Three weeks since surgery

Joy had her checkup with the palate surgeon this week.  Dr. Ray said her palate has healed good and he says that this surgery was definately a "win".  After the surgery we noticed open crevices in Joy's palate along the tooth line.  When she ate solid food, parts of the food would get pushed up into those crevices and get stuck.  But now those crevices have filled in; the tissue grew together in just three weeks.  Dr. Ray said now we will wait for her to start talking.  When she starts talking, we may find that some adjustments need to be made in the palate if her speech is abnormal in any way.  We also saw an audiologist and did another hearing test.  Her hearing is within normal range! :)  This is a huge praise!!  We were prepared for the possibility of her having some hearing loss since she has had fluid on her ears most of her two years.  The audi. said she is not sure the tubes are doing their job though.  There is still fluid on her ears.  We are giving another round of eardrops and will check up with the ENT in two months.



Daddy and Joy swingin' to pass the time waiting on doc.





Feeding baby bird.



 Joy LOVES puffs!  We hide them, but she found them!  This month, Joy has learned the sign for "more" and yesterday she started attempting the sign for "please".  We have taught her both signs using her love for food!  We have been working on both signs for a month.  We have also been working on the word "up" for a month and she hasn't said "up" yet, but I think she is trying.  When she wants me to pick her up, I usually ask her several times to say "up" and she usually just moans with her mouth closed.  I probably say "up" a hundred times a day.  Yesterday when Joy wanted me to pick her up, she opened her mouth and uttered a very frustrated, "uuuuhhhhhh!!!!"  I was so excited to hear that and see her mouth opened in the correct way.  


Joy is captivated by the cover of Dr. Suess' book, There's A Wocket in my Pocket!  I can't figure out what it is, but she just stares at it!  Interesting!

I hope it will be one of her favorites.  It is one of my favorite children's books.

Also, in the last couple of weeks, we took Joy for her first haircut!  Well, it wasn't much of a cut, more of a trim.  Myra trimmed the few long strands that were in Joy's eyes, over her ears and in the back. 

Plan A: Joy sit on a booster seat for the trim.

What a big girl!

Just as Myra got the scissors in place for the first cut, Joy threw her head back in complaint.  Thankfully, no one was harmed!

Plan B: Joy sit on Mama's lap for the trim.

Still unhappy, but manageable!

Yeah!!!  All done!

And Joy's hair looks great!

Wow!  It takes a lot of practice to be able to work with a moving target, and do this good of a job, AND not hurt the sqirming child with the scissors in the process!





Day 5 of recovery

The following pictures are of Joy sleeping that last morning in the hospital.  She adjusted to the arm bands very quickly.  She has learned early in life to adjust and adapt!

Things have been tough, as expected, since we've arrived home.  Sunday Joy wouldn't eat or drink anything and she was so lifeless.  I was preparing myself to take her back to the hospital to get some fluids in her.  I think the poor girl has lost all the weight she has gained since coming home.  But today has been so much better!!  She has drank a couple of bottles and eaten watermelon and banana!  She is getting her little personality back and it is so good to see!  It is such a relief to see even her fussiness rather than the lifeless and lethargic child she was yesterday!  So far she has only fussed once about putting on the dreaded arm bands!  I am amazed that when we try to put them back on she holds out her arm without a fight like she is putting on beautiful and priceless bracelets!  She is a trooper and has adapted very well!

Okay, because I know you are all praying, I'm gonna lay out all her business.  She hasn't had a bowel movement since surgery, so we are praying for a bowel movement!! :)

We also found out from the genetics team that Joy has a missing segment of her X chromosome, called Opitz GBBB syndrome, which caused her cleft palate/lip, and wide set eyes, flat nasal bridge, etc.  It can cause heart problems of which it didn't in Joy, Praise God.  It can also cause developmental delays.  We will not know exactly what type of developmental delays.  So, we will work with Joy as much as she needs and be ever patient with her and we are confident that the sky is the limit for her.  She may have trouble in some areas, but she will soar in others!  She is so strong and so smart!

Thank you, as always, for your much needed prayers!

We are headed home!!!

After three nights at the hospital, we are headed home!  So excited.  Joy is doing so good.  She slept through the night last night and is still snoozing at 7:45!  The nurses didn't have her hooked up to any machines and what a big help that was for us all to sleep without the constant beeping!  Her last dose of pain meds was at 8:00PM.  She ate a banana yesterday!!  She doesn't want to drink much, but the Dr. said that is completely normal and that right now she will be getting enough liquid from the soft foods she can eat.  We will still try to offer water/juice and bottle often.
Thank you all so much for your prayers!  Greg and I feel like we have been carried the past few days.  Please continue to pray for us the next two weeks as Joy continues to recover and will have some tough and painful days.  We appreciate your prayers so much!

Day two of recovery coming to an end

We were able to come back in to the SCU to be with Joy at 8:30 this morning.  When we walked in, she was sleeping.  We captured a quit photo (below) before scooping her up and holding her.

Joy has slept much of the day.  But we have enjoyed interacting a little the past couple of hours while she has been awake.  She is acting somewhat more like herself, as much as possible after major surgery and while being on a regular Morphine dose and being hooked up to a machine.  Poor girl has wires hanging off each limb!  (See pic below)

We are still in SCU, but we do have a room being made ready for us.  YEAH!!!  An answer to prayer.  I was getting so worried about leaving Joy for another night in the hospital.

This is our spot in the Special Care Unit.

Drinking a bottle of water/juice.  Yeah!!!

Day two of recovery

Greg and I were getting very anxious last night as you can imagine.  Joy went into surgery at 1:00pm and the Dr. finished about 6:00.  It must have been about 7:00 by the time the Dr. came to us while Joy was still in recovery.  He told us that Joy did well and that she is a strong girl.  He said the muscles in her palate did not want to move, but he finally got them to move and going in the right direction.  He didn't use anything foreign in the surgery to bridge the gap.  He unattached the muscles which attached to the closest thing they could find, the bone, to reposition and rearrange her palate.  He was concerned for her due to the very long surgery, that she may have breathing trouble with swelling and he wanted her in the Special Care Unit where there is one nurse to three patient ratio.  Her oxygen was a little low after surgery, so they were giving her oxygen through a mask.  He took us to recovery to see her.  I had talked to others who have recently walked this same road and been warned about what we might behold when reunited with her right after surgery, but nothing could prepare me for the sight of her.  When we walked in to recovery a nurse was holding her, giving her oxygen through a mask over her nose.  Joy was crying a lot.  She was pale and her mouth all bloody, with a string coming out her mouth, with so many wires attaching her to a machine.  The nurse let me hold her.  She sreamed, cryed, pulled, pushed, kicked, shoved.  She has to wear the arm bands for two weeks so she will keep her hands out of her mouth while the incision heals.  After about an hour more in recovery, we went with her to the Special Care Unit, which is much like ICU, all open so the nurses can see their patients at all times.  The visiting hours are more liberal though.  Greg and I could stay with her until 10:30.  Visitation closed between 10:30 and 12:30 for the nurses shift change.  Greg and I decided to go get dinner and spend the night at a nearby hotel, knowing how much she is going to need us in the next couple of days and weeks.  There is no where to sleep in the SCU.  Visitation closed between 6:30 and 8:30.  We will get to see her again and stay with her most of the day.  Hopefully she will be doing well enough that tonight we will be in a room so that Greg and I can stay with her all night.  We will keep you all posted as much as possible.  Thank you so much for prayers!  They are needed so much!

Sorry, can't figure out how to rotate the picture. 

I can't believe it is finally here!

Wow!  what a week!  We were scheduled for surgery on Friday of this week, but we received a call on Monday from Dr. Ray's office with a change in plans.  He received orders to serve our country with the army reserves and wouldn't be able to do the surgery when originally planned, so we rescheduled for Wednesday, today.  Joy had a bottle at 3:00AM which was the last one she was allowed to have.  We had to be at the hospital at 10:30 and the surgery was scheduled for 12:00.  While waiting we walked and walked around the hospital and she rode in the wagon.  She was so sweet and did fabulous without having her normal bottles at 7, 10 and 1.  They took us back to a room at 12:00 and Joy changed into her beautiful yellow hospital gown.  She really liked her pretty yellow "dress"!  Once we were in the room, we were visited by Dr. Ray's assistant, and an anesthesiologist, and a nurse and Dr. Ray.  Today they will be moving around the muscle and tissue in the roof of Joy's mouth to close her palate and the ENT is putting tubes in her ears.



Did she just karote kick the door open???



Joy enjoyed riding in the car while waiting to go to surgery.

Daddy pushing Joy in the wagon while waiting.

Precious baby, so sweet and patient while tired and hungry.
By this time, she has missed three bottles and it is nap time.

Surgery began at 1:00.  As soon as they took Joy to surgery, Greg and I went down to the cafeteria to get lunch.  We were told to stay in the room in case the Dr. had any questions or needed to get in touch, so we came back to the room with our lunch.  When we got back to the room the ENT Dr. was waiting on us.  He had finished putting tubes in Joy's ears and said everything went great.  He said she had a lot of fluid on her ears.  We are still waiting to hear from Dr. Ray.  Thank you for your prayers!!!

Been staying busy...

So sorry it's been so long since last post.  We have been staying busy since the boys got out of school.  Joy and I are spending a lot of time trying to bond and learn how to play.  She is learning a lot.  She knows the sign for bottle, more, and bath.  We are working on the word "up" and the sign for "please" still.  Since coming home Joy has learned to take off and put on the rings on the ring stacker and to stack and knock over blocks.  She is very close to walking, but we are still trying to get her to crawl as long as possible which causes the right and left brain to communicate and work together.  When we first came home, she crawled a little funny with her feet stuck up in the air.  Since coming home, she has started crawling with her left foot closer to the ground.  We have been having a hard time with her pulling my hair and grabbing my face and scratching me wherever she can get her hands.  We have tried a few different ways to deal with it and it seems we have finally found the best way, to just completely ignore her so that she is not receiving attention for the behavior.  We still have much room to grow in bonding.  Just yesterday I tried all day just to get a little eye contact.  We will keep working!

She loves to play the drums!

Noah turned eight years old!



Happy Birthday Noah!