The last post before the end of the year and on to bigger and better things!!
October came and it has been a year. Holy crap we have gone through a lot this year, and to think the year isn't even over yet. The first weekend in October I had a "marriage retreat" which was awkward and that is being nice. It would have helped a long time ago but right now where things are really stranded it was really hard. Not that I didn't learn lots of stuff but I cannot be close to anyone right not. I am not going to go into anything else here about that for now since those that are close to me understand where I am and what is going on, I want to get to other things. The next week I had to take Rhett's chair to be fixed since there were bolts coming loose and I was not sure how to fix the machine on my own yet. We also had parent teacher conference and it was like they tried to corner us into saying that Dylan doesn't need an interpreter, which was not the time to discuss this. He is struggling and it made him almost cry to have them do this when they need to be focused on how he is doing in school and what he needs help on. I was really frustrated and it makes me mad that people think they can treat those with a hearing loss like that. Nikole had a follow up with the orthodontist since her bottom retainer seems to keep breaking off. A week later Rhett went to the orthodontist at 9 am and Nikole had an appointment with Urology at 9:30. Good thing they are across the hall from each other at the hospital. Nikole is doing good from from the doctor's standpoint. YAY!!! I will take it. That night she had a sleep study that night. She slept so much better this time than last time. Thank goodness that it was fall break, Which means there was no school that I needed to worry about getting my kids to the very next day. My mom and dad both had an appointment that Friday for a yearly check up. My mom came home distraught since the doctor diagnosed her with type 2 diabetes. She was so sad and it made my heart hurt. We are all working together to get healthy and exercising daily. It is hard when she is always taking care of everyone and not taking care of herself. I am glad that she is now working on caring for herself. A week before the end of the month I had to take Rhett back to the social security office since they said they needed more information to determine if he would get SSI. We showed up as instructed and was told that he does qualify for SSI and will start receiving monthly income based on his disability. He was over the moon and is now learning how to use money wisely. Wednesday I took Gavin in for an evaluation for braces. I was able to get $500 off and another $100 because I have braces from them, then the insurance paid half! I am so excited!! He will get braces before too long. The day of Dylan's Halloween parade I had my CT scan and it came back like everything is normal. Nikole didn't have school since it was the end of term for her. SHE PASSED ALL HER CLASSES!!! YAY!!! Finally. Gavin and Dylan both had school and went like normal. The next day all the kids dressed up and we went to officers hollow which is put on by the U of U for kids to go have fun during the day. That evening was also the Halloween party and the kids loved every moment to be in their costumes. Finally the actual day of Halloween came and the kids were so excited, they went out trick or treating with daddy except for Rhett, he stayed home and handed out candy. I was happy to have a helper. Sadly there were not very many kids and we ended up with a lot of candy leftover. That was the end of October.
November came so much faster than expected. Dylan had his yearly appointment with the orthopedic surgeon since the doctor follows him. The same day that Dylan had that appointment Rhett was able to get his bottom brackets off his teeth. He was so excited to finally be free from the braces that he has had for years. As we went through the weekend we had Thanksgiving as a family on the 4th since that is when most of my family were going to meet in Idaho to celebrate Thanksgiving together, we just couldn't go since my car has been sick and in the shop for a long time. Sunday the 5th I noticed Rhett not eating and avoiding food. He said he had a tooth ache and just wasn't hungry because it hurt. He had a lump on his jaw also. So throughout the next week I was trying to get a hold of a doctor or dentist. Also on the 8th of November Gavin went with me to the orthodontist and finally got to get braces on, he was not planning on it hurting as much as it did but he was really happy to finally get braces. I finally got a hold of the dentist office Friday afternoon, they asked if I could bring Rhett in that day before 4 pm. From running around and collecting children after school there was no way I would make it there before 4 pm. They called out antibiotics and we made a dentist appointment on Tuesday since that was the first available appointment. Tuesday came so slow as Rhett was in a lot of pain and not eating very well. We showed up at the dentist and they took an scan of his teeth after they felt his lump. They found a cyst in his jaw and sent us to an oral surgeon to talk about trying to get it out the same day. The oral surgeon said that Rhett would probably lose almost all of his teeth on that side of his jaw because the cyst is so big. We were distraught while having this conversation. I let everyone know that they found a cyst and he will need surgery. I contacted the orthodontist since he just got his bottom brackets off the beginning of the month. I was so upset after talking with the oral surgeon. I told him that I was really upset that no one saw this earlier and that the oral surgeon said that all of the teeth on Rhett's lower jaw would have to be taken out. He asked for the images and so I sent them to him and he was so happy that someone found the cyst. He contacted a few other that work up at primary children's that would be willing to take on Rhett and he found us a crainofacial surgeon that would be willing to do just that. We set up an appointment on the 17th to meet with that doctor. It could not come soon enough since of course Rhett is in pain and is not eating very much. At least it was only two days away. I was grateful that the orthodontist got back to me so quickly and set something up for us. That evening I had festival of trees training, since I have been an auction host for the festival of trees every year for the last 10 years. I truly love it, getting dressed up and helping people. This year there was new things going on and everything was electronic bidding. In other words I told my sister in New Jersey the information in order to see the items even though she is in New Jersey. She was excited to see all the items available, and asked me if they would be able to deliver if she won something. HAHA! They can deliver in the valley, but not to New Jersey. Maybe one day they might be able to but that would be a ways away for sure. The next day I got Nikole back to the psychologist to get something to help her focus in class since she is failing several classes within two weeks of the term starting. She was not happy and does not want to take anything, sadly we tried her way and it was so hard for her to pass all her classes because she is not paying attention in classes. I told her we are going to try this at least until the end of the term hopeful that it will help her focus to the point of getting her work complete and things might be better the end of the term compared to last term. Friday came and we went to the hospital to meet this craniofacial surgeon. She said that he might be able to keep his teeth and all they have to do is clean out that cyst and they might have to put bone substitute in his jaw to help close up the hole that the cyst had created in the jaw bone. She recommended surgery sooner rather than later, I look at my calendar and said that Wednesday would work since I didn't have to work and it was right before a long weekend. She said that we needed a meeting with an anesthesiologist since he has some pretty big medical problems. Slightly frustrated we left the office and ran right into the anesthesiologist who has worked on Rhett when he was getting his VEPTRs expanded, he was getting off the elevator when we were getting on the elevator. He looked over Rhett really fast and told us to put him down and he could do Rhett's surgery. We told the other doctor and thankfully they knew each other, they agreed to do surgery on Wednesday, if she heard from pulmonary and insurance approval.After we left the hospital, Rhett had an appointment with the pediatrician and the doctor said to keep them posted and good luck with surgery. HAHA!!! The pulmonary doctor finally got in touch with the surgeon and told her that his concern was that his biggest concern would be his decreasing lung function and the possibility of not being able to breathe on his own after extubation and then needing a trach. Which goes against his advance directives. He really made the surgeon nervous which is so frustrating since she is the one doing surgery on Rhett. Why do doctors make other doctors nervous and not comfortable in their own area of expertise? Wednesday the day before Thanksgiving was the day that Rhett had surgery and we had to be at the hospital at 5:45 am. What kind of crazy is that? All the information that I spent a hour going over on the phone the day before surgery was not in the computer when we got there! WHAT!!! How frustrating!!! There was no medical history according to the nurses that were looking at his chart. SERIOUSLY?!?!?!?! This is so ridiculous! I cannot believe that my special needs son who is 18 has no medical history at the hospital that he has spent a long time at from the time he was a newborn till now. I went over everything again and that took another hour before surgery. When he was finally able to go back to the OR I was exhausted from going through everything again. In the waiting room we talked to a woman who fosters Native American children and she was down here from Montana. Rhett's surgery went well and it only took about 2 hours. The doctor came and said that she was able to get all the cyst out and visually she thinks that is is benign and it looks like an Odontogenic Keratocyst which is a big fancy name of cysts that only appear in the jaw and nowhere else in the body. But all that information was just a guess based on what she saw, the biopsy will tell us for sure what is going on with his jaw and what the cyst really is. The results will not be back for at least a week. The doctor said that she needed to put in some bone substitute and it will cause swelling, but because there was too much bone missing it is something that needed to happen. Thankfully he was not sent to the ICU and instead was sent to the floor for the evening. The other kids were able too come visit Rhett and hang out for a little while. After they left the doctors decided to move Rhett to a new room, and sadly it was a down grade with a smaller room and a closet bathroom, from a bigger room and a bathroom with a shower and toilet. Sigh! Oh well we are planning on leaving the next day. Thankfully we were able to be discharged on Thanksgiving! Of course it took half the day to get sent home but when we got home daddy took all the kids but Rhett to his brother's house for Thanksgiving and they had fun. They didn't get home until later that day which was ok since Rhett and I were just resting from being at the hospital all the day before and the rest of Thanksgiving. The weekend was a blur since Rhett was recovering I stayed home with him, and I think daddy came and took the other kids with him trying to help with homework and hanging out with them playing games. I ended up helping my mom with the Christmas presents that she was giving the staff at her school. It took a few days but I was grateful to be able to help her. Things were a little crazy but I was able to help my mom get them all complete! YAY!!! On Monday Dylan had an appointment with the ENT and he said that pulmonary wants to do a swallow study to see if he is aspirating liquids. If he is they are going to want to push for a Gtube which I am going to fight since I know my boys do not want this and they should have a life where they are living life to the fullest no matter what, but I know this will be a group decision with Dylan and daddy. Rhett and Nikole both had a orthodontist appointment on Tuesday and I asked daddy to take them since I had Festival of Trees auction night the same day and I had to be in a different location at 4 pm. Well I met Nikole and daddy up at the hospital, and when they arrived we decided to take Rhett and Nikole to the playroom to see BB8 from Star Wars. Rhett went up and interacted with BB8 and even raced him and won even though the news people said that he didn't. It was a lot of fun. I took them back to their appointment and I had to leave since I had to make it across the city in 5 minutes. Which so didn't happen but I made it there before the auction started! I get bonus points!! Since we moved out of our house we ended up closing on our house this week. From all the issues we have had in the house and with the house I was happy to be finished with the house. Yes it was bittersweet, but I was happy I didn't have to deal with all the problems. Long story. I got a call asking to meet at Skyline to go over a 504 for Nikole. FINALLY!!!! I was so happy to finally have her on a 504 and getting her accommodations that she needs to succeed in school. The meeting is the first of December but still she will have a plan in place to help her.
December comes and I am so excited to finally be meeting for a 504 for Nikole today!! We go over everything and come to the conclusion that she is going to be meeting with a tracker to go over everything at least once a week and having at least one extra day if she doesn't finish in time. We were going to go to the festival of trees but it turned out that we just couldn't do it. After playing with the boys daddy brought them home and he went home since he has not been sleeping well and the kids and I just hung out at home getting things done as much as we could. We went to our old ward since our records were transferred to our new ward. It was bittersweet since we love the old ward that we were in but we needed to move to our new ward to move on in our lives, and continue to grow. Rhett and Nikole had a doctor appointment with a regular pediatrician since theirs is not in on Monday's. Nikole has a virus and so does Rhett and he is still recovering from surgery he had not even two weeks ago. Rhett had his follow up with the surgeon on the 6th of December and he is improving and it is taking the course that it is suppose to, it is just taking longer than it is suppose to for "usual" patients. After his appointment I met with Tyler who is the medicaid worker that is over Rhett and Dylan. I was able to find out for sure that Rhett still had medicaid thankfully. I found out the next day that I am not quite ready to get my braces off just yet so we will see if I am closer in January to get my braces off. Friday we had a ward Christmas party that was with our new ward. It was our first activity with our new ward. It was good for my kids to meet others that are going to be in our new ward and we were able to visit more with my parents and get information on people in our ward. Rhett and I met with our new stake president for the second time since he is Rhett's Mission President and we needed to touch base since things were a little crazy. Now Rhett will have a meeting with him every 3 months as mission protocol. Sadly Rhett is still recovering from surgery. His jaw i still swollen. That is frustrating to say the least since the people on his mission said for him to not come in until he is 100% better. We finally got the Christmas tree up and we worked on lights for at least two days. On the 13th I took both Dylan and Rhett to see their new pediatrician since Dylan was coughing and Rhett was having yuck coming from his ears. They are both still fighting a virus, but Rhett did get an antibiotic for his ears. Thursday I had an appointment and as soon as I was finished I grabbed Nikole and headed home. While the kids were taking care of the bunnies I ran around really fast came home and grabbed all my kids and took Nikole and Gavin to the psychiatrist and as soon as we were finished I told the kids that I was taking them somewhere but I would not tell them where I was taking them except for Dylan since he overheard where I was taking them. As we drove the kids guessed where we are going. They finally figured it out when we arrived, of course it was an hour drive. Thank you Mascot Miracle Foundation (MMF) for allowing us to ride with you all on the Polar Express!!! We were on the Santa car on the train and when Santa got on the car Dylan's jaw dropped, he was shocked to see Santa and was so excited until Santa had him check to see if he was on the nice list. Dylan put his finger on Santa's phone and checked on an app, and it came back and said that he was on the naughty list. He was so sad, but then he found two bells on the train and now he is on the nice list. I had to tell all the mascots this again and again since he wanted everyone to know that he was now on the nice list. HAHAHA!! It was too funny. But we had a great time and everyone was so caring. Gavin had a really hard time and went from laughing and playing to crying and being really sad because he missed daddy. Daddy was out of town at the time and I sent him pictures. It was sad that Gavin was so distraught over missing daddy on a train ride but I understand since we are separated and things are crazy. We didn't get home until late and my kids were so TIRED! HAHA! They think they should stay up late, Not according to the train ride.
All of this brings us to this week!!! OMGoodness I actually caught up mostly. HAHA!!! If you read through all of this I am really impressed and grateful for you. Hugs to you all and I will update this next week with the rest of the year! YAY!!! I did it!!!
I will just post pictures with captions for the next year catching up and what not. Sorry I couldn't get this up sooner.
I will just post pictures with captions for the next year catching up and what not. Sorry I couldn't get this up sooner.
