Both Infusions done!!!

Well, I told you all that I would update sooner than I have. Sorry about that, life always throws you curve balls and Im now just getting around to it. It is hard for me to post, I get very emotional and it gets my mind going and thinking to much! My heart is so full today, so I guess that means this needed to be done today.
Talan has had both of his infusions, and yes it went well while he was receiving them. The results of the infusion can take up to 6 months to see what it will do for him. But watching him get it was scary, Im not going to lie. Some of the reactions he could have had were either minimal or none at all. One in particular is the breathing. He had a little issue with feeling some heaviness in his chest and seemed a little labored breathing. His oxygen dropped and so did his blood pressure and then the blood pressure spiked. But just as all that started to happen, little tender mercies happened and he was able to pull out of them. I could go into detail, but as I get talking it just doesnt  make any sense to all of you. This is when Stan needs to step in and help me write this. Ha ha.... he has a way with words that I cannot do.
When receiving this medicine the nurses administer certain drugs just before the infusion starts, this is so he wont have severe or any reactions to the medicine. One of them is a steroid. Talan has been told to stay away from any form of steroid because of his endocrine problems. One of them being his cortisol levels. Ok, so I know most of you do not know what cortisol is, but it practically runs our bodies. This is kind of like our fight or flight adrenaline. Cortisol causes us to wake up and go to sleep. IF your body produces to much cortisol it can cause you to stroke and cause death, or it can get suppressed by steroids and cause you to have very little. Too little can cause death to. Talans cortisol levels have always fluctuated more on the little side than too much. This is why it is scary for him to have steroids.
At this point, Tal has had a really bad week or so. He was doing pretty good with bursts of energy after the infusions. I think partly that was due to the steroid given him. Its a win and lose situation. Steroids can help him with his disease because it is also a inflammatory disease. But bad because of the endocrine system, and shutting it down. He has been sleeping a lot the past 3-5 days. His pain is out of control, and just cant seem to find any energy. Which in my terms, I think it has to do with the coritsol, or is he going through what we call "one of his cycles"? I sometimes wonder why I have to know so much about all of this? But if I didnt know, I would not know the waring signs and how to try to help. Its times like this that I wonder just how many days are left numbered?
There is no way of knowing just what is being affected inside of him, sclerosing is a hard one to detect, maybe the Lord doesnt want us to know. All I can say is what an inspiration he is to all of us, and having to endure such a trial. Thank you all for your thoughts and prayers. We so appreciate all that you do for him and us, even if it is just a hello! We all have our trials to bare and I hope those of you that are also suffering can find peace and comfort also! May God bless us all! We love you all!!!

Little Miracles lead to BIGGER MIRACLES right?

Well another chapter starts. We finally got word about a week and a half ago that the medicine that we have been fighting for for Talan has been accepted by the Insurance. This is a miracle in itself!!! YAY!!!!! It has been a long time coming! This medicine along with lots of faith and prayers is the only hope we have. It may not cure him but it will surely help. We will always go for a cure though! Many prayers have been said and lots of FAITH is what its all about. Talan sure is a fighter, and a strong soul!
This medicine is called Rituxin. Some of our friends out there have had this, there are side effects Im not going to lie, but doesnt everything seem to have side effects? Of course we know that Talans body is different and he reacts to about all medicine, mostly in a negative way. This is why we would ask all of you if you would please keep Tal in your prayers. We hope that his body will receive this medicine and take it to its full advantage. It is a 6 hour infusion, he will be at the U of  U all day tomorrow. This will be his first infusion and in two weeks he will have one more. He will then wait 6 months to see if it has worked and if he will need more. This is a wait and see what it will do for him, help the symptoms, slow the disease process down, or put in remission???? All would be great.
Talan is such a special spirit and we as his parents have no idea why he has to suffer at such a young age? It is very hard to watch and be helpless. But he has been an example of courage, faith and endurance! We believe that this will the first miracle that will lead to the next! He has not been able to serve at the Temple for awhile, he fell at the first of Oct. and hurt his back again. We have been trying to nurse it back since, which entailed sticking 6 needles in his back and injecting medicine. He also has falls when his leg gives out on him, which has happened several times just this past week. Talans motto is NEVER GIVE UP!!! He is not giving up, but he is very nervous about tomorrow. I know his Dad will take very good care of him, I cannot go because Im a little under the weather and the Doc said I could not be around him or the people down there. Please also keep Stan in your prayers as he is a little nervous himself being alone with him. This is such a special bonding time together. I want to thank you all for your support, thoughts, calls, texts, and prayers in our behalf! May God bless all of us going through trials at this time, as we know we are not alone! Love you all!
I will give updates as I know.....If any of you have Tals # it would be great if you could shoot him a text to say hey!