What Comes Next?

Here we go again...

Looking for answers, we have a list of symptoms, the referrals are being sent...

Neuropsychologist...Check

Behavioral MD...Check

Pediatric Gastroenterologist...Check

Thyroid test...Check

Safety bed being searched for by DME...Check, Check, Check (3 medical supply companies :-) )

Call into insurance to see about coverage of needed safety bed...Check

Starting our first full homeschooling year...yes check for next week 

And book completely launched...as if the rest of life happenings wasn't enough!

All these words running through my head,

 AUTISM,

 LARYNGALMALACIA, 

NEUROMUSCULAR DISORDER, 

LARYNGAL CLEFT,

 HYPOTONIA,

CELIAC, 

SAFETY BED...

what could possibly be next for us?

We have an active and absolutely awesome little man who is having some anger and self-harming issues, we just got done discussing these with his doctor today. 

On top of the feeding tube and all the testing he has gone through we are noticing some regression in the strides he has made to date orally and so upon further consultation with the ENT we are possibly being directed to Seattle Children's Hospital.  

Another set of new doctors, but our hope is that because their specialty is children we will get the answers we need, and most of all DIAGNOSIS! 

That magical term that makes it easier to help our son fight and possibly win the health battle we have been raging since he was 5 months old. 

Yes, I said WAR.

That is what this last 1+ years has felt like. 

And I want to win it for my son, or help him find the care he needs to at least live safely with what he has.  

The crazy part is our oldest child has been the "typical" one, nothing abnormal or delayed other than asthma and some anxiety from the events of the last year with me being at the hospital separated from the family with the baby. 

 But if the Laryngalmalacia is a factor her "asthma" that the doctor's have never been willing to classify as such could mean she has a very minor form of it along with the other 2 kids. 

Finally it would be something that answers all the questions and is livable, and would tie all my kiddos together and give us answers for her chronic symptoms and her need for inhaled steroids for 8 months of the year. 

God, help me I am exhausted lol.

But I have to be like Dory on Finding Nemo,

"just keeping swimming, just keep swimming, just keep swimming, swimming, swimming..."

Because as parents, not just parents of kids with medical complexities, PARENTS! period that is what God has called us to do...Take care of these children to the best of our ability, you WILL be given the strength when you are just physically and emotionally exhausted and don't think you can do it one more minute. 

 Cry your tears and wipe them away with your fears for the moment. Hug those babies and have a super goofy dance party in the living room or make memories with an adventure because it could always change at a moments notice.

I am guilty more often than I should of letting my emotions and fears overwhelm me and it makes me LOUD, it's embarrassing to admit; but I am trying to change that. 

So I say those things for me just as much as I do for those reading this. Parenting is messy!

But I am finding the beauty in the mess, happy in the tears, joy in the exhaustion of it all...it's going to be okay, answers I can feel it are on the way.

GO TEAM NEEDLES!!