Thursday, May 9, 2019

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.

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