Our hearts, prayers, and love go out to the Sabin family this week for the lose of their sweet baby girl Annie Sabin. Annie was 4 1/2 months old and was born with tetrology of fallot. For the duration of her life she fought against all odds and various other complications to brighten the lives of those who were lucky enough to know her.

One of the blessings of being a mother of a child who has special needs is that you are able to associate with incredible parents of other children with special needs. This is especially true in the heart world. I have met mothers in the cardiology clinic, in the pharmacy, in the outpatient blood lab, and in the hospital halls. Let's face it, Primary Children's Hospital is a second home to many of us. I was blessed to meet Amy Sabin after Matthew's transplant while Annie and Matthew were in the cardiac ICU together. I went to Annie's viewing on Monday to try to express my love and support to Amy, Cameron, and their family (Annie was the sixth child) but found myself being strengthened by them. What an amazing family with incredible faith and strength. This exprience was another testimony to me that during difficult times the Lord truly is aware of us and can carry us, if we allow him, when things get difficult. I would hope that if I was placed in a similar situation, that I would demonstrate as much faith and trust in the Lord as Amy and Cameron have these past few weeks. Thank you for your good example- truly you are amazing!!

Matthew had an appointment yesterday. We are in a holding pattern until his next biopsy which will probably take place the first week of September. Right now he is doing fabulous except he has an attitude that can only be described accurately by Emily (one of the transplant coordinators) as "roid rage". My sweet, mild tempered baby now hits, screams, and yells "no!!" routinely. I have to smile because I know that this behavior stems from the high dose steriods he is currently on and is not a reflection of his new personality-- hopefully! So far, his rejection has been attributed to the steriod wean schedule he was previously on. For most kids, the schedule works just fine. But, for others like Matthew, they need to be weaned more slowly and some kids actually need to stay on steroids forever. Only time will tell what Matthew can tolerate and if there was damage done to the heart as a result of this rejection episode. We are hopeful that once the rejection is under control, all the pressures will normalize. Until then, we are enjoying each daily victory!

Dear Friends and Family,

We know that it has been a while since our last posting but things have been fairly stable. . .that is until today. Matthew had another biopsy and unfortunately the results were not as good as we had hoped. He has mild rejection. We suspected it before we even got the results because his diastolic dysfunction was somewhat off on the echo and his wedge pressure was high on the right heart cath. He isn't going to go back to the hospital because it wasn't bad enough for that but his steroids which had almost been tapered off are now on higher than they ever were before. About 25% of heart recipients will have rejection in the first year. We were certainly hoping that we would be one of those families without any rejection because the mortality rate goes way up now and the longevity of the heart goes down. They have tried to tell us not be too concerned and that they see this all the time . . . I wonder if they have ever been parents.

Needless to say, we are frustrated. It looks like more house arrest is what we are in for. The frustrating thing is that we have done everything that they have asked of us to the T. We haven't missed any doses of any of his drugs, haven't taken him out, and have kept masks on (in our house) until about 10 days ago. Oh how I wish we understood more about immune system.

Matthew doesn't know any different. They call it silent rejection or early rejection because it really hasn't affected him much or his ability to function. Our next biopsy will be in two weeks and we hope that things will look better then. Please keep him in your prayers and we will try to keep you posted.

In three days we hit our "2 month" mark since transplant! Where has the time gone? I'm sorry I haven't been as diligent at keeping up the blog. You would think that I would have things under control by now and things would be slower-- not true!! In fact, it seems like life is crazier now than ever.

Matthew was scheduled to have a biopsy today. However, yesterday afternoon it was cancelled due to the start of Matthew's cold. I have no idea how I am going to keep Matthew healthy when his little brother is Luke! Luke is a germ magnet. He seems to pick up anything and everything he's been exposed to. The fact that he picks his nose, licks his hands, sucks on his shirt, etc etc. probably doesn't help his ability to stay healthy either. He is also my rebel. He puts on a mask when asked but as soon as I turn my back he "loses it" or "it falls off." Joshua is the opposite. He is the most diligent hand sanitizer and mask wearer in the family. One morning he reminded Luke that he needed to put on a mask and Luke exclaimed "I like germs! and I like to get sick!" If anybody has any ideas on how in the world I should deal with this obstacle I would welcome any ideas! In the meantime, we are holding our breath praying that Matthew can stay healthy enough to avoid another hospitalization. I think the 14 different anti-virals and antibiotics he is taking as a prophylaxis are definitely helping provide some defense so far.

Matthew still continues to struggle with eating. We have literally tried everything in the book to get him to eat and none of it works. I think for Matthew it's a control issue. He may not be able to control a lot of things in his life, but he can control what he puts in his mouth. Besides, he is taking a lot of nasty medicines and has developed a bad aversion to any food. He currently has an NG tube which we give him nutrition through at each meal and then continuously at night. Sometimes the NG tube's cap comes off and it acts as a suction emptying the contents of his stomach onto my floor. It's pretty gross. I just don't think NG tubes and active toddlers where meant to go together..... EVER! The transplant team is pushing towards having a GI doctor place a "G" tube in the near future. They think his eating issues will be long term and they favor a "G" tube over an NG tube for longer term use. Placing the tube will be an overnight procedure which should happen soon.

Other than that, Matthew is doing great!!! Seeing Matthew happy and playing makes every second of all of this worth it! Thanks so much to everybody for all your love and continued support. We are grateful for each and every one of you!

I hope everybody had a great Father's day weekend! I am so grateful to my own father for all the sacrifices he made for our family growing up. His kids are his life. He truly invested ALL of his free time into raising all 8 of us. I don't remember my Dad having any outside hobbies, interests,or friends because I think that more than anything he genuinely loved being with his family. He took every opportunity he could find to teach us and create memories with us. Thanks Dad!! I love you!! Furthermore, I am extremely blessed and grateful to have the very best husband and Father for my own children that there is in this world! All of my children adore their father and have great relationships with him. Matt is so busy that beyond work, like my Dad, the only free time he has is spent with the boys. Josh, Luke, and Matthew live for every moment spent with their Dad. Thanks for all you do for us Matt- we love you more than words could ever express!

Our family had a great weekend. We had a family campout in the backyard and enjoyed being together, making smores over the firepit, playing games and attempting to sleep in the backyard in the tent (we almost made it but Luke was too scared of the crickets so we came inside early to try to get some sleep). Matthew must have said "I so happy!" about 20 times (literally) that night. The rest of the weekend was just as fun- Matt had the weekend off!! That alone, was the best Father's day gift anybody could have given him :)

Matthew continues to recover. He regressed a little since our last post. For a little over a week cardiology has been watching his white cell counts which continue to drop (his ANC is .4 for those who care to know). He is on a medicine called Valcyte because his donor's heart tested positive for a CMV virus. Typically this virus is not very threatning, in fact many of us could be carriers with no symptoms at all. However, when you are immune compromised and then exposed it can turn into a big deal. They are thinking the Valcyte is causing his levels to drop to as low as they are but they really can't do anything about it for 6 months until his treatment for CMV is complete. Until then, we are getting creative with some of his meds and hoping that we don't have to adjust his Cellcept (one of his immune suppressant drugs). He may need to start some injections of some sort to try to stimulate bone marrow production again. We'll see-- it's an appointment by appointment process. Until then, we are being even more careful about spreading germs (if that is even possible). I feel like I'm going through laundry, face masks, Lysol, and paper towels like crazy.

We also met with a dietician who told us that although Matthew is eating a lot better, he is still only intaking 1/2 the calories he needs. So, in went another NG tube. I was really upset about having to put in another NG tube, but then he started rebelling against taking his meds by mouth and I figured it's good to have an alternative route in case he's not cooperative. He also started throwing up and for the past three days (as part of his bedtime routine I'm guessing) he likes to throw up his NG tube so we have to replace it nightly. I know recovery takes a long time, this weekend brought me back to reality! He's such a sweet, happy little guy. We sure do love all our kids lots!!

Matthew had an appointment yesterday with Cardiology and they gave us the go ahead to take out the NG tube. Now, for the first time in a month, Matthew is completely free of any wires or tubes!!! He is doing awesome. The doctor also said that his first two heart caths and biopsy's looked perfect so we get to wait for another month to repeat his next one. For the time being, we only have two appointments weekly where they will check his blood, do an echo, and go over his ever changing and adjusting list of medications. Matthew is even getting used to the doctor's office routine. The other day when we were at an appointment, the cardiologist said "now I better take a listen to Matthew." Matthew jumped off my lap, walked over to the doctor and lifted up his shirt. Then he turned around so she could listen to his back. After she was done Matthew excitedely ran over to me and exclaimed "I did it!!!"

Today was the first weekday I have had Josh and Luke back at home without doctor's appointments and it was wonderful!! We felt somewhat normal and are getting into a summer routine. Joshua and Luke are best friends. I love to see their relationship develop, especially through the difficult times. They also LOVE playing with Matthew. Matthew follows them around all day long. Joshua told me that Matthew is like a toy that got a new battery. The toy is the same, but because of the battery the toy has much more energy. I always love how Joshua explains things so perfectly....

The boys are back in town! After being away for almost two weeks, Joshua and Luke rejoined us. I wish that I could have captured Matthew Jr's face on camera when I pulled up. They spent the evening building blocks, playing with cars, and pushing each other around on "McQueen". It is so nice to have them back. Thank you Liz and Kurt for taking such good care of them.

Matthew Jr. had another heart cath today. It was only the 4th doctor's visit this week. If he ever gets sick its gonna be bad because it will come from some doctor's office. We are getting better with the sedation issue and thankfully he came out of it okay. He took a good nap this afternoon and this evening he was back to himself. We also got a telephone call and they again informed us that there was no evidence of rejection.

I hate the idea of rejection. You are never safe. It is always there . . .lurking. I am sure that it will cross our path someday but for the time being I am just happy that he is doing well.

Today is Matthew's three week mark from his initial transplalnt surgery. When I think of what has happened during that time, my head starts to spin. It feels like it's been three months, not three weeks.

Matthew is still recovering, but he is doing awesome! He is doing things he's never done before. The other day, he was playing in the living room and just took off in a sprint. Me and Matt looked at each other with amazement and wondered if what we had just seen had really happened. Matthew has much more energy then he has ever had and he is sleeping less (he was sleeping 18 hours a day prior to surgery). The other day he wanted his blankie from upstairs in his room so I went up to get it. By the time I got the blanket and turned around to bring it to him- Matthew had made it halfway up the stairs and WASN'T lying down taking a breather in the middle of the stairwell like he used to. Yesterday Matthew had an appointment with his pediatrician and she was amazed out how well he looked. She told me that the last time she saw him, prior to surgery, he looked like a tired old man. Since transplant he looks like a totally different child she said.

Josh and Luke finally come home Friday and I CANNOT wait!!! I am hardly ever away from my kids, so this has been a difficult challenge for me, and them. Matthew told me he was mad at Josh and Luke yesterday because they aren't home. I think Matthew will finally be able to keep up with his older brothers and all three of them will have a blast together. Thanks again Liz and Kurt for showing them such a great time in Arizona and thank you Jen and Ryan for bringing them back to us!

We will let you know how the biopsy goes on Friday. Until then, please pray for good news from the biopsy and a smooth recovery after sedation. Thank you to everybody for your continued support!