3 Years!!

Yesterday we were so happy to celebrate 3 years since Joseph received his new heart. It is so hard to believe how quickly 3 years have come and gone. We have watched him grow and change and mature. He is still the same in so many ways...he loves to be silly and make us laugh, and he is such a sweet, sweet boy. He loves telling jokes! He's got a really good sense of humor. He has changed too...outgrowing his dinosaurs and "baby shows" as he now calls them.... :)

Medically speaking, we get labs drawn pretty regularly, but we don't have to go back for a heart cath. until August. Joseph still loves visiting his doctors and nurses...as do we! What a great group of people that we are forever grateful to!

We also continue to be mindful of praying for the family of Joseph's heart donor. We know that every year we celebrate is another year and reminder of their loss. We pray God covers them in love and peace.

We are looking forward to the end of school and possibly going on a family vacation this year! Last year's plans got ruined due to a little thing called "rejection." We got through it, though, and are really excited about what this year has to offer!

I'd like to give you an update on Abby....she's in 5K and loving it. She has the best teacher in the world. :) She has lost 2 teeth! It was really funny on Easter because she got a visit from The Easter Bunny and the Tooth Fairy in the same night. :) That was a fun surprise! She still sings her thoughts throughout the day to the top of her lungs and marches to the beat of her own drum! She cracks us up constantly...keeps us in stitches!

I would like to ask for special prayers for my mom. She has been diagnosed with colo-rectal cancer and will be facing surgery during the month of May. She has been through chemo and radiation to shrink the tumor. She became very ill near the end of March and spent 17 days in the hospital. She is out now and is receiving occupational and physical therapy. She needs to build up her strength to help her do well and recover after the tumor is removed. My mom is the sweetest lady, and I have been so blessed to have her as a mother. It is so very hard to watch her not feeling so well. One thing about my mom is she looooooooves her grandbabies! She wants to be able to do all the things she used to do with them. I pray that this happens soon! My babies need her too! God is in control and we have witnessed his healing touch. There is NOTHING God cannot do.

That is about it for now...thank you for checking in. We always appreciate your prayers and support.

Merry Christmas & Happy New Year!

We had a wonderful Christmas this year! Joseph and Abby got in the mood to celebrate Jesus' birth early on as they were sheep in our church's Christmas play. It was so sweet to see them sing their hearts out. Something wonderful happened. Joseph was baptized in our church. It was a happy day and our family came to be with us for this special event.

We are all happy to have a break from school. Joseph's break started a little early because he came down with a random virus. We went down to Charleston to be checked over and he was released to come home and rest, but no school for the remainder of the week. He enjoyed the rest and being able to sleep in! Grandma came for a visit and we baked some Christmas cookies. What a mess (but lots of fun)!

We took the kids ice skating for the first time! Calvary Kids For Christ had 60 skaters on the ice. They loved seeing all their church friends there. Staying up on the ice was a challenge, but they did not give up easily! We were slipping and sliding all over the place!

Abby gets a little help from her daddy!

Joseph never gave up! He had fun trying something new & different!

We are so happy to welcome 2010 and are praying for a happy, healthy, and blessed New Year filled with many more new experiences! Joseph's next clinic appt. is scheduled for Jan. 29th. Please pray that all is well and that he continues to have a healthy heart. Please say a prayer for our donor family that the New Year brings them peace, love, and joy. Their gift of life gave us another year with our precious son. We continue to be in awe of this miracle we have been given.

Hugs to you!

Angela, Stephen, Joseph, and Abigail

Happy Halloween!

Our little witch and alien from outer space wish you a Happy Halloween!

Home & Ready to Trick-Or-Treat!

Joseph was discharged on Thursday afternoon. We are home now and ready to go trick-or-treating! We spent the morning carving pumpkins. Now we have to get some Halloween candy. I'll post their costumes later so you can see them, they are so proud. Here is a peak at Joseph's, but Abby will be sporting a friendly witch later tonight. :) They were especially proud to dress Max in a ghost t-shirt. Joseph feels good, we just have to make sure he stays hydrated. We'll take water with us when we go tonight.
Looks like Abby and Stephen were having fun while Joseph and I were at MUSC.

Happy Halloween! Thanks for your prayers and a big thank you to the folks at MUSC for taking great care of Joseph and getting him well in time to be home for the fun.

Love to all,

Angela, Stephen, Joseph, and Abigail

Latest on JoJo

I'll try to catch you up so speed. Joseph went back to school near the end of September and has had a good year so far! He is learning a lot and loves to read. His favorite subject is science, just like his daddy. :)
Last week, he got sick with the flu. Fever, chills, bodyaches, vomiting, and diarrhea. He began taking Tamiflu right away but just kept getting sicker and sicker. On Saturday, we ended up being admitted to MUSC (our home away from home) so they could get things under control. He was dehydrated and very ill. Lots of fluids and nausea medication has brought him back around. They did a heart cath Monday to rule out rejection. We have the results.......no rejection! Thank God!

He woke up yesterday feeling much better. Then, yesterday afternoon, he took a turn for the worse. Symptoms were back and just as bad as before. He was miserable. They are waiting for results from a blood culture to make sure there is no infection in his blood stream. He is receiving IV antibiotics for now and we will decide what happens next once the 2nd blood culture comes back. His electrolytes are still a little off so they are replenishing them as needed.
I will tell you that he is in the best possible care. Nothing goes unnoticed. His doctors and nurses are all about kids. He loves them. There is NO PLACE we'd rather be when he is sick. They will probably have to push me out of here while I'm still asking, "Are you sure he's okay? Are you sure? Are you sure?" :)
Thank you for keeping up with our little fighter. He has shown us this week that he still has more strength and courage than we do, and we take our lead from him.
Love to you all,
Angela, Stephen, Joseph, and Abigial

Joseph is heading to 3rd grade!

We made it Charleston for Joseph's biopsy. He had a really hard time taking the premeds before going into the cath lab. We are going to try something different next time. He's never had anxiety like this before! :(

But, the day ended on a very positive note. Amanda called Joseph's rejection episode "resolved." That was music to our ears! His heart pressures look great, his blood work was awesome, his rejection level is ZERO. The best news came for Joseph when they told him he could head back to school! :) He is so excited! We are packing his book bag as we speak! This will be the first day of school for him! We are going to get a haircut and last minute supplies that he needs. We are looking forward to this because he wants it so bad.

After the cath, we walked over to a research lab with Dr. Hsia. He introduced us to a team of Dr.s and scientists who have been doing research on cardiomyopathy. Joseph's very heart is in this research lab and many of them have been studying it. His story inspires them to keep the research going and why they are there. Their discoveries and developments could potentially benefit Joseph personally. Isn't that an amazing thought? They told us a little about some things they are working on right now that could make early detection of rejection a simple and promising thing! We are looking forward to hearing more about that.

Thank you for checking in on us. We are happy to be home and are looking forward to sharing some third grade stories with you!

Heart hugs,
Angela, Stephen, Joseph, and Abigail

Not Yet...

We had labs drawn Friday week...our normal (wonderful) "Mrs. Suzie" wasn't there when Joseph went in. The blood they drew clotted and we didn't find out for almost a week that they couldn't use it! Ugghhh!!! Stephen rushed him to the lab at McLeod so we'd get the results before this weekend in hopes he could go back to school tomorrow. Well, as it turns out, it didn't matter about the initial delay or the rush for retesting because Joseph's immune system still isn't strong enough to mix and mingle in a public setting. So, no public school for him just yet. I know I sound impatient. Please don't think I am complaining. I certainly would never want to rush him into something his body is not ready for...I just want him to be a "normal" kid and get to do all the things that are important to him. School is definitely at the top of his list! Too bad this didn't happen in April when he has spring fever and can't wait to get out of school! :) Ironic, isn't it...he wants to go... and Abby wants to stay. :)

So, his next biopsy is this Friday, Sept. 11th. Please start praying for good results for Joseph. Please join us in praying for a "circle of protection" around him, so that when he does go back to school he can stay as healthy as possible. The seasonal flu and the swine flu do have us a bit concerned. Pray for his donor family as well. I know they would love to know that a part of their loved one is doing well and still beats life into the heart of a child.

Thanks for checking in on us. I hope to be reporting good news on Friday!
Love to you all,
Angela, Stephen, Joseph, and Abigail

School Days

Abby started 5K at Carver and loves her teacher. She, however, does not like the whole concept of school........getting up early and staying all day. Every day she wakes up and tells me she is not going to school today. :) I tell her about all the exciting things she will do there and all the friends she'll get to see. She doesn't really buy into that kind of talk. I asked her to help me get something out of the car one morning and she looked at me as serious as could be and said, "I'm not falling for that, Mommy." I had to choke back a laugh! :) She cried everyday for 7 days straight but finally seemed to turn the curve on day 8. Thank goodness!

Joseph is receiving home bound instruction from his 3rd grade teacher. We are so excited that she offered to do it! He is getting to know her and she is telling him about their class and who is in there. He is real excited and anxious to go back. He is filling his days in creative ways (putting puzzles together, building with Legos, and writing a "mystery novel"). He wants an old fashioned typewriter so he can write more books. *Nurse Joy, Joseph and my mom finished the pirate ship you gave him! Thank you so much, they had tons of fun doing that! I'll try to post a picture soon so you can see it! He has already made his Halloween costume! He wants to be a ghost. He is taking a New Christian class and has enjoyed that also.

I am working full time for the first time since Joseph was born. I am really enjoying being back in the classroom teaching 4th grade! I am getting to know my students and enjoy the independence and enthusiasm of the 4th graders. They are a fun bunch to work with! My school is very supportive and the staff is very positive. I am thankful for these things! While I work, the grandparents have pitched in and are taking turns staying home with Joseph. He has loved spending time with them, so it has been a win-win situation! They help him with his school lessons and do the fun puzzles and things with him. This week his "Grandma Greenwood" wants to start teaching him to play the piano. Grandmama Cribb is in charge of making costumes. He knows she likes to sew. I can't wait to see what they come up with!

All in all, I think we are making the most of the situation. We will be so happy when he is back to himself and able to enjoy the outside world again! He is getting cabin fever! I can't blame him! Thank you for all your prayers and don't forget to continue to pray for our donor family. I'll try to post again soon when we get lab results from Friday's blood work.

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

Great News!

Joseph did great today at MUSC! He had labs drawn first and was very brave. Then he went to the Peds Cardiology Clinic and somehow got a Nestle Crunch Bar out of the deal?!? Nurse Caroline says he's going to be a lawyer someday. :) He can talk you into almost anything! The good news is his chest sounded wonderful.......no gallop sound like they heard before. The best news was that his echo showed great improvement. His numbers were better than they were last April! Dr. Forbus actually used the words "fantastic" and "awesome"! Music to our ears!! He will not be able to start school quite yet. His blood counts are heading in the right direction, but they're not quite where they need to be. We'll reevaluate in about 2 weeks. Thanks for checking in! Keep praying that his blood counts will continue to head in the right direction so he can start school and we can schedule his baptism.
Heart hugs,
Angela, Stephen, Joseph, and Abigail

Check Up This Friday

Well, not much to report this week. Joseph is doing well. His sweet little face is swollen from the prednisone and he's eating us out of house and home! We got a call from Transplant saying that his Prograf levels (anti-rejection medicine) had dropped from Sat. to Mon. We are trying to figure out this mystery. The yo yo in the numbers can be confusing and concerning. We will be at MUSC this Friday for labs and a Cardiology Clinic Appt. We are hoping and praying his heart function and pressures all look good or better. We will be making decisions about when Joseph can start school and when he can be baptised. He is going to be very upset if he can't start on time. He told me tonight that "you just can't miss the first day of school!". We shall see. We'll just look up for all these answers. Pray for our sweet little guy that things will start to get back to "normal" for him real soon! Our hearts break for him when he hits these bumps in the road. He's a strong boy, though, so if anybody can do it, he can!

Here's a fitting verse: Jesus looked at them and said, "With man this is impossible, but with God all things are possible." Mathew 19:26

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

The Plan

The plan for now is to have labs drawn at 8:30 in the morning right here in Florence. Then we will wait and see the results. If all is well, we will head to Charleston on Friday for a peds cardiology clinic appt. where they will do an echocardiogram, EKG, and draw more labs. Joseph's not going to be real happy with all the pokes he'll be getting this week. Say a special prayer for him that he won't get too scared or frustrated with the situation.

I just found this Bible verse and couldn't help but share it with you tonight. It made me think of sweet Joseph who is waiting to be baptised...it was scheduled before all this happened. He told our pastor that he asked Jesus into his heart and he wants everyone to know. God willing, nothing will stop him now, and everyone will know that he is a child of God. What a happy day that will be! How perfect this verse is for him!

My flesh and my heart may fail, but God is the strength of my heart and my portion forever. (Psalm 73:26)

Love to all!
Angela, Stephen, Joseph, and Abigail

Home Sweet Home

We made it home this evening around 5:30 pm! We had a special friend bring over dinner and now we are heading to sleep in our own beds! I can post more about "the plan" after I've had a good night's sleep. Good night!
Angela, Stephen, Joseph, and Abigail

Pesky T-Cells

So.......Joseph's T-Cells went up overnight and were around 80. Dr. Ringewald said that was very possible and he might expect it to do that. They want it to be below 25. Joseph will start another round of Thymoglobulin later today so we know we'll be here for at least one more night. That's fine by us considering we thought we'd be here for at least another week! They will test his counts in the morning and make a plan from there. We just can't believe how far we've come in such a short time. What a roller coaster ride. It was very reminiscent of two years ago, but this time I think we were more comfortable with the whole process. Joseph was alert and commuinicating this time which made things more bearable as well. We are hopeful that we can keep Joseph infection free during the next few months. Frequent handwashing, staying away from anyone with illness, and staying away from crowded places are once again Dr.'s orders. We are old pros at that anyway so it won't be too difficult. Thank you for checking in! We hope to see you all back in Florence really soon!

Heart hugs,
Angela, Stephen, Joseph, and Abigail

This is Incredible!

So..........Dr. Ringewald came by at the end of the day. Nothing like waiting 'til the last minute to get news of how your child is! :) Anyway, it's incredible.....on a scale from 0 - 4 with zero being no rejection and 4 being total rejection, Joseph's level is 0!!!!!!! Can you believe it?? I couldn't believe my ears. They are so pleased and surprised! The Thymoglobulin seemed to be very a stubborn process but it did the job! We are unbelievably grateful for the way this rejection episode has turned around. It's beyond belief to us! Dr. Ringewald stated he would have been "happy as a clam" with a level of 2! I thought Abby was all about the drama but apparently Joseph likes to take things up a notch, he's just sneakier about it! :) We love him so much and are so happy to share this great news with you. Thank you for your prayers. Thank you for your kind words. Praise God for the great news!!

Here's a verse that helped us through the worry....
Come to me, all you who are weary and burdened, and I will give you rest. Take my yoke upon you and learn from me, for I am gentle and humble in heart, and you will find rest for your souls. For my yoke is easy and my burden is light.
Matthew 11:28-30 (NIV)

Late Wednesday Update

I would have updated earlier but it's been a real busy day for me. Stephen needed to head home for the day to take care of some things and I've been really busy with both my kids. We went to the atrium 3 times today! Abby went with him each time and that did her heart good. Joseph's cath is scheduled for first case, so he might be heading to the cath lab around 7:30 AM. We are hoping and praying that his biopsy and heart cath will show improvements in his heart and no rejection. Please pray for good results! Stephen and I are staying positive and looking forward to the day we walk out of here again with Joseph and Abby holding our hands.

I have 2 Bible verses I'd like to share with you tonight:

I can do everything through Him who gives me strength.
Philippians 4:13

"But now, Lord, what do I look for? My hope is in you."
Psalm 39:7

Good night ya'll!
Angela, Stephen, Joseph, and Abigail

Tuesday Update

Joseph went to the Atrium this morning and played with his cousins this afternoon. Now, he is resting and watching a movie (Eragon). He has very stubborn bone marrow so they are going up on his dosage of Thymoglobulin and he will start a new 6 hour run of it later today. His T Cells are still active! Geesh........they just don't give up, do they? We've learned so much about the body's immune system this week, more than we cared to know to be quite honest.

Let's pray specifically that his immune system will just calm down and stop fighting his heart. Let's pray that Abby will stop worrying about her JoJo. Let's pray for the doctors and nurses who are taking care of him. Let's pray that Joseph's spirits stay up. Pray for peace for all of us that surpasses all understanding.

Thank you for your prayers.
Love to all,
Angela, Stephen, Joseph, and Abigail

Monday Evening Update

Dr. Ringewald came by this evening and said Joseph looks great. He also said that his 3 beat run of VTach (irregular heart rhythm)was probably because his heart is a little sensitive right now with everything that's going on and it's common with what he's experienced and not to worry. I admit, the word VTach brings back feelings of panic and anxiety and Dr. Ringewald figured that freaked us out a little, for good reason. The next biopsy is still scheduled for Thursday. Joseph is still receiving his Thymoglobulin right now and is getting ready to take his night time meds. The good news is he recently learned to take pills so it's not half as hard for him to get down all the meds like it was two years ago! :) Abby has enjoyed visiting her JoJo tonight and has been working really hard to make cards for him so he'll get better really quickly. She's really worried about him so we're trying to let her spend plenty of time with him to ease her fears. It seems to be helping. Thank you for praying for us and sending us messages. They lift our spirits when we are feeling down or scared. Love you all!
Heart Hugs,
Angela, Stephen, Joseph, and Abigail

Monday Morning Update

Good morning all. Thought I'd post a quick update earlier in the day this time...sorry I waited so long yesterday. The hospital can be a very busy place! I know you may be worried about our little man. Joseph developed a fever last night and didn't feel good. But, the good news is his fever is already gone and now he feels fine. :) We all think it was just an adverse reaction to the Thymoglobulin. It didn't last long, thank goodness. He had one 3 beat run of PVC's, which means a little irregular heartbeat. But the good news is it only happened once and they will do an EKG this morning.

Did I tell you that when Stephen was driving to meet us in Charleston Thursday night he saw a rainbow? We both think that was a good sign of things to come. :)

Joseph's main complaint about the hospital is not how he feels or that he is scared. Nope, he's just bored. He is decorating the big window in his room with the solar system. He's making it out of Bendaroose (As Seen on TV). :) I told him we'd better find a science book, because it's been forever since I've had to align the solar system. Between Google and Nurse Caroline.......we'll get the project done. He lives for the time that the Atrium is open. So, for now we are watching the clock waiting for the doors to swing open and let us in! :) I'll post later in the day to give you an update from the docs.

We don't understand why these things happen, but this Bible verse brings us peace.
And we know that all things work together for good to those who love God, to those who are the called according to His purpose. (Rom 8.28)

Heart Hugs,
Angela, Stephen, Joseph, and Abigail

Hanging In There

Joseph is hanging in there! He feels good today and we are so thankful for that. He just started his second round of Thymoglobulin to wipe out his T Cells. So far, that is going well and he is not having any reactions. We spoke to the doctors and they are pleased with what they see so far. The next biopsy is scheduled for Thursday. That will help us know if the treatment is working. Joseph just informed me to write that he feels great, not good! So there you have it from the patient himself! :)

Thank you for your prayers. We feel your love and support.

So do not fear, for I am with you; do not be dismayed, for I am your God. I will strengthen you and help you; I will uphold you with my righteous right hand. Isaiah 41:10

Love to you all!
Angela, Stephen, Joseph, and Abigail

Watching & Waiting

Joseph has had a better day. He started the immunosupressant regimen and has had no side effects, which is great. Now we just watch and wait. He was pretty comfortable all day and the pain in his side has decreased tremendously since relieving his body of so much fluid. He is once again getting spoiled here by the sweet nurses and wonderful doctors. He had some very special visitors today and that lifted his spirits quite a bit! Abby was really excited to see him. She bought him a special present and brought it in proudly to her big brother. She gave him a big hug and told him she hopes he gets better soon. Joseph was able to put on a mask and they rolled him into the atrium to play for a while. The atrium is wonderful and is a "safe zone" where doctors are not allowed! He and Stephen built a fort out of wooden blocks, played X- Box 360, and made a really cute craft project out of popsicle sticks and cotton balls that he wants to hang in his room. He is so funny, he said to us tonight that he doesn't understand why he's still in the hospital since his side doesn't hurt anymore! :) If it was only that simple! He is ready to go home and so are we. But, we'll stay as long as it takes to get him better.

We want to thank everyone for their prayers, and we hope you continue to pray that his treatment will stop the rejection so Joseph can be restored to full health. We want our vibrant little boy back at home, riding his bike around the neighborhood, and chasing his little sister until she screams.

... For God has not given us the spirit of fear; but of power, and of love, and of a sound mind.
2 Timothy1:7