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!!!!

All it takes is LOVE, FAITH, AND COURAGE!!!! HAPPY BIRTHDAY TAL!

Livin on Faith

                                                          Tim Gates, from "Due West"  singing to us:)

Traveling to Yellowstone

This was last night when he told me he didnt feel good.

Yellowstone

Yellowstone

Yellowstone Talan and Stan (Dad) trying to give me a heart.... lol

Yellowstone accomplishing the finished heart!

23 Birthday

Playing a little bball with dad

Playing a little ball with dad

Yellowstone

Yellowstone

Yellowstone

23 Birthday

23 Birthday

23 Birthday

23 Birthday

Olive Garden dinner date with Mom and Dad

Also last night when he didnt feel well

Traveling home from Yellowstone asleep

Talans 23 Birthday

23 Bday

Called to Serve Brigham City Temple bracelet for his Bday

Well I guess its been a few days since I have updated. This momma has been sad and heart broke and cried just a few times this past few days. Its so hard to see Talan battle his battle! Lets just say that days are getting worse and he starts and ends what we call cycles off and on. They seem to come more and more frequent lately and it sure takes a toll on his body, and mine.  There is one thing for sure as I give him his daily shots of medication, I just want to cry.  Once was his hip area, once was his buttock, and now on to the thigh of tissue turning hard, as I inject it feels like Im injecting into grissel. Sometimes as I inject the tissue is so hard I have to pull out and go to another spot because it wouldnt push through. At times I can get it to pop inside and then he screams and says he feels it going in directions through his tissue it shouldnt be going to. This is because the route of medication is trying to find alive tissue to absorb into. This just about makes me cry and nauseous everytime I have to do it. He is totally a trooper and some how gets through it. Bless his little heart!  As we both fight for sleep and to keep ourselves going. He sure tries to get up and function, but his poor body says NO!  He has about an hour a day of energy and if he does to much he finds himself in bed till the next day. Just last night I cried at his bedside as he could hardly tell me in the most cringing voice, mom, I dont feel good, I just dont feel good. I feel Im getting sick, could you please sit in here with me and watch me and make sure Im ok. THIS is what Im talking about, he is starting a cycle.  I just wanted to fall to my knees and plead for comfort for him, and the pain and sickness to just go away.  Dear Lord, why must I watch my precious little boy slowly slip away???? I dont like it!!! 
All he wants is to be normal and function, have a life, a girlfriend, wife, kids, college, work, and so forth..... as he tells me this I just want to cry. Ok, I do cry. I tell him that Heavenly Father must have another path for him, and how else do you look at it? He told me just the other day that he hoped to die in his sleep and wake up out of pain and in a beautiful place, and be able to pick the most beautiful girl to marry on the other side waiting for him. I dont know, maybe she is waiting for him? That about broke my heart in two, but how can you not think about how wonderful that would be for him to be out of his pain. Then I want to slap myself for thinking such things, Im selfish and want him to out live me at my old age of being a grandma to  his children!
  He just had a Birthday on April 12, and he turned 23!  Im so thankful and feel so blessed to still have him here. He looks at his friends, sister, and others moving on and it really sometimes takes a toll on him. He just learned of his best friend graduating from college and moving to Maryland within the next month, he has stood by his side, comes to see him, and takes Talan places to get him out of the house. Talan slipped into a little depression for a few and days and cried and cried. For he seen that life moves on unfortunately for others and his does not. We try to keep him positive and ourselves to, for this trial is strengthening, teaching us unconditional love, faith, perseverance, and humility. I know that my Heavenly Father is blessing me with the health and strength to keep going every day as Stan also.
 Talan wanted to go to Yellowstone for his birthday to our time share.  So we packed him up about two weeks ago and went on a venture with him for a few days. Of course we tried to tell him there was nothing to do up there but he still insisted we go. I told Stan that we needed to go and spend some quality time with him, as Stan is so busy with everything he does to keep us afloat. We got up there and never left the condo. Talan was to wore out to even go for a ride. He mostly slept the whole time we were up there. He went from the chair in the living room to the bed in the bedroom. The picture above shows just how wore out he was. It makes us sad to see him so wore out. Im afraid its just going to keep getting worse. His reasoning skills are getting harder and harder to deal with. He doesn't realize it either, that's the hard thing.
We have had hurdles to jump the past month and a half, Talans pain Dr. passed away from cancer and he was the BEST! He helped us stay on top of his pain and everything else he could, a very intelligent man and now he is gone and we have been lost trying to find a new doctor.  Finally we have found someone to help for the time being. On the good side of things we have also found a Dr at the U of U to watch over him as his disease progresses. We have yet to find a doctor that would or could do this for him. We were excited to know someone delt with sclerosing and would take him on.  What a blessing that will be.  We have not been yet for the first appt., unfortunately he cant get in until June 19. He is on a cancelation list. I can only hope it will be sooner. She will follow his lung function, intestinal function, and pretty much everything from what we understand. His intestinal tract is sclerosing and he doesnt eat much that has to be digested much by the muscle function inside the intestinal tract. He mostly is eating right now, Chex mix is his favorite, if you think about it, it is pretty much mush before it enters the tract. Easier on him, softer foods is where he is at, at this point. Oh and of course his pepsi! ha ha
About a month ago Tim Gates from Due West was passing through town and came out to our house and sang to us. What a great guy, how genuine he is and how grateful we were to hear him sing and bring us peace. He will never know just how much it meant to us to take time out of his busy day to come out to our home and sing and shoot the breeze with Talan. We appreciate him, Due West and Nashville Tribute band for the compassion they have for Talan and others in need. They have literally touched our souls! IF, you have never heard of them please go to YOUTUBE and look them up! So Im sharing with you one of the songs that Tim shared with us, please enjoy.
One thing that is on Talans list to do this summer is redo his room. His room is done in hunting and has been that way since he was in High School. So he is trying to plan what he would like to do. This is giving him something to look forward to, and I guess I will have my summer cut out for me. He wants to do his room like "Hawaii five0 the new series", like their work room, with diamond plate stuff on dressers and have places to put stuff he likes. His room is pretty small and his bathroom really small. Im trying to figure out how to make it more user friendly. He has to step up and down a stair and sometimes falls off coming down the stair, and he hurts himself.  As he scleroses it worries me how we will eventually get him showered, and getting him up and down that stair and to make his room more user friendly. Funds are just not there to do a lot. SO if any of you have any great ideas, let me know! This kid at least still has creative skills, ideas and his sense of humor. I sure do love him!!!
Thank you all for your thoughts, prayers, love and support as we go through this enduring trial. We love you all!!! His courage to keep fighting helps me to keep going! Jen

Talans at his sisters (Janide) wedding

 These were at Talans (sister), Jandies wedding on December 14, 2013. I will cherish these FOREVER!!! These were the only pictures with Talan that day. He was to sick to attend the luncheon, pictures, and reception. :(
What a wonderful day it was. All of us in the Salt Lake Temple at the same time.... I couldnt ask for anything more than an Eternal Family!!!