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.

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.

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.