Another Diagnosis Added to Our Plate: The Latest

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Earlier this week, I began a blog series called “Another Diagnosis Added to Our Plate” which shares the story of our eight-year-old son, Bubs.  I encourage you to begin with Tuesday’s post.

The combination of Bubs, Little Man, and life began to eat away at my energy, emotions, and spiritual state.  I was beyond rational.  Looking back, I realize my eyes were no longer focused on my Savior but instead looking at the horizon.  A horizon that provided me with no hope and I only saw the frantic situation in site.  I stopped thinking about the baby steps needed and became overwhelmed with what had to be done in a next few months. 

In the blog post “I Don’t Have to Stress Because…” I shared my low point.

But, what I didn’t share in that post is that one of my amazing friends invited us over for supper that rough night.  My friend’s goal was to allow me to relax and have a change of perspective.  Secondly, her husband is a pediatrician and she prepared him to be a sounding board for us. 

So while this amazing friend played with our kids, my husband and I talked for an hour with her husband about the illumining problems we were facing.  After listening to our story (much of which he already knew), he suggested we fill out Connor’s Forms to test for ADHD.  He explained that no matter how much therapy and time you give to a child, if he can no focus, he can not learn at his capacity.

While this wasn’t something new to my thoughts, I was hesitant for two reasons.  One, Bubs is a heart baby and what would meds do to his heart?  Second, do I really want my child on meds?  Aren’t meds just placing a bandaid on a big problem?

But after talking it over, praying, and realizing that we were running out of options, we decided to further research this avenue.

The next week I called Bubs’ cardiologist and learned that 60-70% of  heart babies are on some form of ADHD meds.  (Holy cow!  Why weren’t we told this?)  After a lengthy conversation of trends they see in heart babies Bubs’ age, I realized that there may be a lot more to this focus problem than I thought.  We received blessings from his cardiologist and went on to step #2 – filling out the forms. 

Long story short, the forms concluded that Bubs is definitely dealing with ADHD – our latest diagnosis. 

So, we began the meds.  Both our friend and family ped said we would know immediately whether the medicine would help Bubs.

And we knew. 

We felt like we finally had our baby boy back.  I wanted to cry in delight.  It was precious, overwhelming, and praiseworthy. 

But after three days of meds, Bubs came home from school back to his normal sensory-overloading self.  He was loud, unfocused, and on edge.  While we worked on therapy assignments, I had a literal physical sense that my son was being ripped from my hands.  Like I had finally gotten him back but a force was pulling him away.  Almost hyperventilating, we ended therapy work early so I could remove myself from the situation to pull myself together. 

The doctors told us that it would take time to find the right med and the correct dosage.  I hung on to the belief that this downward slide was simply a dosage issue.

Praise God that it was.

Currently, we are still trying to figure out the correct medication and dosage for him but I can say – with a loud praise to God – that we have many more amazing days than rough ones.  It is nothing but amazing.  Others have said that it seems like Bubs is more relaxed and not on edge.  His reading has improved and his attitude is so much better.

For the past eight years, I have physically tensed up knowing that most interactions with Bubs were going to be a battle.  Out of habit my body continues to tense with anticipation but now I have the surprise when a battle is not engaged.  While Bubs’ initial response may be to yell at me, he now immediately apologizes when addressed.  Therapy is going four times better as he is able to focus and remember. 

Nothing short of a miracle.  Yes, I feel like I have my baby boy back.

Eight years. Newborn open heart surgery.  Speech.  Occupation therapy.  Visual perception.  Sensory Processing Disorder.  Pragmatics.  Language Processing.  Phonological awareness.  Auditory Processing.  And now…ADHD.

It has been a roller coaster of energy, emotions, and spiritual learning.  And I understand that our roller coaster is not over.  (Bubs didn’t have the best cardiology check up this summer which brings up new issues that we weren’t expecting.) 

But God has taught me so much about myself – more than I think at times I can process!  And He has taught me so much about who He is and who He wants to be in my life.  He continually tells me:

Come.  Sit at My feet.  
Rest.  I see the whole picture.  
Trust.  For My hand will guide you.

Dear God, Thank You for never leaving me nor forsaking me.  Thank You for continually taking my hand to guide me even when I drop Yours.  Thank You for lovingly taking my face and directing it up to Your eyes.  In Jesus’ name…

I understand that our roller coaster is kiddie compared to ones that some of you have to ride.  I don’t tell our story out of disrespect or disregard for your situation.  But, I do pray that you will find encouragement in this blog series because God is present in our lives no matter what He has placed on our plates.