Trip to Pennsylvania - I'll Hug You Forever!

 Hey everyone,

I'm going through the pictures on my phone to see what to write about when I realized I never shared our trip to Pennsylvania last month! Then by the time I uploaded the photos to the laptop, it was time for me and Beth to head to the movies. (Our local theater [built in the 1920s] was showing Polar Express for free.) By the time we got home I couldn't keep my eyes open. Fell asleep in my recliner at 8:00, went to bed at 10 and slept until 9am! I have been so tired lately.

Got up this morning and our power went out. Chuck, Beth and I played Mexican Train and I put together some gifts for the custodians. Now the power is back on and I'm able to finish where I left off yesterday. 😊 

November 12, Chuck, Beth and I took a red-eye to Pennsylvania and spent about four days with Diana and Peter. I spent most of that time on my hands and knees, doing everything Adelaide did, going everywhere she went... we had so much fun!

Chuck and Beth not long after we got to their house

One day Diana took us to a cute shopping area. It was like a little Christmas village, but they were still putting up decorations. We watched the fish in the pond, played in the gazebo, then we went to Cracker Barrel for lunch. We don't have them around here so we try to go whenever we can. Have you ever eaten at Cracker Barrel? 

More pictures of me and Adelaide playing around the house -

 Now these - I was actually able to get INTO this house - those are my knees in the second picture!

I'm glad we got those few days together. Oh, and it was nice to see Diana and Peter too. 😁

This was at Peter's parent's house.

Even got Poppy in the picture!

Our last day there we went out for lunch, then had to say our goodbyes.

We're out on the sidewalk when I gave Diana a hug. Then I hugged Adelaide. Then I said, "Group hug!" and hugged them both. Adelaide started laughing, held up her little pointer finger and said, "One more time." She laughed as we hugged again. "One more time!" And again. And again.

I'll hug you forever Adelaide!

Scan Results

We got the results and we're thankful there's no tumor or mass of any kind. But they still don't know why her stomach is so hard.

We need to go in for another blood draw because the doctor wants to test her thyroid again.

The scan did show Beth has Steatotic liver disease meaning she has excess fat in her liver. The doctor checked her enzymes and so far her liver looks fine. She recommended Beth continue to eat a healthy diet and exercise when possible.

Chuck takes a gummy vitamin supplement and we started giving some to Beth. He gets three bottles at a time with 90 in  each and noticed they were going through them awfully fast. So last week he hid them. While we were both gone one day Beth went on the hunt and found them and took a bunch downstairs. She went through an entire bottle in a week! We think she's eating them like candy.  

Chuck and I buy small cheese snacks  - little rectangles of cheese to take in our lunches. Beth stopped buying cheese for herself because she's not supposed to eat it anymore but when I was in her room recently I saw 6 cheese wrappers on her floor. She takes our cheese and eats it anyway and just takes lactaid every time. Now I wonder how much the lactaid is affecting her.

So I've decided Beth won't be going to the grocery store anymore. I will do her shopping for her. When I asked her for her list last week she texted me:

'Oreo Double Stuf Gluten free'

'Fruit Snacks 22' (Meaning a box of 22 packages)

'Ice Cream / Cake'

'Lemonda Drink' (Lemonade)

She sent this to me on Friday night. I was still recovering from our Thanksgiving outreach and was spending the day in my recliner. She had come upstairs and went down the hallway. I could hear her mumbling, then she deliberately stomped past me and went back downstairs. Then she sent me this:

'i did sent my shopping list ready why you are not going to the store to get it' 'ice cream and fruit snack of gummy bears and lemonade and sausage too'

So I went down and talked with her. That's when I told her she won't be grocery shopping anymore. The list I had made of all the food she CAN eat was on the floor so I put it back on her bulletin board. I hope we can get this figured out so she CAN go grocery shopping again some day!

Doctors now realize that many people with Ds don't have the leptin hormone that tells them when they're full. And there's now a medication they can take that helps with that. I plan to talk to her doctor about that when we see her later this month.  

Thanksgiving and CT Scan

Our thanksgiving outreach was wonderful and even made our local news. You can see it here: Thanksgiving Dinner

We served more than 1200 guests and 500 volunteers. This was our 30th year and some of us were talking about how much it's changed over the years. When we started it we got a lot of first responders, and even doctors who work at our local hospital would come by on their lunch break. A lot of people who had to work and couldn't go home would come by to eat. Now, it's mainly immigrants, people who are new to the area or even to the country. Many don't speak English. We also had a lot from the deaf community. We have a small deaf ministry and they invited a lot of their friends. It was a blessing to serve so many.

All ready for the guests to arrive

Beth had her CT scan on Wednesday. We watched a few videos on what to expect and I wasn't sure who was more nervous, me or her! It's hard to describe the feeling you get when you're nervous for something that's happening to your child. I actually felt the knot in my stomach - and I wasn't even having the procedure! They got her on the table and I was able to hold her hand while they got her situated in the machine. Then the doctor and I left the room while they did the scans.

When they put the dye contrast in her arm she had to keep it raised while they did the next set of scans. The entire procedure took about 25 minutes.

After we helped her sit back up she took a deep breath and just sat there for a minute. Then she said she was ready to go, she stood up and we left. That was it. She did really good, she always does.

How was your Thanksgiving? (We're having our family Thanksgiving on Sunday.) 

Do you get nervous when someone you love is having a procedure?

What a Difference a Few Short Weeks Make

 On November 3 I posted about things being quiet. Today I came home in tears.

I don't know what it is about this season at work but I get so overwhelmed. I came home and got on my knees. I asked the Lord if He was trying to teach me to be one of those people who don't get bothered by a lot of things coming at them all at once. Because I don't seem to be learning that lesson. I still get so overwhelmed.

I cried for a while, then Chuck came home and he listened while I told him everything that went on today. Then I made some tea, ate some chocolate 😌 and began to feel a little better. Whew, tomorrow is a brand new day! I'm thankful the Lord's mercies are new every morning!

Our big Thanksgiving Outreach is just three days away. We're praying for a lot of people to experience His presence for the very first time, or in a new way.

We'll have our family Thanksgiving on Sunday afternoon. Sharaya and Ally will come over, Sharaya will make her amazing mashed potatoes, and we'll try to video chat with Diana and Peter. Then I'm hoping we can go look at lights or go see a movie. I really want to do some Christmasy things this year. Now that the girls are grown, we just don't do them like we used to.

Beth's CT scan is on Wednesday. She'll still be able to go bowling - they're having a big Thanksgiving party that day - then instead of  her coming home on the bus, I'll leave work early to go pick her up. Thankfully this doctor is very close to where she bowls. Maybe we'll even do a little Christmas shopping!

I put out a few Christmas decorations on Friday. I've wanted to decorate for a while and finally thought, 'Why not?' I just love to sit and look at the lights.

On Saturday Chuck and I ran errands - he needed new shoes, filled his car up with gas, we did a little shopping (we have 4 birthdays in December!) ... then we stopped for coffee and watched the ferry come in.

I'm going to close this and sit in my recliner for a while before I head off to bed. I pray you have a blessed week and a very happy Thanksgiving! 

     

We Had a Bomb Cyclone Blow Through

 Hi,

A few posts ago I talked about how I showed up for the Harvest Party to find the lead custodian had to leave early. Well, turns out he's been under a lot of stress at home, in ministry, and then at work so he ended up stepping down from that position and I'm back to being Supervisor again. This is the busiest time for us so to try to hire and train someone now wouldn't work. I'm glad I took those couple months to rest while I had the chance! We'll look for new candidates after the first of the year.

Last night we made it through a Bomb Cyclone. I remember having one or two others in the years we've lived in Seattle but they are rare. And I think this one was the worst.

 (From Fox News)

On the right you can see Washington, Oregon and Northern California

They said we had 75 MPH wind gusts, that's strong for this area. And we had so many downed trees. Our power went out around 8:30 last night and I hear a very sad, "Nooooo!" from downstairs. Beth and I got out the flashlights and she came upstairs to hang out with me. She doesn't like to be downstairs when the power's out.

About that time Chuck texted me. He was working - driving a city bus - when he came across a downed tree across the road. The police were already there so he stopped and called dispatch. Then he hears a large crack and a tree had fallen and hit the back of his bus! Thankfully he was in a 60 footer so he wasn't injured at all. The police came over and took pictures and then he waited until a metro supervisor arrived. He ended up not getting home until after midnight.

Right after our power went out I noticed the pilot light in our gas fireplace was still on (sometimes it goes out when the power does) so I turned it on real quick. Then I remembered I bought two battery operated sconces for the living room so I turned those on. Beth and I stayed nice and cozy all evening. Our power came back on around 1:00AM, not long after Chuck got home. That's when we all went to bed.

Beth sound asleep in my recliner

I know not everyone faired as well as we did. I was thanking the Lord for how good we had it. I've been watching the Weather Channel and it looks like the rest of the country is going through some storms. I pray you all stay safe!

Some Test Results

My dad, his dad, my BIL and friends from high school were all in the military. It's a life I can only imagine and am so humbly grateful for their decision to enlist to protect me, my family and our nation. I want to take this opportunity to thank all veterans for their service.

                                    ~~~~~~~~~~~~~~~~~~~~~~

And thank all of you for your comments on my last post. Your kindness brought me to tears. Thank you so much for your concern for Beth and our whole family. You all are amazing. 

The doctor found Beth's thyroid levels were way off. I checked her meds and turns out she stopped taking them. The bottle was still full, she hadn't taken any in about a month.

I'm a little embarrassed to admit that. I need to do better at monitoring her meds. We're now asking her every day, "Did you take your thyroid medicine?" She calls it her 'blue pill.'

We're still not sure what's making her stomach hard though so we're going to keep the appointment for the CT scan. That's scheduled for the day before Thanksgiving. 

We're going out of town for a few days this week. I'll keep you posted if I hear anything new. Again, thank you for your concern! I love you all!   

Beth's Health

 A lot of children born with Down Syndrome have heart defects. Some have holes in their heart, or a valve isn't working correctly and they undergo surgery at a very young age. Even as young as a few months. I can only imagine how hard it would be to watch your baby go through something like that.

Beth was born with a good heart and didn't need surgery. She grew up strong and active. She never did have the balance to ride a two wheeler, but she rode her bike with training wheels until they broke. And she was probably in middle school by that time. She jumped on our trampoline, she loved to swim, and we would often go hiking. 

After she graduated from high school she joined All Aboard and was going to exercise classes, art classes, bowling... she kept busy. But over the years she has slowed down (like we all do) and doesn't move as much. And I've noticed her stomach getting bigger. Even though she's lost 20 pounds over the last year, her stomach seems more swollen than fat, and it's hard as a rock. I don't know about you but the older I get the more... uh... flabby mine gets. But hers is different. 

It was Sharaya and Diana that had the idea she might be lactose intolerant. I hadn't even thought about that. So for the last six months or so we've cut out dairy from her diet. And now we're working on gluten-free foods. But her stomach is still hard.

So yesterday I took her to the doctor. And the first thing they did was weigh her. She's been consistently losing weight for the last year so I was shocked to see she's gained 15 pounds since August. The doctor said it could be anything from a tumor, to an issue with her kidneys or maybe she just needs a stool softener. So she's looking to everything.

She ordered blood work to check her kidneys, thyroid and a host of other things. She got a urine sample, and she's also looking into the different meds and supplements Beth takes. We're going to get a CT scan as well but right now they're booked solid. I'll call next week to set up the appointment.

We appreciate your prayers.

An Odd Season

Hello! Things have been... odd around here lately. For me anyway.

Since I stopped being Custodial Supervisor I've got time on my hands, but haven't wanted to do a-n-y-t-h-i-n-g. I keep up with the dishes and laundry and... but I'm spending a lot of time just watching Christmas movies. I'm trying to give myself a little slack, knowing this quiet season won't last forever. :)

(Internet Photo)

I felt prompted by the Holy Spirit to go to the Harvest Party at church. Not to announce it or ask the new Lead Custodian E, if he needed me, I was just to show up. As I walked in the door our boss was there. He took me aside and said E was struggling with some personal things and would be going home early. So I ended up being Supervisor that night. I love it when the Lord goes before us and solves an issue before we even know there is one. He is such a good God.

This is photo of just one of our classrooms for the Harvest Party. This was the maze room for those 6 and under!

Almost every day Beth comes home and sits in her recliner. While we were at lunch today she said she was going to take a nap in it when we got home. :)

Please vote. We are privileged to live in a country where we get to choose our leaders. I'm praying a lot for this upcoming election. Especially for peace in our cities, no matter who is elected. I also pray the Lord would put in office whomever He needs at this time in history. Oh Lord we need you! 

Lots of Familiar Faces, Matching Shirts, and "Definitely the Frosted Glass!"

The girls had come up with a design for our Buddy Walk shirts and on Saturday night after Sharaya's party we all put on our shirts and surprised Beth with hers. Then in the morning we all headed to The Buddy Walk at the zoo.

The Buddy Walk was established in 1995 and raises money for programs for people who have Down Syndrome. There's hundreds of walks throughout the U.S. and even in a few other countries. They had vendors, and Star Wars characters and lots of things to see and do.

We walked around for a while looking at the animals. You automatically got into the zoo free when you registered for the Buddy Walk. 

Beth's back began to hurt so Chuck got her a wheelchair. She'd walk for a while, then ride. Then walk. I think we all ended up pushing her at one time or another.

Then the actual walk started (we followed a path they had set up through the zoo.) 

At the end, every participant with Down Syndrome got a medal. They're all so excited, it's such a happy event! A local high school football team held directional signs and interacted with the families.

After the walk we all headed to Red Robin, Beth's favorite restaurant. Of course we all sang to her. That's the best part!

Then home for cake and presents. Sharaya and Diana made the cake the day before, while I was at the Holiday Market. One of Beth's best friends was able to stop by for a few minutes.

Cheryl is her 'Bestie'

While Sharaya took Ally home we let the cake settle for a while, then we headed off to the Rock Box. It's a karaoke bar! Beth has sang karaoke for more than 10 years. We had our own private 10x12ft room and the staff member came in to show us how it all worked, how to choose the songs on the ipad, how to turn on the strobe lights... then he says, "You guys are in a unique room because you're on the end near the street. This button here turns on the sound so everyone outside can hear you. And this button turns off the frosted glass, see? So you can sing and dance if you want and everyone walking by can watch you." 

Hahahaha! No.

We had so much fun though! On the drive downtown, not knowing what to expect, we talked about singing a few songs then we'd leave, but we ended up spending the entire two hours singing and laughing! Didn't matter who had the microphones, we would all sing. It was really fun!

Diana flew home early the next morning and that was the official end of the celebrations. We had such a fun weekend. I think it took us all a few days to recover!