Edda is back at school! Yesterday was her first day back, but today she went without her NG tube. Jeremy’s at a work retreat about an hour away from the house – he’ll be back tomorrow afternoon. Fingers crossed we will be A-OK.
We’ve been working hard and spending money hard. Now that the college bills are done, we are trying to work on keeping the house from falling down. (I’m still giving Vince an allowance for food, but I’m eagerly waiting for his first meager grad school paycheck to clear so that I can stop giving him this $). This is new territory for both of us because the house was new build when we moved in and we paid zero attention to the house because we aren’t really very interested in it, but it is very much not new anymore. We are trying to make one of the secondary bedrooms with a fully accessible shower for Edda – she’s been showering all these years in the primary bathroom, which is fine, but we have little temporary ramps in there and it means that every single caregiver we’ve ever had has been in our bedroom all the time. So we’ve had contractors come and look – I have decor dreams like – I wanted penny tile in the floor bathroom, the contractor was like – there is a lot of grout for penny tiles, it’ll be hard to clean and maintain and they are prone to having problems. And then I thought- I don’t want penny tile in the bathroom. What I want is strong, easy to maintain and clean – which apparently means, no penny tile. (You know the old fashioned white hexagonal tile with the black hexagons that make a flower?, so lovely). The drainage around the house needs to be fixed as the driveway is tilted towards the house and the water is not effectively removed from where the driveway meets the house. Lots of texting with friends and family to ballpark what a reasonable estimate is and to get their invoices and all I can say it that it is EXPENSIVE.
I spent Monday morning volunteering for Main Street at their annual big fundraiser – a golf tournament. I felt pretty lousy from the vaccines, but I popped a few Motrin and headed out.
The golf event was held at Woodmont Country Club which is located less than 10 minutes from our house. I’ve never been to this country club, but I’ve driven by it weekly through my childhood and adulthood. It’s located on the Rockville Pike which is a huge road artery through town which has things like: the Container Store, REI, LL Bean, Hooters, the Party Store, etc. In the midst of all this, there is an enormous lawn (probably 2-3 football field size) that has a loooonngg driveway that disappears behind some trees.
I don’t know what happened because this is a $80,000 initiation fee country club, maybe I’m jaded by Instagram, but I wanted the Country Club to be fancier as I walked through the property. In what way, I can’t really put into words? Because, it was super fancy already. I just wanted a little photo filtering on what I was seeing.
This was a tremendous amount of work to coordinate – food, entertainment, prizes, 230 golfers (they sold out), volunteers, so much to put together and I was happy to volunteer and will continue to do so.
Have I ever been on a fancy golf course? I’m not quite sure. There are like 7 types of grass, the finest grass nearest the hole. I learned many things about golf and country clubs, the most interesting one is that for a couple, the CC membership is only under one name because if the couple splits, they do not want to be in any argument of who the owns the membership.
So, my general observations on Country Club life: it is nice and fun in a particular way. I could see how it would be fun. And I had fun – lots of jokes, lots of food, beautiful grounds, lovely company and conversation, etc. But man, it’s like a throwback to the 1950s. Almost all the golfers were white men, almost all the volunteers were white women and our role was basically to provide light and fun conversation. All the staff were people of color. Sooo…not my favorite scene. Cigars! Really?! Yes, there were cigars. I also was not dressed properly. I mean, I did not stick out, but I had obviously not understood “country club casual” which I was instructed to be – no denim. So I wore black flats, a black summer strappy cotton dress with a fitted bodice and large skirt and a white linen button down unbuttoned. But everyone else wore sneakers, shorts, a golf shirt and a fleece jacket. I thought all these items (save the golf shirt, as…you know, it’s for golf – but only for the players and not the volunteers), would not be appropriate. And I see how the flats were not the right shoes because I ended up tromping over hill and dale after my shift was over to avoid riding golf carts and to go for a walk. Golf – a good walk spoiled.
Edda was home on Monday, but is at school today! She’s almost back to her old self. We are trying to pull an earlier appointment for her to see Eric up at CHOP.
Edda is home today – but fingers crossed for the last day at home. This is the first day she’s eating her regular food well. This past weekend was only ice cream and birthday cake. Today, she’s been able to enjoy scrambled eggs, pasta, bananas, etc. We are writing to her neuro for further guidance.
Meanwhile, I’m feeling extra lousy because I got my Covid & flu vaccines on Sunday. We were all supposed to get them, but I cancelled Edda’s appointment and Jeremy’s because they were not feeling well. Now I’m feeling the worse out of all three.
I have too many hobbies. I joined the choir at the Unitarian church down the street at the beginning of Sept. I joined because it is my dream to play 4 chords on the guitar and sing at the same time – like a nice campfire song, that’s all I want. I’m working on the guitar, but I needed help with the singing, so I thought, hey – I’ll join the choir. I thought maybe I could tuck in unnoticed into rehearsal and that the performances were only one Sunday a month, but….turns out they are a little undersubscribed on membership and for sure, they would notice if I was gone and the performances are twice a month. And even though I haven’t been to services regularly in a decade, people kind of know me and I was welcomed back enthusiastically and emotionally. I had a meeting with the choir director, who I really like and already told him I couldn’t make the Christmas Eve service and he kind of looked…very disappointed.
Jeremy was not yet home, Ginny stayed late at the house to mind Edda. Ginny actually goes to church with a Capital C, so she might have said something like – of course I’ll watch Edda so you can sing in the house of the Lord. And I said, I’m not sure God is at this church, I think the UUs purposely avoid mentioning Him. and she said – Nonsense,God is everywhere!
By Friday, Jeremy was home and Edda had a quiet day, hanging out at home, taking meds, water and Ensure through her little tube. No seizures, also she did not want to eat by mouth. But there was a little smile here and there.
Saturday was my birthday! Eliana came to mind Edda from 8-3pm, I trained her with the tube and Jeremy and I headed out for my birthday lunch. I had long noodles for long life per the Asian custom. Then we went out to buy non-IKEA furniture which is what I asked for for my birthday. We bought a couch and a recliner to replace the IKEA couch and chairs we’ve had for at least a decade and are all falling apart. We literally bought the same couches in the same color. It would not be unlikely that when we take delivery of the in a few months, absolutely no one will notice the difference. Why replace them then? I have no idea, it’s just what I wanted.
Edda gave me the best birthday gift ever, a no seizure day and she started to eat by mouth. Sure only ice cream and birthday cake, but I’ll take it. Megan came over to celebrate in our low-key way. Jeremy made a delicious steak dinner – beef is so unusual in the house, we try to not eat it regularly because of the climate implications (remember, Jeremy is an expert in cow poop), but for special occasions, Jeremy’ll make it for me.
My favorite cake, berry chantilly (also Edda’s favorite) with my ridiculous hat. And a fond reminiscence to Maxi, our previous dog, who would always sing with us while we sang Happy Birthday – you were missed sweetie. Happy birthday to me! With love to you all.
Everyone is OK, we are all ok. It’s been an eventful few days. On Tuesday, Jeremy left for Sacramento very early in the morning – like 5 am. This was a last minute business trip only Tuesday – Thursday. Normally we both don’t like scheduling a cross country trip for only 1.5 days of meetings, but there is so much going on (I think mostly at Jeremy’s work), that he couldn’t spare more time.
At the same time, late Monday night, Edda had a couple of seizures which is not super out of the ordinary for her. She bit her tongue pretty badly, but she seemed otherwise OK – so I sent her to school and aftercare on Tuesday, texting the folks there she might not be eating very well. I managed to get her seizure meds in her Tuesday morning and sent her to school.
So, predictably, she did not eat on Tuesday and on the way home from aftercare, she had a seizure in Ginny’s car and then after Ginny left, she had two more and by this time, I was struggling to get anything into her (like water), let alone her meds.
She had one seizure Tuesday during the night. On Wed, I kept her home – kind of hoping the seizures would abate (they usually do), but by now she’s missed two doses of her seizure meds. But she seemed otherwise, again, OK.
I took the day as a sick day and took her on my errands – first, to the vet.
Inexplicably the vet is one of Elka’s favorite places. She loves the vet (yes, they spayed her. yes, they give her shots). I think it’s because she gets that spray cheese from the can there? I’m not sure, but she’s the only pet I’ve ever had who LOVES the vet. They offered to consolidate our visits because some of the vaccines are out of sync, but I told them it wasn’t necessary because they are just down the street and Elka loves to see them as often as possible. So we were there for her flu shot, which we have not yet gotten as humans.
And since it was a beautiful day and we were all loaded into the car, I took everyone to the dog park. And while I was there, Edda had another seizure. By this time, I’m texting Jeremy trying to figure out what to do. Her tongue is getting bitten each time she seizes, and therefore getting more and more swollen, and the likelihood of me getting her to eat or drink anything is getting lower and lower. It’s this time, I propose to Jeremy to take her to the ER to get an NG tube (down the nose into her stomach) so I can get meds and food into her. We all hesitated because sometimes (I hear from other Rett parents) that the hospital would go all into figuring out about the seizures and not doing the NG tube because they aren’t familiar with Rett syndrome. It’s weird, but I didn’t care about the seizures (I mean finding out what they are or what they are like) because I know it’s from the Rett and really will never go away, I just cared about being able to feed her and getting the meds in her. We decided to try to touch base with her neurologist at CHOP and go home and go from there.
So after I got home, I had lunch myself – for Edda, I bought all the soft food I could – rice pudding, chocolate pudding, ice cream, bananas, applesauce, etc. But she was having none of it. We were in email correspondence with CHOP, but the turnaround on the advice was slow. About 2 pm, she had, yet another seizure, and by then, her tongue was bleeding pretty profusely and I told Jeremy, I need to go to the ER because now I just needed the seizures to stop.
So I packed our bags in case we were going to be admitted and headed down to Children’s Hospital in downtown DC. I am grateful Edda still qualifies for treatment at a children’s hospital – the age limit is usually 21. If this was next year, I wouldn’t be able to swing being treated at Children’s. It took me about 90 minutes to get there, a lot of traffic – uneventful, no seizures from Edda. And then I walked Edda in her wheelchair into a packed ER waiting room and looked at the displays which had each waiting person listed by number (I would estimate about 25 people waiting to be seen), how long they had been waiting (someone had been waiting at least 3.5 hours) and the order in which they were planning on calling them back. I sighed and thought, this is going to be a long, long wait. I wait 5 minutes to register and got up to the desk and handed over Edda’s ID and got her registered and then the person said, give me a minute and I’ll come around and give her an ID band and as he turned around, Edda started in on another seizure, blood spurting from her mouth, and I slammed my hand against the little glass barrier between me and the registrar and said – she’s having a seizure RIGHT NOW. And, just like that, we skipped the line of 25 people, got rushed back into room 31, where a team of 6 people worked to stabilize her, give her a big shot of versed and let her recover from her approx 10th seizure in 36 hours.
As they got her settled, they looked at me and I asked if I they could put in an NG tube and send her home with me. And the attending (Sam) was like – yes! I like that plan. Let’s stabilize her and send her home. At that time, Dr. Marsh from CHOP called and I handed my phone to Sam and said – OK you two docs, talk to each other. And Dr. Marsh told Sam all the orders he recommended and also they both approved my plan of being sent home with an NG tube. And OMG, the NG tube got put in, the placement confirmed with x-ray, the labs drawn, the meds in and discharge all happened in quick succession. We were out of the ER before midnight. Maybe less than 6 hours. Unbelievable. Shout out to all the staff, our nurse Isabella, Sam the attending, the x-ray tech, everyone, everyone was very nice, very fast and super competent. I was very, very impressed.
I feel so grateful I feel so comfortable in a hospital, I gowned Edda myself from the pile of gowns that turned up in a closet which I found, turned off lights when we were alone, turned off suction or oxygen when it was clear that we didn’t need it and was making a lot of noise so we could rest better. I know if you are a patient in a hospital, you don’t want to touch anything because everything is scary and new. I’m grateful I can work an NG tube and can help the nurse insert it, help the X-ray tech position Edda, look at the x-ray and see that the NG tube is placed well.
Edda sporting her new NG tube – it’s full of blood from her stomach because she swallowed so much blood from injuring her tongue.
I’m grateful to Seni who took public transit to come stay at the house overnight to feed/walk and keep Elka company. There is no one Elka loves more when we are gone than Seni. We are all at home now, recovering. Edda’ll have the NG tube in until she can eat properly again. She’s on extra strong seizure meds for at least 3 days as we figure out how to manage this new clustering of seizures that seem to be happening more frequently.
Jeremy is flying home tonight, can’t wait to see him! We are all hunkering down at home and taking it easy.
Jeremy flew to Sacramento today (or is flying as I type this), it’s the first time in a while that Vince isn’t there to have a meal with him. It was so nice for Jeremy to tie in a visit with Vince with a work trip, but now no longer.
On Sunday night, Eric and Colleen hosted family dinner. They served cheese they had gotten on their European trip. I was very happy about the cheese. I have stopped eating cheese in the house, going from about 1.5 blocks of cheddar a week to nothing now. Does it make a difference? I’m not sure, I think I’m making it up in ice cream (out of the house) unfortunately.
Elka sleeping on clean laundry.
I went on a long hike with Kristen yesterday morning, it was such a beautiful day! Elka also came along and had a blast chasing squirrels. K came over to the house and met Jeremy for the first time and we went out for vegan food at Shouk. And I talked to my lovely mother…
We started the weekend with a spa night at Main Street. Ginny came and helped with dinner and a face mask (the spa type, not the virus type) while we wrapped up our work week. We eventually made our way there and helped with putting on stick-on-nails and other such things.
Edda is not a total fan of spa night.
Saturday was Jeremy’s 56th birthday and we celebrated in a low-key way. He went on a long bike ride, I went to the dog park and guitar lesson. Edda hung out with Eliana during the day and went out to lunch. I wore a mostly-blue outfit. I’m not sure I love this outfit, but the shoes, cufflinks (!) and tied neck scarf are the stars.
And I matched the glasses too! lol. I think this looks a bit too much like a flight attendant. But I wanted to use these cufflinks which are vintage from Jeremy’s maternal grandfather (?). I’ve had them tucked far in the back somewhere, but recently unearthed them and realized I had a thrifted shirt which needed cufflinks.
And in the evening, we went to celebrate Jeremy’s birthday by going to a new taco place in our town’s center and I’m trying to learn to use non single use utensils. I carry the foon (fork/spoon) and the collapsible cup in my purse and I try to remember to deploy them appropriately. (The red one is Edda’s). This photo is in front of Ben and Jerry’s where I Edda and I split a two-scoop cone. We ordered one cone with two scoops and then I slid the top scoop into the cup and Edda got that scoop and I got the other scoop/cone.
I kind of like this out-of-focus photo of Edda.
Jeremy shows his love for ice cream. Happy birthday sweetie, I hope you had a wonderful day and many, many more for you 🙂
Literally like 8 years ago, Ning and Brian planted this dogwood tree in the backyard. Immediately, the deer ate all the leaves. Then they tried to defend it by placing a “fence” around it – like metal stakes and plastic chicken wire and immediately they overpowered it. Every year, the poor tree struggled, but manage to keep living. Last year, I took down the fence and put a mesh bag over it. But because the mesh had 0.5 inch square, they managed to scoot the leaves through the little holes and eat all the leaves. Again, the tree lived. This year, I put a fine mesh over the entire tree and are we winning? I’m not sure. There are still leaves on the tree, but the baby deer are trying mightily to eat all the leaves and I can see the damage. I’m also not entirely sure the tree will, in the end, live – because there is damage in the trunk very close to the ground, so even if it was without deer, I’m not sure it is destined to have a long life. But I like that it’s trying, trying – every year.
It is my dream to put in a deer-proof fence. We’ll see. We also need it for Elka who wants nothing more than to lie outside in the sun.
We spent a lot of the long weekend working on the house. Jeremy spent a lot of time putting the final touches on the stove – covering the holes in the base of the cabinet so pots/pans can be stored there.
I’m, surprisingly, enjoying learning to work as a team in this capacity. We are a pretty good team.
Puppies came to the house on Labor Day. They did what puppies do. They were super cute with huge personalities and sharp claws and they proceeded to make little poops and pees in the house in mysterious places that we had to hunt for.
I have a friend Ward, who I know via my group guitar lessons, who runs an Olympic weight lifting gym and has been encouraging me to attend the Sunday workout session in Frederick about 30 minutes away. Jeremy is very interested in weightlifting and especially Olympic weightlifting and he knows all the folks on the US National team (I mean, on social, not in real life, obvs). So I proposed to Jeremy that we both go, I really know nothing, but it looks fun.
We went to the gym and borrowed shoes. I didn’t know there were special shoes, but apparently there are. Are there any sports without special shoes, I asked? I think not. Maybe swimming? You don’t need shoes while you are swimming, but you need the flip flops for pre-swimming (getting to the pool).
Edda came to watch us (there was a special needs teacher at the practice who recognized Edda!)
This is Ward – he’s teaching Jeremy how to snatch. There is an explosive movement that needs a lot of coordination.
OK, this might look heavy, but they had to keep trying to find lighter and lighter weights so I could do this – I think this is less than 25 pounds total – the two red plastic plates and the bar. Haha, I think they had me try at first with 15 kilos, but really I could not do this with 15 kilos. Ward kind of tilted his head and said – huh. 15 kg- that’s too heavy? And then I laughed and said – I’m a regular person! Like a middle age regular non-lifting person. To give you perspective on how far I am from anything, the female world record on snatch at my weight is something like 105 kg – 231 pounds. I don’t think I could even lift 231 pounds off the ground one inch let alone throw it above my head.
We mis-timed lunch (we left the gym about noon and everyone was starving) and had to eat two cookies and some pound cake that we found at a farmer’s market for lunch.
Then (so social!) in the afternoon, Megan came over to Edda’s delight and she taught me to crochet.
I’ve knit a lot before, but never crochet and I admired a kit she had when we last got together and ordered it also myself.
Sooo, we spent late afternoon happily playing with string (which, as I tell Vince all the time, is what we did before the internet was invented.)
