Sunday, July 24, 2016

5 Scriptures to Pray Over Your Children ~ Back to School

Back to school! Can you believe it? The first day for my 4 kids is just a few short weeks away. My kiddos grades range from Kindergarten to 11th grade - so very hard to believe, honestly! I'm usually the mom who is rushing through the aisles sifting through the already picked through school supplies trying to find what we need before school starts just a day or two later. Yep - I'm a procrastinator. That's why I'm quite proud to say I have a cupboard almost completely filled with the supplies we need. Yes! A month in advance?! Who am I?

I'm looking forward to getting back to the school routine, but there's a bit of fear this year. Zachary will be starting Kindergarten. I'm the skeptic mom all over again, unsure how my boy who is so very fragile and delayed can manage a classroom filled with typical 5 year olds. I remember these feelings from a year ago when I doubted preschool would be a good fit for him. Yet it worked - and he had a successful year. Here we are again - my heart is uncertain and I doubt once again. As I cling to what I knew just a few months ago - that school was best for Zachary, I turn my heart to prayer. I'm trying to trust God knows best and will watch over our boy and use this year to help him grow, progress, and even give me a few hours break that I do desperately need. I actually cling to God for all my kids - elementary school up to high school.




These are Scriptures I pray as I look towards the year ahead, prayers for all 4 of my kiddos.


  • "I praise you because my children are fearfully and wonderfully made; your works are wonderful, I know that full well." Psalm 139:14 


  • "I have no greater joy than to hear that my children are walking in the truth." 3 John 4 


  • "But grow in the grace and knowledge of our Lord and Savior Jesus Christ." 2 Peter 3:18 


  • "But the Lord is faithful, and he will strengthen you and protect you from the evil one." 2 Thessalonians 3:3 


  • "Flee the evil desires of youth and pursue righteousness, faith, love and peace, along with those who call on the Lord our of a pure heart." 2 Timothy 2:22 

Although there are so many unknowns of what the new school year will hold, I'm grateful for God's Word - Truth, Hope, and my Strength.

~ Jessica

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


Sunday, July 10, 2016

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.







Saturday, July 2, 2016

The Fragile Files - Weekly Link Up


The Fragile Files weekly link up is a chance to connect with other blogging families with medically fragile kiddos. Our weeks are busy, tiring, stressful, and yet full of JOY. God's little fragile children He entrusted us with are precious gifts. Daily chances to see God at work!

Frustrations

I feel like I spent more time dialing the hospital and doctors offices than anything else this week. Last week the Nephrologist ordered 3 special X-rays to determine Zachary's bone age and health. These are scans she orders once a child turns 5. Next week we start to be seen by an Endocrinologist who will also want and follow these bone scans as bone health is a big factor in Lowe Syndrome. These special X-rays can only be done at the hospital in Denver so we have to plan our day around appointments like this. I'm trying desperately to get the scans done before we meet the new doctor. (Once again will be a trip to Denver) We know these are X-rays he'd order anyway, we'd get them done after his appointment, and then we'd wait on the results. My goal is to have the results before we even show up!  (Something I've learned after hundreds of doctor appointments with Zachary - trying to know what they want in advance and getting it done.) 

Well - it's not proving to be simple this time. I've made numerous phone calls and they're still running into issues. All the while I'm looking at the time crunch, factoring in the holiday weekend travels, and realizing we're running out of time. 

You fragile kiddo parents know this all too well, I'm sure!

Our other frustration this week revolved around URINE. Yep. Such is life with Lowe Syndrome - ALWAYS needing urine samples. Getting a urine collection bag to stick on a little guy, hoping it doesn't fall off and spill in the diaper, or that he poops while he's wearing it?! Yep - sorry if that's TMI - but that's my week. As I sit here typing this we're on our last urine bag in the house and I'm praying we finally get a good sample!  We need to take it and head over to get blood work done this morning. 

There's always something!


Joys



We've had our frustrations this week but so many joyful moments as well.  My new favorite therapy session is every Thursday afternoon. Zachary's speech appointment used to make me leave in tears. Between his lack of cooperation to all the screaming, I dreaded that hour of the week. Now he joins right in. He tries to verbalize in that 1 hour session more than I hear at home all week. I see him interact with Kari, I see his attention span and patience growing, I see him trying to use her communication device, and I smile. Big smiles. I sit in that little therapy room thanking the Lord for progress. 



Zachary's new favorite cartoon is Blue's Clues, specifically the old movie Blues Big Musical. All the music and dancing - he loves it! In the middle of the movie there is a segment with large piano keys and they discuss the music's tempo and select a melody. EVERY time that part come on, Zachary immediately stands at the piano and starts playing. There's so much going on in that little head of his. Maybe I'll have another little pianist!

My Outlook




There's frustrations and joys each and every week. We battle eating daily. It's easy to worry he'll never walk, what life will be like for him as he gets older, or that his kidneys will one day fail. But I end each and every day hooking my sweet sleeping boy up to his feeding pump and I smile deep down inside. I'm so grateful for it all. The high moments and the low moments. Because I wouldn't trade my boy for anything. He's such a gift.


Link Up

  • Link up any post related to your medically fragile child or a post that would be a resources to a family with medically fragile or chronically ill children. We will choose a post from the previous week to feature each week.
  • If you do not have a medically fragile child but have a link that would provide a resource for our families, feel free to link up.
  • When linking, please tweet, pin, and share about the link up to help us grow using the hashtag #fragilefiles.
  • Grab a button and place it in your sidebar and help us grow!
  • Enjoy and comment on the posts of a few other link up participants.
  • Join our Facebook community of Fragile Files Bloggers HERE.
  • Include the Fragile Files graphic in your post. 






Monday, June 27, 2016

Strawberry Chicken Salad

Summertime food is my FAVORITE! I love quick meals that start with the grill and are complete with a good fresh salad. I'm joining in a summer recipe blog hop - so you get another yummy recipe!

At this busy stage of life with therapy appointments, doctor appointments, lab draws, work, I don't have the time I used to have.  Quick and easy is a must these days. Here's a quick and easy NO COOK delicious salad!




Strawberry Chicken Salad

Lettuce
Chicken (I love buying the frozen pre-cooked grilled chicken!)
Sliced Strawberries
Feta Cheese
Sliced Almonds
Honey Red Wine Vinaigrette

Honey Red Wine Vinaigrette

1/2 C. Red Wine Vinegar
1/2 C. Honey
1-2 cloves garlic
1 tsp. Salt
1 tsp. Pepper
1/2 C. Oil

In a blender combine the vinegar, honey, garlic, salt, and pepper. While blending, add oil slowly.

Summertime salads - the BEST!

Sunday, June 26, 2016

The Fragile Files - Weekly Link Up



The Fragile Files weekly link up is a chance to connect with other families with medically fragile kiddos. Our weeks are busy, tiring, stressful, and full of JOY. God's little fragile children he entrusted us with are precious gifts. Daily chances to see God at work!

THIS WEEK was a busy one for Zachary. It started off with a bang. Monday Zachary needed his labs done.  We needed to get blood and urine tests for his nephrology and hematology appointments on Tuesday. Unfortunately the lab considered his lab work orders expired and after 4 phone calls I finally had the correct orders emailed to me. We hurried to the lab wanting to get the blood drawn so it could be processed in time and the results could be sent to our doctor before the next day's appointment. Here's a fact for you.  A child will NEVER pee in the little bag in his diaper when you want him to. Zachary always have to have urine tests - I tell you, it's a party over here! Since we could not get Zachary's urine when we needed it we headed home - I collected it later and rushed it over before they closed. Why do I always wait until the last minute?  I should learn my lessons.
Tuesday was doctor appointments.  You can get a glimpse of it HERE.  We have a wonderful Nephrologist and Hematologist.  So grateful.

The rest of the week for Zachary and I was filled with therapy appointments, tube feedings, medicines, and cleaning up vomit.  Yep - we made it a week without throwing up.  I guess a week is his limit!

Here's what I'm praying for this week...

1. Timing of getting some big X-rays done before his next big appointment in 2 weeks.
2. Quick insurance approval of his medical crib.
3. I'm still praying our boy surprises and starts to WALK. Praying sometimes in faith and if I'm honest sometimes with hidden doubt that it's possible he'll really walk.  But still praying none the less!

Check out other Fragile File link ups HERE!
Friday, June 24, 2016

Grilled Thai Chicken

It's HOT so far this summer, which means we are living off of oven-free recipes. The older my kids get and the busier life continues be, the less I want (or have time) to cook. This dinner does not require an oven and is super easy.  I think I cut this recipe out of a magazine probably 10 years ago and somehow I haven't lost this well-worn page.  That's a miracle in and of itself! The recipe was originally for chicken wings, but we often just use chicken tenderloins or chicken breasts. It's a favorite!









GRILLED THAI CHICKEN  
Chicken Breasts (we like to cut and skewer)
Olive Oil
Salt
Black Pepper
Thai Honey & Spice Sauce *recipe below

Drizzle chicken with oil and season with salt and pepper. Grill chicken until done.
Drizzle half of the Thai Honey Sauce on the grilled chicken. Serve the remaining sauce on the side for dipping.

THAI HONEY & SPICE SAUCE
1/2 Honey
Zest of 2 Limes
2 T. Soy Sauce
1 T. Chopped Cilantro
1 tsp. Salt
1 T. Worcestershire Sauce
Juice of 1 lime (about 2 T.)
2 Garlic Cloves
2 T. Red Pepper Flakes
1 tsp. Black Pepper

Place all sauce ingredients in a bowl and stir well.

That's it!  Serve with a fresh summer salad and you're set!

We've also made this this with chicken wings and after grilling put in a crockpot to keep warm for Super Bowl food, etc. Can't go wrong with this one.  Enjoy!

Wednesday, June 22, 2016

More Doctor Appointments

My mind is spinning after 2 ½ hours of doctor appointments.  Lab work results fill the majority of our face to face time with the doctors.  So many numbers.  Ferratin. Calcium. Protein. SED Rate. Creatinine. The list goes on and on. The words are big and the numbers they read off don’t mean much to me. Medicines are adjusted per the test results. We leave with orders for more lab draws next week to re-check after a week with upped medicine doses.  We leave the busy office with our heads spinning but grateful hearts.


I could not ask for better doctors.  They know their stuff. Big time. One doctor somewhat familiar with Lowe Syndrome, the other doctor not so much.  We learn he lies awake at night thinking about Zachary and what might be causing this and that.  A large hospital doctor who went straight from surgery to the little office room with our little guy.  I learn more in that hour+ with Doctor VD than I have anywhere else.  He takes his time and re-teaches us every single time.  I walk away tired, grateful, and a little bit more intelligent! He has his hypothesis about this and that and I think he’s right.  I’m just so grateful he cares.

We head to the elevator with updated prescriptions, multiple pages of lab orders, a big xray to schedule, and a precious boy.  I’m thankful for these exhausting day trips. Just Peter, Zachary, and I.  Three months until we do it all again.  Our little date in the big city.