Monday, September 5, 2011

Final stages of recovery from Cleft Palate repair


John was sure happy to be able to have "soft food" after his two weeks of only liquids. 
"Um...yum!", he thinks.  "It tastes even better on my face than in the bowl!  What a discovery!"


"I'm not sure if this balloon ribbon counts as 'soft food' but I'm going to try it"
"Maybe if I hide in this box they won't try to put those pesky arm constraints on me again tonight." 

"WOW!  I never thought this day would come...good bye arm constraints; hasta la vista, baby!"
"Maybe if I look like a BIG boy, the Dr. will take me more seriously".
"Dr. Allen looks better without his scrubs on...I actually think I could like this guy" 

John likes his new mouth and nasal passage. The first couple of weeks he walked around blowing air out of his nose like a person would blow in a Kleenex just to practice.  We heard him snore for the first time.  And he now sticks his tongue out just for fun...we had never seen him do this before so we guess he usually had his tongue in the big hole in the top of his mouth.

Although the surgery was successful, 10-15 % of kids who get a cleft repair end up with a small hole in the roof of their mouth that is not closed properly.  John fell into this percentage.  We are not sure what this means...the hole will only be a problem if it interferes with his speech.  So we will wait and see.  Meanwhile, we are teaching him to blow bubbles, suck out of a straw and learn his vowel sounds.

Thank you for your prayers.  John narrowly escaped getting a wicked version of the stomach flu while three of his adult caregivers went DOWN!  In addition, his dietitian confirmed that he did not loose weight during the surgery and recovery period (this is a big deal since he will be three in Nov. and currently weighs 19 lbs).

Please pray for weight gain and the acquire language skills quickly.  Thanks so much!

Saturday, August 6, 2011

Update on John's progress


Dear friends and family,

We have had several people inquire as to how John is doing so we decided to send this update.  THANK YOU for your prayers!!!

Medically, John is doing fine.  He has escaped infection and doesn’t seem to be in physical pain.  He is very active during the day and smiles plenty, especially when he plays with his Grandma M (Menefee).   One of the best gifts we received as John was dismissed from the hospital is that he only had to wear his arm constrains when he took a nap or went to sleep at night. 

The first day or so at home, John was very angry about not being able to eat solid food.  He screamed/cried for an hour the first day.  We think that he thought that once he got back home, he could get what he wanted to eat.

Then at night, he resists putting on his arm constrains when going to sleep, he wakes up in the middle of the night very angry that they are still on and asks for “food” to comfort him.  As you might have guessed, John is asking for REAL food and when we give him the liquid food, his anger increases; needless to say, none of us got much sleep during these nights.   We have tried a number of things to comfort him as he screams/cries…taking a bath, playing music, even watching a video.  However, the cries only subside as long as the arm constraints remain off.   The last two nights this pattern has waned a bit.  Poor thing, being so young he does not understand when we count down the days left for his recovery, which only increases his frustration.   However, the last two nights we have seen improvement.

We have seen/felt your prayers as we have cared for John this last week and ½.   Looking at photos from a week before the surgery, John’s fingers were almost ALWAYS in his mouth.  It is amazing to us that he has submitted to the “no fingers in your mouth” rule during the day when his arm constraints are off.   In addition, John has not regressed in his behavior like last time.  Instead, he seems to want to be held by us more often and more tightly.  So precious…

I hold back the tears every time I think of those of you who are praying for John.   Someday he will understand and be able to receive the outpouring of God’s love through you.   Know our hearts are full of gratitude.

Sincerely,
Laurie and Ron

John's request for "one more time", which really means "again" ...this time in relation to whipped cream (Before surgery)   

John meeting our dear friend, Joe,  who works with Campus Crusade in Paris.  Joe was at the CCC staff conference in CO and was able to meet John for the first time. 
Surgery day, the arm band placed on his wrist and more to come....
Another miserable moment with arm constraints
Happy time with Grandma Menefee...

Thursday, July 28, 2011

Update on John's surgery...


Thank you so much for your prayers for John and us.  His surgery went well yesterday – to repair his cleft, the surgeon cut his gums round the upper teeth.  He then stitched three layers – the sinus layer, muscle layer, and then the palate itself.  As you can imagine, he is in great pain.   Therefore he regularly cries/screams , sleeps, or wants to be distracted by a DVD.  Although he hasn’t smiled once, even when a dog visited, we think he feels loved and cared for by us. 

As we predicted, he really hates the arm constraints.  They have caused their own frustration and anger.   

He has “eaten” an Instance Breakfast shake (most of it) as his first meal today.   Taking the appropriate amount of liquids will help to send us home sooner…but due to the pain, John has avoided most of our attempts to get him to drink. 

We have great hope that the worst of the pain is over by today and that his smile will return soon. 

Please pray that he will drink more (this is his only way to get nourishment), for decreased pain, and for the ability to manage the arm splints.   

We are ever so grateful for your prayers and support,
Laurie  and Ron

Tuesday, July 26, 2011

John's Big sugery...


John with friend Ben
Although many of you know about John’s cleft repair tomorrow, July 27th, we wanted to send out an official word with details and specific prayer requests.  John is going into surgery at Denver Children’s hospital at 12:30 pm MST on Wed.  His surgeon is Dr. Allen.  He is getting his cleft repaired, tubes in his ears, and an abscessed tooth extracted.  It is estimated that the surgery time will be three hours. 

He will stay 2-3 nights in the hospital before being released to return home.  He will wear arm constraints for at least two weeks, which prevent his elbow from bending so that he can’t put anything into his mouth that would damage the tissue that needs to heal.  He will be fed only liquids during this time by us through a syringe.  

Issues that make the constraints feel almost “cruel” are 1) John, like ALL the cleft palate kids we saw in China often has two fingers in his mouth for comfort – both waking and sleeping.  2) we have taught John to communicate using sign language and he will not be able to “talk” to us with his hands 3) due to his needing to gain weight, feeding only liquids through a syringe means that weight loss is very probable.

In addition, although John’s urology surgery last month was ultimately successful, he did have complications.  These complications caused him to be in great pain for a number of hours.  Since that time, we have seen some forms of regression in John’s behavior.  He shows that he lost trust in us due to the “trauma” of his surgery.  This is very normal of an adopted child but also is sad for us. 

Please pray as God leads you to do regarding the above concerns.  As you can see we need prayer not only for the surgery itself but for the weeks that follow. 

Ps. 46 has meant a great deal to me as I have prepared for John’s surgery.   After studying the Hebrew meanings, I rewrote the Psalm in a way that helped me absorb its meaning. The verses in the Italics are the ones that I re-wrote. 

Vs. 1 True God, you are the person I flee to,
A well-proven help in anguish, distress, affliction. 
Vs. 2 Therefore we will not dread or be terrified through the ground or whole world change,
Though Pikes Peak disappear from our horizon,
Vs. 3 Though the CO sun cease to warm our days
Though the mountains become unstable and shake. 

4There is a river whose streams make glad the city of God,
   the holy habitation of the Most High.
5 God is in the midst of her; she shall not be moved;
   God will help her when morning dawns.
6 The nations rage, the kingdoms totter;
   he utters his voice, the earth melts.

Vs. 7 The existing One who is Lord over all creation is with us;
The covenant God who keeps His promises even when we don’t surrender to Him is our rock affording shelter and security.

8 Come, behold the works of the LORD,
   how he has brought desolations on the earth.
9 He makes wars cease to the end of the earth;
   he breaks the bow and shatters the spear;
    he burns the chariots with fire.

Vs. 10  Throw down, relax, abandon striving and consider, acknowledge  & understand that I am God.
I will be lifted up for I am eminent in power and glory among even non-Hebrew nations.
I will be lifted up for I am eminent in power and glory among the WHOLE EARTH.

Vs. 11 The one TRUE God over the WHOLE creation is with us;
The covenant God of an unruly patriarch of our faith is our trustworthy and faithful defense.  

We'll keep you posted..,
Laurie