Christmas came early

 Life is better at our house.  After about a week of Trey seeing the new pediatric neurologist he started to feel better.  We were cautiously optomistic and a little giddy thinking we might be toward the end of never ending migraines. Little by little the headache started to improve.  I told Trey I was so excited to finally see improvement that I felt like it was Christmas. It was the best day ever when Trey told me his headache was fnally at a "0" which it usually hovered around a 7-8.  Finally, we are so thankful to Phoenix Children's Neurology department for figuring this illness out.

We teased Trey because he started to feel better during Fall break.  How convenient he was sick the entire 1st quarter of school, then as soon as break starts the headaches are gone.  We are just happy he is healthy and he went back to school this this week.  

Trey's 2nd "First day of School" since 1st quarter was a bust.

Trey was happy to be up and about, and getting back to normal. He had a warm welcome back at school. So many kids wondered what happened to him, and said there were a lot of jokes about "who is absent today...Trey is again."  unfortuanly it only lasted two days.  We had the flu running through our house, so Trey went for two days then the flu caught up with him.  Luckily we knew it would be short.

Anniversary Time

 This week the headaches continue, I realized it was time to fine a new doctor when Trey clearly is not getting better and she told me there was nothing else she could do.  I switched Trey over to Phoenix Children's hospital, which is supposed to be better.

We saw Dr. Eric Hastriter, he spent about an hour with Trey and thinks the problem is now a "Low-Pressure Headache"  he thinks when they did the spinal tap, it didn't seal up correctly and more fluid leaked out.  Then the Drs. continued to treat him with medication to reduce the fluid.  He believes that Trey has swung too far in the wrong direction, and he is way overmedicated.  I was starting to think that myself.  Every time we would visit the Dr. they would either double the dose or add another med or both.  

The new doctor cringed a few times as explained the past treatments.  He took Trey has gone from taking about 10 pills a day to one.  I really hope this works.  Trey is so sick of being sick, tired of laying down, and misses his friends, and just enjoying life in general.

Curtis went to the appointment with us.  He snapped this picture as we walked in. Trey is about to pass me up in height.

It was a difficult day for Trey as he had another appointment with the pediatric ophthalmologist.  This appointment had been set up for a few weeks.  I took the soonest the new neurologist appointment I could get.  Both appointments were a bit of a drive.  The Neurologist was 45 minutes in Avondale, and the Eye Dr. should have been 25 minutes to Phoenix, but I had the wrong address and drove all the way to the Glendale office.  Trey was beaten up, exhausted, and felt awful by the time we were finished.

We went to the ophthalmologist because the Neurologist wanted to make sure his Optical Nerve was ok.

They did a test to check his prereferral vision.

Trey's eye in the upper left

Trey was so glad to get home.

It was our 27th Anniversary this week.  That is just wierd to me that we were 23 when we got married and we have been married longer than that.  We just went to lunch at BLD(Breakfast, Lunch, Dinner).  We are going to Las Vegas this upcoming week for EXPcon, so we will maybe do something fun there.  

I took this picture from our wedding day and had it put on canvas like a painting.

I bought gas yesterday.  Prices are creeping back up again.  It was $5.09/ gallon luckily with my Fry's card I had a  $.40 discount/gallon.  Makes me sick.

8th Grade Dropout

 More of the same...  Headaches for Trey.  I took him to see his neurologist this week.  She said there really isn't anything else she can do for him.  We don't know why his headaches are not improving. His headaches are stuck at a 3-4 on his 1-10 scale.  Still too severe for him to sit up and do any school work.  Last Sunday at church they had a special fast for Trey, and another kid Jack Lueck who lives right behind us. Jack has had some serious ear infections and has also been very ill.  They have put tubes in his ears twice, he was still very sick they thought he had pneumonia or Strep.  He hasn't even shown up for 8th grade this year, Trey at least made it about 8 days.  The ward was having a fast for Jack so Doctors could figure out his problem, they added Trey to the fast so he could just get better.  This last week they discovered that Jack has an autoimmune disease called Wegener's disease.  It sounds like he will likely have to deal with this his entire life, but at least they can manage it and get him well enough to function.  

The school told us that when Trey visited his Dr. again this week he would need her to fill out another Chronic illness form.  She filled it out and said Trey could return on 9/19/22.  I was hoping he could actually return that day for at least part-time, but not certain he could even do that.  I submitted it to the school and the next day the counselor called me.  She said she had a meeting with the principal and some of Trey's teachers.  They know Trey is a good student, but are also concerned about him coming back so late in the quarter.  They suggested he withdraw for this quarter, which ends 9/30/22.  Even if he did come back it would be extremely difficult for him to catch up on all the missed school work.  Right now Trey pretty much has straight F's which has also been a concern for all of us.  If he withdraws the F's and the quarter goes away like it didn't happen.  We all agreed this was probably best.  We are going to have Trey watch some videos and do some online work to get him caught up with some of the math and science concepts so he isn't completely lost when he returns.  In the meantime, we really need these headaches to improve.

Dax and Derek and watching the neighbor's dogs this week.  We don't really know these neighbors other than waving and saying hello when we see each other outside.  They asked if they could walk their two dogs twice a day, feed them and give them their meds for a few days.  It has kept them busy on top of work and school. They paid them $100 each.  Very generous.  I have ended up going several times because one of them was working or busy at walk time.  They are very nice well behaved dogs, but much bigger than our dog, Oreo.  It is too much for one person to walk both of them, and clean up after them on the walk.  Much easier with two people.

This week Curtis went on a quick trip to Ohio for some EXP recruiting.  He had a layover in Chicago, hit Kentucky, Indiana then Ohio, and back again in 36 hrs.  He normally likes to spread these trips out, but his traveling buddy, Fred, doesn't like to be gone from their family for more than one night.

A legitimate Chicago Deep Dish.

I bought Gas this week, it was $3.95/ gallon.  I can't believe that I would ever think gas at almost $4/gallon is a good price.

Florida Oregon Coast

 Trey's headaches continue.  I'm frustrated, Trey is frustrated and the school is frustrated.  Last week I was having a really rough week dealing with Trey and life in general.  I lay in my bed on Tuesday night I just wanted to get away from everyone and everything. I don't normally feel this way, but I was just dealing with a lot of problems that week.

 The next morning, I got a text from my friend Tiffany that said "This is random and the last minute...would you like to go to the Oregon Coast next weekend with me and Cindi and stay at her beach house?"  I could hardly believe it.  I was so down and frustrated the night before then I get this random text.  It turns out that Cindi had planned to go with a bunch of girls from the Young Single Adult ward that she is an advisor over.  Those plans all fell apart, nobody could go and one of the girls was Tiffany's daughter, Kate.  They normally have the house rented out as a vacation home, but they had already reserved the weekend and it was still available so they were trying to salvage the trip the best they could.  They were trying to think who they could invite, that didn't have other obligations like young children, work, etc.  Tiffany said my name kept coming to her mind.  I felt so blessed, loved, and cared for that they thought of me.  It ended up being Cindi Nelson, Tiffany, her daughter Kate, and myself.  It was a great trip.  I have been to Oregon a few times but he has been about 25+ years and I had never been to the Oregon coast.  It was my type of beach vacation.  It was mostly overcast, we didn't get in the water (it was too cold).  We still spent several hours on the beach hunting for treasures.  It was so peaceful and I loved not getting wet, sandy, and sunburned.

Cindi grew up in Portland and she loves the Coast. She loves to search for Agates.  I had heard Cindi talk about searching for agates but I didn't really know what they were.  It is a clear volcanic rock that gets washed up from the Ocean.  Cindi watches the tide and she goes out at low tide some beaches she searches for agates and on different beaches she searches for sand dollars.  Cindi literally has thousands of agates that she had found.  She polishes them and keeps them in bowls and jars all over her Oregon house.  Apparently, she keeps more, her favorites, at her Chandler house. 

My meager collection of Agates

One of Cindi's many bowls of agates.  
I loved running my hands through the polished stones.

Kate, Cindi, Tiffany, and Me

Beautiful Sunset.

We stayed near Tillamook, OR  which is where Tillamook cheese and ice cream are made.  We ate ice cream daily. 

Cindi also likes to hunt for Sand dollars.  Tiffany and I told her we thought sand dollars were a myth because neither one of us had actually seen a real sand dollar on the beach. 

My sand dollar finds of two days of searching

One of Cindi's sand dollar collections.  She said one day she found 180. She is the Queen of beach treasures

We ate a lot of seafood/Fish and Chips.

Sand Dollars before they are bleached white

We all enjoyed collecting rocks and treasures on the beach.  Kate decided she was going to make animals out of the rocks.  We all searched for the perfect rocks for her creations.

Kate makes her rock animals

Driftwood fort on the beach.  This beach had a ton of driftwood
It is amazing what the tide brings in

a lighthouse

Octopus Tree

Cindi and Tiffany walking along the beach

This beach was so huge a deep when the tide was low

A cave/tunnel we visited at Lost Boys Beach



We were at a souvenir shop, where everyone else was buying Oregon T-shirts etc.  I wasn't that interested, but then we decided we all needed a matching T-shirt.  I went along with the T-shirt, but I knew I would not wear the sweatpants they were buying, so I bought some pants similar in color so it looked close enough to match.  Funny thing Cindi, Tiffany, and Kate probably spent 30+ minutes going through this pile of sweat pants, finding the right size, and deciding if it was what the "Oregon coast/Rockaway Beach souvenir they wanted.  Kate and Cindi even tried on a T-shirt and the sweatpant together.  They thoroughly went through the sweatpants to get the perfect pair, until they didn't.  They had been wearing them for an entire day,   when Cindi looked down and noticed these Oregon Sweat pants said "FLORIDA"  what??? No wonder they were on clearance.  We had a good laugh, the pants I opted for said "Oregon Coast"  another reason I'm happy I passed on those pants.

It was a great trip.  I would love to visit the Oregon Coast again.  It was very peaceful walking alone (even though I had friends near me) on the beach looking for rocks and treasures.  I feel like I was able to clear my head.

More Headaches

 Trey's headaches continue on.  It seems to be the problem he had about a year ago where his body makes too much spinal fluid, putting pressure on his head and causing a migraine.  A nonstop never-ending migraine.  The only relief is when he is laying down, and sometimes that is not enough.

The meds (Acetozolomide ) the Doctor put him on, were not working.  Even after visiting the neurologist and she doubled them and added one (Depakote) Trey still found no relief. We were hoping the meds would solve the problem so we wouldn't have to get another Spinal Tap/Lumbar puncture.  The Dr. agreed it was time.  After taking the meds for 24 hrs he should start to feel better.  They told us to just go to the ER for a lumbar puncture.  If we waited for the hospital to schedule one it would be a few weeks out.  We have to get this kid feeling better. He has already missed about a month of school and we are only six weeks in.

On Wednesday we took him in for a spinal tap.  The ER Spinal Tap didn't go as smoothly as the scheduled one at the hospital last year.  The good thing about the ER was they were much faster and more efficient get Trey back to do the Spinal Tap rather than the scheduled one.  Which should have been the other way around.  There was so much waiting and waiting for hours even though the prior one was scheduled.  

Trey with his ET finger/heart rate monitor

Trey on Versed, he was feeling good.

recovery

The main drawback of the ER was they didn't put him under general anesthesia.  I didn't let Trey eat because I wanted his body to be ready for the anesthesia.  Well, that didn't happen.  They gave him a dose of Versed which definitely made him feel good/different but I don't think it was enough.  He did say some pretty funny stuff while he was on the drug. He talked about having one brain cell and eating a red lego.  Something about how now he finally understands calculus.  He was pretty loopy, I have some video He was already very anxious and terrified just to get the IV needle, he was not prepared to get a long needle stabbed into his spine.  I left the room, but it sounds like it was kind of traumatic.  Two big guys had to hold him down, while the Doctor did the procedure.  They had to give me more Versed because he was so anxious.  The doctor said he took his spinal pressure down from 31 to 16.  Under 20 is normal so that was a significant decrease.

We were hoping this would do the trick and he would immediately start to feel better.  Not so much.  Trey didn't notice much change the next few days, then by Saturday, he said he felt worse than ever.  Obviously, nothing was working. I called the neurologist Saturday evening.  She said Trey needed to go back to the ER.  Likely the spinal tap didn't heal up correctly and he was likely still leaking fluid.  He would need to go back for a blood patch, which is kind of the reverse of a spinal tap.  They take blood from his arm, then plug the hole with it where they did the original puncture.  It sounds more risky and painful.  Trey was not excited about going back.  I convinced him to go so he could start feeling better sooner.

We arrived at the ER at about 6:15 we went back pretty soon but then we waited and waited.  I decided there is no urgency at the emergency until you are actively dying. After several hours of waiting around, nurses and PAs talking to Dr. they decided they wanted to avoid the blood patch if possible and they wanted to try all other routes.  Drs wanted him to try some more meds and admit him to the hospital and observe him through the night.  Then they would do the blood patch in the morning. They loaded Trey up on more meds, which I was doubtful would help and so was the PA.  At about 10:00 they gave trey 300 mg of caffeine.  I didn't think bedtime was the best time to load Trey up with that much caffeine, but whatever.  He had no place else to go.  He took the meds more and more waiting. At about 2:00 a.m. they finally got him admitted and moved us to his room.  What do you know Trey said his headache was much better.  He walked in saying his headache was an 8 on a 10 scale and now it was about a 2-3.  Amazing, I seriously didn't think that would work.  Trey was up most the night, he said he finally felt sleepy about 3:00 a.m.  It didn't help that we heard some kid down the hall wailing all night.

Morning came along with a parade of Drs and nurses coming through. Ultimately we decided to scrap the blood patch for now.  Trey had finally turned a corner and was feeling better.  I guess my grandma was always right when she would say "drink a coke, you will feel better". Trey was excited to avoid more needles and happy to go home.

We arrived home about 11:15 Sunday morning.  Trey was excited to tell his brothers that he was given the equivalent of a "Bang Energy Drink" to cure the headache.  He went to bed and slept the rest of the day.  He needs another jolt of caffeine, but I'm afraid it will keep him up all night again.

This week I went to listen to a Holocaust survivor speak about his experience.  They wanted all the youth in the ward to attend, so I got to go be a driver.  It was very interesting, but also awful.  I think hearing about the holocaust is important, but also one of the most awful depressing things that ever happened.  I don't like watching movies or even going to Holocaust museums. This man was 94 years old and lived in Poland at the time.  He was 15 when his family was taken by Germans.  He was transferred to about 4 different camps and a miracle he and his sister survived.  The only ones from their family of 7 to survive.  I have decided everything you hear about the holocaust is 100% awful just different people and different experiences.  I'm glad he had a successful life after the war, he has lived in the US for several years and had a successful career.  He feels it is important to tell his story so people remember what happened.  I don't know how he can get up and tell those stories over and over.  They were awful.

This week was my friend Jillian's birthday.  She is a big Harry Potter fan, I made this matchbox car, look like the Wesley car from Harry potter and gave her this Harry Potter "garden" she loved it.

Headaches, news on the street.

 The last few weeks have been noneventful.  Dax and Derek were not feeling well.  Derek had to miss about 3 days of work at his new job.  Although I don't think he loves it.  Curtis has not been feeling well either.  It seems Trey's migraines are back.  Yuck.  He has missed about 15/25 days of school.  Not off to a good start in eighth grade.  It was about a 2-week wait to get him to the Neurologist.  I made that appointment but then I also took him to see the pediatrician just to get the ball rolling and get papers signed for the school so they would be more understanding and back off with the homework.  Unfortunately, the meds we got from him still don't seem to be helping.  He just lays around bored most days.  The neurologist said if this doesn't work we may have to do another spinal tap. Ughh!

Dax started up again at ASU on Thursday.  There was a lot of agony and discussion on what to do about his future.  He decided to switch his major to something related to 3D digital art.  We think it is time.  He wasn't progressing in Astro Physics, Calc 4 was killing him four times over.  He really is passionate about this 3D art and it is what he spends most of his free time doing.  He didn't think ASU had a program, and low and behold now they do.  He considered switching to a school, the University of Advanced Technology in Tempe.  That school specializes in computer graphic stuff.  He decided to stick it out with ASU, it will be quicker, cheaper and a more generalized degree to give him a more broad background.  It is called "Digital Culture" something or other he will learn about programming and other aspects of computer design and digital design.  I hope he will be much happier with this new path.  He may attend UAT for a master's degree once he finishes at ASU.  We think that is a good choice.

The news on the street is our neighborhood got a new mailbox.  I know this is lame news, but I hated that mailbox.   For one it didn't have outgoing mail.  The post office always said if we had outgoing mail, just leave it in our individual box and they will pick it up.  That never worked.  We always had to drive to a mailbox.  Second, it was getting old and the keys were broken.  If there was an extra large package the post office left in the package box, the keys would be left in your mailbox and they were pathetic keys.  

About a month ago one half of the mailbox broke. The main door broke off and mail couldn't be delivered.  It has been broken for several weeks, people had to go to the post office to pick up their mail.  Fortunately, that wasn't us, until this week.  Now our side of the mailbox broke.  My neighbors have been keeping me up on this and finally, we have a new mailbox with outgoing mailboxes.  HOORAY.  Now we just need to get to retreive our mail.  Hopefully, that will happen this week.

Broken mailbox, with a missing door on the left and far right, and another door that won't close in the center.

TADA!  Finally a nice new mailbox with outgoing mail and doors that close.

These photos are compliments of my neighbors.  They obviously cared more than I did.

The inevitable happened this week.  After all these years of living in the desert, I finally got my first scorpion sting.  I picked up a washcloth and I felt something sharp, then it started to hurt and throb.  It got me right on my middle finger on my right hand.  It definitely made it difficult to get much done on Thursday, anytime I tried to use that hand it started to hurt and my entire finger and arm were numb.  This happened Thursday and it is still a bit numb 3 days later.  It was a smaller one, which they say is worse.  I got the better of it,  I killed it.

Another Funeral and a new job

 Rudy Melendez passed away on July 22nd.  Rudy was the husband of Monica, Curtis' stepsister.  He was a really nice guy.  Rudy was always very healthy and active.  A few weeks ago we heard he had COVID, pneumonia, and Leukemia.  What??  Leukemia.  It was just the perfect storm his body shut down and he passed away.  We took a quick trip to San Jose for the funeral and to see Curtis' family.  They all showed up.

It was a nice memorial, he lived a great life. We were ready to leave by the time it was all over.  It was nice to see the family, but they can be overwhelming.  We changed our plane ticket and went home early Sunday morning rather than Sunday evening.

Derek has a new job.  He was hired as a checker at Fry's grocery store.  .  I thought he wanted to work at BestBuy doing Geek Squad, I'm not sure why he didn't apply to BestBuy. We will see how this goes.  I'm just happy he has a job and is being productive.