One Year!!!

Joseph has crossed the one year milestone. This is very important because transplant patients have the highest chance of rejection during the first year. On Friday he had his annual biopsy and things looked great with no rejection. What a marvelous journey this has been. Joseph has gone from being very sick, to feeling good and being hopeful that things would continue to be good, to truly knowing that he feels good and doesn't have to worry about his heart getting sick again. In December, Joseph began eating a lot more food at each meal and throughout the day. This is a sign we have been waiting for. Now he is hoping to see signs of growth - he hopes to one day cross the 5 foot mark. Last week, Joseph started a PE class at school. This is going to be great for him. On Thursday he was exhausted from all that he did in PE but he loves having no restrictions. I am looking forward to seeing some muscle mass on his scrawny body. It is great to have him doing so well!!

Disney World

Disney World was amazing and fabulous and wonderful. The trip couldn't have been better. It really was a wish come true for Joseph and he was able to do everything he dreamed of. To hear more details of our trip check out the Disney World Vacation blog that you can link to from this site.

Make A Wish Party

On Monday Joseph had his Make a Wish send off party. He invited the teachers quorum, aka really loud, obnoxious boys, and Brother Shelley and his family and Grandma and Grandpa Talbert. We all went up to the Make a Wish building in Murray and there he was given stuff for our trip. We received things like games and puzzle books for the airplane trip; lots of snacks for the airplane trip; ponchos and sunscreen for Disney World; and the info and expense check for our trip. Afterwards, Joseph etched his name on a star and raised it to the ceiling to stay there forever. We finished off the party with cake and ice cream. Joseph had so much fun. He couldn't stop smiling and his eyes sparkled so much. It was wonderful. Next is our vacation!

Disneyworld here we come!

We are going to Disney World for Joseph's Make a Wish Vacation! We will be leaving on the 18th of July and returning on the 24th of July. We will be staying at the Caribe Royale hotel and our trip will be coordinated by the people at Give Kids the World - they are volunteers that have an entire village set up just for wish families. We will have access to their village which includes a pool, an all you can eat ice cream parlor, a theater, and some game rooms among other stuff. Our hotel's pool includes a 75 foot water slide and looks very sweet. We will also be going to all of the Disney World venues that we can, including the Magic Kingdom, Epcot, Animal Kingdom, MGM Studios, and two water parks. It will be crazy but it will be an absolute blast. We will post pictures after the trip.

Lfie is Great!!

Well, it has been a couple months since I last wrote an update but life for Joseph is Great!!! At the end of April Joseph was released from his isolation time and the first activity he did was to go to scouts and bike 10 miles. It was really hard and he didn't keep up with the other boys even a little but he made it to the end and he was never as tired as he was before the transplant. Joseph's biopsy in May was good - no rejection - and since then life has been all uphill. Joseph has gone to only seeing the doctor every three weeks - this was mostly due to our need to be other places when he should be going to the doctor, the first time was for Kent's graduation and the second time was for Diane's wedding, and the third time was for scout camp. Normally he should still be at every other week visits. Some of Joseph's other accomplishments are that his longest bike ride has been 14 1/2 miles. He can swim so much better than before - his body likes the water better and he doesn't get as shivery and he also has a lot more energy and swimming doesn't wear him out as much. Joseph is also a lot more bouncy and energetic and has a smile on his face far more often. It is amazing what feeling good can do for your attitude. Joseph will have his next biopsy before he goes back to school in August, but for now life is more normal than it has ever been and it shows in his personality and in the way he enjoys his friends and family more. Life is certainly great!!!

Recording

This is a recording Joseph did to help Primary Children's with their radiothon (hope it works!)

Joseph's Recording

update 4/17/08

Right after I posted the last update Joseph had a biopsy that showed mild rejection. This was not a happy day for Joseph. All the good things he was looking forward to had to be postponed. He had to increase his steroids, add a medicine that he had already finished and continue on one that he was looking forward to stopping that day. He also was not allowed to go to young men's as had been the plan and we had to continue our twice weekly visits. Time makes everything better and 3 weeks later Joseph is back down on his steroids and looking forward to getting off of some medication and we are only seeing the doctor once a week. He has had no physical signs of rejection except for the biopsy results and that means we are catching it early. He continues to have so much energy and to be extremely active. He is running and biking and doing pretty good at keeping up with his friends (who have been wonderful to spend so much time with Joseph, it makes his days go by so much faster). Overall we feel very good about his health. His next biopsy is on May 2nd and we don't expect any rejection because the doctor also changed one of his long term meds and hopefully that will keep it from returning.
Wendy

March 26

Wow time flies! Life for Joseph just couldn't be better. It has been three weeks since I posted an update and life is amazing. The protein losing enteropathy has completely gone away. His belly is flat like it should be and we are working our way off of the medications to treat this. One medication is gone and the other is getting the dose cut every Monday. We cut it down today and will do so again next week and then we should be able to stop it. Joseph body is also adjusting to his new heart. The measurements that they take with the ultrasound when they do an echocardiogram are all in the normal range and we are looking forward to his biopsy on Friday to see if the pressures in his heart are in the normal range as well. Energy wise Joseph is doing great!! Last week we started walking a mile to see how he did and since that was no problem this week he has permission to begin running, biking, or any other exercise that doesn't include physical contact. Overall they would like him to avoid physical contact sports like football forever but they admit that many patients do not. However, until he reaches the 6 month mark he cannot participate in sports where his chest could get injured. Today we also learned that when he finishes the rest of the medicine called Valcyte that we have already purchased he gets to be done with that. This is fabulous news because it is the medication that costs us $600 a month after insurance. Sunday will be the last day he has to take this medicine. We will now only have to pay about $400 a month for medication but since this will continue for the rest of his life we will adjust and budget this in. All the other medications that will go away in the next year are cheap but Joseph is just happy any time he has one less to swallow. We are also excited to have the biopsy on Friday because if it goes well then Joseph will be allowed to go to Young Men's on Wednesday nights. He can only go if they are doing activities that don't require going somewhere where there are a lot of people and if one of the other boys is sick then Joseph will have to leave but we are excited to have him get back out in circulation a little bit. Hopefully soon he will be able to go back to church as well.
Another fun thing that happened for Joseph is that he got to go to the Make A Wish Foundation and make a wish. This is an amazing program for children ages 4 - 18 who go through life threatening medical experiences. They get the chance to wish for either something to be, somewhere to go, something to have, or someone to meet. They actually get to make 3 wishes with only the 1st wish being granted unless they are not able to make that wish happen then they go to one of the other wishes. Joseph was referred to the Make a Wish foundation in October and his first wish was to meet the BYU football team but that wish came true a different way so by the time we were able to finally go and make his wish last week he had decided that he wanted to go to Disney world because it was a place he had wanted to go and because he could ride in an airplane and ride roller coasters. We are looking forward to going to disney world this summer (after July 7th - his 6 months of isolation will be over). Make a Wish provides for the entire family to go for a 6 night 7 day vacation and they pay for everything including souvenir money for all the kids except for Kent who is 18 and will have to use his own money for souvenirs. Needless to say Joseph has one more reason to be excited for the summer.

Wendy