Follow Up Appointments

Keller outside in his new bouncy seat.

Keller has had a few follow up appointments in the last week.  Thursday he saw his cardiologist and gastro-enterologist for the first time since surgery.  Yesterday, he was assessed for home therapies.  

He weighs 11 pounds and is 23 1/2 inches long.  That means he is still not growing and gaining like they would like.  He had an echo and an EKG.  His cardiologist told us that he was happy the diagnoses he had given us were confirmed by the surgeon, so there weren't any surprises.  He also said that the hole in Keller's heart was bigger than they had been able to see on echo.  Not only was it lacking vertically, he was also missing tissue front to back.  In fact, he said "ginormous" which is funny because that is the word that the surgeon used to describe it as well.  Keller is also still having pulmonary hypertension, he is on a medication called Sildenafil for that.  He will most likely remain on is for a few months until his heart learns how hard to pump again.  The biggest concern right now though is his leakage in the mitral valve.  We were hoping everything in Keller's heart would be fixed in one surgery.  Keller's body showed us that he needed the surgery sooner than later and because of that it currently looks like he will need another surgery.  His valve is leaking a "moderate amount." This is, obviously, something they will watch closely.  His doctor said that he is hoping Keller will be able to wait until he is "school age" before the next one is needed.  

This news shocked Phillip and I.  It saddened us that we are not yet able to close this door in his life.  We had been told "one surgery" since he was in my belly.  We had kept our minds on that -"Just get through this one" "one and done" we told ourselves.  This is a curveball.  This whole time we have been comparing what it would be like to go through this with Norah versus Keller.  The amount of explaining and hand holding and entertaining would be extremely different for this to go on with an older child.  Since we do not have a "school age" child we do not know what that is like, so it is hard to imagine hospitalization with a 5-6 year old.  Keller is proof that sometimes God uses humans in his interventions we are happy that He did just that.  However, we are praying, hoping, and believing that this time God will heal him without human help.  We know God has the power and we have seen evidence that he still works miracles - we are praying that it is His will to heal him.  It's kind of funny, this week was my first week back at church and the sermon was on just that! The leper who believed God could heal him asked for healing if it was God's will.  Please join us in praying for another miracle.    

At Keller's GI appointment we met with the doctor and then a dietitian for guidance on moving Keller's diet from 106 calories per kilogram to 120 calories per kilogram.  He will continue to get formula around the clock until he gains and catches up a little then we will compress his feedings into several "meals" a day.

Yesterday, he had his evaluation for home therapies.  The short answer is he qualifies for weekly occupational therapy.  Keller is behind developmentally across the board.  He measured "age appropriate" in one area and that is cognitively.  He is behind in the areas of communication, motor, adaptive, and social-emotional behavior.  I was given some tips to help him reach goals and he will also be seen by an occupational therapist to help him with his motor skills and oral skills.  

That is what's been going on around here, well that and a little bit of normal life.  (Yay!) We took Keller outside with us while Norah played in the yard this weekend. Today we ventured to the park, Daddy was able to join too!  Packing for an hour made me remember why we haven't gone anywhere, but Norah reminded me why sometimes the trouble is worth it. As soon as we got in the car she said "Thank you, Lord, for the park!"  It is good for her to get to do normal things.  All of this seclusion and moving has finally affected her. Miss Independent has changed to Miss-In-My-Pocket.  She is my shadow and I can't leave the room without her following me.  She did go to her "BFF's" birthday party last weekend and while it completely overwhelmed her she has thanked Jesus for it every day since.  I can't say it's not been stressful but I can say what a sweet and wonderful life God has blessed me with! 

Norah HAD to meet Tinkerbell after Peter Pan.  She whispered to her "I watch Mulan."
(I guess all those Disney gals are supposed to know each other.)