Challenges!! Bring it on!!

I think every year starts out with really, really hard challenges.  This year has been no different, the first week was ok, last week was extremely draining.  We went to 7 different doctor places none of them for Jaren! I took the kids to see their counselor on Monday and there appointments are each an hour long so we were there for 3 hours but I don't want to drive up there three different days back and forth.

Tuesday I went to another appointment for me yes it was nice to have time by myself even if it was at a doctors office, but I was a little frustrated by the time my appointment ended I wanted to cry.  We had a incident a couple of weeks ago where RaKelle and Jaren got in a fight when I was not home and RaKelle got yelled at by Jaren and it scared her she was hysterical, I talked to her about it and she said she was afraid and she didn't know what to do because her dad had never ever yelled at her before I made the two of them talk about it, I then realized that I can not leave them alone with him he can't handle the pressure, so of course I was frustrated because I will never be able to have me time without either some of the kids or Jaren.  I went to the bishop and we came up with a solution that when I need to have some me time I would find a babysitter for all of them or for at least some of them, we then had a family meeting together telling them the plan and they all agreed that was the best thing.  I can NOT function without some ME time at least once a month I will have a breakdown.  I talked to RaKelle's counselor about the incident and he helped her work through some things and I talked to Jaren's doctors so that they could change some things so he wasn't so irritated with everything.  I then told my counselor and she told me that she had a legal obligation to turn us into CPS that totally freaked me out, I wanted to talk about it so that I could figure some things out not for her to tell me that she was going to turn me in. 

Now for the next day, Braxton came home from school and he was really whiney, he said to me mom do I have pink eye? my eyes are burning, I said "no" and felt him and he was burning up with a fever of 102.2 I gave him some motrin to bring the fever down and I took him in because he had a really bad cough, they started him on an antibiotic and sent us home.  The next morning he woke up with a croupy cough so I called our regular doctor and they fit him in that morning, we went and when the doctor came in he said " I am worried about his blood pressure, can we take it again?" they took it again on the other arm and he said " that makes me worried his blood pressure in his right arm is higher than the blood pressure in his left" so they did an exam and then said can we check your blood pressure again.  They took it 10 times and he was so brave he just let them do what they needed to do.  The doctor then said I don't think we are going to treat the croup yet but I think we need to do further testing on the blood pressure thing.  I guess when the blood pressure is higher on the right arm than it is on the left it means there is something not right with the heart, they wanted to do an EKG, and an angiogram but they decided they wanted to start out with x-rays so they sent us straight to the hospital for x-rays.  The doctor called that same day with results telling me that everything looked fine but that everytime he came in to the doctor they wanted to check his blood pressure. (talk about a scary day).  I then went and pick up the girls from school and RaKelle informed me that she thought her thumb was broke, back to kidscare. Last time I didn't believe Ashlyn when she broke her arm so I figured I would take RaKelle in to get an x-ray, sure enough it was broke in two places. 

Jaren actually slept all night on Thursday and of course I was up with Braxton all night with croup we went outside at 3 to clear it up so he could sleep.  Nope no sleep he could breath better, but he wouldn't go back to sleep. 

Now for the ending of the LONG week, We had the hospice doctor here on Monday and he checked Jaren out, new Medicare rules are making it so that the doctor has to recertify the hospice patient the nurse can't do it anymore.  Friday the nurse from hospice and the social worker came over and told us that we probably wouldn't be able to stay on Hospice much longer because he isn't declining physically enough it is all cognitive,  How stressful that is to hear I don't want him to decline faster but I also don't know how I will be able to do it without there help.  I guess I will go back to calling a ton of places again, I don't know that I can take the rejection again but I have no choice, I am determined to get the help that we need. 

I thought I was ready for the new challenges we would be facing, but I started to change my mind and then a new week started, even though the challenges are still here I am ready to face them so BRING IT ON!!! some days I might have to pretend that I can handle them and then fall apart when nobody is watching but we will get through it somehow with the help and support from friends and family that help us through a lot of things.  I know we only go through the things we can handle and that we will learn from the challenges, what in the heck am I not learning by all this that I need to learn?

New Year, New Challenges!!

It's the beginning of a New Year, yay we made it another year! but with a New Year comes new challenges, Christmas was wonderful this year, we had so many angels watching over our family and we were taken very good care of, I am amazed at how people are so giving even in these hard times that the world is experiencing.  I am sure it wasn't easy for some of the people that helped out.  We had a secret Santa, I don't know who it was but if you read this blog a huge THANK YOU to you for helping make this Christmas a memorable one for our family, we might not have another Christmas together.  I was also able to stay home over the holiday break because I work at a school, we did a lot of fun family things together, which makes it more apparent how blessed I was to lose my job earlier and be able to find a job that I can be home when I need to be home.

Now the New Year is here and the challenges of the disease are very apparent, Jaren is still on Hospice and will re-certify AGAIN this month so another month of looking for all the stuff that is going wrong.  I went to breakfast with a really good friend over the holiday break and her husband mentioned to keep 2 seperate journals, one for the good to look at and one for the not so good, what a great idea.  Thanks Brandon and Ronni. 

Jaren is still doing ok, he has been in a tremendous amount of pain and a lot of meds for the pain, which means his legs are not as stable as they have been, he was using a cane and was starting to trip and not walk so good with the cane so they brought a walker for him which will help stabilize his walk a little better.  He qualified for Medicare and that is another challenge for us to get all the paperwork straight and what they pay for and what we have to pay for and who does what and when, WOW what a change.  I don't even know if they will pay for his insulin pump supplies, it would be nice to get everything in one letter and one mailing instead of getting paperwork every single day and trying to figure it all out, I think they would SAVE a TON of money if they only sent paperwork one time instead of daily.  I seriously have 3 files that have Medicare and Social Security stuff in them and they are packed full.  We are excited to start the New Year and see what we learn this year from the MANY challenges we will face together.  Thanks for the support of everyone that has helped us along our journey and those that will continue to stick by our side and support us, through the easy and the hard times!!