celebrate!

Come visit me here tomorrow and I tell you what we gave Zachary for his birthday.  We have think a little differently when giving gifts to him as he doesn't "play" like a regular 3 year old.  But I think we nailed it this year!

unnoticed heroes

To the unnoticed heroes we see multiple times a week

Thank you!

For your consistent patience when he doesn’t want to try

For putting up with so many tears and screams

Thank you!

For pushing him a bit farther than he really wants to go

For being creative and trying new things

Thank you!

For treating him like he’s not just another kid

For loving my boy and showing you care

Thank you!

Thank you, sweet therapists.  

Thank you for giving all you've got to help our boy be the best he can be.  

You truly are our heroes!

praying through the silence

The sun was slowly rising to reveal the thick blanket of snow that had caused the school's 2 hour delay. Everyone was still sleeping and I enjoyed the longer than normal quiet morning.  I had my quiet time with a hot cup of coffee and my Bible.  The quiet continued as I slowly browsed my blog feed and the quiet continued as I snuck upstairs to start making pancakes.  I soon heard the end to my silent morning as my 3 oldest children climbed the stairs, already bickering and calling for me.  They sat at the table and continued to talk loudly and I sighed.  The quiet was gone.  Nowhere to be found.  Sometimes I forget to appreciate this kind of noise.

Later that afternoon Zachary and I headed to therapy.  It’s always quiet when Zachary and I drive to therapy, church, or the store.  It’s quiet when I fold laundry in the afternoon.  There’s the occasional babbling and he cries when he’s hungry or tired, but otherwise it’s quiet all day.  

Silent.  

My heart aches and I long to talk to my 2 ½ year old.  I desperately want to hear his voice tell me what is wrong.  I want him tell me he hates his dinner, that he doesn’t want to go to bed, and to ask “why” 500 times a day.  I'd even love it if he yelled at his siblings and joined in on the noise!  But there’s nothing.

Oh Zachary, I’m hopeful for the day I hear what your voice sounds like.  I wait with anticipation for you to talk to me on the way to and from therapy, to talk so much I want you to be quiet!

But until that day I’ll pray for you through the silence, trusting God's plans in the quiet.

Do you have a silent kiddo as well? Join me! Try prayer during those silent car rides and moments throughout the day - it changes my whole perspective and provides beautiful moments to draw near to God, the designer of our special kids.

-Jessica

Follow our family's stories in our daily vlogs on YouTube HERE 

"special" through the eyes of a 5 year old

It was a brief conversation but one I won’t soon forget.  Five year old Daniel climbed into my lap and we watched his cousin Anna coo and babble on the floor.

“Mommy, is baby Anna special like Zachary is?”  he asked. 

“What do you mean?” I replied, prompting for more. 

“You know, like Zachary is extra special because he can’t walk and do other stuff.”

“No buddy, Anna’s not that kind of special.  But Zachary’s a pretty special brother isn’t he?”  I said.

"Yep." Daniel quickly said.

And then that was it.  Daniel jumped down to run and play.  That short conversation and his innocent words reached a place in my heart I’m pretty sure I’d forgotten was there.  Daniel doesn’t really think of Zachary being any other way.  Before he started Kindergarten this year he spent hundreds of hours in therapy sessions and doctor’s appointments with Zachary and I.  Daniel has seen a lot.  But he doesn’t see Zachary as different, but rather as being just who he is.  Daniel doesn’t see Zachary as broken, but as extra special.  It's very evident in the way he talks to, loves on, and plays with his little brother.  

It’s my prayer that as you and I see those with disabilities and special needs that we too don’t see them as different or broken but as extra special, loved by the Almighty God just as much as anyone else.  May we see those with disabilities around us in the same way my 5 year old does.  Special.  Loved by God and just the way they were intended to be.

Follow our family's stories in our daily vlogs on YouTube HERE 

zachary update: it wasn’t my genes

In the past month Zachary had his every 3 months round of visits with Metabolic, Genetics, GI, and his Opthamologist.  (Neurology is still to come later this week)  And that's not counting the 4 therapy sessions every week.  He was weighed, measured, poked and prodded multiple times.  After all these visits I re-learned a few things. 

1.       A stroller is always a must at appointments, for walking up and down the halls while waiting. 

2.       Daddy is always more fun while waiting in the doctor’s offices that Mommy is. 

3.       An iPad is always a must – particularly if it’s loaded with Fisher Price apps. 

4.       Mommy and Daddy always deserve a stop at the Cheesecake Factory as a reward after the long appointments.

Medically we saw Zachary’s weight fluctuate a bit but heard doctors who were pleased with his slow but steady physical progress.  He will have blood and urine tests every 4 months to track his kidney function – a primary concern with Lowes.  So far things are okay with his kidneys!  His eye pressure continues to look fine – which is also a common concern.  One of these days both of those will probably be an issue, but I’m praying daily for his kidneys and eyes, knowing God is in control.  We are also waiting for his new glasses to arrive.  Because they are such small frames and strong prescription they have to be special made at a lab which takes time, as in 4-6 long weeks.

 A new crazy prescription he started is an antihistamine.  Not because of allergies, but because of its side effects.  The side effect of the antihistamine is hunger.  Hunger makes you want to eat.  Eating hopefully makes you grow.  Or at least that’s the plan, strange as it sounds.

Last month Zachary was also fitted for a therapy stander.  More on that with pictures when it finally arrives!

At his metabolic and genetic appointments I was poked as well.  I had blood drawn to see if Zachary’s Lowe’s diagnosis came from me.  The doctor called yesterday to say I was negative for the Lowe’s mutation.  For the first time in a long time I had questions for God.  I think I more wanted an answer that scientifically proved why this showed up.  Instead we have an instance where Zachary’s gene mutation just happened.  A new strain popped up.  I know God just decided this is what was best, but no scientific answer makes me want to ask God why.  Why?  I’m sure I’ll ask that over and over throughout the years.  But I know God has his reasons, far above my understanding.  

I have a special kiddo.  A special boy who needs my extra love and attention.  And I’m here, giving him all I’ve got and thanking God for the way He shows himself evident through this sometimes easy, sometimes hard and long journey we are on.

welcome to holland

I know I've read this story before, but it's been years.  As I re-read Emily's story today it took on a whole new meaning now that we walk this new journey with sweet Zachary. I'm learning how much truth are in these words.

WELCOME TO HOLLAND

by
Emily Perl Kingsley.

I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......

When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."

"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."

But there's been a change in the flight plan. They've landed in Holland and there you must stay.
The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.

So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."

And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.

But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.

breaking my silence

It’s been quiet around here since we received Zachary’s diagnosis.  I needed time to read, learn, and process. I've read the only book out there on Lowes.  The Children’s Hospital put us in contact with 2 other families with Lowes kids and I have chatted with both moms on the phone.  Oh how comforting it is to talk to someone who is walking the same journey, who understands the “Lowe’s language” and can relate in so many ways.  It’s also scary to hear the struggles their boys have and know that many of those symptoms may raise their ugly heads in my son as well.  I need to be prepared and know the facts, but I also have to step back at times and just live.  I want to enjoy the beautiful boy God’s blessed us with here and now when he’s pretty much healthy.

Every case is somewhat different and we don’t know what symptoms he’ll develop.  Some days I want to look far into the future and be able to ask my future self what life has been like.  Maybe more than I anticipated, the unknowns are still here even though we have a diagnosis.  I could turn to fear if I dwell on it too much.  But just like I said to Grandma yesterday, worrying does no good.  Worrying won’t change a single thing.  At all.

Good news?  Zachary continues to make wonderful strides in his crawling skills and has even added his own version of saying “bye bye” to his couple of words.  Our next speech goal is animal sounds and a few body parts recognition.  Seems impossible right now – but crawling and sitting seemed impossible at one point too!   

Here’s some fun pics from the past few weeks.

Enjoying a warm fall day

First ride in a wagon.  He was holding on for dear life.  

We were rejoicing that he could actually sit in the wagon!

Speech therapy

Zachary's favorite past time is making these silly faces, and laughing at himself.  Uncle Ron regularly walks over to see us, but I really think it's because he wants to see Zachary's entertaining faces.

My little monkey

Evening snuggles 

Pressing on.  Thanks for your prayers and love,

Jessica