Category Archives: Travel

Belinda is all grown up!

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So she is now 18. Hard to believe! She’s an adult, which now means that I no longer have automatic access to her medical records. That’s going to be a hassle to get through, but I know we can. Belinda said that she does not want to be in charge of appointments and things, understandable, since she’s about to start college. She’s signed a medical power of attorney for me, and also a HIPAA release form. We got the power of attorney printed at the Mustang Library and two of the librarians signed as witnesses, which was super nice. I made a few copies of it but now I really need to get online and upload it to all her doctors and pharmacies and insurance and all that. Sounds less than fun!

I spent a lot of that same week following up on the bed delivery. The home health company wanted to bring it to our house to show us how to do it, and then we could take it to Alva. I did not want to do that since the reason we selected this home health company is because they said they would have no issue taking it to Alva and setting it up there.

On Monday, August 4, Belinda and I both had appointments with the internist in Tulsa. With everything we had to do that week, we opted to do virtual appointments which isn’t ideal but it was better than driving to Tulsa. Belinda talked to the doctor about her headaches, which the doctor thinks are not migraines but instead two different types of headaches. She recommended a medication I’d taken before.

On Tuesday, August 5, we had one last appointment scheduled with her sweet pediatrician, but then we got so busy we forgot and missed it! Belinda was sad about that but we really just saw her last month, and I told Belinda she could tag along next time Sarah goes and say goodbye then, and that helped. That’s what Lenora had to do too, with Bennett, because I didn’t even realize at that point that their birthday would be a hard cut off. Their pediatric dentist kept them through college so I thought that was the norm.

Wednesday was our birthday! She wanted to go get birthday freebies so I took her to Mustang and Yukon. She got something from Starbucks and Ulta, and she and I both goth something from Sephora. We lunched at Chili’s and I got a free dessert, but we took it home and shared it later that week. We were too full! That night she had a few friends over and we had cake and ice cream. It was a nice evening.

On Friday, August 8, Belinda went to see her new general doctor. This doctor has been my trusted health partner for years and years, and now all three kids go to her. She has always been wonderful to me and my family and I’m very glad Belinda is in her capable hands. We discussed the prescription from the internist and Dr. Manning said that the medication could cause memory issues, so she wouldn’t recommend Belinda start taking it right when she’s about to go to college. Instead, she told us about some supplements that she wanted Belinda to try first. So we ordered those and hopefully that will help without negative side effects. Both girls went to the therapist later, so we spent about three hours at the clinic there. It was Sarah’s first time but Belinda has met with this therapist for several years. We convinced her to set up some zoom calls so she can continue with him, at least while she is starting out away from home for the first time. I’m hoping she keeps up after that, at least monthly or so, because he has been a great resource for both Lenora and Belinda. I know he truly cares about both of them.

On the evening of August 9, we all went and watched Sarah march with the high school band for the first time performing. She did so good and it was a lot of fun. The girls had snow cones and Bennett went down on the field so Sarah could teach him how to march and hold the clarinet. We got a lot of video and photos of that. Sarah really didn’t like band when she started band camp two weeks before but I think it’s starting to grow on her.

I kept texting home health and finally on Monday morning, they said they could meet us that day. We had to rush out of the house within 30 minutes and even then, we got there after they said they might get there, but they were there a little late too. We got permission for her to get into the dorms early and the guy, Ryan, was super nice. He got the bed all set up and we also took her refrigerator and microwave too. Her suitemate was there but she was in her room, and when Belinda finally knocked on the door to say hello, the suitemate had apparently left. Belinda and her suitemate each have their own private room and they share the outer area, which is the bathroom and a little entry area. We were surprised to see that they have Belinda in a handicap-accessible room, with grab bars and a permanent seat in the shower. Her disability doesn’t really require that, but I guess they didn’t have anyone who needed it more than her. Most girls in the dorm there have a roommate and then four suitemates, but for Belinda and her suitemate, it’s just the two of them. I hope they get along really well and become good friends!

Belinda had a work study interview at the college library at 2 p.m. that day, so we also went and did that. It was originally a zoom call but since we were in Alva she went in person. And later in the week they let her know she got the job! I’m really happy for her. My friends who worked at the library really seemed to enjoy it, and it was a great opportunity to study or take care of homework in the down time.

The girls got back to school haircuts on Wednesday, and now it’s Friday! Belinda wanted to finish moving in tomorrow and then I saw on facebook that there is a mandatory freshman orientation at 8:30 am tomorrow! We were planning to leave about 6 a.m. tomorrow, but now Belinda and I will leave at 5 a.m. and everyone else who is coming to help move can come later. She’ll be done with orientation about noon. She’ll also be able to turn in her FERPA form, so I can access her school records. I’m so glad I saw that post online! Belinda said she didn’t get an email about it. I’m wondering if it is because she already has 31 hours, because of her concurrent enrollment during her high school junior and senior year, but regardless, we know now. I think they would forgive her for missing but they also take a photo of the entire freshman class and I definitely want her in that picture!

She wants to come home again Saturday night, and then serve in the nursery at church before going back to Alva. She thought she would drive herself but I don’t want that. I want to go there and fuss over her before she stays there. So two Alva drives this weekend.

Oh, how I will miss her. She’s coming home weekends but I know it won’t be enough. It never is.

Well, I’m glad I got this updated. This blog has come in very handy when trying to remember facts and dates about Belinda’s medical history. Tomorrow we go to Alva.

Rerun

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Today I started reaching out concerning Belinda’s upcoming procedure in Washington. There’s no guarantee Humana Healthy Horizons will approve it, but I need to get my ducks in a row in case they do. So I contacted the National Organization of Rare Diseases, regarding Belinda’s Rare Pediatric GI Medical Assistance Program funding, requesting assistance with lodging and ground transportation while we are in Washington, and I contacted Mercy Medical Angels for assistance with the flights. I’m already tired of flying! Hard to believe since it took me so long to take that first flight but now I am super over it.

NORD funding is not guaranteed if they run out before the end of the year. I don’t know if there will be money there for her this time. And she will be 18 then, and I’m not sure how that will affect the pediatric part of the program, or the additional flight ticket for Mercy Medical Angels. But I know it will all work out.

I am so appreciative of organizations that help!

Thirty days of gratefulness – a hobby

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My stepdad died this evening. It’s still a shock, even though we knew it was coming. I wish I had spent more time with him the last few years. But I was doing the best I could. It’s been so hard. I am going to miss him terribly. He has been in our lives for a long time. I had my own dad for 21 years of my life. I had Jerry as a stepdad for 17.

The hobby I am grateful for today is traveling. I did not get to travel very much until Jerry came into my life. He was always willing to go anywhere and do anything. Without him I would not have taken the trips we took. I just didn’t have the confidence to travel like that, and Ben doesn’t really take the lead on things so if I didn’t do it, it wasn’t getting done. Then Mom mentioned that she wanted to see Washington, DC. And then they bought a van and drove there, with Ben and me and the three kids in the back. I planned a lot of it, and Jerry planned too, and we made it happen together. After that, we kept going. Sometimes Ben got to go, and sometimes he had to work, and me and the kids went with Mom and Jerry anyway. We went to Florida, to Miama and the Keys and to Disney World and Universal. We went to Carlsbad Cavern and Roswell and the White Sands. We went on a Caribbean cruise, to Mexico and Honduras. We went to Mount Rushmore and the Oklahoma Panhandle. Our next planned trip was going to be to California to see Hollywood and the redwoods, and then go north to visit his sister in Washington state. We even talked about continuing north into Canada, and to Alaska. He was always willing. I was trying to figure out the logistics for our family and then Covid happened. Jerry got bit by a tick and started going physically downhill fast. Mom started to develop dementia. Finally Jerry’s daughter had to move in with him and we brought Mom home with us. Mom didn’t take that too hard, as her memory was failing, but it was harder on Jerry. But I didn’t know what to do. I didn’t think I could care for him like I knew he needed. And Mom was trying to help him when he fell, and she couldn’t pick him up. I couldn’t either.

I will always love him and appreciate him for being a dad to me when I didn’t have one, and being a grandfather to my children, who never knew my dad. On Father’s Day, I gave him cards that said Dad. Officially, legally, he was my stepfather, but it didn’t feel that way. Not really. It was so much more. He was a wonderful husband to my Mom and if he hadn’t lost his physical strength, he would have taken care of her even with her dementia. He loved her so much, even after she couldn’t remember things.

I didn’t have the confidence I should have had when Jerry got sick. I took him to the hospital and to appointments but when his daughter came I just left it to her. I felt like she and her brother would do most of it and I felt awkward because I shouldn’t really have a say. And I felt stretched in so many directions. And I know it hurt Jerry’s feelings that I pulled back so much. I know he loved me, but I just didn’t know what the right thing to do was. I didn’t know how to have conversations with him when he couldn’t speak well. I didn’t know what to do when he needed help eating and drinking. Jerry was always so strong and in charge, and seeing his weakness felt so foreign. I know he didn’t like being like that, and having us see it. I also thought maybe he was upset with me for taking Mom away. I don’t know how I could have felt different. But now that’s over.

I am so thankful that he took us on those trips. He gave me confidence that I could also do such things, and after 2020 we have been to Orlando and to Galveston for dance competitions, and I was able to make those things happen. Maybe I would have been able to anyway, but not with the confidence he gave me.

So traveling is the hobby I’m going to go with today.

I had plans for tomorrow, but I’m not going to do them, I don’t think. I am going to stay home – I need to tell Mom because she was asleep when we got the call and I want to be here for her. I also just want to have a quiet day, and think about Jerry.

Ranger Preview

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Today we left the house at *gasp* 6 am and drove to Alva so Belinda could do Ranger Preview, which is a thing for high school seniors to find out more about NWOSU. It was a great time and she got to talk to professors from the psychology and English departments, which is what she plans to major and minor in. She also visited with some people from clubs and took a dorm tour. I really enjoyed seeing the updates on campus and I got to see one of my favorite professors at the history booth! He told Belinda that she sure had two crazy people for parents. It is neat to go to a small school and get to be remembered like that. History wasn’t either of our majors, and I only think I had two classes with this professor, but he remembered us. It was so good to see him!

We ate lunch in the school cafeteria and then got Taco Village to take back for the fam. Belinda did not have a problem swallowing all day! She still has not had to regurgitate food since the dilation procedure. She said that yesterday, she did start to choke on rice (it’s so sticky) but she got up and started to walk and it went down. I hope and pray everything keeps going well!

And we we got home, Bennett was feeling better after Mia took care of him and everything else around here all day. That made me feel very happy.

The editor at the local newspaper wants to write a story about Belinda, and I need to get the questions answered that he emailed me. One of his questions was if we had a gofundme or how people could help. I’d never done that before, but I asked our pastor if people could give to the church for Belinda, and then the church would give it to us. We did that before for a young man in our church who needed special surgery. But then tonight, I went ahead and made the gofundme. I wasn’t sure what to put down, but I thought about how much we have spent so far, and how much that may be in the future. After she turns 18, she won’t be eligible for the same assistance from the National Organization of Rare Diseases. Her benefits are on the pediatric level. And there’s not much help for Achalasia because it’s super rare. And with health insurance kind of in flux right now, it seems smart to try to get on top of that. Also, we need to determine how we are going to meet her needs in her dorm room. We might do a wedge under the mattress to elevate her head, but many of the other parents on the facebook group have gotten adjustable beds for their kids. I feel like that might be a better option for the dorm room, so she doesn’t slide down. It would be more comfortable for studying and reading too, since she’s not supposed to fully lie down anymore.

Anyway, the gofundme is kind of experimental at this point. We’ll see what we think and make adjustments as we go.

Back home!

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We are back home from Washington. Belinda is doing very well. We did go to Cheesecake Factory last night and we got burgers. She did not order a veggie burger but that’s the server apparently heard, but she enjoyed it anyway. We both ate about half and took the other half to go. She also got the cheesecake she wanted. We walked back to the hotel and read and watched election results for a while, and ate our leftovers. She did great eating both times.

The next morning we got up and packed. We took our things downstairs and checked out. The hotel stored our luggage in a locked room while we went out into the city again. We walked to the White House for our tour. It’s self-guided now and didn’t take very long. She didn’t want to read everything and I guess I really didn’t either. We went to the National Archives next, since the White House didn’t take much time. The walk was pretty long and it was also hotter outside than expected. We saw the Declaration of Independence, Bill of Rights, and the Constitution. We walked to Chinatown next, and ate at a place Aunt Nancy recommended, Wok and Roll. I liked my sesame chicken but her teriyaki chicken was fantastic. Soup was very good too. We wrapped up our leftovers and got an uber back to the hotel, where we got our luggage, and then continued to the airport.

We got to the airport three hours early but it was really quite a big three days, and we were ready to just sit for a while. We filled our water bottles and I read and used my computer. She used her phone and played on her switch. She ate her leftover food too, and everything still went great. She had priority boarding again and this time we sat in the front seat with the extra legroom. It was a drag not getting to stow our stuff under the seat, and having to put it in the overhead bin, but the legroom was super worth it. I had my leftovers on the way home.

Ben was waiting for us at the airport, and he carried some of our luggage. Belinda wanted something sweet so went drove through Starbucks and she had a refresher and a cake pop.

It has been so nice to see her not choking even once since the procedure. I am so thankful and I pray that it stays in good shape for a long, long time…like forever!

It is great to be back home.

Waiting

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Belinda is back in the operating room now. They said I should get to see her again in about an hour.

We took an Uber here and the guy was very nice, but quiet. That was fine with me because I like to be quiet too. Belinda and I pointed out things we saw on the way. When we got here, I didn’t understand how the elevators worked and an employee helped us but he seemed a little annoyed with me, sadly.

***My pager went off while I was writing this and the procedure went well and it’s already over!! She’s in recovery now and my pager will buzz one more time when I get to go to her.

Well, I wanted to recap what happened this morning so I’ll pick it up there.

I made a wrong turn upstairs and led Belinda through the cafeteria before we found the right direction, which was a shame since she couldn’t have anything to eat.

**My pager went off again and now I’m back with her in Recovery Bay 35. Maybe I’m not meant to recap the whole day. I’ll try to make things quicker.

So the lady was real nice when we got checked in. We got the pager then. It went off when it was time for us to go to registration. We got our bracelets from a coolo guy and then he said that the computer showed there was a $500 facility fee. I said that we were told we had met our deductible and out-of-pocket max and he said he didn’t know why it was on there so not to worry about it. We will see what that leads to.

They had a hard time putting in the IV again. The lady that everyone said was the absolute best tried and failed twice, and it took a long time and there was a lot of blood. So then they decided they needed an ultrasound to get it.

Dr. Kane and Dr. Petrosyan came by to visit about the procedure. It was great seeing them in person again. I am so thankful for their work. Belinda talked about her college plans and Dr. Petrosyan told her she could accomplish anything. He came from Armenia in 1991 when he was 16 years old and didn’t know a word of English. And now he’s a surgeon.

After they left, a lady I have talked with through the facebook group came over with her daughter, who also has achalasia and is having an endoscopy today. They are from California. It was great getting to visit with them and Belinda and the other girl exchanged phone numbers. It is good for both of them to know someone who truly understands. While they were there, the ultrasound team came in and worked on Belinda and finally got the IV in.

The other family got called back to prep for surgery, and it was time for Belinda’s procedure. That team was nice and asked Belinda what music she wanted playing. She jokingly said Ariana Grande and that’s what they played as she was being wheeled out.

They have a screen on the wall in the waiting room so parents can follow for updates. Belinda was number 15603. I opened my phone and saw that Belinda’s ACT test results were ready, so I pulled out the laptop to check that and to update people on facebook and by text.

Here’s the results that Dr. Kane showed me after.

**Well, now she’s gotten herself discharged! She’s changing while I’m desperately trying to finish this. Quick once it started!

When I got back here she was awake and talking to the nurse. She had a small bottle of water, a cup of apple juice, and an orange popsicle. We hung out and talked and she looked at her phone and I typed. Now she’s sitting up and she said she’s lightheaded. She said she shook her head to get the hair out of her eyes and almost fell over.

No food restrictions now. We have found a Cheesecake Factory close to the hotel, and that’s what she wants. She says she needs a piece of s’mores cheesecake immediately. So I guess that’s our next plan. Get back to the hotel and either dump stuff off or rest and then do it. I’d rather go to the hotel restaurant but she’s apparently too good for that.

Anyway, she just opened the curtain cause she’s ready to get out of here. But the nurse caught her because she’s supposed to leave in a wheelchair. So we’ll wait for that and then I guess I’ll call the uber and we will roll out!

Back in DC

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Belinda and I are at the hotel in DC for the night. We are staying at Washington Plaza Hotel, just six blocks from the White House. The cost of the room was paid for the National Organization of Rare Diseases, which is a great blessing!

Ben took to us to the airport this morning and we got through TSA, then Belinda asked for Starbucks. I warned her it would be expensive at the airport, but then I went ahead and let her. She got the smallest sized chai latte, so it wasn’t that bad.

We were sitting at the gate when there was an annoucement that someoone had left their bag somewhere and it was with security. Belinda and I exchanged a look at that poor person’s plight. Then we noticed she didn’t have her bag! Turns out I thought she had taken it with her to Starbucks, and I came and followed her after a few minutes and left it there. But everything was in it safe and and sound and the security people smiled and thanked us for getting it. I’m glad we didn’t lose it!

Southwest gave us priority boarding again because of Belinda’s medical condition. I wasn’t sure we should do that since she’s not in a wheelchair or anything, but it was the best way to ensure we would be seated together, and I need to be there instead of a stranger in case she has choking issues. There was also a service dog on the plane that was a very good dog.

The flight was direct this time, and we didn’t have anyone in our row with us. That was very nice. I wrote my articles for the Tuttle Times and read. She looked out the window, read, and napped. It was a good flight. The pilot apologized for the turbulence early in the flight, when we were getting around the storms, but I really didn’t notice anything out of the ordinary. The flight attendants were super nice too. Just a good experience all around.

Belinda had apple juice and pretzels on the plane and she ate slowly and didn’t choke. She also had a few strawberries that I’d brought from home.

We got an uber to the hotel and the driver was very nice too. He was listening to hip hop and a Will Smith song came on while we were getting to the hotel and I took that as a good sign, since he is one of my all-time artist faves. Belinda didn’t recognize the song and said she only recognizes music by Ariana Grande.

Hotel is swanky and a doorman brought our luggage in and opened the door for us. Concierge is super sweet and helpful. She is going to print our White House passes for me, since I didn’t realize they needed to be printed until today. I finished up my stories and sent them while Belinda ate more strawberries. She did choke once, but went to the bathroom and it was okay.

Belinda wanted fettucine for dinner, and we found a little place about eight blocks away and walked there while the sun was setting. The place was pretty empty but the people were great and the food was too. It reminded us of the Chinese restaurant in Tuttle somehow. Belinda ate slow and didn’t choke. We also got cannoli to take back to the room which I’m looking forward to. We saw interesting architecture as we walked back and a church next door to the hotel had a group of people singing outside. We also saw a dog that looked like Bond from SpyXFamily.

(The church is the National City Christian Church. Wikipedia says it was built in 1930 and is the national church and cathedral of the Christian Church (Disciples of Christ).

We passed the Metropolitan African Methodist Episcopal Church on our walk, and I told Belinda how the Obamas had attended some services there. We also walked by the Saint Germain Foundation, and I informed Belinda I understood that was a cult. She’s getting so much learning here.

It’s only 7 pm but it feels later. I’m not sure what we’re going to do tomorrow. I didn’t expect the procedure to be at 5 pm so I didn’t plan anything for the morning. She said she might like to see the Library of Congress. She can only have clear liquids after midnight. I bought a box of the kind of broth she likes. There’s a fridge in here but not a microwave, so I don’t know what to do about that. Maybe ask downstairs? I do have a thermos.

Now she’s on her computer, looking to see if she has anything else due for her college classes. She’s got the inflatable wedge blown up so she can sleep (she can’t safely lie down flat anymore after her original surgery). This is the first time attempting to sleep on the inflatable wedge. I’m not optimistic but we couldn’t really bring anything better without a lot of hassle.

There were two complimentary bottles of water in the room when we got here, and she already finished hers and now she’s taken mine. Oh well, I still have water from the airport in Oklahoma City so I’m doing okay.

We’re looking forward to tomorrow. This procedure is basically a balloon dilation to open up the lower esophagus due to too much scar tissue forming after the POEM procedure surgery. This one is outpatient, so that’s great! I hope this helps for a long, long time.

Final instructions

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I got a call this evening from Children’s National. Her procedure is scheduled for 5 pm on Tuesday, and we have to be at the surgery department of the hospital, on the second floor, at 3 pm. She can eat and drink normally the day before, but will on a clear liquid diet after midnight, and nothing red or reddish. So she can have water, broth, gatorade (no reds), gelatin and popsicles (also no reds) and that’s about it. Belinda wasn’t thrilled to hear that. I wish the procedure was scheduled earlier in the day, so she wouldn’t have to wait all day to eat. But, it will gives us time to sightsee on Wednesday morning if we like, and I think she’ll enjoy that. I’ll have to make sure to pack a thermos for carrying around the broth that day. Our time is one hour earlier, so she will be having her procedure at 4 pm in central time.

She has a shirt that says Achalasia on it and it has a rating of one star. Under that it says something like “Very bad, do not recommend.” She says she’s going to wear it all day Tuesday, so she can roll into the hospital with it on.

There’s another family from the facebook group for parents of kids with achalasia that will be at the hospital that day as well. We’re going to attempt a meetup. It’s all loose right now, which is good. I’d like to meet them and let Belinda meet another person with achalasia but I also want to make sure I can focus on her.

Today we received the itemized statement from OU Children’s that shows everything we paid to them for this whole thing. The total they charged for Belinda’s care was $74K. Insurance handled most of that, but we paid our share too. And all of that was for just figuring out the diagnosis. I sent the first page of the statement to NORD. They said they might be able to reimburse us for part of what we paid. We’ll see what happens.

We need to pack. Instead I cleaned house the last two days. Things look a lot nicer here now, making me feel better about leaving it for a few days.

Back home

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We are back home! Our flight got in right on time and Ben was at the airport to bring us back to Tuttle. When we got home, we had a fantastic meal brought by a lady in our church and I blended some lasagna up really good for Belinda. She really enjoyed it.

She drank a quart and a half of water to wash everything down really well like the doctor told her too. This from a girl who took more than an hour to get a cup of water down less than a week ago! We are very happy.

The incline I bought for her bed arrived while we are gone, and we’ll see how she does with that. Last night she slumped off her stack of pillows. We may have to prop the head of her bed up with bricks if she doesn’t stay on it. An adjustable bed is the best option, but I’m not even sure if we could get that up the stairs. So we’ll have to start with the wedge and see how it goes.

We are glad to be home. Thank you to everyone for the prayers and good wishes while we were away!

DC

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Today we ventured out to see a little of Washington DC. Belinda was very small when we went before, and so this was all new for her.

We took the Metro from where we are in Brookland to the National Mall, and walked from there to the Washington Monument to get tickets to go up later in the day. We have been told walking was good for her at this stage, and we did quite a bit of it today. After getting the tickets (we were the second to last group before they ran out for the day) we made our way to the Hart Senate Office Building to one of our senators’ offices. I had contacted the staff there a couple of weeks ago, and even though the senator was not there, Belinda got to ask his interns some questions, and then we went to tour the US Capitol. Belinda started hurting early into the tour, so after we saw the Senate chambers, we cut it short and went to the dining room, where we found mashed potatoes and ice cream for her, along with a Snapple Apple.

She felt a bit better, so we went to Union Station where she bought a Washington DC sweatshirt, and we stopped at Walgreens there and got some liquid Tylenol. We were supposed to get that as a prescription when we left the hospital, but for some reason we did not. So I was happy to get that taken care of. She took a dose there and then we came back to the Ronald McDonald House so she could nap.

We returned to sightseeing in the afternoon, going to the top of the Washington Monument. This time we walked less, taking the Metro bus as well as the light rail. She enjoyed looking out of the windows at the city and said that even though she didn’t always like history, she did like learning about the monument. We found a little restaurant that had mashed potatoes, but they ended up being too chunky for her to enjoy. But they did have a chicken noodle soup, and the chef was gracious enough to blend it for her. We had that meal in a covered dining area on the sidewalk, and the weather was nice and cool.

We walked to a grocery store after that and picked up some instant potatoes and jarred gravy so I can make some comfort food for her easily tonight. She also got a yogurt and some chocolates. We walked back to the train station and took the red line back to Brookland. The metro bus driver was on a break, so we walked the last few blocks back to the House and now we are relaxing.

She just placed the little cup of instant potatoes next to me, as a not-so-subtle hint that she is ready for me to make them!

Our flight back to OKC is tomorrow afternoon!