A new ballgame...nursing at home

Dear friends and family,      

     We have seen lots of answers to your prayers!  Thank you for being a part of this journey.  

     John had a terrible night on Wed. night at the hospital.  He couldn't keep anything down, including his medication until the proper nausea medication was ordered in the wee hours of the morning.  This enable him (all of us) to sleep for several hours in a row.  YEA!!!  

      Thursday was a better day. He actually asked to go to the play room.  He and his Grandma Menefee spent a happy hour playing with puzzels, etc.   Early afternoon, John kept his formula down given through his feeding tube.    And since he has a feeding tube, we did not have to wait in the hospital until he was able to drink enough liquid with his sore mouth.  This is a good thing since he is over-protective of his mouth currently and is hardly even taking sips of water.  So, we were home on Thursday evening by 9:00 pm.  Not only were we grateful to sleep in our own beds, but we are happy to be released from the expense of another night's hospital stay. 

      At home, his pain has been reasonably controlled by the regiment of medication they prescribed for him.   Yet he is generally miserable.  His lips are still swollen and he is drooling constantly as he is afraid that if he swallows, he will feel pain.  He is low energy and will hardly talk due to the tape on his  upper lip.  

     Today, Saturday, his friend Sophie came over to cheer him up.  He is still not himself - almost no smiles throughout the day.    So playing outside in the water with Sophie was a treat for all of us.   

     A huge answer to prayer and a surprise to us has been his self-control to leave his fingers out of his mouth.  We told him honestly that if he did put his fingers in his mouth that he would hurt what the surgeon had done and have to go through it all again.  The nickel dropped for him.  In the big picture this means that the arm constraints that keep him from being able to bend his arm are only needed during his nap and at night.  John has been super cooperative when we need to put these on, for which we are grateful.  

     Thank you for your prayers.  We have a follow-up Dr. appointment in Denver on Monday, June 3rd.  We will know more about the overall result of the surgery then.  In the meantime, please pray that there will be no injuries to the mouth and lips; that they will heal perfectly and that we can make the time for John as comfortable as possible.  

Recovering in hospital on May 24th.  

Home with tape mustache, which serve as sutures on May 25th. 

Surgery completed...recovery's a bummer so far...

Dear all,

Thank you for your prayers for John and his medical team today.  And thank you for praying for John's Mom and Dad also!  Dr. Allen reported that he closed the hole in the back of John's palate, overlapping the muscles in the back  of his mouth.  He hopes this will strengthening the closure and put the muscles back into alignment.  He also elongated his palate, which will help John with pronunciation.  In addition, he did some major repair on John's lip.  He reconnected the two muscles on the top lip, cleaned out the scar tissue in John's nose and brought the lip itself into alignment.

We knew were in good hands when a Dr. in his fourth year of ENT residency and the anesthesiologist both praised Dr. Allen as an excellent surgeon.

John has had a hard time since the surgery.  Although his pain is fairly controlled, he has been stripped from his primary self-soothing method - that of sucking his fingers.  He hates the tape on his lip, the name arm band on his wrist, the port in his arm and even the oxygen blood monitor (the red light) on his toe.  Any time a nurse comes into the room he starts crying.    Poor boy.  It might be a hard night...we are praying for a better day for him tomorrow.

Please pray that he will submit to the medical protocols and also the need to keep his fingers out of his mouth.  

We are grateful for your prayers and support.

Sincerely,
Laurie and Ron

John's surgery May 22nd.

Dear family and friends,

Thank you for your prayers and encouragements regarding John's upcoming surgery.  John's  surgery is May 22nd @ 1:00pm.  It is scheduled for four hours since Dr. Allen will be closing the hole in his mouth and revising his cleft lip repair to include the muscle of the upper lip (his original repair was done in China and they only repaired his lip cosmetically rather than functionally).  At four and 1/2 years old, this will be John's seventh time under general anesthesia.  And from what we were told by the surgeon, there is an 80% chance that the hole in the back of his throat will close correctly this time.  

Your continued prayers are appreciated.  We will be using this blog to communicate updates and specifics. 

Our main prayer needs currently are: 

1. For the hole in the back of the throat to stay closed and his lip to be successful.  
2. No complications during and after surgery
3. For wisdom and creativity in meeting his emotional needs - John is VERY fearful of any medical intervention due to prior experiences.  
4. That he would not regress emotionally or in his attachment to us (this has happend after his previous major surgeries). 

Thank you to your prayers and support. 

Sincerely,

Laurie and Ron

PS.  Since we haven't updated is so long, I thought I would post some recent photos taken during our ministry trip to Budapest, Hungary.  

John took advantage of his Mom and Dad's attention being directed to shopping for T-shirts rather then keeping an eye on him in the store.  This is his favorite photo from our trip!   

Avoiding bedtime...

Making Mommy laugh, which he does often! 

So proud to have matching shirts with Daddy.  Instead of using the word "matching",  he refers to it as "same, same"!  

John - expressing his usual happy disposition.