Tuesday, January 28, 2014

7 weeks home

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Here is a quick-ish update on our life at the moment.

Elliott - Elliott is doing great! He is bonding amazingly to Daddy and Momma, and knows not to hug or kiss other people.  He speaks and repeats a ton... and I do mean a TON!  People keep saying he talks more than my girls, which is really saying something ;)  He is busy, mischievous and all little boy.  Right now he is playing with a Thomas the Train and he pulls it back as far as it can go and lets it chug itself off the table - at which point I hear a little chuckle from him!  He is smart and wants to explore and do everything - BUT he also tries really hard to follow the rules and does a good job of that most of the time.
Medically he is a mystery still.  I was able to get a little more information which basically told me I had less information than I thought.  The orphanage DID do genetics testing to see if he had Freeman Sheldon Syndrome (Arthrogryposis) and the results were that he DOES NOT!  This doesn't really come as a huge shock since he has NONE of the chief characteristics and is actually sort of opposite of arthrogryposis.  His scoliosis is extremely severe and the Pediatric Orthopedist in our city took a look at his x-ray and said she didn't even want to see him - she referred him to the head of the Orthopedic department at Children's Hospital and we will be going there next week to hopefully make a plan for him. (Meaning surgery, traction, bracing etc...)  He has super loose joints, soft velvety skin, no muscle tone, dislocated (well lots of dislocated things).  A lot of these things point to a connective tissue disorder. We won't be able to see the geneticist until April, but I'm hoping to get a little more information before then. ;)

Me and my oldest son (who is eating a vitamin)

Elliott had the flu for a few days so he got to sleep in our room.

One month home - I love how Lance is looking at Elliott who is posing perfectly.

Lance - Lance has been sick off and on with virus type things and when he gets sick he quits eating.  We were finally able to get a few pounds on him which was a huge celebration, but it was taking 1-2 hours to feed him 3 ounces of food by mouth and of course he needs to eat more than once a day.  That meant that I was spending roughly 5-8 hours a day just feeding Mr. Lance.   We had a swallow study done and learned that he was aspirating just about everything he was eating and oral feeding was absolutely unsafe for him.  He had a Gastronomy tube placed last Friday and spent the weekend in the hospital and came home Monday night.  He is doing really well with it, although we are still learning what his little system can handle.  This means 4 bolus feeds during the day and a continuous feed at night.   The time in the hospital was priceless for mom and baby.  I had several days of nothing to do, but focus on Lance.  I learned more about his personality and enjoyed snuggling with him lots! He REALLY loves to be held :)

Getting prepped for surgery

The doctors argued over who got to carry Handsome to the operating room.

Post op - groggy and puffy

The result

Still puffy and not a bit happy about this hospital\surgery thing

Feeling better, but not home yet

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