Tuesday, December 29, 2009
Merry Christmas & Happy New Year!
Sunday, November 1, 2009
Saturday, October 31, 2009
Home & Ready to Trick-Or-Treat!
Looks like Abby and Stephen were having fun while Joseph and I were at MUSC.
Tuesday, October 27, 2009
Latest on JoJo
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
Sunday, September 13, 2009
Joseph is heading to 3rd grade!
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
Monday, September 7, 2009
Not Yet...
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
Sunday, August 30, 2009
School Days
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
Friday, August 14, 2009
Great News!
Heart hugs,
Angela, Stephen, Joseph, and Abigail
Wednesday, August 12, 2009
Check Up This Friday
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
Sunday, August 9, 2009
The Plan
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
Saturday, August 8, 2009
Home Sweet Home
Angela, Stephen, Joseph, and Abigail
Friday, August 7, 2009
Pesky T-Cells
Heart hugs,
Angela, Stephen, Joseph, and Abigail
Thursday, August 6, 2009
This is Incredible!
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)
Wednesday, August 5, 2009
Late Wednesday Update
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, August 4, 2009
Tuesday Update
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, August 3, 2009
Monday Evening Update
Heart Hugs,
Angela, Stephen, Joseph, and Abigail
Monday Morning Update
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
Sunday, August 2, 2009
Hanging In There
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
Saturday, August 1, 2009
Watching & Waiting
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
Friday, July 31, 2009
Cath Update
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
Sunday, July 5, 2009
Wet 'N Wild!
Nothing is as fun as a day at the beach!
Abby practices writing her name in the sand...she is getting ready for kindergarten!
Thursday, June 25, 2009
Summer Fun!
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.
Monday, June 1, 2009
Joseph Made His Wish!
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
Saturday, April 25, 2009
Joseph Officially Turns 8!
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!
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
Monday, April 13, 2009
A Happy Heart!
Thanks for checking in! We love your support and prayers for our family.
Tuesday, March 17, 2009
A Taste of Spring
Thursday, February 19, 2009
Flu Season Is Here
Thursday, January 22, 2009
Snowy Day
Until next time...
Angela, Stephen, Joseph, Abigail