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.