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.
No More a Teacher
8 years ago