Wednesday, April 8, 2020

Update from stay at home orders.

               
Well the year has started just as crazy or crazier than the year before and that was before Covid 19 hit the area. Since my last update Ariel has had several doctors appointments including an MRI and CT scan. We went to see her Physical Medicine & Rehabilitation specialist. We adore him, he always calls Ariel his little princess or little mermaid. This never ending pain in her back was just getting to be too much. She also started developing these strange lumps in it. That particular day we were going to go to the doctors office and then to the hockey game with a friend. We went to the appointment and Ariel seemed fine. We discussed physical therapy and an MRI after that we went and parked my van at the stadium and walked over to The Ram Restaurant to eat. After being there for about five minutes Ariel started having massive Myoclonic jerks and then went into a Generalized Tonic Clonic in the restaurant. Thankfully our friend was pretty calm about it and stayed with Ariel while I ran to the stadium to get the van. All of the wait staff and the manager were very nice and accommodating.

Ariel was so upset that her seizures had ruined yet another event. As it is she's not been able to go to many events at all this past year either due to seizures or the CRPS causing her too much pain. The Seattle Thunderbirds were signing autographs at the store so we decided to go so she could get some autographs from the team. She wanted them to sign her purple princess hat, which they got a kick out of.She started hurting a lot on the way there,but she was still happy to get the autographs.

This month we also celebrated her daddy's birthday and we did a day out to make up for her missing the hockey game. I told her she had to stay close to home for a while until we figured out what's  going on with her back. So we ate lunch at the tea house and played games at Ocean 5.
The MRI turned out to be somewhat of a nightmare. Ariel is claustrophobic and has a lot of seizures.I was hoping they would sedate her for it, but they apparently don't do that. They gave her some meds instead that would supposedly make her sleep.I asked them repeatedly if they would work considering she's been on benzo's since she was 12. The first mess was there was an accident and we had to take back roads all the way to the clinic and barely made it there in time. Then she ended up taking both of the meds to make her sleepy and they did zilch for her. She was so upset. Thankfully we were all able to talk her through getting it done. It made me really upset that once again I wasn't listened to.
A well deserved shake after what she went through with the MRI.

On Feb 1st we went to our annual zoo banquet. The Theme was backyard barbecue. It was so much fun they had all sorts of crafts and games and artificial trees and a fake bonfire, but great barbecue and even a S'mores making station. The guys and I had so much fun playing with the giant Jenga set. We ended up having a lot of onlookers, because our tower was the highest and it seemed the game went on and on before it finally tumbled.
The zoo even did a really nice write up about us and our pumpkin carving skills.
I also was able to take Ariel out for another outing and bought some fairy things to decorate her room.
 We also attended parents weekend for the T-birds and several games,before they closed all sporting events.


In between this Daniel started playing for a new hockey team. He had just finished Physical therapy and was so excited to be back. Unfortunately right after this is when The Covid 19 hit and the rink had to shut down. 
 
In between doctors appointments and events I was gathering supplies as I had listened to man who had labs in China who said prepare. I started looking for masks way back at the beginning of January and they were hard to come by then, so I knew something was different.Also storeable food was being bought up. So while the govt was saying no need to stock up no need for masks they were buying things up behind the scenes.I've often heard  "Do what they do not what they say."
 I was really hoping the guy was mistaken and at the least I would just have extra groceries. Unfortunately that wasn't the case.
We celebrated Valentine's Day with our usual heart shaped pizza and gifts for everyone.
 A promised outing for Ariel since I wasn't sure how many more there would be.
A few days after Valentine's Day Ariel had such severe pain I had to take her to the E.R. She had also developed this massive bruising in her back. We sat there for over two hours in the waiting room with her crying in pain while they were taking everyone else back. I was furious first off ,because the triage nurses dismissive attitude and because she kept acting like we were there for a stomach bug. She didn't even look at her back. Secondly everyone else in the waiting room were laughing and joking and eating chips. I finally told them take her name off I'm taking her somewhere else.Which I did. They were quite concerned when they saw her back and immediately drew labs and gave her a shot of Dilauden and then she went into a Generalized Tonic Clonic they also ended up giving her a CT scan.The MRI had only shown edema.This showed Ecchymosis bruising,but can often come from other places. Which just confirmed the CRPS is now in her back,since that's how it started in her arm.
A few days later she was feeling better and we were able to use her coupon to go eat and we went to the movies.

During the times I took Ariel out the guys went out and did things with their dad. I also was able to give my scrapbook buddy Keltie his book. I was so glad I was able to before everything was shut down.
 
On March 11th we celebrated my birthday.I had a nice dinner and cake from my family, but I think anyone who's had a birthday during this pandemic seriously deserves a do-over. I didn't get to use any of my birthday freebies or go anywhere it was a real bummer, although my family made it nice for me.
Since my birthday most of our time has been spent prepping.When we go out we are masked and gloved up and have our Lysol and Clorox wipes and pretty much go at the crack of dawn.We have too many immune compromised people here.We are also supplementing like crazy.After much research Zinc is one of the main supplements you want to take along with Vitamin C and D3.We take several others as well.
This is what grocery shopping is like now and this was before the store opened.My state of Washington was the first to get hit with this.

Wanting some sense of normalcy I decided to put my Easter decor up. I love the feel of spring and we are finally getting some sunny days.

Our son also came home from the military. His contract was up and he's kind of between a rock and a hard place since everything is closed. Stay home orders are until May 4th thus far. I just hope the government doesn't try and use this crisis to over reach, but as the beautiful hymn says:

My hope is built on nothing less
Than Jesus' blood and righteousness
I dare not trust the sweetest frame
But wholly lean on Jesus' Name
Oh Christ the solid Rock I stand
All other ground is sinking sand
All other ground is sinking sand
When darkness seems to hide His face
I rest on His unchanging grace
In every high and stormy gale
My anchor holds within the veil
Oh Christ the solid Rock I stand
All other ground is sinking sand
All other ground is sinking sand

His oath, His covenant, His blood
Support me in the whelming flood
When all around my soul gives way
He then is all my Hope and Stay
Oh Christ the solid Rock I stand
All other ground is sinking sand
All other ground is sinking sand
When He shall come with trumpet sound
Oh may I then in Him be found
Dressed in His righteousness alone
Faultless to stand before the throne







We are trusting in the Lord to watch over and keep us, but we are also doing our part to keep safe.Please pray for the kids as all the clinics are closed except for emergencies, which means Ariel gets no treatment for her CRPS right now and the kids have had several bad seizure days. Ariel had clustered all day one day. I pulled out every rescue med I have and thankfully she finally came out of it.The hospital is not an option, unless it's the most dire emergency.
We will be doing church at home online with our church on Easter morning and actually have been for the past several weeks.