Update from Home

Praise the Lord! We've been home almost a week! When we left Duke we were definitely ready to get home but were also anxious.  The doctors that saw him cry asked us if we were sure we were ok taking him home - honestly we were nervous about getting him away from the medical help but part of me had hope that getting him into a normal environment would help him recover better.  Keller was still needing pain medications and a sedative and taking him home meant weaning him off of those medications at home.  He cried a good bit of the way home and that can make a 2.5 hour drive seem like an eternity.  Saturday night we proceeded to move into our new rental (do we have good timing or what?!) and try to get everyone settled for the night.  The weekend was a blur of boxes, medicines, and trying to soothe a fussy baby.  

Monday morning Phillip went back to work.  Tuesday morning we had an appointment with the pediatrician.  We basically treated it as a hospital follow up/4 month appointment.  He is 11 lbs 3 oz and 23 inches long (Whoo!)  He did get vaccines and we took Norah along so she could get a flu shot.  Phillip and I also got our flu shots that day.  Keller was puny that afternoon and overnight started having some vomiting and diarrhea.  Wednesday we went back to the doctor. It's likely that most kids wouldn't have had to go back but because Keller is kind of complicated the doctor wanted to lay eyes on him.  He hadn't lost any weight and by the time I was ready and able to take him it seemed most of it had resolved.  I am pretty sure it was a side effect of Rotateq - the doctor said that it is pretty uncommon but if something uncommon was going to occur....it would be with Keller.  I couldn't agree more! 

The rest of the week has been good.  Busy but good. For the most part we are moved in.  Norah is loving "Norah's house."  Keller still has very fussy times.  We are trying to figure out what exactly is behind them.  It could be any number of things: medication, weaning off medication, pain, personality, gas, still just not feeling good, not knowing what to do with his extra energy.  There also is a matter of trust.  Out of Keller's lifetime he has been in the hospital about 45 days. (Please, know this is not a complaint, but a fact.  We have met so many people that have spent much more time there).  He has spent many more days at doctor's appointments.  It is going to take some time to gain his trust, for him to learn that something bad is not going to happen every time he is moved, undressed or changed.

The first time we saw him after his surgery. 

Two and a half weeks later!

Consults have been made for Keller to have speech therapy to get him "back on the bottle" and physical therapy to help him catch up on some of his motor skills.  We are still waiting to hear about when and how those things will happen.  His next appointments are this Thursday in Greenville.  His cardiologist in Greenville will be the one continuing to take care of him we see him first Thursday. Then we will go to his GI doctor to discuss calories and how to get Keller back on a bolus feeding schedule.  At this point Keller is attached to his feeding pump 24 hours a day.  It will be nice for him to be a little more mobile.  The doctors have told us not to be around people who we know have been sick.  They also said that we need to have a life and that we can ease back into the world.  It makes us nervous especially considering it's flu season, but we might just start popping up around town again. :)

Norah is so gentle with him. In this picture she had just said "I'm the big sister."

Thank you everyone again and again for your prayers and encouragement. You have blessed us.  You have left us with tears in our eyes and with no words.  We have felt His love and presence from Him and through you as well.  It's amazing to hear just how far Keller's story has spread.