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.


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