Learning to breathe again.

Psalm 150:6.  Let everything that has breath praise the LORD. Praise the LORD.

Post op week one.

 We finally feel like our heads have come to the water's surface.  We are no longer drowning in our fears,  and sadness for Jacob's experience, and postoperative difficulties.  The rhythm of domestic life is slowly returning.  The waters are calmer and we even occasionally are learning to find enjoyment in floating on our backs and drinking in the beautiful view around us.  We are learning to breathe again. 

Over the last couple weeks, we have waxed and waned through victories and frustrations in our post operative healing.  At our followup with our surgeon, he saw what we had already seen in Jacob's palate....a fistula (hole.)  He assured me it was not likely a result of Jacob's fall (see last post) but more a result of his surgery being so extensive.  Then, just a few days ago, we saw another one.  This one is under his left nasal region and he does get food coming through this hole and out his nose.  It has been discouraging for us. 

On the victory front, Jacob has made remarkable improvements since the last post.  Not only is he waking up just once per night, he is now able to breathe much better making sleep more restful. We have been able to get pureed foods into his mouth and it has been fun to watch him learn how to move the food with his tongue toward the back of his throat.  He is also keenly interested in how our mouth moves to form words and he will often try to mimic them.  It is exciting to see this and my heart is aching for the day when I hear him say, "mommy."  As Jacob has made progress, I have purposefully looked back to remember not only where we have been, but how far we have come, and remind myself of the broad network of support that is loving us during this time.  I think it is an imperative exercise when working with a child that has special needs.  The progress of one day may seem so minimal but the progress of a month and sometimes even just a week can be incredibly encouraging.  

Just finished my first boxing match....you should see the other guy!
Post op week 2

We are forging forward in this work that needs to be done to help Jacob "catch up" in his delays.  I visited our P.T. friend who is an excellent developmental therapist and she thought Jacob was doing great.  She said, "If he's not age appropriate in his motor skills now, then he is very close."  This was welcoming news as I had worried we'd take some steps backward after surgery.



Post op week 2-3

 We have seen our early intervention speech therapist in home for about a month now.  While Jacob does not have any expressive language, his receptive and nonverbal communication is amazing.  He understands a lot and has been communicating very effectively with the sign language we have been doing.  We have loved doing signs with him because it requires so much eye contact.  He will look us in the eye when doing a sign to make sure we have seen it.  The ability to communicate and be understood brings such power to bonding!

He has definitely developed "stranger anxiety" since his surgery.  We notice him making less eye contact while we are out and about and at home he is demanding much more "hold me" time. The smiles also seem a bit harder to come by but we are working on it.  We will soon begin doing scar massage to his lip area.  I am hoping this will be something he will adapt to soon and won't cause him much discomfort. The surgeon said his puckered upper lip look will slowly spread out over a two month period. 



Post op week 3-4


You may wonder what will happen with the holes.  The one in the posterior part of his palate may close on it's own.  This is what we are hoping for.  The anterior one will likely not change.  Both will need another surgery if they remain unchanged and open but nothing will be done for at least a year when Jacob is between 3 and 3 1/2 years old. 

We are holding fast to the Lord's promises.  We might be teetering on the edge of an immense ocean that we feel could swallow us at any minute but we know our feet are planted firmly on a rock.  Not quicksand.  A firm, solid, unwavering rock with strong foot holds for our feet to weather the crashing waves.  I have had to remind myself and force myself to look back from whence we have come.  To force myself to come face to face with each "drowning" we have felt and remember who has been our strength.  I remind myself that God is in control and He loves Jacob more than I could ever fathom.  Two holes in his palate are nothing compared to the plans God has for him and God is in control of his future. 

Just as Jacob has had to learn to breathe anew, so are we.  We are praising God for his love of us, our family, and of Jacob.  We are learning to put our faith for his functional outcomes and healing in the one who created him, not in a surgical procedure.  The one who knit him together and knew him before he was born.

Isaiah 42:5

Thus says God, the Lord,
    who created the heavens and stretched them out,
    who spread out the earth and what comes from it,
who gives breath to the people upon it
    and spirit to those who walk in it....