Cath Update

This is Hayley, one of Angela's friends. She asked me to post an update about Joseph, so here goes. The good news is that the heart function and pressures in Joseph's heart are better than the doctors thought. They were expecting them to be much worse and were "pleasantly surprised" with the results. The fluid around his liver has also decreased, which is another good thing. The not-so-good news is that the cath biopsy report came back with a high rejection levels Rejection levels are measured from 0-4 with 0 being no rejection and 4 being total rejection. The increments are 0, 1a, 1b, 2a, 2b, 3a, 3b, 4. Joseph's level was 3b. The rejection is still treatable with medicine. They have started him on another strong medicine that will totally wipe out his immune system, so that his body will quit fighting against the transplanted heart. This will make Joseph more susceptible to infections and he will have to be isolated for awhile. It is all just a waiting game and Angela said that she will know more details later. Please continue to pray for Joseph to respond to the medicines without any side effects. Also, remember to keep Angela, Stephen and Abby in your prayers.

A bump In The Road

So.........we hit a bump in the road.

We had a few concerns yesterday about Joseph. He was tired, had a pain in his side, and diarrhea. He hadn't been feeling well for a couple of days. Abby and I took him to the doctor, thinking it was possible appendicitis or something. We called transplant (to be on the safe side) to let them know of our concerns. They wanted to be safe and take a look at him, so on a moment's notice, we were headed for Charleston to get him checked out. Unexpectedly, we were told that Joseph's liver was enlarged and they expected that it might be his heart that was sick (the R word we never wanted to hear........Rejection). They did an echocardiagram and an EKG, then an x-ray. They confirmed it was his heart and we needed to admit him to the PCICU to start fighting the rejection. The plan is to be aggressive to stop the rejection or damage that can occur or has occurred. Dr. Ringewald said to expect at least a 3-5 day stay in the hospital, then steroid treatment at home for a month or two if all goes well. He was 1st case in the cath lab this morning. He is out of the cath and resting comfortably at this time.

11:00 AM

Just spoke with Dr. Ringewald.... Joseph's heart cath this morning was better than he expected. His initial procedure showed that his pressures are a little worse than his last cath (in April), but better than he was expecting. His blood flow is showing a little worse than the last cath, but better than he was expecting. After a night of Lasix drip Joseph's liver is almost back to normal size. :) They are hoping that the Milrinone they give to help his heart squeeze will no longer be needed after a day or two. :) We will get biopsy results back this afternoon and will know more about what is going on inside his precious heart.

This is the plan for now: Thymoglobulin (immunosuppressant), steroid drip, Lasix (to rid him of fluid), Milrinone (to help the heart squeeze), Prograf, and other usual supplements. After we get biopsy results this afternoon we will monitor and adjust his treatment as needed.

We are feeling hopeful that we caught this in time. Thank God we came in yesterday when we did! One more day could have made a HUGE difference!

Hopefully, now that we are here and he is being treated with such knowledge, skill, and care...they will be able to reverse this condition and restore him to full health.

Please keep the prayers coming. It is so uplifting to know that people are praying for our wonderful little boy. He is such a blessing to us. We are always learning and growing in our faith because he is our little reminder of all that is good in this world and no matter where we are or what we are doing, God is right here with us every step of the way.

Love to All,
Angela, Stephen, Joseph, and Abigail

Wet 'N Wild!

Just had to share these fun summer photos with you!

Joseph and Abby are taking the plunge! They can both swim now! Things just got a lot more interesting in our pool. It's one crazy game, contest, or challenge after another!

Nothing is as fun as a day at the beach!

Joseph is saying, "Come on in, the water is fine!"
Abby practices writing her name in the sand...she is getting ready for kindergarten!

Hope you all had a Happy 4th of July! We spent the day in the pool, grilling, and shooting fireworks! It was a great day for us! We were happy to celebrate the freedom to do anything we want! Joseph's good health continues and we are so thankful for these happy times! Love to you all!

Until next time,

Angela, Stephen, Joseph, and Abigail

Summer Fun!

Collin M. Smith, a very talented photographer here in Florence, has started a unique charity to help raise money for Children's Miracle Network. We did our part to support the project and I just really had to share with you this picture of Joseph in an all out belly laugh! :) Priceless!

We are definitely on a summer schedule around here...late to bed, late to rise. Kids just don't feel like going to bed when it's still light outside! I can't say I blame them...I'm always up late these days too! Let's see, we've been pretty busy lately swimming almost every day. Joseph finished up his baseball season and had an end of season celebration at the Splash Pad. My kids had never been there before and LOVED IT!! We attended Vacation Bible School at our church. I was so honored during this week to witness two students become christians and proclaim their faith in Christ. As adults, we have SO much to learn from children. To see faith in Christ through the eyes of a child is such a blessing! God really knew what He was doing when he blessed our world with children!

Speaking of children who are a blessing...we went to Fundaygo a couple of weeks ago to attend a fundraiser for a child who has a terrible disease called cancer. It was heart warming to see all the support they recieved. It brought back to our minds the days when everyone rallied around our family to get us through those tough times with Joseph. This little boy's name is Kole Miller and he is a precious little boy with a monster to defeat. You can read more about him at www.caringbridge.org/visit/kolemiller or http://www.kolemiller.com/. Please include him and his family in your prayers. It was good for Joseph and Abby to see Kole since we pray for him every single night. I told Joseph that's what lots of kids and parents did for him when he was sick! There is a "spirit night" for Kole at the Chic-Fil-A on Irby Street tonight from 5-8pm if you live in Florence and can make it! Eat in or drive through to help raise funds for Kole. Hope to see you there!

Joseph is doing great physically! He isn't holding anything back and to watch him be "normal" still completely amazes us after all this time. We can thank our donor family for that! They gave him this most wonderful summer season! The doctors, nurses, and transplant team at MUSC is responsible for his amazing outcome as well! I recently read an article about MUSC that I'd like to share with you. They deserve this recognition.

You can access it at the following URL:http://www.scbizmag.com/content/view/123104/1/

We are looking forward to what the rest of the summer has to offer! When summer is over, Abby starts 5K! Break out the Kleenex!

Until next time,

Angela, Stephen, Joseph, and Abigail

Joseph Made His Wish!

I just can't believe I have waited so long to update Joseph's blog! We have been so busy having fun and leading a "normal" life! We have had a wonderful spring with Joseph turning 8, he and Abby starting baseball, and now the school year is coming to a close! Gosh, I'm in shock over the fact that Joseph will be in third grade next year! He finishes up the school year this week! He had beach day at school yesterday where they enjoyed most of the day outside with their books and puzzles and things. They finished the day with water balloons and popsicles. It was hot!!! I am really looking forward to sleeping in a little this summer. Well, as much as two little kids will let me! :)

I just wanted to share a little bit about Joseph's wish that was granted by the Make A Wish Foundation. Joseph's wish was to go to Disney World. We went and stayed where all the "Wish Kids" stay...Give Kids The World Village. It is a magical place that completely spoils kids for the week they are there. There was a Castle of Miracles, a beautiful carousel, pony rides, a Winter Wonderland Party complete with a visit from Santa and snowflakes, a Pirates and Princess Party, a gift fairy that visited every day, and a life size Candy Land playground and party! These are just to name a few. It was the best week you can imagine. It was just what my family needed...happy, happy times and new memories. We are all still talking about it! We did have one bad thing happen...Joseph came down with the flu the day after we visited the Magic Kingdom! He was so sick. I admit I got a little scared for him because he couldn't hold anything down. We spent one morning at Urgent Care and then a day in the Pediatric E.R. at the Children's Hospital in downtown Orlando. Joseph was dehydrated and weak, had fever and chills. They took great care of him at the hospital and gave him medicine for nausea. Thirty minutes after this wonder drug was administered, Joseph's condition turned around completely. They did blood work, xrays, and an EKG. They confirmed that he had type B flu. He recovered quickly and we continued our vacation as if nothing had happened! We extended our stay by two days so we were happy and the kids were still able to do all they wanted to! We just can't thank the Make A Wish Foundation enough and the staff (plus volunteers) at GKTW Village for the kindness and wonderful treatment we received while there. It was a once in a lifetime experience. I wish we could go back and do it all over again.

Thank you for continuing to keep us in your prayers. Please don't forget our donor family. They need your prayers even more than we do. Thanks for checking in!

Until next time,

Angela, Stephen, Joseph, and Abigail

Joseph Officially Turns 8!

Abby's impersonation of a porcupine!

Conditions were just right at Joseph's 8th birthday party to make Abby's hair stand on end! We grilled hotdogs, roasted marshmallows around the fire pit, and played games in the back yard! Joseph had a few friends sleep over after the party. It was just what he wanted to do to celebrate.

Roasting Marshmallows!

Celebrating with friends and family!

The day after his party we took the birthday boy to lunch at Red Bone Alley (his favorite restaurant) and then off to pick out a new big boy bike!

I want to thank those of you who still are praying for our little guy and for our family. God has bestowed many blessings on us along the way! We want to thank our donor family for this special time with our sweet boy. He is growing and changing every day and we are so blessed to be on this journey with him.

Until next time......
Angela, Stephen, Joseph, and Abigail

A Happy Heart!

As of today it's been 2 years since Joseph received his miracle, his gift of life, his second chance. We couldn't be any more grateful than we are today for the health and happiness we've enjoyed in these last 2 years. We went down to Charleston for his 2 year biopsy and received a glowing health report! His heart is still beautiful and continues to be everything he needs. We drove down on Thursday night and stayed in a beautiful old Charleston Inn. Thank you, Sally, for such a special treat! Abby ended up with an earache in the middle of the night and we found a wonderful Dr. on Calhoun St. who said she has allergies, but no ear infection. So, both my kids are having reactions to seasonal allergies. We were juggling kids that day to say the least. But we made it through with great news on all fronts. Joseph doesn't have to go back for another biopsy for 6 months!!! Whew...we've come a long way!

This week is our spring break. We don't have any specific plans other than having fun together!

We went to my mom and dad's after church for Easter lunch. We had an egg hunt and Joseph opened birthday presents! His 8th birthday is this Saturday, April 18th. It was so much fun to be with family. He's been playing with his gifts all day. Tonight, to celebrate his 2 year "transplantiversary" we are having pizza and playing Wii games ... Joseph's choice of course! I borrowed that word from my friend Beth who saw it on another blog (cfhusband.blogspot.com) that both of us follow. It's a very uplifting blog if you want to check it out.

As for our donor family, we are hoping that they have found some sort of comfort today in knowing that their choice to donate life has given such a bright future to another child of God. Joseph's sister would be lost without him. His parent's would be devestated looking at his empty room. His cousins would only have their memories of countless hours at Grandma's house playing at the fort. His Aunt Ann would miss baking him chocolate cakes! His friends would be missing his love of dinosaurs and his sweet disposition. Our church would have one less earthly example of the miracles God still performs today. None of us can imagine a world without our JoJo in it. So, thank you, donor family for this priceless gift. We pray for you all the time. We hope to meet you one day.

Thanks for checking in! We love your support and prayers for our family.

Until next time...

Angela, Stephen, Joseph, and Abigail