In His Grip and By His Grace

I read a fundraiser letter today for Cobb Pregnancy Services.  The person ended her letter with "In His Grip and By His Grace."  I liked that so I'm using it today to blog about the latest with Ethan.  Things are happening fast!

First of all, good news, he weighs 16 pounds 12 ounces (or so).  We are on a rigid feeding schedule every 3 hours, but it is working so I'm commited to it for now.  I even got us up at 4 this morning so we don't have to skip a feeding today because of a doctor appointment.  Yawn...but EVERYONE tells us the more Ethan weighs, the stronger he will get.  Come on 17 pounds!!  That was the goal for him by 9 months, and that deadline is fast approaching us on Friday!

We did see Dr. Williams last week.  He is putting Ethan in a STARband helmet.  You can see some amazing, sweet pictures at http://www.starbandkids.com/.  Some of the before and after pictures in the documentation makes me realize just how much this will help Ethan.  His head shape is so OFF because of him laying on his side so much to eat.  And that fights with his torticollis because he now has a flat spot and that is where his head automatically falls unless he is "on" and is holding it a different way.  Unless we position him just right, he sleeps on that flat spot...which just makes the head shape, neck muscles and possibility of surgery worse.  We DO have surgery scheduled for the middle of June.  However, his therapist is really excited about getting him in his "motorcycle helmet" and seeing what we can accomplish between now and then.  The doctor is fine with cancelling surgery if it isn't needed.  He would prefer that, too!

This is a picture of something similar to what Ethan will be wearing.  My first thought when I saw this is "ast least the little boy doesn't look MISERABLE!  He will have to wear the helmet all day, every day except for maybe an hour (for bathing and some of his therapy).  Please pray for God's grace for little Ethan (and for us).  He has to sleep, eat, watch t.v., play in this helmet and his neck muscles are NOT strong enough yet for him to hold his head up.  He is going to have quite an adjustment!  The therapist says this will help strengthen his neck, but he already works so hard...I'm just a sad Mommy today thinking about this next phase.  Glad they have this kind of thing to help, but sad nevertheless...

In His Grip and By His Grace...we can do this!

We did get the boys' hair cut on Saturday.  Jerry Potts from Bass Hair Salon made a house call and trimmed their hair.  They both did really well.  Colin had less patience and really just wanted to know what Jerry was doing.  When we held his head still, he got "sad Colin face" so we only trimmed around his ears.  We owe a huge thanks to Jerry for helping us out!

No news = good news!

There really hasn't been much new to report...and I am thankful!

Colin is growing, growing...and is really wanting to crawl.  He gets on his hands and knees and rocks...then does a belly flop and "swims."  Allen and I can't wait to get him in the pool and let him splish-splash!  He surprised us both this weekend by yelling out his first word.  Mama!  Allen and I are both shocked...everyone said they would say "da da" first and they've both said "ma ma" first!  I am working with them both so they will hurry up and add "da da" to their words!!

Ethan is, well, Ethan.  He has a head FULL of hair.  We are trying to figure out someone that can come here and give them both a trim (nothing drastic, just really to shape it up so they don't look scraggly).  He jabbers and has the sweet, soft voice.  When he says "ma ma" it is hard to get anything else done but just talk back to him...and smile lots!  He is still very unpredictable with the throwing up, but he is ssslllooowwwlllyyy gaining weight.  It seems like he was stuck at 15 pounds 12 ounces for days.  Now the number is 16 pounds 3 ounces.  We are taking him to the cranial-facial doctor Thursday.  He should look at Ethan's head shape and his torticollis and make some recommendations on treatment.  His physical therapist feels sure they are going to recommend a helmet.  All I can think is "what else can this child take?"  I am so thankful that God's grace is sufficient.  I don't know how much more this mommy can take!  He has made some GREAT strides with his torticollis in the past few weeks, so I am really hoping to avoid any extreme treatment (like surgery or a brace) for that.

So things are probably just pretty "normal" for us right now.  And that is a good thing!

The doctor said "I don't know why you are here!"

I took Ethan to see Dr. Rastegar, a cardiologist at Sibley Heart Center, today.  We were referred to him by Ethan's pediatrician AND his pulmonologist.  They wanted to make sure his pectus (sunken chest) wasn't affecting his heart (and lungs, but we won't know that until later).

We walked (Ethan strolled) into the office.  It was so calm and quiet - there were only two other families in the waiting room.  We were called back and the nurses took Ethan's history, blood pressure, measured the oxygen in his blood, did an EKG and weighed him.  They were both ssooooo sweet!

They put us in Room 1.  30 seconds later, Dr. Rastegar came in and said "I don't know why you are here!"  I had NEVER heard such sweet words in one of Ethan's doctors' offices before!  He does want to do an echocardiogram in a year just to make sure everything is still good.  But...he said "Ethan's heart is perfectly normal.  His heart rate is good, blood pressure is normal...there is nothing I can do for you."

I came home and wrote the office a thank you note.  It was such a pleasure to be in an office full of warm, caring, CALM people...and to know they won't be one of our regular offices!  I was almost sad!!

Colin is really growing.  He is sitting up and playing as I am writing this.  If he topples over, he just rolls onto his tummy and keeps playing.  He has been really vocal the last few days...still just babbling, but I think full sentences are coming soon!  HAHA!

Ethan is in his Nap Nanny next to me on the sofa.  He just finished eating about 30 minutes ago, so still has a little "quiet time" before I get him up to play.  We changed his formula this week and I think we are seeing some improvement.  He is still throwing up, but not as often and not as much.  As I started typing that, he spit up a little, but I will take it!