what now.......really?

I am just going to vent a little so if you don't like it, don't read it.  I think I can say I am done with trials this week, it seems like they all hit at once.  I can't take much more before I have a meltdown.  Please stop hounding me!! I finally have some nights where Jaren sleeps and I am up because of everything I am trying to deal with.  I don't even want to answer the phone anymore because I am afraid someone will want something and I just don't have to energy to talk on the phone.  I just want to crawl into bed and sleep my problems away, but I don't think that will ever happen.  I am trying my very hardest to keep us above water and I feel like I am failing miserably.

 

We went and met with a new neurologist and she was really good. PLUS she is so much closer than the UofU.  She wanted an updated MRI and I am interested to see what the progression is, he has not had one since 2007. She was very up front about telling us that she is going to treat him symptomatically because there is nothing that they can do with MLD. We assured her that we knew that and we just wanted to be treated symptomatically because we know there is nothing anyone can do to change the diagnoses. I think she will be very thorough and she will do everything she can to make him as comfortable as possible.  We had blood work and an MRI so now we just wait for them to call us back and let us know what is going on. 

Decisions, decisions

Why are there so many decisions to make in life? I had to make a really tough one this last week, after Jaren spent that evening in the hospital I knew I had to take action and find something that would help me out.  I knew that the Beehive house took people for the day so I finally made the decision to take him up there during the day while I was at work.  I know that if I had someone checking on him during the day then we could have avoided going to the ER.  I took him on Tuesday for the first time it was very, very difficult and wierd to drop your adult spouse off at a daycare, I wanted to cry all the way to work but couldn't because I didn't want to teach 4th graders with swollen red eyes.  He was really excited to go there he got up and got ready on time and we took the kids to school and then I dropped him off.  He was ready when I came back to pick him up but said he enjoyed it.  Everyone there really liked him and they said on our way out the door "Don't forget about us, we are always here" They can't wait for him to come back.  He asked our 11 year old if she would go in one evening and play the piano for all of the residents there, of course she said yes.  I feel like my kids are learning so many different things and learning about so many different ways to be compassionate to others with disabilities from going through all of this stuff with their dad.  They are more aware of how people with disabilities get treated and they are so much more caring about disabled people.  RaKelle keeps asking if I have called to ask when she can go to play the piano. 

I have been trying to avoid taking this step because I knew it would be hard, but after spending 9 hours in the ER I knew something had to happen.  I am trying to stay as positive as I can about it all but it is going to be difficult when he can't remember us and I have to make the hardest decision ever to put him in a home.  I hope I don't ever have to do that.  It was extremely nice to be at work and not have to worry AT ALL about him I knew he was being taken care of and I didn't have to call and check up on him and remind him to take his sugars and then get home and find out he didn't because he forgot after hanging up the phone.  I am sure a decision like this seems so easy for most people but to me it was very hard.  I don't know how he will react to things like this and I am not sure what will happen if he comes to a point where he is calling the other women at the nursing home his girlfriend because he has no idea what is going on and why he has to be there.

what a crazy week!!

This week has been a never ending week.  It started out ok but as the week went on the more challenging it got.  Wednesday came and when I got home from work Jaren had been throwing up all day and was really dehydrated, I thought maybe if I gave him a shot of insulin and change his pump site and make him drink a lot of Powerade Zero, he would be ok because that is what we usually do, he couldn't keep anything down including the powerade zero.  I took him to the ER because he was so dehydrated his voice was high and raspy and his lips were sticking together and his tongue was stuck inside his mouth.  They registered us at the ER and we sat in the waiting room for 3 HOURS, he was not getting any better his heart rate was 115, and he kept having to run to the restroom so he didn't have to puke in front of everyone in the waiting area.  They FINALLY called us back into a room and we sat for another hour waiting for them to start some fluids, the doctor came in and looked him over and they finally started an IV to get some fluids in him, they did blood work, the doctor then said he would be back after the blood work results were in the nurse was excellent and she was very caring and she was really concerned about Jaren.  She came in many times to make sure he was comfortable and to see that all of his needs were being met.  The results came back and the nurse told us that the White Blood Cell count was extremely high and that they were also worried about the Lactate levels they were also high.  Once he had 2 bags of fluid in him they retested his blood to make sure the Lactate level was down, the lactate level came down BUT the white blood count was still really high. 8 1/2 hours later the doctor came back in and told us that we could probably go home but that the white blood count worried him but the IV fluids made him look and feel a ton better so if he were to let us go home we had to follow up with our family dr on Thursday and we had to check his blood sugars every 4 hours even in the middle of the night.  We got home about 11:30 pm from the hospital and went to sleep for 4 hours and then back up 3 hours later to go get the kids from my moms so they could go to school.  We went to see our family dr and he didn't know why the hospital dr didn't start him on an antibiotic not only were his white blood cell count high the BAND white blood cell count was high and those are the cells that fight infection, Dr Richards started him on a heavy antibiotic and told us to follow up at the hospital lab with more blood work to make sure the blood cell count was going down.  Another night of no sleep because we had to get up again every 4 hours to check blood sugars, by Friday I was extremely exhausted and everything would set me off. I sat on the couch on Friday evening and cried for 2 hours. 

The doctor never called us back on Friday so I figured no news was good news, I looked up his labs on the website that he has with IHC and it showed that the blood cell count went down a lot, so I fell asleep Friday night and slept until Saturday morning, Yay a full night of "normal" sleep for me, which is not that long anyway but it sure felt good.  The kids have been extra clingy this week because of all of this especially Ashlyn, but we will make it through.  Thanks to my dad for waking up after a long night at work to pick up the kids from school and taking them to soccer with you to keep their minds off of everything.  Ashlyn only called me 2 times while we were there I was amazed.

Saturday was our 13th anniversary and of course he doesn't remember what day it is let alone what the date was, I asked him if he knew what we were celebrating today and he looked at his watch and said "I think so, I think it is our anniversary" I was very glad he had remembered.  He then said Happy Anniversary.  I couldn't have been happier that he remembered to say those words to me.  13 years ago we knelt across the alter not knowing that we would not be together for a long amount of time on this earth but knowing for a fact that we would be together for eternity, that is very comforting to me.  We were able to go to an amazing restaurant with some awesome friends that celebrated their anniversary this week as well, her husband has been diagnosed with and unknown leukodystrophy so she knows first hand how I am feeling.  We had an amazing dinner thanks to her friend that owns The Wild Rose at the District the food was delicious and the service was great and they wanted to do something special for us because they see how hard it is for my friend and so we did not have to pay anything for dinner.  It is an expensive restuarant but well worth the money, I know we will never be able to do that again because we would have to save forever to go there again.  The kids all stayed together at our friends house and not one of them called us while we were out which made it even better to know that they were not fighting and they were all getting along.  I can't express how thankful we were to be treated like we were the most important people in the world. 

The week started out LLLOOOONNNGGG but ended really, really well.  I am still trying to catch up on much needed sleep but I am doing a lot better today than I have been all week.  I totally unloaded everything on my friend the other night and she just listened to me and cared about me and we had a good cry today, sometimes a good cry helps. She was on her way to a birthday party for her daughter and she STILL didn't tell me to suck it up.  Thanks Mary for being an amazing friend and always making time for me to whine, and complain.  You are always there when I am down and can't get back up.  Thank you for being my best friend my entire life, I couldn't ask for a better friend.  I just hope that I am as good to you as you are to me. 

now what?

I am beyond my stress breaking point at the moment.  Hospice has decided that Jaren is too stable to be able to stay on hospice so they are taking him off of the hospice program which is good that he is stable enough to not have hospice but what am I supposed to do? they are coming tomorrow to do the exit paperwork and he will have to give back his cane, and his walker, and he won't be able to get meds anymore through them.  I have researched taking him other places but they charge to much for care I would be working to pay for him to have care what a waste.  I am frustrated that when you leave hospice that they have to take everything away.  With MLD we fall through the cracks with so many other programs that I get so frustrated and angry that there is not more to help people in our situation.  Medicare is giving his pump supply place problems and not wanting to pay for his pump supplies because he is on hospice so I have been fighting with them because hospice will do nothing for his diabetes at all, he has not had supplies for his diabetes since December because of Medicare.  I am so tired of fighting with everyone about everything just to get something for him.  Now I have more on my shoulders because I will have no help from hospice, I will not call hospice again unless I absolutely need it I don't want to get help and then have them swipe it out from under us again, I can't do it this week has been an emotional roller coaster that I don't have time for or the patience for.  The diabetes supply store contacted me earlier this week also to let me know that he has to keep track of all of his blood sugars and there has to be at least 4 a day for medicare to keep the supplies, how on earth do they expect me to track it when he doesn't even take his sugars regularly because he can't remember how to take them or doesn't take them because he can't remember that he needs to take them. 

Soccer is starting this week also and the kids are excited but all I can think about it how am I going to do it all and keep the kids involved in activities? I just can't do it all, the kids might miss a week or two of practice because I can't be in forty places at once.  I will try my very hardest but I can only do so much before I shut down to a point where I can't function.  Hopefully when I get used to no help from hospice I will be able to get on a different schedule and be able to do MOST of it without having a breakdown.

I guess I have something more to learn with all of this stuff that is being thrown my way, sometimes I am just in survival mode and just keep going.  Sometimes I wish I could just have a spouse to talk to about things and not feel like I am talking to a child that doesn't understand anything I am talking about.  I just hope that I am learning enough that I will not regret any of the decisions that I have to make.  I want to be able to face my kids and say I am doing my best and I know you didn't have a "normal" childhood but look what great kids you have turned out to be because of the trials that we went through together.  Now that I have complained enough I have to go get him ready for bed so I can get some sleep to wake up and start all over again. 

need to vent!!

I am so frustrated right now I could scream, they are going to drop Jaren from Hospice most likely in a week, because he is too stable.  Now what they have helped me out so much I don't know what I am going to do, not to mention now that we won't have hospice anymore we are losing everything his cane, his walker, all of his meds so frustrating.  I can take him to a day program but it is $8 dollars an hour I will be working just to pay for his care.  Needless to say this week has been a living hell.  I called to make an appointment with his neurologist because with hospice we can't see the neuro but if they are going to drop him I have to take him in and get meds and a cane or a walker I have called two days in a row to get an appointment and the "person" that makes the appointments for his Neurologist is covering for someone also and so I have left 2 messages and not one phone call.  I think I want to change my mind about bring on the challenges, I think I am done for awhile.  So the daily routine we have is about to change AGAIN which means more for me to do.

Then why do some people get embarrassed for the things that Jaren has to do or use to help him? it just isn't right, if you can't accept him for him and the equipment that he has to use then don't come and see us or go with us anywhere.  Why do some people just not get the fact that we are NOT normal but we are STILL  human and he also has feelings just like everyone else.

I am having one of those weeks, I can't do anything without him standing right behind me over my shoulder telling me how to do it different and how to, I make something for dinner and he doesn't like it or I ask what sounds good for dinner and he says I don't know, so I suggest something and it never sounds good.  The nintendo playing is driving me absolutely nuts, I can't get him to do anything lately and then I can't get the kids to do anything because they want to play nintendo with him when they get home from school.  Thanks for listening to me gripe.

Jessica and Brian were so nice to take us snowmobiling this last weekend, we had a great time, the kids enjoyed it so much. It was really cold but we still had fun. Braxton was in 7th heaven because he rode with Brian and he did some fancy stuff with the snowmobile and Braxton couldn't wait to go to school to tell his friends that he got to do some cool tricks. They were exhausted that night and went to sleep very quickly it was great. Thanks Jessica and Brian for taking us!!


Ashlyn will be turning 10 on Sunday, I can't believe it, she is growing so fast, and she is acting so much better maybe she will give me a little break until she is a teenager.   Our youngest Braxton will be 7 in two weeks, he is growing like a weed and hasn't stopped.  RaKelle has been asked by our bishop to sing a solo in church she is amazing with anything that has to do with music, she will be singing this Sunday, I don't think she is even nervous she will do an amazing job.  I wasn't sure if she would be able to do it loud enough but I went over with her to practice the other night and I couldn't believe how amazing she sounded. 

A DAY IN MY SHOES

I just want to write a little about what a day is like at our house, the day begins at 7:00 am I usually get up and get myself ready for the day and then get the kids up and ready about 7:30 am getting them ready is sometimes not that much fun sometimes they fight, sometimes they don't want to get ready on time and they sit around.  I am trying to get Jaren set for the day in between telling the kids to brush hair and teeth and shoes on, getting Jaren ready for the day is just as tiring as going to work.  I have to get meds ready for him, make sure he takes his sugars, and eats breakfast and sometimes I have to stay right next to him to make sure he takes his meds, if people are coming over to see him either the nurse, or a volunteer from hospice I have to make him aware so that he doesn't get scared when someone knocks on the door, I have to tell him that we will be back in a few hours and that if he needs anything to give me a call at work or on my cell.   I feed them breakfast and we are out the door by 8:15 am on a good day.  I then go to work from 9:00 am to 1:15 pm I work with 4th graders and Kindergarteners and make copies, and sub in classes that need some help or if another aide isn't there.  I get home from work and make sure Jaren gets lunch and give him more meds.  I then start some laundry or dishes and then it's time to pick the kids up from school.  When the kids get home from school they have a snack and then they do chores, I make the kids do chores because I can't do it all myself.  I have to put Jaren's name on the chore chart also because he needs to do chores too, and he hates doing the same things over and over every week.  Our chore chart consists of living room, dishes, bathroom, garbage and sweep, those are the daily chores that they rotate weekly, and every Thursday they have to sort their own laundry so that I can wash it on Friday's on my day off then the weekend they get to fold it all and put it away.  After chores are complete I try to get them to do homework while I am making dinner, we eat between 5:30 and 6 pm on good days, during soccer season and when things come up we don't eat until later.  After dinner we watch a little tv and try to get the rest of their homework done.  Then it is about time for bed so we start the bedtime routine, I give meds to the ones that need it, and scripture study and family prayer then the kids go to bed, I can't go to bed until they are asleep or I have kids in bed with me.  I also can't go to sleep until Jaren goes to sleep or he will get up and wander or do things that he shouldn't be doing.  In between all of my day to day fun I have to make sure Jaren is taking his insulin and his blood sugars.  I then get to go to sleep and hope that I get more than 3 hours of sleep in a row, then the alarm clock goes off and it starts all over again!!

I felt like I needed to share with others what it is like living in my shoes even for one day, I have probably left out a ton.  Somedays are not as stressful as others but some days I don't want to get out of bed especially when Jaren didn't sleep that well the night before.   I am not trying to get pity I just feel like some people do not really understand how hard it is to feel like a single mom and have a spouse living in the same house but can't do a lot of things that most spouses can. 

one of those weeks

This week has been one that I do not want to remember, Jaren woke up with pink eye on Monday in both eyes, and he has pneumonia.  He has been on heavy antibiotics and drops for his eyes and the eyes are looking better but the coughing is still horrible and it sounds awful and like it hurts really bad.  Because of the infections I can't keep his sugars below 200 which is really high.  He is not a very fun person to be around when he is sick, he is ornery, and he whines, and mopes around all day but if I were him I wouldn't even want to get out of bed in the morning so I should just be thankful that he got up today.  He doesn't sleep well at night either so when he is sick it is worse, and when he doesn't sleep I don't sleep I have to stay up with him and make sure he doesn't wander. 

We went to the diabetic doctor on Tuesday and she would like to take him off of the insulin pump and put him on an insulin shot that he would only have to take 2 times a day once in the morning and once at night, which could be a good thing because he would only have to take his sugars twice a day, but his diet would be very strict which means I would have to lock up the cupboards when I am at work and what would happen if he goes low while I am working I would not even know until I came home and he was passed out or something.  Why do some decisions have to be so difficult? Well if there were not difficult decisions we would not learn anything, but do all decisions that I have to make have to be so hard? I can't talk to him about what he wants because he doesn't even remember talking to the doctor about it, so I am on my own.  I can't wait until this week is over, it has been a stressful week and I just want to crawl in bed and stay there until things get easier!! too bad that won't happen anytime soon so I better just take a deep breath and suck it up and hope the week will end better. 

One question I have this week is why do I feel like I am alone?  I feel like I can't hang out with friends anymore because of what we are dealing with and I can't always get away to do the things that others get to do.  I know I have a lot to deal with but don't shut me out because I am not like normal moms or wifes.  I like to do things with friends even though I don't get to stay out for a long period of time, and sometimes I might have to bring along a child or two.