Thursday, May 9, 2019

Last Post for 2017!! I am all caught up!!!

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 wee k 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.

Half Way There!!

The End of Summer!!!

July came and there was no sign of Nikole.  Monday morning I helped Rhett called the Social Security office to set up an appointment that way he can apply for SSI.  Nikole was finally here!!  I was happy to see her and I hope she was happy to see us and be home.  Wednesday after the 4th of July Nikole, Rhett and I went down to the the West Office Building and the Church Office Building to meet the people there to see where he would like to serve his mission.  He decided to serve in the West Office Building and at home on the Virtual Records Operation Center.  The next day I took Nikole to urology for an appointment.  She was not happy about that, and we also found out that he had a bladder infection. She was put on medication and told that they would like to run more test later this month.  I took her and Rhett to the DMV for a eye exam and for Nikole to see if she can get her permit.  The next day I took Dylan to scout camp.  It was day camp and he had a blast even though it was dusty and he didn't like that, but everything else besides losing one hearing aid was great!  Since it was up a canyon I had no cell service so as soon as we left the canyon and jumped on the freeway, I instantly starting getting messages and voicemail's.  Apparently Nikole was sick and throwing up all day.  So I called the doctor as I was headed home to get her an appointment and the soonest that I could get her in was 4:20pm.  When I arrived home Nikole was laying there looking really sick and of course Rhett was sitting there really worried, Gavin was not very fazed.  I talked to Nikole while she was laying there, thankfully not vomiting.  She had emptied her stomach earlier when I was at scout camp with Dylan.  When we got to the doctor she just laid there.  The doctor was stumped so they drew labs to see what was going on with her.  Of course there was infection but we were not sure where the infection was coming from.  I let them know that we had just been to urology and that she has a bladder infection that she is taking antibiotics for.  The decided to give her a shot of antibiotics and put her in more than what she was already taking.  Sadly I missed my friends surprise party the next day since Nikole was sick, but I am grateful for Nikole and what she brings to our family so it was not hard to be with her.  The doctor called me Saturday to check on Nikole since we were at the doctor's office until after 6 pm, I told him that nothing had changed very much.  The doctor guessed that she had a kidney infection.  By Monday the next week she was doing better thankfully.She was still on heavy duty antibiotics, but at least she was not vomiting all over and sick as can be.  I am grateful that she was doing better since she was leaving for Trek on Wednesday morning.  She was able to make sure that she had everything in her bucket and all her camp gear ready by Tuesday night, since we needed to drop it off at 6 pm Tuesday night.  Wednesday morning she was leaving and had to be at the church to leave at 6:30 am.  Do they realize they are taking teenagers?  Teenagers do not wake up that early on their own unless it is because of bribery.  The same morning she was leaving for Trek Rhett had a driving test at the DMV in order to get his licence.  Thankfully I could go with Nikole because daddy was able to take Rhett down to the DMV.  I was at the church waiting for the buses to leave before I left.  As soon as the buses left I soon left and started the drive home.  Little did I know that the bus that Nikole would get on broke down on the side of the rode right before the freeway.  I was the first person to come across the group and called for help.  Soon the stake people who were in a car pulled up behind the bus.  They had everyone get off the bus and then empty it since the bus people were sending a new bus and taking the broken bus to the shop to be fixed.  I hung out with them until the new bus came and they reloaded the new bus and drove away.  It has been a long summer without her around.  I did let the nurse who was on Trek know her medical problems that way I knew someone would know her just in case something happened.  The Saturday that Nikole came back from Trek we went to a 5k and then a car show for Angel's Hands Foundation.  The boys were able to pick out their favorite car to give a trophy to, and they all compromised and picked the yellow Camaro that looked just like bumble bee from the transformers.  As we were leaving we hurried to the stake building to pick up Nikole.  She was the last to be picked up.  I felt bad that we were not there when the buses came back.  I know I would have been there if I had been by myself, but because I had the boys and their daddy with me there was no way to get there when the buses arrived.  I was happy to see my baby girl.  While see was gone we found that my dad had a blood clot in his corardid artery.  The doctor said that he thinks that the artery is blocked possibly up to 95%, so he needs surgery to clear that clot out.  The Monday after Nikole got back my dad went in to have a stress test done on his heart to make sure he is healthy enough to have surgery, since he is now scheduled for surgery on the 25th of July.  This was really hard for my mom and I kept having to tell her that it will be ok and things will work out.  We were also having washing machine and dryer issues that we had someone out to try to fix them before my sister came out from New Jersey.   The day after my dad had his stress test and finding out that he was healthy enough to have surgery, Nikole went in for her follow up appointment to the sleep clinic and we reviewed the sleep study with the doctor.  She was going to have surgery in 2 weeks. HAHAHA!  Rhett and Nikole had a visit to the orthodontist the following day  to get the bands changed and to check retainers.  Rhett and Dylan had a follow up at Shriner's on Thursday.  They are just being monitored and watched there.  Friday Nikole had a VCUG for her bladder.  She did not like it at all, but we found out that there is no reflex into her kidneys!  YAY!!!  I was happy to know there is not that medical problem on top of everything else that I need to deal with.  
It was also Gavin's birthday!  I cannot believe that he is 12 years old!  We had a cake and ice cream and a little party with cousins since they are not normally here.  Gavin you are a light in our family and you shine so brightly.  The Lord knew I needed you, I love you dearly and I hope you will always know how much you mean to me.
My dad had his surgery on the 25th of July and he did really well. The doctor wanted to keep him over night to just make sure things are going good still even after a 24 hour period.  We did find out that his artery was blocked at least 95%!  Oh my goodness!  The blood clot did not get lose and they were able to get it all out.  If it had gotten loose he would have had a stroke or even died.  We are blessed that he is still here alive a kicking.  Gavin had a well child the Wednesday after his birthday. Of course he needed shots to get ready for 7th grade, but other than that he is really healthy psychically.  He does need to see someone for these moods and attention problems that we are running into.  The boys had a wheelchair appointment up at Shriner's after Gavin's well child visit.  Their chairs are well and we made sure they fixed the problems that we had with weight distribution.  Nikole had a follow up appointment with urology the following day.  We officially got the report that she does not have reflex in her bladder (even though I already knew that from looking at the screen and watching her test).  The following morning before our trip to Idaho, Rhett had an appointment for SSI.  We went down there and was there for at least 2 hours going over all medical history and income for Rhett which is la lot of paper work.  When we were finished we got home and loaded the car with all of our stuff and daddy's stuff and caravan-ed to Idaho.  If course it is about a 3 hour drive.  I was exhausted, so I didn't drive, daddy drove.  We had a great weekend with family and I am grateful that I have family who loves me. Sunday we drove back and it was back to crazy with appointments starting Monday.  Both Gavin and Nikole had an appointment with the psychologist.  We decided that Gavin is improving with the mood medication and neither one of them is wanting to take any other medication right now, and with that July was over!  With July ending our pediatrician also retired.  We are so sad to see him leave and have to find a new doctor for the kids.  Thankfully he recommended a doctor for us.  We will miss you Dr. Gardiner!!!

August first my dad had his first appointment after surgery with his doctor.  Just to let them know he was still alive and to just have a follow up.  Wednesday August 2nd Nikole was schedule to have surgery to get her tonsils out.  She was not happy.  So upset.  I took a picture of her where she looks just like her little cousin who I snapped a picture of her when she was really upset.  Surgery went well, even though afterwards she did try desatting (oxygen levels dropping) while she slept due to swelling.  While she was recovering daddy went and got Rhett for an eye appointment. After he was finished we were able to take Nikole home.  As she slept I found out that a friend's son got hit by a car in Hawaii.  He was in ICU and should have died.  As a parent who is always in the hospital with children I know how hard it is having kids in the hospital with other kids at home and knowing that you cannot do anything for your child, other than pray, talk, and hope that the Lord will give you the answers that you want.  When Nikole woke up from sleeping I let her know what had happened to this little boy who is barely younger than Gavin, her heart went out to him and she was determined to send him something to let him know that she was thinking of him.  I reached out to my friends to see how they were doing.  I know from a parent's perspective how gut wrenching trauma can be, and I know my friends have suffered before loosing their youngest son to whooping cough, they have also lost their foster children back to the birth mother.  My heart really goes out to them, that is a lot of stuff to go through.  It made me happy to know that my daughter was thinking of others even when she was hurting and sore, but she said that she has nothing to complain about since she knew that he was hurting much more than her.  Her tender heart, and her creative mind drew him a picture that she was hoping that he would really love since she loves art.  Friday we meaning Rhett, daddy and I met with a lawyer to go over things for a POLST (physician order for life sustaining treatment) since we had gotten help in May for advanced directives and a medical proxy.  We needed to add to it what did Rhett want before he started his mission.  All that paperwork back in May was still good, but just in case the mission people wanted to know what they are allowed to do and not do in an emergency.  Do you have any idea how hard it is explaining to a 18 year old what a DNR is?  It is no walk in the park, and later that day I just cried.  The next day we met with the stake president and Rhett was set apart as a missionary.  I cried since I was so happy that he could experience this for himself now.  Monday we had a new kitchen sink installed for my parents.  Their was was leaking and was making life a little difficult, but now has a new one.  The following day I took oxygen down to the Global Service Center where Rhett would be serving his mission from, and talked to them about where it is going to be and how to take care of it.  Thankfully we also had all the paperwork that they could get a copy of and the sweet couple that are his "supervisors" know medical stuff.  She was a nurse when she worked before her mission.  The next day was registration for Nikole in High School and Gavin in Jr High School.  I went to work after getting them into school.  The next day Gavin had a play date with his cousin. My parents had a MS thing Thursday and Friday afternoons.  I took my dad to his by-pap appointment that following Tuesday.  Gavin and Nikole were invited to go on a boating activity that afternoon on Tuesday.  School is going to start and I need to make sure I have everything not crazy. Wednesday Rhett had a Orthodontist appointment and while we were at the hospital we dropped off the form for the cardiologist to sign for the driver's license division.  I also went to a meeting about helping those that have neurological issues to see what can help without medication.  Of course my kids were not happy to hear what I found out.  Rhett had to see the doctor on Thursday since he was getting sick and having issues.  Dylan had an eye doctor appointment Friday, and of course his glasses prescription has changed, which means new glasses.  He has refused to get new frames and glasses for a year.  We will see what we can do.  I had an opportunity to go with my sister and mother to a women's retreat Friday afternoon through Saturday afternoon.  It was great to get away and have time just for me.  It was awesome spending time with my mom and my sister without any kids to stress over.  When we got back in town I took the kids down to OBT to see a play Saturday night.  We had a lot of fun and the play was so funny.  That was the last hurrah before school started.  School started Monday for everyone.  What a crazy day that was.  It was good to get into the swing of things with school for everyone. After making it through that first week of school we had the opportunity to go to Cowabunga Bay with Mascot Miracle Foundation.  We had a lot of fun playing in the water and enjoying the end of summer while we had a chance and before anyone is really sick.  The last Wednesday of the month Nikole finally met the allergist and had a scratch test to see what she is allergic to, and she was not happy to find out that she is allergic to most things.  Including cats, and she was so not happy to know that since she loves animals. With that summer was over and it was now fall as September appeared.

We started the month out with a cardiology visit for Dylan and Rhett.  Both of them are doing as good as expected and thankfully the doctor could not see the hypertension we all know they have which means their hypertension is not getting worse right now.  Rhett's hypertension was still really high and they talked about exercise that they wanted him to try and we told them what the physical therapist said that after 30 second his pressure increases. So they are still try to figure out how to get him moving to help his weight but knows that if he does too much his blood pressure will be too high which is very dangerous.  Thankfully they are following Dylan and watching him, and there has been not a lot of change yet. The day after the cardiologist Dylan had his IEP and it is a struggle as the school isn't excited to pay for an interpreter.  He still has an interpreter and he is still in a mainstream class, but he is struggling since he was so far behind to begin with.  Now we are working on forming letters, multiplication facts, and comprehension when reading.  The school wants him to be more proactive asking for his interpreter when kids do not understand him or when the teacher is teaching, they want him to be using the interpreter to understand what is going on.  I am frustrated since I know many Jr high kids that do not even ask for help or advocate for themselves.  He is only in 4th grade!  Geez this is only the second year that he has been in a "hearing" school.  Because he is hard of hearing he can hear somethings but trying to communicate back is still hard for him, and there have been many nights he is crying telling me that his mind is blank and he cannot think. :(  My poor baby!  Thursday both Rhett and Dylan had an appointment with the orthodontist and we are just watching to see how Dylan is doing knowing he cannot bite very well and of course Rhett is almost out of braces.  He is so excited!!  They are still waiting to see how Dylan's mouth will form and what will need to happen before they do anything.  Nikole had a follow up with the ENT a week later since she needed to have a follow up after surgery.  She has recovered well and everything is good.  The following day Rhett and Dylan had a pulmonary appointment, where they again had a PFT and of course it dropped again.  They really want to find out if Dylan's lung function is truly dropping or if it is a fluke and it was just that day so they want Rhett and Dylan to return in 3 months to find out if they are still dropping.  On those days seeing the results up front and in your face are really hard.  Yes I know they are not good and I know that Rhett is declining and now Dylan is but I never know how bad they really are until those doctor appointments.  I usually end up crying and having a moment because it is hard and it is hard often.  I usually do not show it since I have to keep going.  I also have so many responsibilities that I need to do that I cannot just cry for a while and take time for me.  I am learning to take more time for myself but it is still hard since then I feel like my responsibilities are burdening other people.  On the 19th I had a dentist appointment and the dentist was happy to see that I am taking care of my teeth even with braces.  He was also able to let me know what the orthodontist was trying to do to help my whole situation.  It was a good day.  Rhett was able to get his braces off his top teeth that Thursday.  He has been waiting for this for so long, I mean he has had them on since 4th grade, it has got to feel weird having them off after such a long time.  It was nice to see that he could get at least the top brackets off, even though he had to wait until later for the bottom brackets.  The 22nd was the first day of U-fit for the kids.  They were excited to start that again, and this semester Dylan had a volunteer that he knew.  It was Itzel from JMS, she is one year older than Rhett, and she brought along two interpreters.  It was great fun for everyone involved.  I also finally got a call from the Jr high where Gavin goes and they wanted to set up a 504 meeting.  We set it up for a meeting for the 26th in the afternoon.  We finally got accommodations for Gavin!!!!  It only took until he was at a different school and older, which it totally shouldn't have taken that long to get seeing as he was tested when he was 8 years old and needed accommodations since then.  The next day was parent teacher conferences for Nikole and it was also the first time that she was passing all her classes at mid term. Dylan had a dentist appointment the following day and his teeth look great!  YAY!!!  Something positive for the month.  My dad had an MRI the last Friday of September, it was a follow up to surgery and a regular follow up with the neurologist.  The blood clot is clear and there is no sign of any other blood clot!  YAY!!!  Good news.  As I have been working I have had both my arms fall asleep while I walked around a room but it took hours for them to be able to have feeling again.  So I also went to the doctor's Friday.  They could find nothing wrong and sent me for nerve conduction testing and a MRI.  They never found anything.  The last day of the month Nikole took her bunny to the vet, they couldn't find anything wrong with him, but he is having digesting problems.

Sorry No pictures right now I will get some up as soon as I can.

Almost Half Way There

We are almost half way to being caught up!! I can hardly stand it!!
At Ufit had fun showing that we have autism awareness.

Last day of Ufit until the fall.
We started out the month with DRAMA!  It was regional competition for Rhett, and it was so funny!! I am hoping that the video will go through and you all can see his final performance.  He went on to state but they didn't place.

The whole drama team that made it to finals during the state competition.
Participation award. All the kids were disappointed. The kids that won talked about death. Sad that comedy is behind.

It was time for Gavin's reevaluation for his neuropsychological testing.  All this time I was fighting Select Health since they wanted to mail medication (drugs) that Rhett is taking to our house.  If we were not going to be there they would leave it on the porch and take a picture.  HELLO!!!  I lived two blocks from a Jr high school, are they stupid???  I was so mad.  The only reason is because the medication is expensive and they just want the money for themselves.  As I am fighting the insurance I did a major upheaval on my family.  I am not going to go into that here.  
While packing all the kids decided to read books instead of packing boxes. #Facepalm
I made this fruit pizza while my cousins were visiting from out of town. It was devoured very quickly.

My cousins came to town to visit and they had fun playing with my kids.  After that of course it was time for Dylan's hearing aids to not work correctly, so he ended up at the audiologist and sent his hearing aids in to be fixed.  The very next day it was a dentist appointment to fix a cavity for Dylan. (That kids just couldn't win this week.)  

Nikole had something important come in the mail this month.
After getting her passport she went for a walk with a bunny and a little brother.
Two bunnies just decided to fight and this was the wounds on one of them. Poor bunny.
The next day was a care clinic for Rhett so they could help determine long term care for him. That following Saturday I had set up Rhett's senior pictures with an amazing woman who was building her portfolio and was also able to take family photos too!
I will have to upload them on the next blog post.
At the drivers license division. He is a great foot rest.

This is a first for her to be at the drivers license division.

The beautiful sky as we were leaving Churchill to do to the drivers license division.
Of course the next week we were back to going to appointments.  Rhett and Nikole had their orthodontist appointment that was followed by Rhett having an appointment with the allergy doctor.  We did find out that Rhett has a skin condition where if his skin gets irritated even a little he will break out into hives.  

 So itchy!!!

That was good to know since we were thinking he was allergic to all sorts of medication, the relief was that he could continue to take the medication and he is not having a reaction to them.  But like all good things he is allergic to at least one antibiotic so now we  avoid that one.  I was anxiously awaiting Friday since I was going to get the results from Nikole and Gavin's neuropsychological evaluation and reevaluation.  Found out that Nikole has ADHD (Attention Deficit Hyperactivity Disorder) inattentive and a steady level of depression. Meaning she feels blah most of the time and has ADD (Attention Deficit Disorder), but they do not call it that anymore.  Gavin has gotten worse from the ODD (Oppositional Defiant Disorder) he had, he went into DMDD (Disruptive Mood Dysregulation Disorder) and ADHD combined with anxiety connected to his brothers medical problems.  Now that I have more information I am able to help my kids more.  I knew there were things going on that was really affecting them educationally.  The next day Rhett and Dylan had an opportunity to participate in a 5k with a group of amazing people who are helping those with disabilities be able to do something like a 5k.  
They were so excited even though it was going to be early. HAHA!

Race day!!!

Look there they are! This is a once in a lifetime event, that they have never done before.

Look there is Rhett!! I got a video of Dylan not pictures.

He was so happy to have a medal.

We are privileged to carry on Antonio's legacy and race with you Victor!!
Walking with kpeasey is the nonprofit that took both the boys and put them in specialized chairs to run the race with. 
So not doing what he is suppose to be doing.
They had a great time and that was the first time this has ever happened for my kids. The last Saturday of April Nikole finally had a sleep study.  She was not excited about it at all. 
They told us to come back and see the doctor in 2 weeks to go over the results from the sleep study.

(So this is where all the pictures didn't save when I tried publishing this post and the pictures didn't save. I will be posting pictures as soon as I can possibly on a new blog, I will keep you posted. Get it posted? HAHA!)

The next week was May and I tried setting up a follow up for sleep study, but the earliest time they had available was July.  So I did set up an appointment in July but knew the doctor would call before then to go over the results. Dylan had an appointment on the first Wednesday of May, he was getting his hearing aids back from the shop since they we repaired.  He was excited to hear again. That first Saturday was another 5k but this one the boys did not participate, but we went and cheered people on as they ran.

During all this time I was packing and getting ready to move.  The following week was Gavin's Sage testing.  I made him take it since he was on k12 online school since Thanksgiving.  He would always just sit there or lay there and not do the work.  He ended up failing almost all three of his classes. He only had Science, English and Math.  I needed to know if he understood things before sending him on to 7th grade the next year.  A week after Gavin's testing Nikole had a doctor's appointment with the pediatrician right before going to the dentist with Gavin and Rhett.  She had caught a bug and was also getting migraines.  Thankfully all the kids didn't have any cavities.  The next day Rhett had an SSI appointment, but since we have not moved yet and I helped him apply in April he would not qualify until July, so he needs to apply in July after he is 18.  The same day of his SSI appointment he had JMS graduation.  We were running around like crazy to pull everything off that was needed for him to be able to attend the graduation ceremony in Ogden. Thankfully he was able to get his talk complete before the ceremony too, I am grateful for all the help he received at Skyline in order to get it finished in time.  He did a great job and we had he had a ton of support from family and friends seeing as we were not sure he would ever live long enough to be able to graduate high school.  The following day was moving day.  Thankfully I had moved so much already that it was a car full and the kids and myself.  It was a hard day, but I know that it was something that needed to happen.  The next day was a big yard sale meaning multi-family yard sale.  Near the end of the day we cleaned up and put things neatly away for another day of sales.  It was a huge transition that we went through.  There were lots of tears but lots of peace for myself.  This transition was really hard on the kids but it has been a better environment that was very much needed.  During this school year Nikole fund raised and asked for help from people she didn't even know usually on my Facebook account to raise the funds needed for her trip to the Dominican Republic this June.  She accomplished her goal and raised enough money to cover her trip completely!!  I was so proud of her hard work.  She was really excited to be able to have this experience.The following week my dad had another Neurology appointment that I was able to take him to and Rhett had a driving test seeing as he was trying to get his driver's licence at the time.  I had to take Rhett and Nikole to the doctor's office for another appointment the day after I took my dad to the doctor.  It was a little crazy making sure that everyone was picket up from school and that everyone did school since our move.  The only child that did not do any school work would be Gavin.  I had no place to set up a desktop computer just to take it down in 2 weeks.  On the same day that Rhett and Nikole went to the doctor Rhett graduated from Seminary.  I was so surprised since he had to catch up on seminary.  He also had home hospital seminary for the last two years of high school.  The day before Rhett was going to "graduate" from Skyline he had a Pulmonary appointment.  Of course his lung function has decreased again.  Like I knew it was going to, it is just hard to watch it again and again every time just drop.  I took a deep breath and continued to move on like normal.  The next day was the last day for Skyline to be in and of course it was graduation.  You know how much I had to work to get him to be able to attend and walk with Skyline?  It was so much work.  No he did not get a diploma he got a certificate, saying that he had completed high school.  He wanted to get his GED but I have not schedule a time for him to take it yet.  I know he took a practice test to see if he could take it and pass it or it will tell what area that he needs to work on and he could totally do it.  Such a smarty!!!  I was in tears watching him graduate since I thought for sure he would have died a long time ago. Then it was Memorial Day weekend was here and it was garage sale day Saturday and Monday.  I was grateful to get rid of so much stuff.  I purged my whole house and had so much stuff to get rid of, and thankfully between myself, parents, sister and friend we sold so much stuff and cleared out almost everything!  YAY!!!  It was relieving to get rid of so much stuff that we did not use or need.  The hardest thing that I got rid of were the baby blankets that I had since Rhett was a baby.  I just cried and cried over that, even now it brings up emotions that are hard and painful.  I really wanted to give the baby items and blankets to my grandkids if I ever have any.  Not like that would be any time soon, it is just that there are so many memories around those it hurt to not have tangible items with those memories.  The following Tuesday Dylan had a pulmonary appointment at 7 am so he was late for school.  His lung function dropped that day also.  Not a lot but enough to want him back in three months to retest him.  Rhett went with us to the appointment in order to tell the doctor what he has decided on a feeding tube that the pulmonologist is really pushing for since he is aspirating liquids.  He let the doctor know that he will let the Lord do what he will and continue to live life like he is already living.  The same afternoon Rhett had an orthodontist appointment.  Not like going to the same building 2-3 times in one day.  Nikole was grateful that she already got her braces off the previous month so that way she didn't need to be there.  The Last day of the May DI came and picked up all the items that we didn't sell over the weekend except for a bed, two cribs and the bunny cage that we didn't need anymore since the bunnies all have their own houses.  Near the end of this month I had a lawyer come out and talk to my parents about advance directives and such since I needed one for Rhett too. He gave us paperwork to fill out and send back to him.  It took him a few weeks to get everything typed up and back to us.

June started with a bang, Nikole needed a shot in order to travel to the Dominican Republic.  She was not happy to have that but she was getting excited for her trip.  On the 2nd of June my did had a eye doctor appointment and I took him there.  I ended up pushing him on his walker since he couldn't walk even with his walker.  His vision in his left eye was horrible!  The eye doctor wanted him to go see a specialist and set up and appointment on the 13th of June, and my mom told me that she would take him to the doctor.  The first Saturday of June I took my mom and Nikole out to the movies.  We needed a break!  We went and saw Wonder Woman, it was the first time in a long time that my mom got to experience time away from responsibilities.  I think it was much needed for myself and her, Nikole just wanted to be away from the boys. HAHA!  Monday was Nikole's appointment to see the ENT since her sleep study said that she had severe sleep apnea. She was not happy and was really grumpy, but I had to get her seen before all of her trips that she was set up to go on this summer.  The doctor said that her tonsils were huge and needed to come out.  She was even madder after hearing that, so we set up a date for surgery to get the tonsils out in August after all her traveling.  After that we took Rhett to physical therapy, it was sad to see him lose the oxygen saturation in 30 seconds or faster depending on what activity he is doing.  The therapist was horrified to say the least. She wanted to talk to me about life expectancy of him while she sent the kids out of the room.  We celebrated Rhett's birthday with him at the park the day before his birthday since Nikole was going to girls camp in the morning and would not be there.  We had cake and ice cream in great weather!  I cannot believe he is 18!!!  How did that happen???  The same day Rhett's drama teacher (Sarah) was having a going away party since she decided that she was going to figure out something else, and his senior year was her last year at the deaf school.  I think she stayed because of Rhett, I don't blame her, he is a ham.  She is amazing, and will truly be missed!!!  The next day was Rhett's official birthday and the same day Nikole left for girls camp.  Rhett had a occupational therapy session to see if he needed help in any way and he is doing good on his own.  Thankfully since school was out things settle down a little bit.  Since Nikole was gone daddy came and played the boys.  It was a good day.  Rhett had a well child the next day.  He is struggling but hanging in there.  The doctor said that he could continue with the same doctor for a long while even though he is 18.  Nikole came back from girls camp on Friday and needed to wash everything and play with the bunnies before jumping on a plan the next day for her trip to the Dominican Republic.  She was so excited, she doesn't remember flying on a plane when she was a toddler so this was a first for her.  I was anxious since she is my baby girl and was going far away and I know she was nervous and excited at the same time.  She flew into the Dominican Republic Monday morning since her flight out was really late at night.  My mom took my dad to the eye specialist that Tuesday while I got my boys ready for a road trip.  The eye specialist wanted my dad to see another specialist and have some test ran.  I ran out of the house Wednesday for interviews and then up to Shriner's hospital for the boys to be in the skeletal dysplasia clinic there.  Dylan has scoliosis and the doctors are going to watch him.  Again the doctors want to put a feeding tube in Rhett, and thankfully he has paperwork with advanced directives and his dad and I are his medical proxy people that can help him with things medically.  As soon as we were done at the hospital we ran home picked up Gavin and all the stuff that we packed up earlier and hit the road.  We ended up in Cedar City for the night. We met up with the rest of the young men at a movie theater in St. George. My boys saw a movie with the rest of the young men while I just chilled and took care of things that I needed to take care of.  After the movie was finished they did lunch and then decided where there next stop was going to be, and we ended up back in Cedar City at my aunt and uncle's house for the night since the place they were going to might not have power and Rhett's oxygen machine needs electricity.  We got back to my aunt and uncle's house and played games with them until late.  It was so good to spend time with them. Normally when Rhett and I have stayed there it is for Shakespeare and we are always running and never have time to just hang out and play games.  After we left their house we headed back towards Manti for the pageant since that is where we were going to meet everyone.  We got there really early and had ice cream and even chatted with Nikole on hangouts while we were waiting for everyone to get there.  We got a great parking spot as soon as we could and went and sat in seats waiting still for the pageant to start.  While we waited we played cards, it was a calming time and fun to do something different than electronics.  As soon as the pageant was over we headed home.  I was exhausted from the trip but it was nice to just spend time with the boys.  That Sunday was Rhett best friends farewell, both Rhett and McKay talked.  They were amazing, the spirit was really strong.  So proud of both of them.  The following Monday Rhett had another doctor appointment and if I remember correctly it was to discuss the blood coming from his ears.  Monday night Nikole was flying home from getting a layover in Boston for a day due to storms.  I was anxious and crying scared for my little girl.  But she got home safely at almost 1 am, I took her home and had her start laundry since my uncle and aunt wanted Nikole to go with them on a trip with my cousins who are the same age as Nikole at 7 am the same day she got back.  My uncle and aunt came with the girls picked up Nikole and took off.  I was tired thinking about her travels but she was having a great time and her brothers stepped it up and helped with the bunnies while she was gone.  The same day that Nikole left Rhett had decided to go through the temple and get his endowments out.  I am so proud of who he has become. He has come a long way and has fought many battles.  Rhett has a meeting the last Sunday of the month to discuss mission opportunities.  It was enlightening to learn about the program.  Since he has medical problems he will live at home and serve downtown and online.  Monday Gavin had a dentist appointment and a psychiatrist appointment.  He decided that he wanted to work on gaining control over his moods, since they were all over the place all the time.  Rhett had an orthodontist appointment on Tuesday and everything is looking good, there is a chance that he could get his braces off this year!!!  Wednesday I took Rhett and Dylan up to Shriner's to get their wheelchairs!!  They were so happy to finally have a little more freedom.  They were fun speeding around while we were there.  I also had a meeting with their medicaid worker and Rhett had a friend come visit on top of respite.  What a crazy day that was but so much fun!  Thursday was a fun day for the boys, we took them on the Harry Potter train ride with the Mascot Miracle Foundation (MMF).  The boys had such a good time and Gavin I noticed was doing so much better with his moods than before.  It was such a good day.  It was amazing to see Gavin maintain himself even with the animals "picking" on him and teasing him. As the month came to an end it was approaching the time that Nikole would go on Trek.  Of course things happen and she missed all the meetings for Trek, but they were great and would still allow her to go on Trek.

Monday, January 1, 2018

Let's Play Catch Up

We are going to take this 3 months at a time.

January is the start of a new year and goals that I have set for myself.  Rhett and Dylan had an appointment January (finally) to get them set up with obtaining wheelchairs for the boys.  This was only the beginning of a long process.  They recommended that Rhett get a follow up MRI to check on his shunt.  Rhett had an follow up appointment due to his coughing up blood.  Nikole also had an appointment so thankfully I was able to combine those appointments into one visit.  The very next day during the MRI that Shriner's ordered I had to interpret for Rhett since they told him to take out his hearing aids and then lay on the table.  I was able to watch the tech panic as Rhett's oxygen saturation dropped between his oxygen on his wheelchair and the oxygen on the wall in the MRI room since they couldn't bring the tank in the room because it was metal.  He  drops so fast that by the time that he was hooked up he was in the low 70's and the tech looked at me and asked me if he normally drops that quickly, of course I told him yes.

 Rhett's oxygen dropped very quickly after he was told to take himself off the tank since it could not go in the room with him.  He was gray by the time he got to the table.
The tech made sure Rhett was alright before hooking him up to get a MRI.

 Rhett was able to watch a movie while he had his MRI. Lucky boy!!

His shunt is still in place and doing it's job correctly.  YAY!!  Dylan's birthday was a lot of fun.  He is the cutest like stink.  He was so excited to turn 9. 

Loves puzzles and figuring them out.
He is a joy to have such a positive force in life. The Saturday after Dylan's birthday we were able to go to OBT (Off Broadway Theatre).  When there they asked if anyone was celebrating any birthday or anniversary.  Of course Dylan, Nikole and I got up and they sang to us. That was fun!  It was a first for me, I normally do not do that, but I wanted my kids to go up and they wouldn't without me. HAHAHA!!
Driving test!  Crazy scary to sit in the back seat of a driving test.
Nikole's birthday was the very next week and we were able to spend some of the evening at family counseling.  We brought cake and had that with the counselor, of course the kids loved that and were so happy to be able to share special times with other people.  They like to celebrate, the more people the better. 

15 years old!!  Happy Birthday Beautiful!!!

She was so little.

Thankfully Both Dylan and Rhett got covered by Medicaid special for children who is medically complex.  So all these appointments are not digging us deeper than we could possibly be able to ever pay.  
I was doing my real estate education while Gavin was doing his education.

February came with an appointment for Nikole to see the cardiologist.  She has two holes in her heart so she needs to be followed by the cardiologist every three years to make sure the holes are not enlarging or bothering the valves in her heart.  She got an all clear and they think one of the holes has closed and she doesn't have to see him for another three years. 
She is able to watch a movie while having a ECHO.

The lovely scenery from Churchill, day before the appointment.

After the appointment.

Turned this in right after the appointment.  He made it this far!

Gavin doing his school work.
The day after her appointment Dylan had his SEP Conference (Parent Teacher Conference), we found out that he is behind on writing to almost a first grade level, reading is low and math low. My heart hurts knowing that the deaf school didn't help him to be on grade level.  Dylan and Rhett both had an eye doctor appointment and of course Dylan's vision changed while Rhett's stayed the same. 

This is how we watch movies at the eye doctor.

 Doctor appointments galore. To bad that they just seem to keep happening. Thankful this was just a well child for Nikole and Dylan. Rhett was just being checked to make sure he was not coughing up blood anymore.
Hair cut!  She so needs it, since it is getting long and she isn't caring for it as well as I would like for her to take care of it. She wasn't excited, but we were excited to see grandma and aunt Kenya.

The length is really long. It needs to be shorter for the best results.

Oh my gosh there is natural curl!!! She was so shocked and she looks amazing!!!

 Doesn't she look great?? She is gorgeous!!  She just couldn't believe that she had curls.

The Stake had Primary children sing at Stake Conference and this was the group. Cute Dylan!
Since it is February it is also valentine's Day! I helped this little boy make some for all his friends at two different schools.

I have no idea why it rotated when I uploaded it.
On top of those appointments those boys were also seen by a doctor at Shriner's.  I was so happy since that is what helps them get wheelchairs, it was interesting to find out that Dylan has scoliosis and is going to be followed for that.  It is a little worse than Rhett's when Rhett's was found out when he was 4 years old.
Ordering the wheelchair.

On the way to the audiologist. How is it they get to sleep and I get to drive?

After that awesome appointment and getting more info on the boys and setting up a time to see the whole team of doctors in June for the skeletal dysplasia clinic we were luck enough to see the pulmonary doctor again, yay us!  The boys had their normal routine pulmonary function test and both of the boys dropped in their lung function. 

Get myself all dolled up before taking on the doctors, especially the pulmonologist. Since I know what is going to happen. I want to look good while bad stuff is going on.


And the interpreter is there waiting with us.
But I was expecting that so as to not cause such a shock and sadness.  Now we are going every 3 months for lung function tests.  After such not good news I was grateful for the month to be over with a send off from Utah Rare.

Dylan doing homework and bored.

No pictures of that little boy.

Glad to support Mark and the AHF knowing how much they mean to me and my family. It was not hard to be there to support a great cause and get more information about other people who have rare diseases and disorders.

​March​ was even crazier with appointments than I had thought until I looked at my calendar.  Rhett and Nikole had a orthodontist appointment the beginning of the month. 

Nikole is going to get her braces off next month!!!
Color of Retainer.

Picture on retainer.  She is so excited!!!
Rhett was in his last play at JMS and was so happy to be playing a king!
Thank you for all your support!!  We did amazing!!!
Nikole had a field trip to the zoo and would get extra credit if a parent went, so I went with a bunch of teens to the zoo in freezing weather.  I had to even follow a itinerary.

They were so noisy that the Gorilla hit the window and was really irritated.

Nikole was trying to get a picture of the baby and the mommy monkey. This is what we got so she wanted a picture of the picture. HAHA!

Ended with the Lions!
After that we had an opportunity to go the Utah Rare Symposium on Saturday.  We had lunch and listened and visited with other families affected by those children with special needs.  There were doctors, laboratory people and even other parents.  Dylan had a doctor appointment that following week.  I am sure he was stuffy and coming down with something.  Thankfully I am usually on top of things so that way I catch illnesses before they explode usually.  The following day Rhett saw the cardiologist. 

Finally Blue Sky!!!
His hypertension has gotten worse.  The increased his meds to 5 mg in the morning and 5 mg at night.  I think they are hoping to control the blood pressure.  Of course this is the same time that Rhett's hearing aids are acting up and he needs to go to the audiologist the next day. 
Went with the young women to see Mary Poppins. It was great!
Nikole was asked to work on a Utah Flat Stanley for a grandson to someone we know.

 A work in progress and a completed project. The flat Stanley was suppose to represent the history of Utah. She researched it and is really proud of the art that she completed.
Artist and her art.
During this time I was helping my mom get a bedroom ready for guests. there was a lot of sanding and painting that needed to be done before the end of the month.
There are my work clothes, go figure.

This was the first picture I took of the room.

Again work clothes

Still work to be done.

That following Friday I met with Sam Goldstien's office to do intake for Nikole to have neurological testing.  I was also able to get Gavin in for a reevaluation for his neurological testing.  After the intake for Nikole we were able to go to OBT and have fun as a family thanks to Angel's Hands Foundation.  The following week Nikole finally had an appointment in the sleep clinic.  YAY!! 
She had to take a break from the stresses of life and just rest with a bunny.

Room Complete!

Nikole was asked by my mother to paint a hummingbird feeder in her room. She took an old one that my parents had and painted what she thought was what it looked like. She does have some serious talent.

I have been trying for so long to get her in one of those.  The doctor said he wants her to have a sleep study and then to see him back three weeks after. I was able to set up her sleep study in April on a weekend.  Nikole had her neurological testing after I had intake on both of my kids the last week of March.  She was there all day testing and Dylan had a dentist appointment the same day and my dad had a neurology appointment. 

That was a crazy day.  This last week was rather intense and I had a lot on my mind since I was running all over the place to different appointments.  Rhett was able to get his hearing checked and hearing aids back from the audiologist this week the same day that Rhett and Nikole saw the orthodontist and Nikole saw the eye doctor. 

Holy cow!  That was a busy day and I thought it was never going to end.  On the last day of the month Rhett was able to see the pediatrician since he was not feeling that great.  I had an light bulb moment that week as I ran around like crazy.  I knew that in order to change the family structure I needed to change.  It was a sad, hard light bulb moment but it brought me peace and I was calm.

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