Clarity!  What a beautiful thing.

It’s been a long & emotional few days but given the huge amount of support we’ve received lately, I owe a blog post to give updates on what we discovered at Cleveland Clinic.

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On Sunday we headed to Ohio in preparation for our visit to the Cleveland Clinic on Monday.  Some time with Nana & Papa always makes things better, especially on the day before an important doctors appointment.

“Can you turn on Elmo, Mom?”

There is no doubt that the Cleveland Clinic is amazing.  We met with a fantastic pediatric neurologist who did an incredibly thorough job of understanding what’s going on with Mitchell.  Here’s what we learned:

• Mitchell is experiencing cyanotic breath holding spells.  These are usually caused by either a change in the child’s breathing or a slowing of the heart rate. These reactions may be brought on by pain or by strong emotions.  In cyanotic spells the child’s face and lips turn blue and then they lose consciousness.  And in case the doctor wasn’t sure, Mitchell confirmed that it was cyanotic when he passed out smack dab in the middle of the appointment while the doctor was in the room.  Good timing little buddy!
• As for the suspected seizures, it’s not what we thought.  Mitchell is actually experiencing hypoxia due to the lack of oxygen during the breath-holding spell.  Think of a computer rebooting.  His body is doing the same thing after some of the episodes.  Although he is not responsive while in this hypoxic state, the Dr. said this is not harmful because he is breathing.  I’m not exactly comfortable with this yet, but we will take it one day at a time.

We have a few more tests to confirm everything we discussed, and then it’s back to normal.   Or our new normal as I’ll call it.  Unfortunately this might get worse before it gets better because this type of situation peaks between 18 months – 3 years so we are preparing to have many days with many pass-out episodes.  It gives Terrible Two’s a new meaning.   But by age of 6 or 7 at latest this should go away completely.  Hooray!!

So now we do our best to manage this.  To be honest it feels slightly overwhelming right now, but we will just take it one day at a time.  There is a huge part of me that wants to snuggle him up forever and never let him go, but I realize it’s just not possible.   So we will choose to focus on the good!  And there is plenty of good for this cute, sweet, lovable baby boy of ours!   And despite the fear this causes, we are SO incredibly lucky!   Mitchell is able to live a normal & happy life, and we finally know that this is not going to cause him any harm.

On another note, Mitchell just can’t stay away from the doctors office (perhaps he will go to med school someday?).  Tonight we found out that both he and Makenzie have left ear infections.  Looks like we might be headed for tubes in his ears.

Our deepest appreciation for all the thoughtful notes and positive thoughts!

Much Love,

Erin

For you Little M

Talk about being blown away by support!  We know that you all have your own busy lives but since posting about Mitchell’s frequent pass-out episodes a few weeks back we have been inundated by calls, texts and messages from people who have experienced this and wanted to share their insight, and from people who just wanted to say that they care.  Thank you everyone!   Our kids are so lucky to be so loved!

M & M say Thank you!!

But on a serious note, we are still in search of answers.  The pass-out aspect seems to fall clearly in the category of the involuntary breath-holding syndrome, but we are still baffled by the (potentially) seizure-like activity that sometimes occurs after the episodes.   Our little guy had an awful episode this week and spent about 7 minutes in an unresponsive state.  So scary.

After weeks of doctors visits and few answers we decided to head to the best of the best and we were highly fortunate to get an appointment with a well-known pediatric neurologist at the Cleveland Clinic.  We are thrilled!  We are also nervous but overall we know that this physician could be the one to help us gain clarity.

Our little boy ready for more carefree days at the park!

We will ideally know more early this week.  We will keep you posted.  Thank you SO much for all the good thoughts!

Much love,

Erin