I know I've gone off the grid for a while but I think i have a pretty good reason, life has been literally CRAZY. I had a baby and during the same time my hubby Bryce or ill just refer to him as Mr. T has developed a really rare disease. so we have been trying to cope with that as well. But lets start first with the exciting news I had another Baby I have to say he is super adorable minus his screaming from colic. I'm pretty sure the neighbors think I'm murdering him, He just screams and I mean SCREAMS for hours on end no matter what you do until he either finally tires him self out or you get him in the perfect position, but be warned if you move from that position even a inch let the crying begin again.
Meet Brody
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Addy Is doing really well she is 2yrs old now. It blows my mind to think I am the mom of a two year old. where has the time gone, it seems like just yesterday she was the size of Brody and loving to snuggle up close. Now she is on Sassy stubborn full of life toddler. Man I wish I had her energy and her memory. That girl seriously doesn't forget a thing. She remember the tiniest details and can remember something months later even if she only seen or did it once it is amazing!
Mr. T (Bryce) has been on a crazy roller coaster the last few months he was Diagnosed with a rare disease Ankylosing Spondilitis (try and say that ten times fast) or A.S. for short. Its an Auto Immune disorder that makes your body attack its self mainly the joints in your body and also causes your back to fuse together its often times nicknamed bamboo spine because the almost exactly what it does to your spine. They originally thought he had a mild case and weren't to worried and tried him on some mild medications only to find they didn't do anything but make him extremely sleepy how he got through finals week with decent grades I have no idea its truly a blessing from God. after the first round of meds they decided to step it up to stronger things and he was put on methotrexate a chemo medicine used to treat cancer. No his diseases isn't cancerous they just use chemo to see if they can slow down the progression of the disease. Sadly all the chemo did was make his extremely sick tired and grouchy for most the week then he would start feeling good again right before it was time to take his next injection. after a few months on that he went back in and they did some more MRIs and Xrays only to find that his disease is Progressing Much Much faster then they originally believed and the methotrexate had done little if anything to stop it. They want him to get on Humira which is stronger and more effective than the methotrexate only it is super expensive and by super expensive I mean 2,600 with out insurance and 568 every two weeks with insurance. since we are not millionaire or rich by any means we obviously cant afford that so he is now applying for medicaid disability which is set up to help people with disabilities cover the expensive medicine and the many Dr. appointment. so we are praying he gets approved so he can begin his medicine. other wise the Dr's are afraid that he is going to be in a wheel chair with in a few years. I am continually amazed by his positive outlook on this and how hard he tries to let it not affect him. It truly is a life changing disease and has affected every aspect of our life. I'm just glad we have the gospel because it has helped us to feel like everything is going to work out and we can truly see the blessing that we have been given. Here is a excerpt from president Thomas S. Monson talk Believe, Obey, and Endure. here that I love and it is one of the many words of our church leaders that have helped our family deal with our hard times.
I have spoken over the years with many individuals who have told me, “I have so many problems, such real concerns. I’m overwhelmed with the challenges of life. What can I do?” I have offered to them, and I now offer to you, this specific suggestion: seek heavenly guidance one day at a time. Life by the yard is hard; by the inch it’s a cinch. Each of us can be true for just one day—and then one more and then one more after that—until we’ve lived a lifetime guided by the Spirit, a lifetime close to the Lord, a lifetime of good deeds and righteousness. The Savior promised, “Look unto me, and endure to the end, and ye shall live; for unto him that endureth to the end will I give eternal life.”
For right now we are just living one day at a time, we have our good days and we have our bad but as long as we stay positive, and have faith we can conquer anything.
ps.
Today I am thankful for air conditioning 100 degrees is just way to HOT!
So sad to hear that about Bryce. Your beautiful and very sweet family is in my prayers! Please let me know if I can do anything at all :) Love you guys.
ReplyDeleteI can't wait to see little Brody again. He is such a cutie..
ReplyDeleteSo I was thinking about Bryce in a wheelchair, and I picture him in a sweet pimped out one. One with more of a racing style seat, maybe a cool paint job. I think when its closer to the time he has to have one we do a fundraiser so you can get him an awesome one. haha Seriously what Bryce has sucks and we are here if you need anything.