Wednesday, April 14, 2010

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 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.

Tuesday, December 29, 2009

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

Sunday, November 1, 2009

Happy Halloween!

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

Saturday, October 31, 2009

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

Tuesday, October 27, 2009

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 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!

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

Monday, September 7, 2009

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