Sunday, August 30, 2009

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

Friday, August 14, 2009

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 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

Wednesday, August 12, 2009

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

Sunday, August 9, 2009

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 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

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

Friday, August 7, 2009

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

Thursday, August 6, 2009

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)

Wednesday, August 5, 2009

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, August 4, 2009

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, August 3, 2009

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

Sunday, August 2, 2009

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

Saturday, August 1, 2009

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