Merry Christmas!

Everyone seems to look backwards at Christmas and review their year.  It's a good chance to glean from your previous year what you can change and do better in the next.  I have had a lot of time lately to reflect as well.  It was just a few days after Christmas, last year, we started finding out about all of Keller's uniqueness.  We were scared and overwhelmed at what our possible future would look like but we also had a peace about it.  While it's hard to hear the doctor say "your son has large holes in his heart and his organs are in strange places" but he also told us that Keller had a favorable case and we had to believe that.  

God repeatedly uttered to Phillip and I "I will sustain you" and He did.  I can't say I never doubted.  The admission Keller had to Vidant in September, I remember standing in our Ronald McDonald House crying and asking Phillip if God had told him that Keller would live.  I had started to doubt if "I will sustain you" meant just the three of us.  God had told me it would be a bumpy road I was just realizing the difference in our definition of "bumpy." But with God's help our boy pulled through the fevers and fits and we looked ahead towards the "big surgery" and God delivered His promise.  

Yesterday marked 3 months since his surgery date and our boy is thriving! 16 lbs and 6 oz! His cheeks are pink, he wants to sit up most of the time, he is rolling over and sometimes can make it all the way back to his back. He can pivot on his back and scoots on his back across the room.  He chews on most anything he can reach and this week a little tooth popped through.  Which makes me feel better because I had an unrealistic thought a few times that since everything in his body is off he just wouldn't have teeth.  Sometimes he has so much energy he just flaps his arms and smiles.  We are most surprised by his personality.  He is incredibly laid back.  He is really smiley and generally just a happy kid.  He babbles, coos, laughs and occasionally giggles.  Of course, he had to learn the "da" sound first and babbles "da da" all the time.  What a stinker! Doesn't he  know how much sleep I have lost because of him! ;) 

The major clue that Keller is not "normal" when his clothes are on and his scars are hidden is his feeding tube.  I typically try to disguise it in a "Life is Good" cinch top bag.  We can hook it to his car seat and people are none the wiser, unless they see the tubing or if that tubing comes disconnected and milk spills out.  We often get asked by people that know him how long he will need his feeding tube.  The answer is, we don't know. He is doing very well in therapy.  He has been seen in our home by an occupational therapist 3 times now.  I watched her feed Keller with a spoon on her last visit and she gave me instructions to help Keller eat with a spoon with the goal of trying some everyday.  Right now we are sticking with rice cereal but if he continues to do well we might start mixing some baby food in as well and let him slowly start experiencing other flavors.  His main source of nutrition will be his feeding tube for a while.  He gets 4 meals a day (about 125 mL over 2.5 hours) and is fed continually overnight.  He will need to go without using his tube for 3 months before they would get rid of it and as it stands we are far from ready.

Cardiology wise Keller is doing well.  Our follow up appointments are now being scheduled about every 3 months which is a wonderful break from our previous schedule.  His heart is recovering so well in fact that the doctors have to listen very closely to hear his murmur.  He still on medication (5 of them) and likely will be for a long time to come. The possibility of another surgery has not and likely will not be taken off of the table.  We just have to wait to see what happens.  We have learned in the world of Heterotaxy there are always surprises both good and bad.  Likely, one day we will get another one but right now, we are enjoying our little boy and our little family.  

Our princess turned 3 and had
 a Brave themed party, 

Our eyes have been truly opened to the world of childhood sickness.  While I always knew about it but it was more-or- less the St. Jude's telethon and occasional hearing through the grapevine that someone's sisters niece was sick. Hospital stays, doctor's visits, and social media have put us in contact and made us aware of so much more than what is going on in our lives. I am moved to tears every time I see my boy under our tree (what a great gift!) and I think of all those that put their babies, some of them more than one, to rest this year.  It's makes it hard to even breathe or swallow, so, we pray. 

Thank you to all who have kept us in your prayers.  You have blessed us all! We love you and sincerely appreciate everything you have done! 

Merry, Merry Christmas!

Merry Christmas to all, and to all a good night!