I haven't been on here for a very long time, one reason is I haven't had a computer until just recently. We had to move in September and I was so not looking forward to moving I didn't realize what an amazing move it would turn out to be. Jaren adjusted pretty well once we got settled and met some new people. We are loving our new place, we have an amazing branch that we are now a part of and the kids just fit right in. We have been able to meet some amazing people and get to have some awesome new friends. I was nervous about moving because I didn't want to start over with Jaren and all of his issues. I am so thankful for all the help that we received when we moved out of the old place and when we moved into the new place.
We moved in on October 8, 2016 it was a Saturday, our next door neighbor saw us moving some things in and asked if we needed help, I told him that would be awesome and in about 5 minutes there were 6-7 guys over here helping us move in, we were done pretty quick thanks to all the help. My brother was really helpful as well he drove down and used his truck to move the stuff that we had to put in storage until the apartment was ready.
I moved Jaren's chair into the apartment first and got it all set up so that he didn't feel lost, the Monday after the move we all had to go back to work and to school so he was alone again, my girls called me that day because they came home from school for lunch that day and asked me if dad was with me, I told them no and they said we better go find him, I left work immediately so I could help find him luckily it wasn't cold yet because he did not have shoes or a coat on. My girls started searching the complex and RaKelle was headed one way and Ashlyn another, RaKelle was yelling for him and looked over and there was a man with a white beard standing there dressed in white and pointed the opposite direction she looked over and there Jaren was standing there she hollered for him to come to her and turned around to tell the man thank you and he was no where to be found. I have no doubt in my mind that he was an angel that was there to help them find him. They called me back and said they had found him and that he was ok. I was so thankful that I had the feeling to text them that day to run home and check on him and give him some lunch, I am so thankful that they had a car that day to be able to do that.
November came quickly and he got really sick with high blood sugars so he ended up in the hospital the Sunday through the Wednesday before Thanksgiving he made it home right before the big feast. I sent our home teacher a text to let him know and the entire branch knew and we had meals and people asking what they could do to help, it was awesome. December came even faster and the Monday before Christmas our car decided it didn't want to work anymore which was upsetting but we have some really funny memories of how we got it home, lets just say that Braxton was in the drivers seat so the girls and I could push it and I swore to him that he wouldn't have to drive he just needed to steer it and I would be standing there to help him, well I told him to push on the gas so it would get enough umph to push it easier and it decided to take off, it was pretty funny, but we had already been crying and couldn't do anything else. We had to buy a new car on Christmas Eve I know what a great Christmas present but a scary one as well because I haven't had a car payment for 5 yrs. I am so glad that we got one because the day after Christmas Jaren's blood sugars wouldn't go down again so I gave him a shot of insulin and took him to the ER to get some fluids and it was really nice to know that we would be able to get home without worry that the car wouldn't make it home.
January began and it was going pretty well until Braxton started fighting me to go to school, he went into a very deep depression and some severe anxiety and was actually suicidal for a few weeks, he no longer wanted to live, he thought that everything was his fault and that he did something before he came to earth that was so bad that all of us were being punished for something that he did, as a mom I was devastated I didn't know what to do, sometimes by the time I went to work in the morning I was in tears and he was in tears. I was frustrated and he was frustrated, my work was very understanding, thankfully I had just started a new position and was working in the special ed department and I really enjoyed it. He came to work with me a few times because I couldn't leave him alone for fear that he would not be here when I got home. The school was so kind and so willing to help and support him they were very understanding and one of his teachers, and the Vice Principal, and the Counselor actually came to the house to let him know how important he is and how much they missed him at school. I didn't know where to even start for treatment I worked very close with the family Dr and finally got him into a facility that would help me get some of his meds changed to help him. The med change has worked amazingly well and he is pretty close to back to himself again, he still has a hard time leaving home, and he has a hard time being away from me for very long but huge progress since January.
GRADUATION
YAY!! RaKelle finally graduated from West Jordan High School and I could not be more proud of her she is amazing and she was able to pull a 3.5 GPA through high school with everything that she has been dealt with. Jaren was able to attend the graduation and it was touching to see his reaction when I told him that RaKelle had graduated, he cried even though he had no idea what was going on. She has done some amazing things in her life. She graduated from Seminary as well which is so awesome since she did NOT want to take Seminary her 9th grade year, I was kind of shocked because that is what we do we just take seminary I guess it was never an option not to. I talked with her and told her she needed to take it the 1st Semester of 9th grade and be involved and try her hardest and if she still didn't want to take it I would take her out 2nd semester, but when she started going to High School she had to take it again because it is totally different, thank goodness she loved it and never questioned taking it again!! She has had some amazing teachers through the years and I don't think she would have done as well in school had the teachers she had not cared about her. They were all so willing to help her out when things were tough.
Ashlyn will be starting her Junior year at West Jordan High and she loves school, she has had some pretty awesome teachers as well. She is a great kid and a great student, she works very hard to keep her grades up. Braxton I think is ready to start school in August in the 8th grade I think the fact that RaKelle will possibly be home while I am at work helps him so that he will be able to go to school without worrying so much about Jaren.
Sunday, June 4, 2017
Wednesday, February 10, 2016
you seriously can't make stuff like this up!
2016 has been a really hard year so far. January started out ok, but we had been caring for my parents cute little dog and he was yelping one night and I just thought he had hurt his paw so I carried him downstairs with me that night so that he could sleep with us. He woke me up at around 1:30 am yelping so loud and it looked like he was having trouble breathing so I got up to see what was going on and he could NOT move his back legs at all, they were paralyzed. I text my parents and asked what they wanted me to do but it was in the middle of the night so I just held him next to me and cuddled him and prayed that if he was going to die that he would die before everyone got up in the morning. He made it through the night, so when my dad got off work that morning he came over to check it out and we called my brother-in-laws uncle who is a Vet and he told us to bring him in, we took him in and he said that he had a spinal cord injury, "what the crap" I thought. The Vet gave him some steroid shots and told us to leave him there for a night or two, so we left him there, he continued to get steroid shots and we brought him back home that next Saturday. We had a follow up appt with the Vet the next Saturday and he was not improving at all, he gave him another round of shots and told us to come back a week later. We had to take him outside every so often to help him use the bathroom and since he couldn't feel anything we had to press on his bladder to make him go. We went back to the Vet a week later and he was not improving at all and he was losing Muscle in those back legs, the Vet suggested to put him down, we were very sad and asked if we could keep him one more week and he was ok with that. We brought him back home and cared for him for one more week and ended up putting him down on January 30, 2016 we will miss him like crazy he was the best dog, and Jaren loved him and he loved Jaren. It was actually a peaceful experience, we all felt it was the best thing to do for him. He was in a lot of pain.
While all of this was going on with the dog I had gone in to the Dr for my yearly physical, and it went ok, except a few things, the Dr was looking at my back and noticed a black head so he was picking at it to get it out and noticed another spot next to it that worried him a little bit, he said I would like to biopsy that because you don't really have anybody that can watch it really close. So I made an appt for a biopsy and had it done, and the results came back as positive for Basal Cell Carcinoma (skin cancer) holy crap that was a punch in the gut. I was nervous and scared, the Dr reassured me that it wasn't the kind that will kill you but that we needed to take care of it. I made an appointment for February 1 to have the skin cancer spot removed it wasn't that bad but I was in a little bit of pain that night because of the incision and the stitches.
Tuesday morning February 2 Jaren woke up not feeling well, his blood sugars were really high, the meter read 485 I gave him some insulin and went to my crossing and came home to check it again before I went to the school job, it had only gone down to 474 I didn't want to leave him so I changed his insulin pump site and gave him more insulin and checked it again 30 mins later, it was now down to 425 I figured it was going down and he was sleeping so I could run to work, at 12:05 pm from the home health care nurse concerned because of the way he was acting and the way he was talking and his blood sugar had gone back up to 451. I left work and came home to discuss with the nurse what to do and we decided it would be best to take him in to the ER for some fluids if nothing else. I took him to the IMC and they took us right back and started IV's and did blood work. They were worried because his sugars were still high and when the blood tests came back his white blood cell count was over 26,000 they thought maybe he had an infection somewhere, so they admitted us to the hospital on the 8th floor and started figuring out what was going on, they did a CT scan and found that his pancreas was inflamed so they wanted an ultrasound to look for gall stones. No gall stones but he had pancreatitis, and it is painful. They took him off all liquids and all food even water, and kept him on IV fluids until Friday. They started liquids and food back into his diet very slowly and we finally got to come home on Sunday night. I am beyond exhausted but life has to go back to normal even if we have to get use to a new normal. The nurse told me that he tried to sneak out again this time and so I was talking to my sister about it and she said, " no, he didn't try, he did get out they found him clear over in another building, he had followed a volunteer out" I couldn't believe it, again he had wandered out on his own, I told them to make sure and set the bed alarm. Wednesday I had to work for a few hours and while I was at work I checked my email and thank goodness I was there alone, because I found out that they were not able to get all of the cancer and I have to go back and get more cut out, I had a meltdown a little bit in my office.
Hopefully this is not a sign of how 2016 will be, I don't know if I can hang on the whole year if it is like this. I am so thankful for Dr's that help him and I am very thankful that my Dr was in tune with my body and was able to find the cancer early so that it didn't become a problem. I am thankful that my kids are older and are able to help out. I am so thankful that we ended up putting the dog down because he would have been locked up all alone all day for a week because we were at the hospital. I am teaching a lesson on Sunday about adversity BUT I didn't really need adversity right now just so I could teach about it. HAHA I guess the only way we can go now is UP right?! something has to go our way soon!!
While all of this was going on with the dog I had gone in to the Dr for my yearly physical, and it went ok, except a few things, the Dr was looking at my back and noticed a black head so he was picking at it to get it out and noticed another spot next to it that worried him a little bit, he said I would like to biopsy that because you don't really have anybody that can watch it really close. So I made an appt for a biopsy and had it done, and the results came back as positive for Basal Cell Carcinoma (skin cancer) holy crap that was a punch in the gut. I was nervous and scared, the Dr reassured me that it wasn't the kind that will kill you but that we needed to take care of it. I made an appointment for February 1 to have the skin cancer spot removed it wasn't that bad but I was in a little bit of pain that night because of the incision and the stitches.
Tuesday morning February 2 Jaren woke up not feeling well, his blood sugars were really high, the meter read 485 I gave him some insulin and went to my crossing and came home to check it again before I went to the school job, it had only gone down to 474 I didn't want to leave him so I changed his insulin pump site and gave him more insulin and checked it again 30 mins later, it was now down to 425 I figured it was going down and he was sleeping so I could run to work, at 12:05 pm from the home health care nurse concerned because of the way he was acting and the way he was talking and his blood sugar had gone back up to 451. I left work and came home to discuss with the nurse what to do and we decided it would be best to take him in to the ER for some fluids if nothing else. I took him to the IMC and they took us right back and started IV's and did blood work. They were worried because his sugars were still high and when the blood tests came back his white blood cell count was over 26,000 they thought maybe he had an infection somewhere, so they admitted us to the hospital on the 8th floor and started figuring out what was going on, they did a CT scan and found that his pancreas was inflamed so they wanted an ultrasound to look for gall stones. No gall stones but he had pancreatitis, and it is painful. They took him off all liquids and all food even water, and kept him on IV fluids until Friday. They started liquids and food back into his diet very slowly and we finally got to come home on Sunday night. I am beyond exhausted but life has to go back to normal even if we have to get use to a new normal. The nurse told me that he tried to sneak out again this time and so I was talking to my sister about it and she said, " no, he didn't try, he did get out they found him clear over in another building, he had followed a volunteer out" I couldn't believe it, again he had wandered out on his own, I told them to make sure and set the bed alarm. Wednesday I had to work for a few hours and while I was at work I checked my email and thank goodness I was there alone, because I found out that they were not able to get all of the cancer and I have to go back and get more cut out, I had a meltdown a little bit in my office.
Hopefully this is not a sign of how 2016 will be, I don't know if I can hang on the whole year if it is like this. I am so thankful for Dr's that help him and I am very thankful that my Dr was in tune with my body and was able to find the cancer early so that it didn't become a problem. I am thankful that my kids are older and are able to help out. I am so thankful that we ended up putting the dog down because he would have been locked up all alone all day for a week because we were at the hospital. I am teaching a lesson on Sunday about adversity BUT I didn't really need adversity right now just so I could teach about it. HAHA I guess the only way we can go now is UP right?! something has to go our way soon!!
Friday, August 21, 2015
Sorry it has been so long!
This year has gone so fast. I can't believe the summer is over and it is time for school to start again. I have been very busy this summer. I was done working at the elementary school in April I was a little freaked out at first because I depend on those paychecks, but I am also a crossing guard for the City of West Jordan and I was able to do a crossing for the free school breakfast/lunch program over the summer which was so helpful and I know that my prayers were answered the day I got that phone call. It was really, really hot some days but so worth it. Sometimes my kids would come with me sometimes they all came at once and sometimes one at a time, it was really great to spend that time with them.
A week after RaKelle turned 16 she was able to sing the National Anthem at the Western Stampede Rodeo, she did amazing and she was not even nervous I think I had all of her nerves for her I was so nervous. She amazes me everyday, she was able to sit up in the boxed seats with the people in charge and was able to take Braxton and her cousin Amaia up there with her. It was a really fun night, almost my entire family was there to support her and it was awesome. I sat down next to Jaren when she was done and asked him if he liked and he started crying. I was so thankful that he was able to see RaKelle achieve one of her many dreams come true. I tried to attach a video of her singing I hope it worked.
RaKelle finally turned 16 yay!!! and she is loving it. She is working 2 different jobs and loves them and loves having her own money. I can't wait until she finally gets her license so she can drive herself to work, but it is really nice to hand her the keys and say I will sit in the passenger seat and just enjoy being a passenger. She will be starting her junior year on Monday and she has some really good classes. She has had a rough summer, she has had some friends that were not happy with themselves this summer and one of them was wanting to take his life and he had called her thinking it was someone else and she started crying hysterically and I have a very open relationship with her so I knew that things were not good with this person so I immediately called dispatch and talked with someone and they were able to find him and get him to safety. It was not a fun couple hours I knew I had to do something because I didn't know if I could handle her feeling guilty if this person took his life and I didn't do anything to help, she would tell me over and over I am so glad that he called me instead of who he was trying to get a hold of. I was talking to dispatch and she was talking to him, she actually heard from him and he is doing much better. I am so thankful that I listened to my instincts and called someone to potentially save his life. She told me over and over that she thinks that other people would have just brushed it off and just chalked it up to him wanting attention. It was a stressful day for all of us, Ashlyn and Braxton were terrified because they have never seen her cry like that especially in a public place.
Ashlyn is starting 9th grade this year and is very excited. She loves school, she has been a little worried because her band teacher that is the BEST teacher ever that taught me how to play the flute when I was her age retired this year and there is a new teacher coming in. She has some fun classes and I think she will enjoy 9th grade.
Braxton will be in 6th grade this year and this will be the last year that I will have kids in elementary school it is kind of sad and a little weird. He is very nervous to be in 6th grade but I think he will love it once it starts. I will still be working at his school this year so I will still be able to see him a lot. I am really excited to be there with him.
We were able to do the sound booth thing for the U of U and it was a great experience for all of us. It was very touching to hear my kids stories and what they think of our situation put to music. I was in tears through the whole thing. They did an amazing job capturing our story. I have attached a link that you can go to and listen to it. I hope it works. http://ccmixter.org/reviews/
Thanks again for reading my blog and following our trials and triumphs and other things that are happening in our family. We are so thankful to have so many friends and so many people that care about us.
RaKelle finally turned 16 yay!!! and she is loving it. She is working 2 different jobs and loves them and loves having her own money. I can't wait until she finally gets her license so she can drive herself to work, but it is really nice to hand her the keys and say I will sit in the passenger seat and just enjoy being a passenger. She will be starting her junior year on Monday and she has some really good classes. She has had a rough summer, she has had some friends that were not happy with themselves this summer and one of them was wanting to take his life and he had called her thinking it was someone else and she started crying hysterically and I have a very open relationship with her so I knew that things were not good with this person so I immediately called dispatch and talked with someone and they were able to find him and get him to safety. It was not a fun couple hours I knew I had to do something because I didn't know if I could handle her feeling guilty if this person took his life and I didn't do anything to help, she would tell me over and over I am so glad that he called me instead of who he was trying to get a hold of. I was talking to dispatch and she was talking to him, she actually heard from him and he is doing much better. I am so thankful that I listened to my instincts and called someone to potentially save his life. She told me over and over that she thinks that other people would have just brushed it off and just chalked it up to him wanting attention. It was a stressful day for all of us, Ashlyn and Braxton were terrified because they have never seen her cry like that especially in a public place.
Ashlyn is starting 9th grade this year and is very excited. She loves school, she has been a little worried because her band teacher that is the BEST teacher ever that taught me how to play the flute when I was her age retired this year and there is a new teacher coming in. She has some fun classes and I think she will enjoy 9th grade.
Braxton will be in 6th grade this year and this will be the last year that I will have kids in elementary school it is kind of sad and a little weird. He is very nervous to be in 6th grade but I think he will love it once it starts. I will still be working at his school this year so I will still be able to see him a lot. I am really excited to be there with him.
We were able to do the sound booth thing for the U of U and it was a great experience for all of us. It was very touching to hear my kids stories and what they think of our situation put to music. I was in tears through the whole thing. They did an amazing job capturing our story. I have attached a link that you can go to and listen to it. I hope it works. http://ccmixter.org/reviews/
Thanks again for reading my blog and following our trials and triumphs and other things that are happening in our family. We are so thankful to have so many friends and so many people that care about us.
Thursday, February 12, 2015
Don't judge me
RaKelle is now in high school and wanting to date, I am a little freaked out about it but I know that she is growing up. I have a hard time letting her go, I don't even have a spouse that can "clean" his gun when they come to pick her up for her dates. She came to me a couple of weeks ago and asked me if she got a group together if it would be ok if they all went to the sweethearts dance at the high school, I told her as long as there is a group and they were not pairing off then it would be fine, she got a group together and some of the people backed out the last day but she and a couple other people went together and had so much fun. I know that I am being judged because she is not 16 yet, but guess what I am not their mother and I make decisions for myself and my family and I am not really worried about what others think. I am so glad that she was able to go, it was a lot of fun helping her get ready for the dance and seeing her so happy. They met at the dance because none of them have a drivers license. I picked them all up after the dance and we all went out for ice cream, there is no way it was a "date" when your mom is sitting at the booth right next to yours!! hahaha She looked gorgeous and she earned all of the money herself for the tickets and the ice cream I didn't have to spend any money on it. I was worried about what people would say to me about letting her go and then I decided that when people walk a mile in my shoes then they can judge me.
I also had a very touching couple of weeks with RaKelle, she wanted to apply for a scholarship and to apply she had to write a 250-500 word essay about someone that they feel is a silent hero, she wrote it up and asked me if I would type it for her so that she could get it in on time. I sat at the computer to type it and was so overcome with emotion, she wrote that I was her silent hero, and wrote about an emotional experience that her and I had. She wrote about the time when she was having a horrible day and she was so stressed out and I wasn't sure what was wrong with her she was just being very mean to me and she went to her room and I let her cool off for a minute and had to go down and see if everything was ok, she said nothing was wrong and I knew that it wasn't true I told her to come into my room with me and we could have a talk, she then lost all emotions and started crying hysterically and come to find out she wanted to take her own life, I was stunned and devastated I started crying with her and she wrote in her essay that I just hugged her and told her how important that she was and that I couldn't handle losing her that I was already losing her father, at the end she stated that she never wanted to see me cry like that again if I were to cry that she wanted them to be tears of joy. She also wrote how important it was to her that if she ever needs to talk that I never say I am too busy and I always take the time to talk with them. I am so thankful for her and the spirit she brings to our home. I am so thankful for the relationship that we have together and that she trusts me to support her and always be there for her, I am thankful for the wonderful talks we have together even if they are hard to talk about some of the subjects that we talk about. I am very pleased to say that she has no longer ever thought about suicide again, she is trying to make a difference for someone else by sharing her story.
I taught the lesson on Sunday in Relief Society and brought this up and lost control of my emotions I don't usually do that when I am teaching but I felt that I needed to share that story with people and hope that it helped someone. I am sure that there wasn't really a dry eye in the room after that. I was trying to make a point that decisions that kids make when they are young can impact so many people and themselves that they will have to deal with for a long time.
This week will finally be over soon, I am so tired and worn out from emotions this week. I am so exhausted and tired of trying to fight the government on services that Jaren really needs I feel like I have to fight them every single month for him to keep them. I am fighting them again this month and I don't know if I can do it anymore. I have actually called an attorney to help me with this because I can't function and fight myself anymore. I have a hard time dealing with the fact that I am trying my best to be self sufficient and that I actually need the help but to fight for it month after month is a bit wearing. I have said it before, you can only get told "no" so many times before you can't handle it anymore. I even broke down (sort of) in my appointment with my counselor, which was good, he has tried to get me to break since I started going there. A good thing about this week is, the U of U has the opportunity to do a sound bank about the book that was written by that class that we were involved with, what a great opportunity for us as a family to help get the word out about Dementia.
So now to the end, I feel that if people would like to judge me that is fine, but remember one thing there is no way for people to really understand where I am coming from and no one will understand that I make decisions all ALONE, I don't have a spouse to help me with decisions. I make decisions based on how I feel about things, I make decisions and then ask God if it is the right decision and I am thankful for the power of prayer and how much I use it! I sometimes feel like I use it for stupid things but I know that anything that I ask for will be answered even if I do not like the answer I have been given. I know that Jaren was sent to me for a reason and that I was supposed to marry him so that I could care for him in a way that nobody else ever could. I know that my children are here for me and they are here to support me and when I have a bad day I know that they care and that we can talk to each other and we will feel better. I am so thankful to have my eternal family to share this life with and the life hereafter, I am thankful for the many lessons I have learned with caring for Jaren and being a wife and a mother, I am thankful for the many blessings I have received and the many people that I have been blessed with getting to know and becoming friends with them. I am thankful that I am able to work with some wonderful people. I am thankful for the house that I live in and for the car that still runs and gets me from point A to point B. I am thankful for an extended family that help me through some difficult times and help me with the kids and all of their activities. I am thankful for the heartfelt conversations that I have with wonderful co workers and how much they really care about me. Thanks to everyone who reads this blog and help to keep me going.
I also had a very touching couple of weeks with RaKelle, she wanted to apply for a scholarship and to apply she had to write a 250-500 word essay about someone that they feel is a silent hero, she wrote it up and asked me if I would type it for her so that she could get it in on time. I sat at the computer to type it and was so overcome with emotion, she wrote that I was her silent hero, and wrote about an emotional experience that her and I had. She wrote about the time when she was having a horrible day and she was so stressed out and I wasn't sure what was wrong with her she was just being very mean to me and she went to her room and I let her cool off for a minute and had to go down and see if everything was ok, she said nothing was wrong and I knew that it wasn't true I told her to come into my room with me and we could have a talk, she then lost all emotions and started crying hysterically and come to find out she wanted to take her own life, I was stunned and devastated I started crying with her and she wrote in her essay that I just hugged her and told her how important that she was and that I couldn't handle losing her that I was already losing her father, at the end she stated that she never wanted to see me cry like that again if I were to cry that she wanted them to be tears of joy. She also wrote how important it was to her that if she ever needs to talk that I never say I am too busy and I always take the time to talk with them. I am so thankful for her and the spirit she brings to our home. I am so thankful for the relationship that we have together and that she trusts me to support her and always be there for her, I am thankful for the wonderful talks we have together even if they are hard to talk about some of the subjects that we talk about. I am very pleased to say that she has no longer ever thought about suicide again, she is trying to make a difference for someone else by sharing her story.
I taught the lesson on Sunday in Relief Society and brought this up and lost control of my emotions I don't usually do that when I am teaching but I felt that I needed to share that story with people and hope that it helped someone. I am sure that there wasn't really a dry eye in the room after that. I was trying to make a point that decisions that kids make when they are young can impact so many people and themselves that they will have to deal with for a long time.
This week will finally be over soon, I am so tired and worn out from emotions this week. I am so exhausted and tired of trying to fight the government on services that Jaren really needs I feel like I have to fight them every single month for him to keep them. I am fighting them again this month and I don't know if I can do it anymore. I have actually called an attorney to help me with this because I can't function and fight myself anymore. I have a hard time dealing with the fact that I am trying my best to be self sufficient and that I actually need the help but to fight for it month after month is a bit wearing. I have said it before, you can only get told "no" so many times before you can't handle it anymore. I even broke down (sort of) in my appointment with my counselor, which was good, he has tried to get me to break since I started going there. A good thing about this week is, the U of U has the opportunity to do a sound bank about the book that was written by that class that we were involved with, what a great opportunity for us as a family to help get the word out about Dementia.
So now to the end, I feel that if people would like to judge me that is fine, but remember one thing there is no way for people to really understand where I am coming from and no one will understand that I make decisions all ALONE, I don't have a spouse to help me with decisions. I make decisions based on how I feel about things, I make decisions and then ask God if it is the right decision and I am thankful for the power of prayer and how much I use it! I sometimes feel like I use it for stupid things but I know that anything that I ask for will be answered even if I do not like the answer I have been given. I know that Jaren was sent to me for a reason and that I was supposed to marry him so that I could care for him in a way that nobody else ever could. I know that my children are here for me and they are here to support me and when I have a bad day I know that they care and that we can talk to each other and we will feel better. I am so thankful to have my eternal family to share this life with and the life hereafter, I am thankful for the many lessons I have learned with caring for Jaren and being a wife and a mother, I am thankful for the many blessings I have received and the many people that I have been blessed with getting to know and becoming friends with them. I am thankful that I am able to work with some wonderful people. I am thankful for the house that I live in and for the car that still runs and gets me from point A to point B. I am thankful for an extended family that help me through some difficult times and help me with the kids and all of their activities. I am thankful for the heartfelt conversations that I have with wonderful co workers and how much they really care about me. Thanks to everyone who reads this blog and help to keep me going.
Sunday, January 18, 2015
Update
I haven't updated for awhile so I thought I would sit down and do an update. Jaren is gaining weight back since he had the tube placed, it was a bumpy ride there for awhile but it is good now. He is doing ok, he has his good days and his bad days, but seems to be pretty steady at the moment. This week has been a little bit stressful because I couldn't keep his sugars to go below 500 he was nauseous and on my birthday I thought I was going to have to take him to the ER but I finally got it to go down some. I actually gave him an insulin shot. (yeah me! first time ever) I have never had to give him one because he could always do them himself and then he got the pump so I didn't have to, but I needed them to come down fast before he started to vomit. Thank goodness my dad came over and helped me do it. I checked his blood sugars throughout that night and gave him another shot and it was finally down to 200, I changed his pump tubing and insulin with a brand new bottle of insulin and he seemed a little better and then his home health nurse text me and told me they were high again I left work early and came home and he had a blockage in the tube so I changed it again and it worked a little bit better, on Friday I decided that I was going to change his basal rates on his pump and then I would let the Dr know what I did. His sugars have now been in the 100's. We met with the Neurologist in December after fighting to get an appointment them since July, and it was a depressing visit. He told me that I needed to start looking for a home for Jaren because they have a nurse and staff that will be able to be with him 24/7 and he can wander and not have to worry about it because someone would be there to follow him around, (yeah right). I can honestly say I have no clue what was said after that my brain went into shutdown mode and I couldn't think of anything except "I can't put him in a home yet, I can't, I can't, he will hate me" I was a little frustrated that the Dr started off with that when he walked into the room. I bawled the whole way home and didn't know what to do. I talked to the kids about it and we decided as a family that he needed to stay home with us as long as he can.
Christmas this year was amazing, I was a little bit worried how we were going to make it but I shouldn't have we were blessed by so many people that care for our family. I am so thankful that we have such great people in the world that are so willing to help others. I am in awe at how many people helped that wouldn't leave their names so I don't know how to thank them. If you were one of the many people that helped us out this last Christmas Thank you so much for your kindness and love that you would be willing to help us. By Christmas Eve we were all in tears when we got home from a family gathering and there sat a box of food on our porch again. I am so thankful that my kids have the ability to know when Heavenly Father has helped us in so many ways. I am thankful that my kids are so gracious when we receive gifts and things that the first thing they want to do is send a Thank you note.
News Years always brings new challenges. This year is no different. RaKelle is starting to be interested in BOYS and she is starting to be a REAL teenager, having her phone with her all the time and texting all the the time. It is a little weird for me to have her be like that, she is still a good kid but she wants to be with friends a lot more than she ever has before. I don't really mind it but it gets a little overwhelming because I have to drive her everywhere. I decided that I have to pick my battles with her and being with a group of friends that are good kids is not one that I want to fight about. She is very open and honest with me and if I tell her I don't really want her to go out and that I am exhausted and I don't want to take her anywhere she always understands. I am trying to figure out the best way to handle BOYS with her and I know it is difficult for any parent but it seems to be a little challenging for me because I don't have a spouse to back me up, or one that will tell her no, or a dad that will be cleaning his guns when they pick her up for dates I still have a few months for that one though (thank goodness). When she does have friends over we always have to remind Jaren to be nice and to not say inappropriate things while they are here. I am looking forward to when she gets her license so that I don't have to drive her everywhere. I am also a little nervous about having a teen driver but I think she is responsible that she will be ok. Her grades are amazing she is getting all A's and I am so thankful for her teachers and administrators at school that help her out with so much when needed. She is getting ready to go on tour for her Choir group and she is very, very excited to be going.
Ashlyn is doing really, really well in school as well. She is always busy doing her homework and trying to keep up her good grades. She had a hard time adjusting to the new VP that the school got because Mr. Varga had a different opportunity and moved on to a different school, we were all sad to see him go but she is adjusting. I haven't had a chance to meet with the new one yet but I hope to do so in the near future. Her counselor is really good and she is always willing to help Ashlyn out any way that she can.
Braxton is a 10 year old boy with lots of energy. He is doing well in school as well. My office is right next to his class so he comes into see me A LOT, he brought his lunch down a few times to my office to eat with me it was cute. I really enjoy working at his school. He has a lot of friends and he is playing basketball with some of them right now. Just this past weekend was a huge milestone for him he slept over night at his friends and he didn't come home!! I know that is weird to most people but for him it is huge. He even went back over tonight for a sleepover because there is no school tomorrow.
Christmas this year was amazing, I was a little bit worried how we were going to make it but I shouldn't have we were blessed by so many people that care for our family. I am so thankful that we have such great people in the world that are so willing to help others. I am in awe at how many people helped that wouldn't leave their names so I don't know how to thank them. If you were one of the many people that helped us out this last Christmas Thank you so much for your kindness and love that you would be willing to help us. By Christmas Eve we were all in tears when we got home from a family gathering and there sat a box of food on our porch again. I am so thankful that my kids have the ability to know when Heavenly Father has helped us in so many ways. I am thankful that my kids are so gracious when we receive gifts and things that the first thing they want to do is send a Thank you note.
News Years always brings new challenges. This year is no different. RaKelle is starting to be interested in BOYS and she is starting to be a REAL teenager, having her phone with her all the time and texting all the the time. It is a little weird for me to have her be like that, she is still a good kid but she wants to be with friends a lot more than she ever has before. I don't really mind it but it gets a little overwhelming because I have to drive her everywhere. I decided that I have to pick my battles with her and being with a group of friends that are good kids is not one that I want to fight about. She is very open and honest with me and if I tell her I don't really want her to go out and that I am exhausted and I don't want to take her anywhere she always understands. I am trying to figure out the best way to handle BOYS with her and I know it is difficult for any parent but it seems to be a little challenging for me because I don't have a spouse to back me up, or one that will tell her no, or a dad that will be cleaning his guns when they pick her up for dates I still have a few months for that one though (thank goodness). When she does have friends over we always have to remind Jaren to be nice and to not say inappropriate things while they are here. I am looking forward to when she gets her license so that I don't have to drive her everywhere. I am also a little nervous about having a teen driver but I think she is responsible that she will be ok. Her grades are amazing she is getting all A's and I am so thankful for her teachers and administrators at school that help her out with so much when needed. She is getting ready to go on tour for her Choir group and she is very, very excited to be going.
Ashlyn is doing really, really well in school as well. She is always busy doing her homework and trying to keep up her good grades. She had a hard time adjusting to the new VP that the school got because Mr. Varga had a different opportunity and moved on to a different school, we were all sad to see him go but she is adjusting. I haven't had a chance to meet with the new one yet but I hope to do so in the near future. Her counselor is really good and she is always willing to help Ashlyn out any way that she can.
Braxton is a 10 year old boy with lots of energy. He is doing well in school as well. My office is right next to his class so he comes into see me A LOT, he brought his lunch down a few times to my office to eat with me it was cute. I really enjoy working at his school. He has a lot of friends and he is playing basketball with some of them right now. Just this past weekend was a huge milestone for him he slept over night at his friends and he didn't come home!! I know that is weird to most people but for him it is huge. He even went back over tonight for a sleepover because there is no school tomorrow.
Monday, October 27, 2014
October has been crazy
Jaren had his feeding tube placed on September 25th, it was doing really, really well he started gaining weight and then the Tuesday after it was placed he became dehydrated and throwing up so I left work after his aid text me that he was throwing up so I got to a point at work that I could leave and went home to check on him, he looked horrible, I checked his blood sugar and it was 495, I gave him some insulin and sat there with him for a while and talked to him and 30 mins later I checked his sugars again and they were higher they were up over 500 I asked him what he wanted me to do. I told him I could take him in to the ER or I could go back to work and see if the insulin is working, he said he didn't care he just kept getting worse and worse so I didn't dare go back to work and I asked him again if he wanted to go to the ER and he said "yes, please take me in" I took him in and they got him to a room pretty quick, they started and IV and some insulin and did some blood work and the numbers were not good, he was in Diabetic Ketoacidosis so they told me that they had to admit him but not to a regular room he had to go to the ICU, It was stressful. I was already overwhelmed trying to learn the new feeding tube and how it worked and now this? they took really good care of us though. When he got settled in his room in the ICU I decided to go eat some dinner I hadn't eaten all day because I was at work and I usually come home and eat after I am done working. I went down to the cafeteria and ordered a salad they are usually pretty good there, I went to pay for it and my card declined I was so embarrassed luckily I had a little bit of cash in my purse. I started bawling and I couldn't stop, I had so many emotions I was feeling, I was feeling guilty because I had started another job as a crossing guard to help with finances and I was hardly home that few days after the tube was placed and that day he was sick I didn't have time to really help him that morning because I was going crazy. I should have been home that day and maybe he wouldn't have been sick or I could have caught it in time before it got to the point where he had to be hospitalized. I know, I know it couldn't have been helped, BUT I still can't help the way I was feeling. He started to get better once they got his sugars under control and they decided he could go to a regular floor, they put us on the 8th floor which was really good because my sister is a RN on that floor and she was working that day and I got to go up to her floor and eat lunch with her which was really fun!! so we got up to the 8th floor and the nurses were really nice, and helpful. My sister came in to sit with me after her shift and they changed nurses and my sister was able to hand pick his nurse so I knew he would get the best care. It was getting late by that time and so I asked my sister to stay with me so I didn't have to walk out to my car by myself, so they came in to do his vitals and to feed him through the feeding tube and he had to go to the bathroom, both my sister and I told the CNA Tech that he had dementia and she just laughed and said "don't we all" nobody believes me because he is young and he LOOKS normal. After the restroom break he didn't want to get back in bed so the good nurse didn't want to set the bed alarm until he was in it but I needed to get home to be with the kids and to get SOME sleep, so I went back the next morning and they tell me that he was ready to go home that night and tried to follow me out and security brought him back upstairs. I asked Jaren how far he made it out and he said they found him in the parking lot. I couldn't be mad because they did find him and he was not harmed and I couldn't help but laugh. I had told the nurse that he usually doesn't wander, ooops I guess I am wrong, but now when he is in the hospital I don't feel like I will be able to leave him. I was upset though that the CNA didn't believe me or my sister and he wandered, that was a little irritating. But not worth being that upset I have other things to worry about.
He finally got home and he was doing really well. The home health nurse was coming in still 3 times a week and admitted to me that even he didn't really see the REAL situation until he started coming more when I wasn't home and the questions that Jaren couldn't answer or answer wrong, he said that he visualized the situation from the first to know very different and he can see now that Jaren really needs help, FINALLY someone gets it!! Anyway, I took him for a follow-up visit with the family Dr on October 16th and he said looking at his blood work from the different times in the last year he seems to be anemic, really! one more thing to keep track of. He suggested waiting another month and redo his blood work and see what the numbers say and they will decide what to do. That would make sense why he is so worn down and so pale and always exhausted, then the next day came and he just wasn't acting himself, his aid came over to help shower him and I asked him to look at his tube placement incision and see what he thought, he said it looks infected so after the shower we decided to go back to the ER to get it checked just to be safe, I didn't want to take him to Instacare because I don't think they have the equipment to handle that kind of stuff. So off to the ER we went, glad we did it was infected with a fever and all they did do a CAT scan to make sure there was not infection inside the stomach, thank goodness it came back ok, they did a round of IV antibiotics and gave him some through his tube before we left and sent us home with 2 antibiotic prescriptions so I have been breaking up pills and putting them through his tube 4 times a day. We had an appointment with the Nutrition Support team that placed the tube and that was on Tuesday last week, they numbed it and pulled some granual tissue out of the incision and did some other things to it and told me to come over to the table so that I could see what was happening, so I walked over and she started poking around in it with some sort of a stick thing and I started feeling so weird and I could hear people but I had no clue what they were saying and my eyes were closing in and everything felt like my head was spinning and I about passed out I luckily had the feeling to go sit down so I walked over to the chair and sat down, what a horrible feeling. I have never felt like that before. I am sure I was as white as a ghost because when I finally came out of it I could feel the color come back to my face. He is doing good now and still gaining weight so hopefully he can stay healthy through the next couple of months. The time between fall and winter seasons are the worst it seems for him, he gets really ill and then he seems to level off again when it gets warmer. I guess we will see what will happen.
He finally got home and he was doing really well. The home health nurse was coming in still 3 times a week and admitted to me that even he didn't really see the REAL situation until he started coming more when I wasn't home and the questions that Jaren couldn't answer or answer wrong, he said that he visualized the situation from the first to know very different and he can see now that Jaren really needs help, FINALLY someone gets it!! Anyway, I took him for a follow-up visit with the family Dr on October 16th and he said looking at his blood work from the different times in the last year he seems to be anemic, really! one more thing to keep track of. He suggested waiting another month and redo his blood work and see what the numbers say and they will decide what to do. That would make sense why he is so worn down and so pale and always exhausted, then the next day came and he just wasn't acting himself, his aid came over to help shower him and I asked him to look at his tube placement incision and see what he thought, he said it looks infected so after the shower we decided to go back to the ER to get it checked just to be safe, I didn't want to take him to Instacare because I don't think they have the equipment to handle that kind of stuff. So off to the ER we went, glad we did it was infected with a fever and all they did do a CAT scan to make sure there was not infection inside the stomach, thank goodness it came back ok, they did a round of IV antibiotics and gave him some through his tube before we left and sent us home with 2 antibiotic prescriptions so I have been breaking up pills and putting them through his tube 4 times a day. We had an appointment with the Nutrition Support team that placed the tube and that was on Tuesday last week, they numbed it and pulled some granual tissue out of the incision and did some other things to it and told me to come over to the table so that I could see what was happening, so I walked over and she started poking around in it with some sort of a stick thing and I started feeling so weird and I could hear people but I had no clue what they were saying and my eyes were closing in and everything felt like my head was spinning and I about passed out I luckily had the feeling to go sit down so I walked over to the chair and sat down, what a horrible feeling. I have never felt like that before. I am sure I was as white as a ghost because when I finally came out of it I could feel the color come back to my face. He is doing good now and still gaining weight so hopefully he can stay healthy through the next couple of months. The time between fall and winter seasons are the worst it seems for him, he gets really ill and then he seems to level off again when it gets warmer. I guess we will see what will happen.
Saturday, September 27, 2014
So many ups and downs
School has begun and the kids are all doing pretty good with keeping up with homework and good grades so far. They all really like their teachers and RaKelle is loving the high school social stuff and football games.
I wasn't sure how to write some of the things that I have been feeling lately. I was still concerned with Jaren not eating and not swallowing his pills so we went to our appointment with the GI Doctor and I knew he was going to tell me that we should consider a feeding tube for his nutrients and his medications, even though I knew it was coming it didn't lessen the blow any, it is still a slap in the face that things are going downhill at a fast rate. The Dr's have all been really good about answering all of my questions and about giving me the information I have needed to make my decisions. I think by far that this decision has been the hardest one yet. I told the Dr I would not make a decision on my own that I had to go home and talk it over with my kids before I would make the final decision. We had a family meeting that night and talked it over and they all asked if they could have some time to think about it and have another meeting later in the week to discuss the options and what their feelings were, so that is what we did, needless to say it was a very emotional week for all of us. RaKelle had a meltdown, Ashlyn got really mean and Braxton got really, really sick with fever and just wanting to lay on the couch he was sick for 5 days. RaKelle came and talked to me and we had a really good talk she expressed how hard it was at school to listen to people in the hall complain about how their dad's are so over protective and she just wished that her dad knew how to be over protective. Ashlyn finally calmed down and she is doing much better. Braxton finally got better. The Friday after we found out about the tube we celebrated Jaren's 40th birthday, he swears up and down he is 31 so we just go with it, instead of having a party with friends and family we were discussing the feeding tube.
We finally came to the decision to have the tube placed. I know some people wonder why we chose to have a feeding tube, they wonder why we want to prolong his life. I thought about that as well and talked with more than one of his Dr's and they were very supportive with whatever decision that we made. They all said that he is still functioning to a point where his nutrition is very important and if he wasn't getting the nutrition that he needs it would start eating his muscles and it would be more painful. Our family Dr made a very good point as well, he said you aren't prolonging his life we are treating the symptoms and helping him have a good quality for the end of life not the quantity. I didn't look at it that way until he said something. I am so thankful for the Dr's that we have working with him and the way they treat him, and the support that they give to me.
The G tube (Gastric feeding tube) was placed on Thursday September 25, 2014 it was a looooong day we had to be at the hospital at 5am. The surgery went very smooth and it didn't even take them as long as they anticipated and they were very pleased with how it went. The surgeon was very good and he said that the surgery was better than they expected it to be. He came home the same day and did really well. We now have to get used to a new "normal" for feeds and meds and dealing with everything. When he was in post op he kept saying "ow, my belly hurts" I would then say, 'yes, you had surgery your belly will hurt for a few days, they had to cut you a little bit" he would look at me and growl and say "why, did they do that?" I had to explain it over and over again that it will help him eat and get the medicine he needs. When we got home the kids asked him why his belly hurt and he would say "because they thought I was a toy or a doll so they cut me all up" at least it didn't take his sense of humor yet!! he is finally understanding a little bit but is very vocal about the pain and very ornery sometimes.
We are holding a Bake Sale this coming Friday October 3, 2014 for the AFTD like the one that we had last year. The kids have done a lot to get ready for this and hopefully it will pay off.
I wasn't sure how to write some of the things that I have been feeling lately. I was still concerned with Jaren not eating and not swallowing his pills so we went to our appointment with the GI Doctor and I knew he was going to tell me that we should consider a feeding tube for his nutrients and his medications, even though I knew it was coming it didn't lessen the blow any, it is still a slap in the face that things are going downhill at a fast rate. The Dr's have all been really good about answering all of my questions and about giving me the information I have needed to make my decisions. I think by far that this decision has been the hardest one yet. I told the Dr I would not make a decision on my own that I had to go home and talk it over with my kids before I would make the final decision. We had a family meeting that night and talked it over and they all asked if they could have some time to think about it and have another meeting later in the week to discuss the options and what their feelings were, so that is what we did, needless to say it was a very emotional week for all of us. RaKelle had a meltdown, Ashlyn got really mean and Braxton got really, really sick with fever and just wanting to lay on the couch he was sick for 5 days. RaKelle came and talked to me and we had a really good talk she expressed how hard it was at school to listen to people in the hall complain about how their dad's are so over protective and she just wished that her dad knew how to be over protective. Ashlyn finally calmed down and she is doing much better. Braxton finally got better. The Friday after we found out about the tube we celebrated Jaren's 40th birthday, he swears up and down he is 31 so we just go with it, instead of having a party with friends and family we were discussing the feeding tube.
We finally came to the decision to have the tube placed. I know some people wonder why we chose to have a feeding tube, they wonder why we want to prolong his life. I thought about that as well and talked with more than one of his Dr's and they were very supportive with whatever decision that we made. They all said that he is still functioning to a point where his nutrition is very important and if he wasn't getting the nutrition that he needs it would start eating his muscles and it would be more painful. Our family Dr made a very good point as well, he said you aren't prolonging his life we are treating the symptoms and helping him have a good quality for the end of life not the quantity. I didn't look at it that way until he said something. I am so thankful for the Dr's that we have working with him and the way they treat him, and the support that they give to me.
The G tube (Gastric feeding tube) was placed on Thursday September 25, 2014 it was a looooong day we had to be at the hospital at 5am. The surgery went very smooth and it didn't even take them as long as they anticipated and they were very pleased with how it went. The surgeon was very good and he said that the surgery was better than they expected it to be. He came home the same day and did really well. We now have to get used to a new "normal" for feeds and meds and dealing with everything. When he was in post op he kept saying "ow, my belly hurts" I would then say, 'yes, you had surgery your belly will hurt for a few days, they had to cut you a little bit" he would look at me and growl and say "why, did they do that?" I had to explain it over and over again that it will help him eat and get the medicine he needs. When we got home the kids asked him why his belly hurt and he would say "because they thought I was a toy or a doll so they cut me all up" at least it didn't take his sense of humor yet!! he is finally understanding a little bit but is very vocal about the pain and very ornery sometimes.
We are holding a Bake Sale this coming Friday October 3, 2014 for the AFTD like the one that we had last year. The kids have done a lot to get ready for this and hopefully it will pay off.
Sunday, August 24, 2014
It has been a long time
I can't believe how long it has been since I have updated. I am happy to say that I got a new job I am still going to be doing reading programs but at a different school, I will now be working at West Jordan Elementary, the school the Braxton goes to I am hoping that this will help him be able to go to school a lot more and not be sick so much from leaving Jaren.
I can't believe school is about to start again, RaKelle will be in 10th grade and she starts High School this year!! I am a little nervous for her but I know she will do great, she is working on getting her Learner's permit and she is loving the driving experience. I am honestly looking forward to when she will get her license, because I won't have to be the only driver anymore.
Ashlyn is about to start 8th grade and is very excited. She has some really good classes and some good friends that she can't wait to hang out with again this year. She loves school, which is so different for her she hated elementary but she loves middle school hopefully this year will be the same and she will love it!!
Braxton is starting the 5th grade and at back to school night we found out that my office is right next to his classroom and he is worried about that but I told him if he was good and obeyed the rules he has nothing to worry about.
Jaren will be home alone again in the mornings while I am at work, I am a little worried how he is going to react the first couple weeks change is really hard on him. He has been declining quite a bit this summer, not just his memory but he doesn't want to eat, his stomach hurts all the time which is making his diabetes crazy, his A1C which is a 3 month blood sugar average was 6.8 which normal people is perfect but for him it is scary it means he is having a lot of low blood sugars that we are not aware of. He has lost 20 pounds in about 8 months. I made an appointment with the GI doctor but he didn't have any openings until September 8, so we have to wait until then. Hopefully we can get some answers or maybe some other options to help him get the nutrition that he needs. His memory is getting a lot worse and the pain in his body is almost unbearable, sometimes he can't even feel his feet and can't get out of bed, he said his stomach pain is like the Neuropathy in his hands and feet so I am not sure if there are nerves in the stomach that are being attacked that make his stomach hurt. I pray every night that he will be able to handle being home alone while I am working because I don't have a choice on the matter I have to work to keep us afloat. I am working on getting his aid to come in the morning while I am gone so that he isn't alone the entire time.
I can't believe school is about to start again, RaKelle will be in 10th grade and she starts High School this year!! I am a little nervous for her but I know she will do great, she is working on getting her Learner's permit and she is loving the driving experience. I am honestly looking forward to when she will get her license, because I won't have to be the only driver anymore.
Ashlyn is about to start 8th grade and is very excited. She has some really good classes and some good friends that she can't wait to hang out with again this year. She loves school, which is so different for her she hated elementary but she loves middle school hopefully this year will be the same and she will love it!!
Braxton is starting the 5th grade and at back to school night we found out that my office is right next to his classroom and he is worried about that but I told him if he was good and obeyed the rules he has nothing to worry about.
Jaren will be home alone again in the mornings while I am at work, I am a little worried how he is going to react the first couple weeks change is really hard on him. He has been declining quite a bit this summer, not just his memory but he doesn't want to eat, his stomach hurts all the time which is making his diabetes crazy, his A1C which is a 3 month blood sugar average was 6.8 which normal people is perfect but for him it is scary it means he is having a lot of low blood sugars that we are not aware of. He has lost 20 pounds in about 8 months. I made an appointment with the GI doctor but he didn't have any openings until September 8, so we have to wait until then. Hopefully we can get some answers or maybe some other options to help him get the nutrition that he needs. His memory is getting a lot worse and the pain in his body is almost unbearable, sometimes he can't even feel his feet and can't get out of bed, he said his stomach pain is like the Neuropathy in his hands and feet so I am not sure if there are nerves in the stomach that are being attacked that make his stomach hurt. I pray every night that he will be able to handle being home alone while I am working because I don't have a choice on the matter I have to work to keep us afloat. I am working on getting his aid to come in the morning while I am gone so that he isn't alone the entire time.
Friday, April 4, 2014
I am so ready for Spring!
Here at the Gordon house, we are so ready for spring. I have to say though we haven't had the illness at our house this winter like we usually do. Jaren wasn't in the hospital at all this winter. He did end up in the hospital the middle of March, he was fine all weekend and one Sunday afternoon he said I don't feel so good, I took his blood sugars and he was high so I gave him some insulin and he wasn't feeling any better so I took it again and it had only gone down by 100, he started vomiting and couldn't stop so I took him to the ER so that he could be rehydrated because usually by the time he starts throwing up he is dehydrated and I can't get it under control myself. When we got to the ER they were really busy but they started the IV and he started feeling better but they couldn't get his sugars to go down and they were worried about some of his blood work, his Anion Gap was opened and acid level wasn't going down either so they decided to admit him to the ICU. It was a little stressful because it was about 1 am, when they got us up to his room the doctor came in and asked Jaren " what brings you here today?" Jaren looked at me and looked back at the doctor and said "um, a van" the doctor started laughing thank goodness and said "I guess I should have asked that a different way." I had to laugh myself it was actually really funny. I then had to explain to them that he suffers from Dementia because of the MLD and I had to explain what MLD was because not many people including doctors know anything about MLD. Since that hospital visit he just hasn't been himself, his sugars have been out of control and I can't seem to keep him under 300. I went to see my counselor and told him about it and he told me that the MLD could be making the brain do things that the insulin is being affected and not working correctly. I don't know what to do about that besides just taking sugars and giving insulin. The pain has been so bad as well that he has had to have major pain killers to keep it under control.
It has been a really tough year so far. RaKelle had to have surgery on her knee to finally fix it. I really didn't realize how much she helps until she couldn't. She is awesome!! I was focused on her a lot and I was trying to take care of Jaren and it was really hard. I didn't feel like I could leave him alone while we were at the hospital so I asked some neighbors to check on him. It was a LONG day but we made it through, she is doing really well one more week and her brace gets to come off. When Jaren was in the hospital I was so focused on getting Jaren better that I kind of let her fall to the back burner and she was sitting in the hospital with me and she put her foot up to elevate it and her whole foot was swollen I felt so bad.
Jaren has not been sleeping at night he wanders the house and wakes everyone up. He gets confused on where to sleep. Last week he woke Braxton up because he wanted to "talk" at midnight. Braxton didn't have the heart to tell him he was tired and to go back to bed so he sat up and listened and talked to him. I asked what he talked about and he told me that he said "your mom is so pretty I want to marry her." and Braxton told him he was already married to me and Jaren told him he wants to get married to me again. He said that Jaren kept talking about Ashlyn and how sometimes she is not nice, and he was talking about RaKelle and how tall she is. He talked a little bit about nintendo. Needless to say I couldn't get him up on time and he was late for school. I thought it was super cute of Braxton to stay up with his dad and just listen to him.
I get overwhelmed when they miss a lot of school but I feel like that is not something I want to fight them on. I feel like sometimes they just can't go to school and if they do they won't be able to concentrate so it really doesn't do them any good. I know they have to send letters home when they have had to many absences but I can't handle when I read them, that just makes one more thing I have to work out with the administration and it is overwhelming and frustrating even though they are super nice about it. I am trying my best to raise my kids and take care of him sometimes it is not as stressful as others and sometimes it gets to the point where I just want to run and hide and cry a lot. Sometimes I just want to stay in bed and sleep until it all goes away, but I know that is not possible.
It has been a really tough year so far. RaKelle had to have surgery on her knee to finally fix it. I really didn't realize how much she helps until she couldn't. She is awesome!! I was focused on her a lot and I was trying to take care of Jaren and it was really hard. I didn't feel like I could leave him alone while we were at the hospital so I asked some neighbors to check on him. It was a LONG day but we made it through, she is doing really well one more week and her brace gets to come off. When Jaren was in the hospital I was so focused on getting Jaren better that I kind of let her fall to the back burner and she was sitting in the hospital with me and she put her foot up to elevate it and her whole foot was swollen I felt so bad.
Jaren has not been sleeping at night he wanders the house and wakes everyone up. He gets confused on where to sleep. Last week he woke Braxton up because he wanted to "talk" at midnight. Braxton didn't have the heart to tell him he was tired and to go back to bed so he sat up and listened and talked to him. I asked what he talked about and he told me that he said "your mom is so pretty I want to marry her." and Braxton told him he was already married to me and Jaren told him he wants to get married to me again. He said that Jaren kept talking about Ashlyn and how sometimes she is not nice, and he was talking about RaKelle and how tall she is. He talked a little bit about nintendo. Needless to say I couldn't get him up on time and he was late for school. I thought it was super cute of Braxton to stay up with his dad and just listen to him.
I get overwhelmed when they miss a lot of school but I feel like that is not something I want to fight them on. I feel like sometimes they just can't go to school and if they do they won't be able to concentrate so it really doesn't do them any good. I know they have to send letters home when they have had to many absences but I can't handle when I read them, that just makes one more thing I have to work out with the administration and it is overwhelming and frustrating even though they are super nice about it. I am trying my best to raise my kids and take care of him sometimes it is not as stressful as others and sometimes it gets to the point where I just want to run and hide and cry a lot. Sometimes I just want to stay in bed and sleep until it all goes away, but I know that is not possible.
Wednesday, January 29, 2014
Advocacy Day
The kids and I had the opportunity to go up and speak at the State Capital. What a great experience for us. The kids did an amazing job telling their story and telling how it really is. We were able to let people know how hard it is.
The Deseret News was there and they did an awesome article on our family, and they sent out a photographer to our house to capture us taking care of Jaren. If you would like to check it out go to http://www.deseretnews.com/article/865595003/Wife-caregiver-says-families-living-with-dementia-need-support.html
I don't know if I will make any difference now but hopefully in the future it will help others.
I went to the grocery store yesterday to get a printed copy of the paper and we were on the very front page in the headlines. It said to read the article on B1 so I went to it and a huge picture of Jaren and the girls. There were a few more in the article as you read on. The kids were very excited.
Thank you Deseret News for getting the word out and for you wonderful story!
The Deseret News was there and they did an awesome article on our family, and they sent out a photographer to our house to capture us taking care of Jaren. If you would like to check it out go to http://www.deseretnews.com/article/865595003/Wife-caregiver-says-families-living-with-dementia-need-support.html
I don't know if I will make any difference now but hopefully in the future it will help others.
I went to the grocery store yesterday to get a printed copy of the paper and we were on the very front page in the headlines. It said to read the article on B1 so I went to it and a huge picture of Jaren and the girls. There were a few more in the article as you read on. The kids were very excited.
Thank you Deseret News for getting the word out and for you wonderful story!
Saturday, December 28, 2013
Celebrate like it is the last!
I haven't been on the computer much lately so I haven't been updating the blog. I have been so busy with everything that I haven't really had a lot of time. Jaren is needing more and more care, work is busy they have been asking me to sub in the classrooms a lot lately and it is hard to work all day when you are not used to it, plus I have to come home at my lunch and feed Jaren and then go back. Teachers are very, very under appreciated, they are amazing to be able to teach that many students every single day.
This Christmas was very special for us. I have always been told to celebrate like this is the last Christmas and for some reason I didn't really think much about it, until this year. Jaren has had 4 friends from the care center pass away in the last 2 months and so this year it has hit me really, really hard that this might be the last Christmas. The men that passed away were walking, and talking and laughing last year at this time and now they are gone. I hate thinking about this being the last one but I took my kids all out on a date by themselves and we also all went together and I brought it up to them telling them that we need to think about things that we would like to do with him here and that we can do when he is gone and that this just might be his last Christmas. They all were very good about it and we were able to talk about some very important things that are going on in their lives and some of the things that they want to do to always remember him.
We have been really blessed this Christmas, we were kind of spoiled. But it was so worth it to see the look on all of their faces on Christmas morning. It was a bit different this year as Jaren has been in a lot of pain and is now falling out of bed but we just made due with the blocks in the road and we helped him open his presents because his hands would not work that morning. We are so blessed to know so many wonderful people that really care about us and helped us out this Christmas.
Braxton told me a few months ago that he knows that Santa is real because Jesus used his priesthood to give a man a bushy, white beard and magical powers, it was so cute. Then a couple weeks later he looked at me and asked me if Santa was real, I told him that I did help Santa out with things but some things are unexplainable, Christmas isn't so much about Santa it's about the magic of Christmas and how everyone wants to help everyone and sometimes we even get presents that I have no idea where they came from, he looked and me and said I think Heavenly Father is blessing us, he knows what we are dealing with and he wants us to be happy, I had a hard time not crying, but we were driving down the street and I needed to see. It was so touching to hear the perspective from a 9 year old he is such a sweatheart and I don't know what I would do without him. He is growing up way to fast and he is doing a great job of helping me with Jaren and he takes care of me and he is not afraid to hug me in front of his friends.
RaKelle and Ashlyn are doing so good in school this year, Ashlyn brought home a 3.7 GPA and she was nominated for Lion of the Day. RaKelle brought home a 3.0 GPA and she is really having a good time this year. She said to me the other day the she wants to take seminary again next semester, I knew she would like it if she just tried it. They are both growing up to be great young women and I am so lucky to be their mom.
The Alzheimers Association called and asked me if I would do a presentation at advocacy day at teh State Capital and bring my kids as well I am nervous but excited. We will be there on January 27, 2014. It will be fun and hopefully it will be worth it.
This Christmas was very special for us. I have always been told to celebrate like this is the last Christmas and for some reason I didn't really think much about it, until this year. Jaren has had 4 friends from the care center pass away in the last 2 months and so this year it has hit me really, really hard that this might be the last Christmas. The men that passed away were walking, and talking and laughing last year at this time and now they are gone. I hate thinking about this being the last one but I took my kids all out on a date by themselves and we also all went together and I brought it up to them telling them that we need to think about things that we would like to do with him here and that we can do when he is gone and that this just might be his last Christmas. They all were very good about it and we were able to talk about some very important things that are going on in their lives and some of the things that they want to do to always remember him.
We have been really blessed this Christmas, we were kind of spoiled. But it was so worth it to see the look on all of their faces on Christmas morning. It was a bit different this year as Jaren has been in a lot of pain and is now falling out of bed but we just made due with the blocks in the road and we helped him open his presents because his hands would not work that morning. We are so blessed to know so many wonderful people that really care about us and helped us out this Christmas.
Braxton told me a few months ago that he knows that Santa is real because Jesus used his priesthood to give a man a bushy, white beard and magical powers, it was so cute. Then a couple weeks later he looked at me and asked me if Santa was real, I told him that I did help Santa out with things but some things are unexplainable, Christmas isn't so much about Santa it's about the magic of Christmas and how everyone wants to help everyone and sometimes we even get presents that I have no idea where they came from, he looked and me and said I think Heavenly Father is blessing us, he knows what we are dealing with and he wants us to be happy, I had a hard time not crying, but we were driving down the street and I needed to see. It was so touching to hear the perspective from a 9 year old he is such a sweatheart and I don't know what I would do without him. He is growing up way to fast and he is doing a great job of helping me with Jaren and he takes care of me and he is not afraid to hug me in front of his friends.
RaKelle and Ashlyn are doing so good in school this year, Ashlyn brought home a 3.7 GPA and she was nominated for Lion of the Day. RaKelle brought home a 3.0 GPA and she is really having a good time this year. She said to me the other day the she wants to take seminary again next semester, I knew she would like it if she just tried it. They are both growing up to be great young women and I am so lucky to be their mom.
The Alzheimers Association called and asked me if I would do a presentation at advocacy day at teh State Capital and bring my kids as well I am nervous but excited. We will be there on January 27, 2014. It will be fun and hopefully it will be worth it.
Friday, October 25, 2013
Update! update!
A lot has been going on here at our house. After I met with the Mayor I did my first support group meeting and it was good there were not a lot of people there but the ones that were, were able to meet other caregivers. The next day Jaren woke up throwing up so we ended up in he hospital, ON HIS BIRTHDAY, what a way to spend your birthday huh? NOT it was not a fun day they had to admit him to make sure that he was getting better and we got to come home the next day which was good, but he didn't really get a whole lot better for a long time after that. He now has an aide that comes in the morning to help get him up an ready for the day, like eating breakfast, taking blood sugars and she takes him on a walk. I have to be up and have everyone ready for the day by 7:30 am to be to work by 7:45 am it is nice because I get home at 11:30 am but very hard to get up so early and get everyone ready including myself.
Meeting with the social worker
We went and met with the social worker at the Uof U to see how things were going, he said that we were doing a really good job with things but that I need to break out of routine once in a while so I don't get burnt out. I have a hard time leaving Jaren over night so he suggested that I leave the kids with someone and him and I go somewhere, I thought about it and it seems weird to me to take him somewhere because it is a lot more work for me to be gone somewhere that he is not familiar with and the kids need a break too, so we decided to go on a little mini staycation!!
Park City
Our little getaway was the best thing we have done in a long time we stayed close to home but we were able to get away and enjoy each other and we definitely broke out of our routine which was so nice. We left here Thursday afternoon and got there about 3:30pm and of course the kids were really excited because our hotel had an indoor pool so we went swimming ALOT they were in 7th heaven. Jaren didn't really want to do a whole lot so he stayed in the room a lot and I took the kids swimming. I even got in with them once. We did a little shopping at the outlet stores but didn't buy anything. We wanted to go back on Friday to the outlets.
Friday morning we got up went swimming of course and then got ready for the day went shopping and then in the afternoon my sister came up with her husband and he grew up in Park City, he is a farmer up there so his brother and him took the kids and I horse back riding! Jaren stayed back at the cabin with my sister that was nice of her to stay with him so he didn't wander off. It was sooooo fun the kids loved it, it was a beautiful day and they were so nice to take us. If you ever go to Park City call Red Pine Adventures for horse back riding in the summer time and snow mobile tours in the winter. They are excellent and they were so nice. After the horse back riding we went and stopped at his parents house and got to talk to them for awhile, when we left we went and saw the sheep that they own and then we went to dinner with them. Saturday came way to fast, and it was time to go home. We did go swimming one more time though before we checked out. After we got ready and checked out of the hotel we went and toured the Utah Olympic Park, it was the neatest thing they have a museum that you can tour for free, they have a bobsled that you can sit in for pictures, and they let you sit outside and watch the skiers train it was amazing!! they did ariels and landed in the pool it was really cool to see. They also have a free chairlift ride that you can ride up and then walk down a little trail back to the main building. They also have some really cool zipline rides too but they cost so we didn't do those. I am so thankful that I was told to actually go somewhere, we have not been anywhere for a very long time. I guess I was waiting for someone to give me permission to actually take a break and not feel guilty about it. It was hard to take Jaren but he did really good and it was really nice to enjoy some time with just me and the kids that was fun and not to much work.
Bake Sale
I didn't mention the bake sale, RaKelle and Ashlyn put together a bake sale for a young women activity for the AFTD. The AFTD held a food for thought week fundraiser and their goal was to raise awareness for FTD (frontotemporal dementia) in all states in the US and in Canada. The girls did an awesome job, we got donations from a ton of generous people that shared their talents with baked goods. I was very pleased with the great job they did. They raised $735.00 for the AFTD and I know it will go toward a lot of good things for that foundation and we were happy to do it. It taught my kids that we can do things in our own community that will help a lot of people all over the country and it didn't take that much effort. It was freezing cold that day but it could have been worse it could have been snowing so that was a blessing. They learned how to collect money and give change. They got to talk with people and tell them how it is living with a loved one with dementia. I hope that they will remember how good they felt when we counted how much they raised and how many people came to support us for this cause. I hope that they will do more in the future. I am so thankful for the AFTD giving us the opportunity to help many people like their dad.
Meeting with the social worker
We went and met with the social worker at the Uof U to see how things were going, he said that we were doing a really good job with things but that I need to break out of routine once in a while so I don't get burnt out. I have a hard time leaving Jaren over night so he suggested that I leave the kids with someone and him and I go somewhere, I thought about it and it seems weird to me to take him somewhere because it is a lot more work for me to be gone somewhere that he is not familiar with and the kids need a break too, so we decided to go on a little mini staycation!!
Park City
Our little getaway was the best thing we have done in a long time we stayed close to home but we were able to get away and enjoy each other and we definitely broke out of our routine which was so nice. We left here Thursday afternoon and got there about 3:30pm and of course the kids were really excited because our hotel had an indoor pool so we went swimming ALOT they were in 7th heaven. Jaren didn't really want to do a whole lot so he stayed in the room a lot and I took the kids swimming. I even got in with them once. We did a little shopping at the outlet stores but didn't buy anything. We wanted to go back on Friday to the outlets.
Friday morning we got up went swimming of course and then got ready for the day went shopping and then in the afternoon my sister came up with her husband and he grew up in Park City, he is a farmer up there so his brother and him took the kids and I horse back riding! Jaren stayed back at the cabin with my sister that was nice of her to stay with him so he didn't wander off. It was sooooo fun the kids loved it, it was a beautiful day and they were so nice to take us. If you ever go to Park City call Red Pine Adventures for horse back riding in the summer time and snow mobile tours in the winter. They are excellent and they were so nice. After the horse back riding we went and stopped at his parents house and got to talk to them for awhile, when we left we went and saw the sheep that they own and then we went to dinner with them. Saturday came way to fast, and it was time to go home. We did go swimming one more time though before we checked out. After we got ready and checked out of the hotel we went and toured the Utah Olympic Park, it was the neatest thing they have a museum that you can tour for free, they have a bobsled that you can sit in for pictures, and they let you sit outside and watch the skiers train it was amazing!! they did ariels and landed in the pool it was really cool to see. They also have a free chairlift ride that you can ride up and then walk down a little trail back to the main building. They also have some really cool zipline rides too but they cost so we didn't do those. I am so thankful that I was told to actually go somewhere, we have not been anywhere for a very long time. I guess I was waiting for someone to give me permission to actually take a break and not feel guilty about it. It was hard to take Jaren but he did really good and it was really nice to enjoy some time with just me and the kids that was fun and not to much work.
Bake Sale
I didn't mention the bake sale, RaKelle and Ashlyn put together a bake sale for a young women activity for the AFTD. The AFTD held a food for thought week fundraiser and their goal was to raise awareness for FTD (frontotemporal dementia) in all states in the US and in Canada. The girls did an awesome job, we got donations from a ton of generous people that shared their talents with baked goods. I was very pleased with the great job they did. They raised $735.00 for the AFTD and I know it will go toward a lot of good things for that foundation and we were happy to do it. It taught my kids that we can do things in our own community that will help a lot of people all over the country and it didn't take that much effort. It was freezing cold that day but it could have been worse it could have been snowing so that was a blessing. They learned how to collect money and give change. They got to talk with people and tell them how it is living with a loved one with dementia. I hope that they will remember how good they felt when we counted how much they raised and how many people came to support us for this cause. I hope that they will do more in the future. I am so thankful for the AFTD giving us the opportunity to help many people like their dad.
Monday, September 9, 2013
Meeting with the Salt Lake County Mayor
Last Monday I was sitting at the computer and I decided to email the Salt Lake County Mayor, I received a phone call the next day on the way to Braxton's school and they said they recieved my email and that they were having an open door for the people in the community to come and talk with the mayor about concerns they have, he said that the appointments had been full for quite sometime but that 2 minutes after he had read my email a lady called and cancelled her appointment, so I was able to go and meet with Mayor McAdams. RaKelle was able to come with me, when we got there we filled out some paperwork to explain what we were there for, I went back with a guy from the mayor's office and he explained to me how things would work, they had called the director of Human Services to sit in on the meeting and they listened to me and told me that something was happening with Valley Mental Health and that Salt Lake County was taking it over and so they are able to make changes to the policies and things. I said it is very important to stop basing services on age it should be based on illness and they all were in agreement with me. The mayor happened to be the same age as Jaren and was able to relate. I felt like I was able to accomplish some things and even if they don't happen in the next few months it will help a ton of others in the future. I took teh letters from my kids and gave them a copy of them, I also gave them a bunch of websites that they could go to for more information on MLD and FTD. I feel like these trials I am living through will help people in the future and they don't have to ever feel like I do about no respite care.
Sunday, August 18, 2013
School is coming fast
I can't believe it is time for school to start again. This summer I was hoping to do a lot of stuff with the kids but we ended up at doctor's appts and tests at the hospital, I am very proud of my kids though for keeping a good attitude most of the time, minus all the fighting. I am ready for school to start hopefully it will cut down on the fighting we will see. Ashlyn starts school on Thursday and the other 2 start next Monday. They have the 7th graders go to school for one day before the rest of the students so they can find all of their classes without the 8th, and 9th graders.
We had a good friend come over tonight to help Jaren give the kids a blessing and I had no idea that Jaren was clueless about how to do it and what to say. I know he has a hard time remembering the words that he has to say so I always have someone here to help, but this time he couldn't do any of it and our good friend did a great job helping him. I hope he was able to feel the spirit I know I did. When all the kids were done he asked if I would like one and it caught me by surprise but it was very touching and I know I will be able to handle the trials that are ahead with the beginning of school.
I got a call the other day from the school that I work for and I get to start September 11, 2013, and my hours have changed from last year. I will be working from 7:45-11:15am Monday-Thursday and 10-1 on Fridays. It will be difficult to get everyone out of the house by 7:30am but I am way excited to be home so early so I can get some things done before the kids come home from school. I am looking forward to the new school year. I am really sad though that I won't be working under Jayne this year she is an amazing person and I will miss her terribly, thank goodness she will be in the same building still I can still go talk to her.
We had a good friend come over tonight to help Jaren give the kids a blessing and I had no idea that Jaren was clueless about how to do it and what to say. I know he has a hard time remembering the words that he has to say so I always have someone here to help, but this time he couldn't do any of it and our good friend did a great job helping him. I hope he was able to feel the spirit I know I did. When all the kids were done he asked if I would like one and it caught me by surprise but it was very touching and I know I will be able to handle the trials that are ahead with the beginning of school.
I got a call the other day from the school that I work for and I get to start September 11, 2013, and my hours have changed from last year. I will be working from 7:45-11:15am Monday-Thursday and 10-1 on Fridays. It will be difficult to get everyone out of the house by 7:30am but I am way excited to be home so early so I can get some things done before the kids come home from school. I am looking forward to the new school year. I am really sad though that I won't be working under Jayne this year she is an amazing person and I will miss her terribly, thank goodness she will be in the same building still I can still go talk to her.
Sunday, July 28, 2013
some good, some bad
Good
I have been in the process of trying to start a support group for FTD (frontotemperal dementia) in the evenings for the caregivers who work during the day like myself. I finally got word on Thursday that I got approval to do a support group at the Bingham Creek Library for an entire year, it will be every 2nd Wednesday of the month at 6:00 to 7:30pm I am so excited. I know support groups are sometimes the only thing that gets people through the day or week. It is people that know what you are going through and that can empathize with you and you can say anything and they know exactly what you mean and they validate you and your thinking process. I can't wait to get started. The first one will be September 11. I think that this will also be very therapuetic for me as well.
Bad
There is always some bad with the good, and I know this isn't just me going through this part but I seem to not be able to handle it as well with Jaren changing so fast and my blood pressure being out of control. When I went in to the doctor for my BP it was 180/110 I started medication and it stayed high but when I went in for a BP check on Thursday it was 122/88 I can't tell you how relieved I was. The kids have been fighting so bad lately I finally couldn't take it anymore on Saturday and sent everyone to their rooms so I could be alone for a minute. RaKelle has been so rude to me lately, and if she isn't being sassy and rude it's Ashlyn, and Braxton just eggs it all on and then cries when he gets hurt. I finally let them out of their rooms and we talked and I told them that either they have to be better at not fighting and being mean to me or I have to put dad in a home I can't be the mom and the dad and the caregiver and take care of everything that he needs, I know he needs a lot more attention than they do, and I know I don't have enough energy to do it all but I am trying my best. They have not fought at all YET today I think maybe I finally made it stick in their heads that I am trying my best and I can't do it all and they need to help out by not fighting. I had to make sure and thank them for helping me as much as they can with Jaren, and I am so thankful for what they do. But the fighting has to stop. I know siblings fight and I know that sometimes it will escalate but 24/7 fighting is way to much.
I have been in the process of trying to start a support group for FTD (frontotemperal dementia) in the evenings for the caregivers who work during the day like myself. I finally got word on Thursday that I got approval to do a support group at the Bingham Creek Library for an entire year, it will be every 2nd Wednesday of the month at 6:00 to 7:30pm I am so excited. I know support groups are sometimes the only thing that gets people through the day or week. It is people that know what you are going through and that can empathize with you and you can say anything and they know exactly what you mean and they validate you and your thinking process. I can't wait to get started. The first one will be September 11. I think that this will also be very therapuetic for me as well.
Bad
There is always some bad with the good, and I know this isn't just me going through this part but I seem to not be able to handle it as well with Jaren changing so fast and my blood pressure being out of control. When I went in to the doctor for my BP it was 180/110 I started medication and it stayed high but when I went in for a BP check on Thursday it was 122/88 I can't tell you how relieved I was. The kids have been fighting so bad lately I finally couldn't take it anymore on Saturday and sent everyone to their rooms so I could be alone for a minute. RaKelle has been so rude to me lately, and if she isn't being sassy and rude it's Ashlyn, and Braxton just eggs it all on and then cries when he gets hurt. I finally let them out of their rooms and we talked and I told them that either they have to be better at not fighting and being mean to me or I have to put dad in a home I can't be the mom and the dad and the caregiver and take care of everything that he needs, I know he needs a lot more attention than they do, and I know I don't have enough energy to do it all but I am trying my best. They have not fought at all YET today I think maybe I finally made it stick in their heads that I am trying my best and I can't do it all and they need to help out by not fighting. I had to make sure and thank them for helping me as much as they can with Jaren, and I am so thankful for what they do. But the fighting has to stop. I know siblings fight and I know that sometimes it will escalate but 24/7 fighting is way to much.
Wednesday, July 17, 2013
doctors, tests, and more
We finally had the Endoscopy test today with the GI doctor, it was so fast I thought we would be there forever but we weren't. The Dr said that Jaren has a hiatal hernia but no ulcers so that is good. He said the hernia is not something to worry about as of yet. He said that they did put something in the esophagus to stretch it out a little bit and they did take some biopsy's so they don't have to put him through this again. The Dr seems very knowledgeable and so I trust what he is doing, I know he has to rule out everything before we make a decision about a feeding tube to make sure that the tube will be our best option. He said if the stretching does not work and we should know if it is going to work or not, right away if it works great, if not we have to go back in for a swallow study with a speech pathologist. This roller coaster ride of emotions is not fun.
Saturday night he choked really bad and couldn't even eat dinner. He has lost some weight in the last week so it is a little concerning. He woke up on Monday throwing up so the first thing I did was check his sugars and they were not to high, so I knew it wasn't DKA again. I called the family Dr and he was out sick so I talked to the nurse and told him what was going on with him and he asked me what my thoughts were because I am the caregiver and I know him the best! It made me feel like they cared what I thought. I told him that I was worried because of the choking the other night and the last time he was hospitalized for pneumonia he was throwing up. He told me to bring him in on Tuesday when the Dr was back in. I took him in yesterday and he looked much better but I wanted to make sure. His lungs were clear, and he gave us a prescription for phenergan suppositories to stop the vomiting when it occurs. I was talking with the nurse and was telling him that I had high blood pressure last time I went in and he wouldn't let me leave until I had it checked again, and it was really high so he walked me right down to the receptionist and made an appointment for me for Wednesday, I really am thankful for the people that care about me and take care of me. I am so busy taking care of Jaren that I don't always catch symptoms for my health. I can see why caregivers are often very ill.
Saturday night he choked really bad and couldn't even eat dinner. He has lost some weight in the last week so it is a little concerning. He woke up on Monday throwing up so the first thing I did was check his sugars and they were not to high, so I knew it wasn't DKA again. I called the family Dr and he was out sick so I talked to the nurse and told him what was going on with him and he asked me what my thoughts were because I am the caregiver and I know him the best! It made me feel like they cared what I thought. I told him that I was worried because of the choking the other night and the last time he was hospitalized for pneumonia he was throwing up. He told me to bring him in on Tuesday when the Dr was back in. I took him in yesterday and he looked much better but I wanted to make sure. His lungs were clear, and he gave us a prescription for phenergan suppositories to stop the vomiting when it occurs. I was talking with the nurse and was telling him that I had high blood pressure last time I went in and he wouldn't let me leave until I had it checked again, and it was really high so he walked me right down to the receptionist and made an appointment for me for Wednesday, I really am thankful for the people that care about me and take care of me. I am so busy taking care of Jaren that I don't always catch symptoms for my health. I can see why caregivers are often very ill.
Friday, July 12, 2013
very emotional
The girls went to Brighton camp this week so it was just Jaren and I and Braxton home. We did a lot of fun things together but we missed the girls like crazy. They went the whole entire week and didn't call me once, Ashlyn said that she only cried once or twice which is really good for her.
Thursday night Jaren wanted to sleep downstairs with me so I helped him down the stairs and it was hard to get to sleep because I am not used to him being right next to me. My brain started turning and I started crying he actually put his arm around me and I realized how much I miss that and how lonely I am even when he is right next to me. I miss his kisses, and I miss cuddling with him. Friday has been a really weird day it seems that last night it was all a dream. I hate MLD and I hate that it has taken away my best friend and I hate that he is not the same person I married. I try really hard to stay positive most of the time about all this crap but I feel like sometimes it is ok to break down and feel sorry for myself once in a while.
Now to something more positive, we were able to go and meet up with a family from Arizona that is also living with loved ones with MLD and it was really fun to meet them and to talk with someone else. They have the most beautiful kids and they are so fun to be with and to talk to. They are a very positive family and they are amazing to me. I am so thankful for the many friends a families that we have been able to come in contact with because of MLD but I still dislike the disease very badly.
I have the opportunity to teach relief society this coming Sunday and I am a little nervous I have never taught and adult class before I am used to teaching children so it should be interesting. I guess I have something to learn from the lesson, it is about Charity and helping others out is what I am getting from what I have read a million times. I hope that people will get something from the lesson and that I can teach with love and not offend people. Maybe I am not the person to teach this lesson!
Thursday night Jaren wanted to sleep downstairs with me so I helped him down the stairs and it was hard to get to sleep because I am not used to him being right next to me. My brain started turning and I started crying he actually put his arm around me and I realized how much I miss that and how lonely I am even when he is right next to me. I miss his kisses, and I miss cuddling with him. Friday has been a really weird day it seems that last night it was all a dream. I hate MLD and I hate that it has taken away my best friend and I hate that he is not the same person I married. I try really hard to stay positive most of the time about all this crap but I feel like sometimes it is ok to break down and feel sorry for myself once in a while.
Now to something more positive, we were able to go and meet up with a family from Arizona that is also living with loved ones with MLD and it was really fun to meet them and to talk with someone else. They have the most beautiful kids and they are so fun to be with and to talk to. They are a very positive family and they are amazing to me. I am so thankful for the many friends a families that we have been able to come in contact with because of MLD but I still dislike the disease very badly.
I have the opportunity to teach relief society this coming Sunday and I am a little nervous I have never taught and adult class before I am used to teaching children so it should be interesting. I guess I have something to learn from the lesson, it is about Charity and helping others out is what I am getting from what I have read a million times. I hope that people will get something from the lesson and that I can teach with love and not offend people. Maybe I am not the person to teach this lesson!
Monday, July 8, 2013
No Electronics Day / Girls Camp
A couple of weeks ago I was so sick of the T.V. and the Nintendo being on 24/7 and all of the fighting, I decided that we were going to have a no electronic day. It was the best decision ever I made sure Jaren went to the center that day so that he wouldn't whine about not being able to play his DS and the kids wouldn't yell at him for trying to play it over and over. We got so much done that day and there were little fights but ones that didn't get out of control and there were no tears!! I am going to try and do that more but I have to make sure that it is a day that Jaren won't be home.
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Sunday, June 30, 2013
swallowing
Last weekend Jaren couldn't swallow any of his pills so he didn't have any pills for a couple of days, I tried opening the capsule and putting it in applesauce without him knowing, I tried putting them in milk, chocolate milk, pudding, nothing was working so I finally went to Walgreens and got some spray stuff called pill glide and sprayed it and he got most of them down. With it being on a weekend I couldn't call a gastroenterologist because he is not an established patient, I did call the family doctor and they told me to take him to the ER but I really didn't want to sit there forever, I decided since he was able to swallow most of them with that spray that we could wait until Monday. I called first thing Monday morning to a GI doctor and they didn't have any openings until July 29th, yes that says July. I took the appointment and asked them to put him on a cancellation list and they called on Wednesday and they had an opening on Thursday so I took the appointment and I am so glad we chose the one that we chose, he was so kind and so honest and he told us right from the beginning that he had never heard of MLD and he will have to research it to know what to do. He did order an endoscopy and they have to put him under anesthesia for the procedure so I hope he does well. He said if that all comes back normal they will then do another swallow study and then go from there. I asked him about a G tube just for meds and he said they want that to be the last resort but that if he is aspirating with food and things that we will keep that in mind. I told him that I know eventually he will probably have to have one and I don't want to be stuck not able to get into a doctor for a month and a half he told me that now that he is a patient it should be easy to get into them.
Braxton had Cub Country this past weekend and Friday he came home with a sore throat and as the night went on he started getting a fever, I took him in just in case it was strep and he had to have 2 strep cultures and they both came back negative I still haven't heard if they have come back from the lab yet for the longer culture. He was very upset that he didn't get to go to Cub Country on Saturday but he laid in bed all day Saturday and half the day Sunday he is finally feeling normal. I was up all night with him Friday night and then Saturday night Jaren was up all night because he couldn't feel his feet at all and then he started crying because they hurt so bad. I don't know what to do for the pain.
Sunday, June 16, 2013
I guess I wasn't done with sickness
I thought we would get over everything, boy was I wrong. RaKelle finally got better and then Ashlyn came down with croup, and Braxton got strep, and that same day RaKelle came home from school with the stomach flu and missed the last 2 days of school, I got a little bit of the stomach flu but it only lasted 1 day, thank goodness. I am so thankful that Jaren has not been sick. I had a horrible cold but I am much better. I thought maybe we were in the clear and then Braxton woke up with Pink Eye. Now hopefully we will be done and enjoy our summer.
I have enjoyed being home so far this summer, I was not allowed any hours this summer and I was praying that I would get to work at the school again in the fall. I got a call on Monday asking if I would be willing to come back and work as a k-3 classroom aid! yeah I can't tell you what a relief that is for me to know that I will have a job again when school starts.
RaKelle is still really struggling with life but she is able to tell me when she needs to talk and she is very open with me and their new counselor is really good and they like him except for, Braxton is having a hard time with the change but I think when they build up their trust he will be fine with him.
We were able to go to the Sweets candy factory for a free tour and it was so much fun and it was really cool to see how they make the delicious candy that we eat! Jaren loved it and he didn't complain one time which is different for him, he usually complains about everything. They gave samples of a lot of different candies and they were all so nice. I hope that we can do some more tours this summer, at different places. We have kept ourselves very busy so far we haven't had a chance to even sit down and relax, but it is fun. I am trying to get my house completely clean and go through everything but spending time with the kids is a lot more fun so we do a little bit each day before we go do other things so it will get there but who knows when.
The aide coming in 3 days a week for about an hour for now is wonderful, I have really enjoyed getting to know her and she is really fun. She is good with Jaren and if he doesn't want to shower and things she says ok we will just sit and talk or play nintendo and then she comes back 2 days later and he gets in and she helps him shave and he is doing so much better now that he is clean most of the week, he won't always change his clothes but that's ok, that is not a fight I choose to have so I just let him wear whatever he wants. He still enjoys going to the center and now that it is summer I get to spend the entire day with just the kids and we don't have to worry about Jaren staying home alone, or having to come home and check on him.
Hopefully now I can say that we are done with illness for awhile and we can enjoy the rest of our summer!!
I have enjoyed being home so far this summer, I was not allowed any hours this summer and I was praying that I would get to work at the school again in the fall. I got a call on Monday asking if I would be willing to come back and work as a k-3 classroom aid! yeah I can't tell you what a relief that is for me to know that I will have a job again when school starts.
RaKelle is still really struggling with life but she is able to tell me when she needs to talk and she is very open with me and their new counselor is really good and they like him except for, Braxton is having a hard time with the change but I think when they build up their trust he will be fine with him.
We were able to go to the Sweets candy factory for a free tour and it was so much fun and it was really cool to see how they make the delicious candy that we eat! Jaren loved it and he didn't complain one time which is different for him, he usually complains about everything. They gave samples of a lot of different candies and they were all so nice. I hope that we can do some more tours this summer, at different places. We have kept ourselves very busy so far we haven't had a chance to even sit down and relax, but it is fun. I am trying to get my house completely clean and go through everything but spending time with the kids is a lot more fun so we do a little bit each day before we go do other things so it will get there but who knows when.
The aide coming in 3 days a week for about an hour for now is wonderful, I have really enjoyed getting to know her and she is really fun. She is good with Jaren and if he doesn't want to shower and things she says ok we will just sit and talk or play nintendo and then she comes back 2 days later and he gets in and she helps him shave and he is doing so much better now that he is clean most of the week, he won't always change his clothes but that's ok, that is not a fight I choose to have so I just let him wear whatever he wants. He still enjoys going to the center and now that it is summer I get to spend the entire day with just the kids and we don't have to worry about Jaren staying home alone, or having to come home and check on him.
Hopefully now I can say that we are done with illness for awhile and we can enjoy the rest of our summer!!
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