changes for Jaren

Jaren is not doing so well the pain is almost unbearable he has a hard time getting up in the morning we have to help him out of bed.  His memory is getting worse he can't remember things that happen at all, the other day he had a hard time remembering who RaKelle was it seems to take his brain a lot longer to process things than it use to.  I am trying to be patient with him but sometimes it is very hard and frustrating that he doesn't know what I am saying to him and we can't have a conversation like regular people.  We ended up at Instacare today because I thought he had pneumonia again because his sugars have been crazy, and the last 3 times he had pneumonia his blood sugars were high and he didn't have a fever or a cough luckily today everything looked clear.  Maybe I freak out about stuff like that but the worry on my kids face when his sugars are high is not fun to watch, it was to scary the last time he was hospitalized and I don't want to relive that again.  He has a hard time getting dressed by himself because of the pain, he acts more like a kid everyday, he laughs at things that are not funny but to a kid (or him) they are funny.  

I have to write a conversation I overheard between Jaren and his sister, she came to visit the other day I had a hard time not laughing out loud.  This is how it went

"I decided to come and see my brother before he disowned me." 
Jaren "it's to late I already did" 

She didn't know what to think or say, with him being so childlike his honesty is really showing, he says it like it is and if you don't like it to bad, he doesn't have a filter anymore and he doesn't realize he could be hurting someones feelings, he seems to do that to the kids a lot he can't tell when he hurts feelings.  He can't carry on a conversation anyway but he can sure add his two sense in when he feels like it.

Our home teacher came and took him to the Oz movie and he enjoyed it so much, I asked the guy that took him if he did ok and he said you can definitely tell that he is having a harder time sitting still, and he said that the next time he will take him when it doesn't have so many people because he could tell it overwhelmed him and he got really anxious.  I am so grateful for the people that help me and take him out, so that I can have some time to myself.  He won't be able to do it much anymore if things keep going to way they are going so I will enjoy it while I can.  He is NOT fun to watch TV with or a movie, he comments about everything and he laughs really loud at parts that aren't that funny, he always looks at the kids or I and laughs and says some kind of comment, we have learned to just ignore it unless he gets out of control and then I have to tell him to calm down a little bit, he usually complies and does it.  

Spring Break!!

Spring break has been so much fun, Ashlyn turned 12 on Wednesday and so she had a few friends over for a birthday party and we made our own pizza and an easter egg hunt and of course cake and ice cream.  I think she had a lot of fun she finally has friends that are nice to her and they were so fun to have over.  On Thursday we took a trip to the mall because we have not been there forever and we needed to stop at the Apple store so we were walking through the mall and we passed build a bear the kids begged to go in and look, so we went in and I had a great idea! I asked them what their favorite bear was that wasn't too expensive and they each picked one and we recorded Jaren's voice for each of them that say "I love you (insert name)"  I have tried the books that you can record your voice but the batteries die to fast.  They will love these bears and they can take them to bed with them and they can also always remember his voice and how much he loves them.  

Friday we went to Fotofly and had a family photo session and it was a lot of fun and they did an amazing job, the kids took their daddy bears and they had their picture taken with the bears and Jaren it was so sweet.  

Jaren, RaKelle, Ashlyn, and Braxton and their daddy bears!

Here are some other of my favorite photos that were taken!

these pictures will be cherished forever!! 

University of Utah

We all went to the University of Utah a couple weeks ago to the class that is writing the book, it was so fun we enjoyed it and they were so kind.  I was a little nervous but once we got there it was so easy to talk to them.  I guess it is easier to talk to a group of people when you know a lot about the situation and since it was about Jaren and the disease it was very easy to answer their questions (well most of them) one of the questions was a little bit hard but I think I answered it the right way and that it made sense.  Elise and Lindsay were so kind and brought all the kids a lamp for helping them with this book project, Jaren and I got movie tickets and free babysitting!! I am so happy to help them and I know the book will be amazing I can't wait until I can read it.   

Snow Shoeing

We had the opportunity as a family to go Snow Shoeing through the Alzheimers Association and through and organization called Splore who takes families that normally couldn't do things like snow shoeing because of a disability.  We had a great time met new friends, they figured we walked about 11/2 miles Jaren couldn't quite make it the whole time, he stopped about a mile and said I'm done I can't go any farther, so him and I and one of the Splore ladies stayed with us and Braxton made his way back to stay with us.  The weather was beautiful and we had layers on at the beginning and by the end we were down to short sleeves.   I was a little worried about Jaren because his legs and feet and arms have been in so much pain lately he can barely walk, today his legs were not working and so he has been on pain pills a lot lately.  I was even a little concerned about leaving him while I went to church, he made it Braxton did a great job taking care of him today.

I don't know what to do if he can't get around anymore I can't quit my job, and I can't afford a nurse for round the clock care.  I don't want to put him in a home, I think my kids would fall apart.  I don't know what to do I guess just a day at a time and sometimes hour by hour and then when the time comes we will make decisions together as a family.

The girls from the University of Utah undergraduate program have been coming over and they are so nice and my kids have had so much fun with them.  They are very easy to talk to and get along with.  We are doing a video interview for them on Friday and then we will be going to the class for Q&A and to tell a little bit of our story.  I am excited to get the word out.  I think if I am not willing to share my story people will not know what to do to help people like us.  I try my hardest to be strong and do everything I can BUT I can't do it all alone I need support from people to help me out.

We have Parent Conferences this week and I am a little worried about going because I don't like them.  I always feel like a crappy parent after I find out how far behind they get because I can't sit down with them every night for homework.  I went to RaKelle's this last week and she is doing really good, her grades are all up and she isn't failing any classes yet.  I know she is struggling with school and life in general but she is doing some great things.

Braxton is having major anxiety issues still, he doesn't want to go anywhere but if I have to go somewhere he is crying by the time I get home because he is so worried.  He has been leaving home for a little while with his best friend Rion but he always comes back with in an hour and then he will go back for a little while longer and then home.  Sometimes I have to send Ashlyn with him or RaKelle so that he will go and not worry about things one time RaKelle went with him and they stayed pretty much the whole afternoon.