Wednesday, September 3, 2014

SUMMER FUN

SWAT TRAINING











Jeep ride at Island Park

Jeep ride at Island Park









Well its been awhile since I have updated.So much has been going on in our family the past few months that Im finally getting around to updating Talans blog. He has had a few good months, lets just say he still has his horrible days, but for the most part he has been doing ok.
We were introduced to a new Dr at the U of U in June. She gave us some tips on what we could do to help Talan, but unfortunately she told us NO MORE INFUSIONS!!! One they seemed not to be helping him and second she said she didnt want to suppress his immune system anymore than it was already. She ordered a CT scan to be done on his lungs and a echocardiogram. The CT scan came back with a few changes. The test has you inhale and exhale as it takes pictures of your lungs. We now know that when he is exhaling he is getting air trapped, he cannot expel all of his air. He needs to see a pulmonologist for that, but he refuses. He is sick of Dr appts and says, and what are they going to do about it? Nothing! So maybe in time he will go. The echo came back ok. That was good news. Over the summer we were able to go on a little vacation to Island Park at a friends cabin. Thats all Talan wanted to do was go and just enjoy a new scenery. I cant blame him. We took his best friend Carson with us, because this was going to be the last time to do something together for a while. Carson was moving to Maryland in August to work on the Naval base. Some of these pictures above is our little trip.
Another fun thing that happened, was we did kind of a make a wish for him. For some reason a miracle happened, I love those tender mercy moments!! Long story short, we met a guy that was fitting Talan to his new back brace. He had connections to the Special OPs SWAT team in Salt Lake City Utah. I totally believe that God had his hand in all of this. This is what Talan would love to do if he could. We were able to take him down and train with the Special Ops SWAT team. I cannot thank those gentlemen enough that made this happen. You know who you are! It was so fun to watch him be in his realm, and the SGT that was in charge was just amazing with him!!!! He took Talan by himself and helped him shoot at targets and just spent one on one with him. The smile on his face was priceless, and those few hours were the world to him. We were even able to go in the helicopter they had there. They were actually doing training in that, shooting at targets. The SWAT TEAM was awesome and made him feel like he was one of them. They were so genuine, and so heartfelt towards him. As Talan spoke with some of them, they just told him that his lot in life was a different one and he was their hero for fighting the battle he was fighting. It sure made this mom a happy mom, ok and dad was the same. After having two flat tires that day, and the swat team changing one of them for us, and me blowing my knee out getting into the helicopter. It was still an awesome day that we will never forget! Thanks to the one that brought over the ice pack, and wrap for my knee! I dont think I have ever been that embarrassed before!!! Totally a blonde moment on Talans day. I will be posting more pictures than I have here, along with a video for you to see when they are done.
Talan and I also re-did his room together just recently, and now is paying for it. I see the trend coming on of him starting one of his mean cycles. He has bronchitis right now, nearly pneumonia. As the weather changes it starts to effect him. I hate watching, and not being able to do anything about it. I have watched on the social media of the ice water bucket challenge, it has brought me joy to see people at least acknowledging there are rare diseases out there and life for these people affected it is horrible for them. I wish there was a way to raise awareness for Talans disease. But in due time Im sure there will be. Thank you to all of you for your continuing thoughts and prayers for him and our family. We appreciate all that happens in our behalf, and are truly blessed to have all of you in our lives.
I have started a FB page for Talan. It is called Talans Fight, it should be attached to his blog that you can go and like it. I will try and update that weekly there, although it will not be as in depth as here.
Love you all!!!!