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!!

It's that time of year again!

Our family has been very blessed this holiday season, we won a family portrait sitting at FotoFly Photography.  They did an amazing job and it was so much fun.  We were very happy with how the pictures turned out. 

We also won a holiday lights makeover for the outside of our home from FM 100.3.  They are amazing!! They supplied Jaren, and I and the kids with some special glasses that when you look through them the lights look like snowmen or snowflakes it is really really cool.  Below is a picture of what they look like through the glasses.

We are so very thankful for the many blessings we have received this year for the holidays.  We are so thankful that we are able to spend another Christmas together as a family!  We never know what life will bring in the coming New Year but we will cross that bridge when we get there, sometimes you just have to live day to day and thank Heavenly Father that we made it through another day!!

Someone once said to me I wish I could win things like that.  I thought about it for awhile and decided that I would love to not win things if that meant that I would not have a husband that is dying.  But the reality is, is that his life will end before it should. 

I have also had to think a lot about Medicare because Jaren has now been on Disability for 2 years and at that time they automatically qualify for Medicare, I should not have to think about Medicare until we are very old, but I have to, so much paperwork.  He has had a very very hard week this week with many things his memory is horrible this week,  the pain he is suffering from is very difficult to listen to he is in severe pain and has had to take a lot of pain meds this week.  He has also been suffering from a cold and has been coughing like crazy he gets bronchitis so easy that turns into pneumonia that I get worried when he gets a cold, I asked his hospice nurse to listen to his lungs when she comes over and she has listened every time she comes over, so far he has been clear, but she pointed out to me that being on hospice we had the choice to treat him if he does get pneumonia or bronchitis because of hospice we don't have to treat him, BUT the infection could cause him to go septic, so then we are faced with another decision, with him being so young I would definantly treat it, but I had no idea that we actually had that decision to think about it, I just always thought that when he gets sick he goes to the doctor and they give him medicine that will hopefully help him get better.  That was kind of a rude awakening to think about the possibility of that being untreated could cause his life to end much shorter than we had even anticipated.

So much to be Thankful for

With Thanksgiving just this last week I have been thinking about what I am thankful for. I have so much to be Thankful for, I am thankful for my kids and that we are still able to enjoy Jaren and that he still knows who we are. I am thankful for my health without it I probably wouldn't be able to handle the things that I am dealing with right now. I am thankful for the friends that we have and for the many hours that they kidnap me and take me out for an hour or so. I am thankful for my family that helps me with the kids and Jaren so much and that they don't complain when I call and ask them to do things for me. I am thankful for the job that I have and for the bosses that I work with, they are so understanding of my situation that I know I am meant to work there.

I am thankful for the new friends that we made this last month, she knows exactly what I am going through her husband acts the exact same as Jaren, She is a huge support to me, we can talk and now exactly what the other is saying. Jaren and her husband get along really well, the first day we met them Jaren said to me "I wish we lived closer to them, he would probably be my best friend." they have a daughter that is 5 days younger than RaKelle and they understand each other also, they can relate to each other, there are not many friends out there that have to hold their dad's hand to cross the street, or babysit their dad when their mom has things to get done.

Sometimes it is hard to be thankful for things that can not be helped, I am thankful for the blessings and the many people that have come into my life because of MLD but I can NOT say that I am thankful for the disease it is hard to sit back and watch your husband act in a childish way and not know why he is doing the things he does. I try not to dwell on the negative side of the disease but lately I have not had a choice, to be on Hospice he has to be declining physically and so we have had to watch every little thing that has declined in his abilities to do anything, he has to recertify for Hospice every 2 months so now that we are done with the recert for hospice hopefully we can start looking at the positive again for a couple of months at least to get us through the holidays.

What to do?

I am not really sure what to do now days. I am struggling with the fact that I am working and not being able to stay home and take care of Jaren, not to mention I can't seem to get anything done when I work. I am having a hard time with the fact that Jaren sits home and plays nintendo all day, I need to find something for him to do instead of vegging on the couch all day but he can't go out walking unless someone is with him and he can't drive so what do I do with him? I don't really know what to do at this point. I came home from work one day last week and he was wandering the neighborhood thank goodness I came home when I did so he didn't get to far. Hospice comes in on Monday, Wednesday, and Friday but I am still trying to find something or somewhere for him to go on Tuesday and Thursdays. I am feeling guilty that I am not doing enough for him and that he is going to just get worse if I can't get him off the couch.

I am struggling with things that happen to people everyday in life, Braxton came home with a note from school saying that he needed glasses I know it is little but that is huge to me everything that happens is one more thing that I have to think about and do something about. I don't take much time to think about things I just have to do it and get it done so I can check it off my list. We went to the dentist today and no cavities but he stated that RaKelle will need braces in the next couple months, and Ashlyn is going to need a new flipper soon so she doesn't have to go with out her two front teeth from her accident that happened a year ago. Sometimes I just wish that I would only have one trial at a time but living with MLD is a trial day in and day out,and it will never end, and what would I learn if everything wasn't dumped on me at one time. I wish that MLD was the only trial that I had to deal with but that will never happen especially with kids. Thanks for listening to me gripe I just feel like sometimes I can't get out from under and it seems that things will never stop and I sometimes NEED a HUGE break!!

The big day is over!

My sister Jessica got married this past week, it was a long day for us. Jaren did really well he was extremely exhausted but endured through it so that I could be there the whole time for my family, the kids did very well also. They were married in the Draper Temple and again I was there alone but it didn't seem so bad this time, maybe because there were others that were by themselves. We are very excited to have a new member of the family "welcome to the family Brian!"
I am really enjoying my job and the hospice nurse still comes to the house 2 times a week and I get another massage this week yeah!! the social worker also comes at least once every 2 weeks. I have stopped asking members of the ward to come in and check on him the other two days because they never show up when they sign up, it isn't worth it to send a sign up around and have nobody even come, even when they sign up to be here, someone told me maybe I should call them the night before and remind them but I don't have the time to be calling people to stop by I guess I will try a different route on those days.
Jaren actually came to church today also, the kids had their primary program so he came to watch the kids sing and say their part they did an excellent job we were very proud of them. Thanks to both sides of the family for coming to support the kids.

Reminiscing

I thought I would sit down and write a little bit because I haven't written for a while. I forgot how hard it was to work and still be a caregiver, it is very difficult, but I enjoy my job I get to go out of the house for a couple hours a day.

I have been thinking a lot about weddings because my sister is getting married in two weeks, I have been thinking back to when I was married and thought that we would be living a perfect life together, I would not change getting married but I can't help but wonder how life would be without MLD and what other challenges we would be faced with. I enjoy getting involved in preparing for Jessica's wedding and enjoying the showers that I am able to attend. I enjoy getting my kids involved in helping out with preparations they love it. I am also having a hard time with dealing with the fact that I am not married to the same man that I fell in love with, I am now a caregiver/spouse and that is very difficult to deal with lately.

Jaren has been in a tremendous amount of pain the last couple days he hasn't slept very well which means that I don't sleep, his legs have been cramping so bad that he has had a hard time walking even with the assistance of the cane. His memory continues to go downhill, I can have the same conversation with him 20 times a day and he doesn't remember any of the conversations. He is enjoying his time that he gets to play nintendo while I am at work and the kids are at school, he has a very good friend that comes over to play nintendo with him on Monday afternoons and he really enjoys it (thanks Jason). Hospice is still helping me out with his care and other things that come up with MLD. Our nurse is amazing and she is so personable and she acts like we are her only patients. Some days I totally unload on her and she acts like she knows what I am going through even if she has no idea. We are so blessed to have such amazing people in our lives.

I will try harder to keep up with the blog I sometimes just feel very overwhelmed, and very exhausted after a full day of taking care of him and the kids and also working and cleaning!