So many changes!

 Hello Friends! It's been a while since we have updated. It's been 5 months since Jace's first surgery in January. The time has flown by!

Unwrapping the "Merman Legs" at Dr. Sponsellers office March 14, 2014

 Jace has been doing very well! He began walking a few days after we got home! We were so excited (and so was he)! The past months have not been without some uncertainties or struggles but God has carried us through it all. He is faithful! Until Jace was able to get off all the pain meds it was difficult for him to walk around but he tried his hardest! On the last day of the meds he was doing so much better. He could keep his balance. We were also having to catheterize him every 4 hours. This was to make sure there was no residual urine collecting that would cause an infection. And may I say...I would like to NEVER do that again! Cathing a 2 year old is no party! We are still cathing once a day but he is more used to it now and so am I.

What a joy to experience watching him walk again! Not many parents get to do this!

 Our life continued on after we got back home...by God alone! We were and still are amazed at how well Jace did after we made it home. He had a great appetite for the most part. He began sleeping through the night once he was off the pain meds. We had our little boy back! And he was getting ornerier by the days!

Pizza Night

The first rain

 He was enjoying life...we all were! and we are continuing to marvel at how God moves!

Comparing his new belly button with his cousin Sydney's

hugs for his favorite sea lion at the Fresno Zoo

 After only a month of being back at home in Fresno, Danny had an opportunity to go back to school. The school where the classes were was in Lafayette Indiana. With many weeks of prayer and the Lord paving a path we were on an airplane with the boys to go spend the summer in Indiana. Danny would go to school and we would stay with my family who lived 2 hours from the school. And here we are today!

GOD is BIGGER

GOD is STRONGER

GOD is SOVEREIGN

OVER ALL!!

We would have never begun to have imagined that all of this would happen within the first year of 2014!

We did have to say "Goodbye for now" to our family in Fresno and our dear church family. We miss everyone so much!

Goofing around with Ian while waiting on our airplane to Indiana

 We want to follow and serve God most of all. We are excited to see what He has in store for us here in Indiana. It's been wonderful to be with my family this past month. To get connected again, watch the boys play with grandparents, aunts, uncles and cousins. They are surrounded by so many kids their age, it's fun!

At the Ft. Wayne Indiana Zoo

Cuteness

 Jace will have a follow up appointment in September at Hopkins with both doctors. The next area that they are going to look at is at Jace's spine. He has 4 vertebrae that are in the middle of his back and they are in pieces. Another common condition that comes along with Cloacal Exstrophy or OEIS Complex. His spine is starting to curve like scoliosis. We have never gotten a doctor to tell us what this may all entail but the only comfort we find is in CHRIST! He already knows what will happen and He has known this before he created the WORLD! We serve an AWESOME GOD:) 

We will continue to update throughout our fun filled summer! Thank you for all your prayers and love you have shown to all of us!! The Wakleys

Riding the pony at the zoo...that wasn't much bigger than Jace!

Tomorrow is the day! Praise God!

Hello! We have not been keeping up on this blog, so sorry.  Jace is doing very well and we will be leaving the hospital tomorrow! There have been so many people who have touched our lives while we have been here.  Its going to be a happy tear filled day. We will be staying in Baltimore for another week for follow up appointments and then headed home:) Jace is already trying to stand up to get around! Praise God!!!

Half way done:)

Hello friends! We are half way done!!!! Wow...it continues to be a journey for all of us:) Ian, our brave 3 yr old and wonderful big brother, hopped on a plane with his papa today to go back home. He was excited to see everyone one back home but especially his dog Tiger:) And he gets to meet his new cousin, Sydney, who was born yesterday, Valentine's day! He said he wants to race cars with her:) It was very hard to see him go home without us, but we know he will be in good hands:)

 Jace continues to heal and with healing he is getting more wiggly:\ Not good Jay-bird! For a few days now he has been wiggling clear down to the foot of his bed.  We are working with the pain management team here to figure out the right medicine to put him on for him to calm down. Until then it's alot of work to keep him still! Please pray for God to cover him with a calmness. We only have 1 1/2 weeks until the pins are to come out and traction to come off!! It should be Feb 26th, Lord willing.  After that, he will be able to begin to sit up in bed and go for some Wagon rides in the hall way:) If everthing stays on track, he will be ready to leave around March 12.

 Danny, ian and I all went out on a date before he left.We went to see the Lego movie! There is a theater here in Baltimore caked the Senator theater.  It was beautiful! It has been restored.  We had a great time together on Valentine's day.

 We are gong to miss our boy that makes us laugh, asks the craziest questions, our snuggle bug, peanut butter and marshmellow eating boy and a great gift from God! We miss you already Ian! You are going to have a great time with everyone back home too. See you soon E! Love you, daddy mommy and Jaybird:)

1 week after the second surgery...God is good:)

Hello Friends! Sorry we have not updated since Jace's last surgery, the days have been flying by! 

Jace did so well with the surgery!  It was 9 hours. Dr. Sponseller was able to pull the whole pelvis closed and Dr. Gearhart was pleased with how the badder went back inside his body. We stayed in PICU until Saturday and we were moved to a huge room on the same floor that we had been on before his second surgery. Where the nurses know him already and were awaiting his return:)

He was able to begin eating on Sunday, which he was very ready for! He gobbled two peices of toast, water, and blueberries! And don't forget the bananas!

My parents and friends Sue are here helping which allowed us to take Ian on a little outing, much needed! We had a great time:) He said that he felt like he was at Disneyland! 

Day out with Ian Ian

This is my friend Sue. She is a huge blessing to me and our family. God brought us together at church where I worked with her for two years. She is an amazing woman. She came to Baltimore to help and to serve. She loves our family and Jace wrapped himself around her little finger forever:) Ian got to play with her and she stayed with Jace every night so I could sleep. Her daughter, Alysa, a NICU nurse, came out to help also after the first surgery. She also stayed over night with Jace while she was here. Of course I dont have any pictures of her with him because I never could remember to do that:/ Thank you so much sweet friends for loving us and taking care of us!

My parents came out for a few weeks to also help! They have ben doing laundry, cooking, watching Ian and staying with Jace. It's so wonderful to have them here , and close:) Danny's parents were here for the first surgery also. We dont have pictures of them either...just wasn't thinking about taking pictures! They were wonderful help too and stayed a few extra days that we needed them to. So much support physically from all of our parents! Our family who couldnt come were lifting us up in prayers during this time which was just as important to us! And continue to do so!

Grandma and Grandpa visiting

There have been ups and downs with these surgeries. Some days are hard and some are easy. But God has been in control of them all and that is what has gotten us through. 

We had our plans all decided...until God changed them:) He already knew how this was all going to work out. Trusting in Him also means being willing to change our plans for knowing that He knows best for us. That is exactly what has happened.

Ian will be going home with Dewey on Feb. 15. We have loved having him here but he has been asking to go home. Since we live with Dewey and Mary ( Dannys parents) Ian will get to go home:) It is nt going to be easy on this momma and daddy, but we know that this is best. We will be able to then focus on Jace, to get him healed and back home. We will also be moving to the Children's House this Sunday. This is a home for families that need a place to stay while having a child stay at Hopkins. Ian is already set up with freinds to go see and to keep him busy until we can come home.

Here are some prayer requests:

1. For Jace to continue to do well, no infections, for him to stay relaxed and calm in order to keep still, for the pain to continued to be managed so well.

2. Transition to the Children's house on Sunday.

3. Ian to do well with the transition back home and to have fun with family and friends

4. Communication between Danny and I as we maintain communication with doctors and nurses.

5. Suzanne's parents as they travel back home to Indiana on Monday, weather.

6. God to be glorified in everything and everyday that we are here!

We have been so supported by all of you through prayer and financially. Thank you for taking time to keep up to date with us, caring for us, and loving us!

Love,

The Wakleys

Unto Your name, all honor and glory oh God!

 Tomorrow is the big day that we have been praying and waiting for! What a journey it's been up til now. Thank you for your prayers tomorrow as Jace goes in for surgery.

 They will be putting his bladder inside his body, reconstructing many abdominal issues, repairing a hernia and pulling his pelvis closed as much as possible and placing a plate across it to hold the pelvis in place. We have met all the doctors these past few days and are overwhelmed by the knowledge they have for Cloacal Exstrophy. The staff and nurses are beyond compare, and the pain team has kept Jace comfortable with the right medicines. We are truely blessed by all of this that has been happening!

Surgery will begin at 7:30am eastern time and go until 5:00 pm. We will keep everyone posted on here a few times during the day but mostly on Jace's page, Prayer warriors for Jace.

May God be glorified in everything that happens tomorrow!

Your Majestic Love...

Jace putting letters on Karen (nurse)

Ian in the Baltimore snow! He is happy:)

Our view of Baltimore from our room at Hopkins

We are coming to the end of our eleventh day. It has already been a huge journey and it seems like we should be on our way home at some point soon. However, there are still at least six more weeks and another surgery to endure! There have been so many other things happening around us here, with our church family and with friends that my mind has been on those things also.



Beautiful statue of Jesus at Johns Hopkins



We are praying for a dear church family.  Mackenzie was a great testament to our Great God and loved serving Him! She passed into her eternal father's arms last Saturday and her life was celebrated today. She had two beautiful children and a loving husband. She will be greatly missed, but I can't wait to spend time with her in heaven someday, to get to talk with her more. I really only got to see her from a far most Sundays. Her beautiful red hair was so striking and I pressed her one day at church how she styled it:) Whenever I did talk with her she would beam a beautiful smile, while she spoke:) I most of all remember seeing she and her husband Shane talking, laughing and ALWAYS holding hands. I don't remember a time that I ever saw them not holding hands. They soaked in every second of eachother. They always looked like they were rejoicing together! What a huge testimony to the unconditional love that God sheds on us! You will be missed greatly Mackenzie, but I'm anxious to see you again!! What awesome sites you are seeing right now!!

In these past few months there have been babies and young children, Jace's age that have passed on to our Lord. We knew about these sweet children because they are a part of our small support group that we are a part of. They all had the same condition that Jace has. There is right now a sweet boy who is fighting for his life. Our prayers have been with all of these precious families throughout the past months for God's peace and comfort.

We are so blessed, unbelieveably blessed. Blessed by these precious souls in being able to see God working.
Undeservingly Blessed.
It's hard sitting here, watching these things happen and wondering sometimes the "whys" of it all. The only answer I keep coming back to is that it's His Majestic Love for us, His Unconditional Love for us, His Grace on us, His Mercy on us, and most of all HIS SOVERIGNTY over all circumstances. He is glorified through everything. He made us to glorify Him. Even as I think about Jace's surgery next Wednesday, I know God already knows how Jace will do, He knew all of this before He created anything on this earth. AMAZING. Being here at the hospital, on this journey, seems long and there are hard times. But in the bigger plan it's just a little itty bitty part of a huge picture, just for God!

We are being lifted up by so many people, being taken care of by our Great God. It is an awesome feeling! As we are prayed for, our prayers go out to others also.  Thank you for your love and your prayers.

Jace is doing so well:) When the Ortho and pain team came in and was so amazed at how well Jace was doing we just smiled and said that Jace had so many prayers going up for him, that God was the one doing this! He was helping him stay calmed to be able to lay in bed, and to only have minimal pain. Jace is now OFF ALL PAIN MEDS:) That's right! Praise God! Jace needed some time off of the pain meds before the next surgery since he will need so many after that. God knows our every need. Jace also sleeps for three hours usually during the day and then sleeps all night:) And tomorrow (Sunday) Ian will get to be with Jace for a few hours! Yay!! These brothers are hard to keep apart:) They are both excited to see eachother. It's all God's mercy and grace.

We will continue to update here but we also have a Facebook page that will be updated too. It's called Prayer Warriors for Jace if you would like to be a part of the group:)  
Because of Jesus,
The Wakleys 



Jace taking on the drill:)



Blessed Beyond Measure

 Blessed beyond measure! Our Great God lavishing us in Grace, Mercy and Love unconditionally, as only He can! He is answering our prayers and all the prayers you have been praying for us! Thank you for being with us on this amazing journey:)