Infusion #3; No Active Arthritis!

I'm so exhausted, just physically and mentally, so I'll try and keep this post on the briefer side (for me, ha ha)

Morning went great, everybody out the door smoothly and with good time.  My traffic app Waze is still on its mission to show me new ways to drive to Palo Alto every single time.  This time it took me over 24, and then was thinking of putting me on 13 (so I would have passed by Jason's work), but then it changed its mind and put me going directly through Oakland and Hayward and then I went down through Redwood City.  There started to be lots more freeway numbers and I don't remember them all.  It took about an hour and a half.  Going back, I went through Redwood city again, but then it once again sent me through downtown San Francisco and back along the Bay Bridge.  It took me 3 hours. *dies*

We arrived and saw that we were going to have the same nurse, Dawn that I had liked.  Sadly, the Child Life person who owns the therapy dog was not there that day, but we had a man named Jake come by.  We had to wait while they were ordering one of those crib gurneys that I do not like.  I guess they don't get too many patients under 3 coming in? Finally we got situated, same room, same side as before. I like the consistency, though I think that the touch pad thing on the other half of the room may work better than the one on Phoebe's side.

Phoebe still has a lingering cough, which concerned them, but her lungs sounded clear so we went ahead and did the infusion.  We're supposed to watch her extra carefully.

Phoebe still did not want to drink the benedryl.  I don't think it helped that it was offered to her right before they were prepping to do the IV, so there was definitely not a lot of time to wait around for her to cooperate. The promise of an M&M after was not enough to negotiate in the moment.  Eventually I held her and Dawn squirted some in her mouth, and this time she actually did gag hard enough to spit a lot of it out.  Unfortunately, because they can't really measure how much she swallowed and how much she spat out, they couldn't redose her.  So they were a little more concerned about allergies--- rashes, hives, fevers, delightful reactions.  Though at least she's had it 2 times before, so we're hopeful she's good for now (allergies can appear at any time).

Since the other bed was not in use, I sat there with Phoebe in my lap, while got the IV put in.  Sigh.  We had to do it twice.  The first one was really bad, and Dawn tried really hard to get it to work, but it wasn't going to be good enough.  I don't really want to write about it.  Phoebe held it together better than me for the second one, I was totally tearing up, but couldn't wipe my cheeks or nose because I was trying to hold Phoebe and didn't want to move or upset her.  I don't know.  I'm sure it's not easy for anyone, but it just breaks your heart when your child is being poked and has go through all these intense medicine.

So let's move on to the high point of the day:

Dr. B came to examine Phoebe!  She is just such a comforting person.  She examined Phoebe and said that everything looked very good, and her hand was so smooth--- she almost seems shocked that Phoebe's cyst is completely gone, we are very lucky there.  As of today, we are declaring this Day 0 of Phoebe having NO 👏  ACTIVE  👏  ARTHRITIS 👏.

If Phoebe just had arthritis, we could continue with treatment for 6-12 months and if there were no flares in that time, we could start weaning from medication at that point, while monitoring for flares.

Because of Phoebe's uveitis, as I was pretty sure she had said before, we will be doing this for the next two years.  So. 2020, game on.

In the meantime though, we do get to stop giving Phoebe naproxen.  While it can help with inflammation and pain relief, it is just a drop in the bucket compared to mtx and Remicade, so we can try going without it.  Dr. B brought this up herself, which was super awesome because I had actually put out a post on Facebook group asking how necessary it was, as we were still doing it 2 times a day and Phoebe is not really in any pain.  So, I'm glad to drop it.  Even though Phoebe never seemed to have any digestive issues, I know it's pretty rough on your stomach.

Dr. B asked if we were interested in switching to Humira now that the pediatric formula is available.  I said no, not for now.  If the infusions were more traumatic, I would say maybe it would be worthwhile to switch.  I mean, they are not great, but they do take the pressure off of us for having to be the ones torturing her.  The IV placement is probably equally bad as a shot, but once it's time for the infusion, it's pretty low key.  Also, I don't want to exhaust our biologic options until it's competely necessary.  Dr. B completely agreed with me, and said that was what she would recommend, but would have also understood if we wanted to try something else.

We watched Elmo in Grouchland.  Mandy Patinkin was the selfish villain,  who wouldn't share.  He looked like he was having fun, chewing up all the scenery while wearing enormous fake eyebrows. After that we watched Rapunzel, but Phoebe napped through most of it.

After that, we flushed with saline and did the mtx.  Dawn completely suits up to handle the mtx, because it is chemo.  She wears gloves, a coverall gown, and a face mask with an eye shield attached.  Yup, we are putting that stuff in my baby every week, guys!!! 😥

Phoebe woke up when it was time to take all her stickers off and was very, very upset by the process.  At last we packed up to leave.  On the way out, I met a mom in the hall who had a baby.  Her 3 year old was in another part of the short stay unit, having dialysis because she was born without kidneys.  She wanted to know what we were doing here and, after looking Phoebe over, made the "classic" unwanted observation:

 

Good luck, Phoebe, you might be hearing that for the rest of your life.  

Anyway, she was really well meaning, but decided to tell me all about deciding not to abort her daughter because they found out so late, they couldn't do that and then also about her own medical conditions, places she lived, and something that she had that went away or she grew out of and maybe it would be the same for Phoebe..... (reminder, you do not "grow out of" JIA.  You can attain remission, but that's doesn't mean it won't come back.) Eventually I had to cut her off so I could go use the bathroom and then get going, due to the already mounting traffic (it was 4pm by then). Otherwise, I probably would have just kept politely listening to her tell me her life story, because I tend to get sucked in to that kind of thing.  Good bye, random lady, best of luck with all the family health problems......  She said she was going to pray for Phoebe, and I believe her.

EDIT: oh yeah, and she told me I should have kept breastfeeding longer and could have kept going longer pumping! I couldn't remember why she'd irked me so much from describing her, but oh yeah, that was definitely over the top! grrrr!

Despite the good new, I'm just totally wiped out and a bit weepy.  And that was before all the endless traffic to go home.  I'm trying to stay strong, but it's just so hard.

I had a voicemail from the Arthritis Foundation lady and she said if we raise about $500 more, we'd be at $5,000 which would then boost us into a category to get sent to one of the national JIA conferences in 2019.  That would be cool, but I'm not sure who on earth else we could hit up and I'm a little tired of asking people for money right now! 😟

That being said, plans are already in the works for the return of Team Phoebe Steps for 2019..... Our wonderful friend Alyssa is working to add us as the charity for our annual local steampunk convention to honor!  I'm so grateful and excited!

Elephant topiary outside the hospital

Phoebe loved all the animal topiaries.

Playing in the waiting room

Purple Posicle

Picnic with presents!

The child life guy gave Phoebe a Minnie Mouse.

Dr. B brought her a Star Bellied Sneech.  (Phoebe thinks it's a duck)

Not pictured: Doc McStuffins doll from Dawn.  

Everybody was feeling bad for my little baby.  Thanks for all the toys to brighten her day.

A Tale of Two Sisters!

Very soon we are going to have a 2 year old on our hands!  Phoebe is already well on her way toward asserting herself and demanding greater autonomy.  If you try and do things for her she will yell, "No, ME!"  This is one of her few two word sentences, but we are hearing it a lot, along with "No, MINE!" when she battles with Cordelia over toys.

It's funny, not only did my children come out looking completely different from each other, but their personalities are also so incredibly different.  I love both of my children more than words can express, but their uniqueness is endlessly fascinating to me---- especially because my sisters and I look fairly similar: we are easily identified as sisters, and we all got along extremely well growing up.
Cordelia was incredibly verbal as a toddler.  At this stage, she was talking to us in complete sentences, up to ten words together.  Her imaginative play was already taking off.  She would sit and listen to a book from cover to cover and then demand you read her a new one.  Cordelia showed a little interest in going potty around 18 months, but it quickly faded and she wasn't motivated to potty train herself until almost 3 years old.  Cordelia was very loving and sweet as a toddler, and very easy going.  She never had a major melt down until after she was 2 and then, as she grew older and more stubborn went through a period where she really struggled with emotional self regulation.  Cordelia has always been very ego-centric, and even now is still working on concepts like sharing. Now as a teacher, I don't really believe in forcing children to share, but rather promote things like asking for a turn and waiting to be next and eventually children master the concept on their own and start to share willingly..... I have done this successfully with dozens of children now, but, go figure, my own child is headed to kindergarten and still hasn't figured this out. 😝  Cordelia is definitely ruled by whatever's going on in her head.

Phoebe is my heart-daughter.  She is passionate and stubborn too, but also so much more sensitive and aware.  Lucky her, she has the added benefit of getting to watch Cordelia model what to do (or what not to do), whereas Cordelia definitely spent her earliest years surrounded with mainly grown ups.  If Cordelia gets hurt or is crying because she is mad, Phoebe will try to comfort her and give her a hug or a kiss.  Cordelia (unfortunately) is usually not in the mood for physical comfort to be receptive to this and will yell at her "I don't want a kiss! Go away, Phoebe!"  But at least Phoebe makes an effort.... I realize Cordelia rarely had the opportunity to even see anyone else get hurt or fly into a rage at this age... how often do Jason or I fall down and scrape our knees?  Phoebe loves to emulate what she has seen others doing--- specifically us taking care of her and Cordelia.

Because Cordelia could talk to us, she never really had a "No, ME!" stage.  Phoebe is wildy independent.  She can take her diaper on and off.  She is working on going potty.  She can put her feet in her pants and almost pull them all the way up.  She wants to climb into her car seat by herself (takes an eternity, I usually don't have the patience to let her).  She wants to buckle all her car sea buckles herself, even though the bottom two clips are still too hard for her.  She screams and flails if you do them for her (this is happening daily).  When Phoebe goes to the sink to wash her hands, she wants to turn on the faucet.  She needs to be the one to pump the soap, though she hasn't figured out to hold the other hand out to catch it without help.  If you want to make Phoebe really mad, do any one of these things for her.  If you try and put her foot in her pants, she will take them completely off, undoing whatever progress she'd made so far, and you will be back to square one of waiting.  Honestly, I love it.  Sometimes it isn't the best for, you know, needing to go places at a reasonable time, but I love how fiercely independent she is.

And then we have her sister.....Total space cadet!!!  Cordelia still needs help to focus on getting dressed!  "Cordelia go put your shoes on...... go put your shoes on...... Cordelia, shoes! ..... HOW DO YOU STILL NOT HAVE YOUR SHOES?"

I actually think I see slightly more similarities in these two pictures than I normally do!

And the matching expressions is adorable!

Cordelia loves food; Phoebe loves to eat.

Cordelia has a huge range of things she will eat and a few select things she doesn't like.  She loves vegetables.  She actually steals vegetables off of my plate to gobble up more.  We're talking asparagus, zucchini, artichokes, brussle sprouts, mushrooms, green beans, broccoli, cabbage, spinach (cooked and raw),  sweet potato, cauliflower, carrots (raw only), and more.  I am beyond proud of her.  She is usually wary of trying something new for the first time, but once she has, more often than not, she will exclaim, "I love it!"   She doesn't like citrus or strawberries, so tangy and sour is out.  So is spicy foods.  But honestly, I can't complain.  If I pack Cordelia a lunch, she will eat everything I sent.  And if I pack a treat, she will wait until the end to eat it.

Phoebe's tastes are much more finicky.  One night she may eat broccoli, the next she might not.  For a long time she wouldn't eat mashed potatoes, but finally she started to (phew! they're a stable around here).  She loves milk. She loves crackers and crunchy things.  She still loves fruit pouches.  Snacks.  She would eat all the time, but not the healthiest stuff.  Other times, she will do things like demand to get a cutie from the fridge, peel it herself, and then.... not eat it at all.  Ah, Phoebe!!  So fickle!

Phoebe took a long time to get into books.  And now she loves telling me, "READ!"  But Phoebe is already a very different reader than Cordelia.  Phoebe gets fixated on things.  She has favorite parts or favorite pages that she likes to come back to again and again.  You could be moving through a story and she will stop you and go back to her favorite page, or start trying to skip around to find another one.  She wants to hear the same book over and over and over again.  I mean, Cordelia wanted to hear books over and over too, but that was because she was literally committing the entire thing to memory so she could recite it along with you.

Phoebe also likes to reiterate conversations.  As I mentioned in a previous post, we are still almost daily discussing what happened to her at the hospital, the dog sitting on her bed, etc. I have decided that when she was saying OW about her knee, she was actually referring to the blood pressure monitor squeezing her leg, because that has come up a lot.  I realized that an important thing we needed to prepare for though--- the yucky taste of Benedryl and Tylenol.  So I have made a deal with her.  I told her that I knew the medicine tasted really bad and that she didn't like to drink it.  But she was going to have to drink it up and then I would give her M&Ms as a reward.  Then we shook hands.  Phoebe LOVES this.  She makes a slurping sounds to say "drink the medicine."  then she says "Ball" for chocolate ball.  Sometimes she says "Two" because she has to do it twice.  Then she wants to shake.  She is literally popping her head up in the middle of falling asleep to repeat this conversation with me.  I am praying real hard that this pays off, similar to prepping her by playing eye doctor.

Aaand speaking of the eye doctor, I've decided we're going to move on from Dr. N.  (Jason's mom is thrilled 😀).  I saw him 3 times and I'm not convinced he cares enough about Phoebe and at some point care starts to outweigh expertise.  I emailed with Dr. B about this and my need to advocate for Phoebe, and the fact that he wasn't willing to work along with the other doctors to treat Phoebe as a team.  She wrote me back an incredibly awesome message about how I am Phoebe's mom and have every right to demand the best care for her, and that she completely agreed with my assessment, though she was sorry my experience with him was "suboptimal".  She told me to keep fighting for Phoebe!!

So we are not going to be doing anesthesia with Dr. N in the fall.  But I did generously decide not to be a bitch and leave him a nasty review on the internet.  I did write one (a long one, full of details so he'd know who it was from) and almost posted it at 2 am, but I couldn't decide if he deserved one or two stars. ha ha  In the morning, I was feeling less vindictive.... Uveitis is a very long road and who knows, maybe when Phoebe is older, we'll be back to Dr. N and his lack of beside manner will matter less.  I mean, I plan to avoid seeing him for now, but specialists in this field are a pretty small group and I don't need to be burning any bridges.

 I'm still deciding on checking out the other specialist.  Phoebe did just have her eyes examined, so it doesn't feel super urgent.  Though since the weekend I have been noticing some pinkness of veins in her eyes, particularly the right eye.  (Cue Anxiety: WHY? Omg is she having a flare???)  Anyway, we see Dr. B on Thursday, so I'll ask her about it then, and if we need to see Dr. C.


oh boy, what a ramble! hope you had fun slogging through all this!

Beeyah

Phoebe talks mostly in one word sentences.  Sometimes she doesn't even pronounce a whole word.  Like milk still comes out as "MUH"

For the last year though, Phoebe has been saying "beeyah."  This is her own made-up, all purpose word.  It means, "I want that", "more",  "again" or sometimes "two".  

Phoebe started saying this around last August, and it is so cute that she still says it.  It will be a very, very sad time in my life when Phoebe doesn't say beeyah any more.

Phoebe has been cracking me up lately during her naps.  She has two of her favorite blankie, that way she always has at least one around to cuddle and sleep with.  When she discovered she has two she gets super excited and starts telling me that there's more than one blankie.  "Beeyah! Beeyah!" and laughing to herself.  

In her book of Rogers and Hammerstein songs, there is a page that has little pictures in a pattern as a border at the bottom. Phoebe pointed to all the moons in the pattern, saying "Beeyah!" for each one, telling me that she has found another moon!

Here is a little video of Phoebe at 15 months saying beeyah for more ice cream.  Cordelia says that it is actually "breeyah," and usually I do not agree, but there is one beeyah in there towards the start that could also be more of a breeyah.  

I love you Phoebe-beeyah.

Back to the Eye Institute

Woke up super early for another big drive!  Everything went very smoothly and we had great traffic, with Friday light morning conditions.  Yay!  I left a little later than I would have liked, around 6:45, and we were there a bit after 8.  Phoebe was napping in the car, so I actually drove around for a while to let her get as much sleep as possible.  I ended up driving to some marshy Palo Alto nature preserve and drove around for a bit looking at mudflats and seeing lots of birds.  When Phoebe woke up, we stopped at a Duck Pond.  I decided to get out of the car a bit, since it was such a lovely morning.

But uggg nature!  I parked and was immediately met by a swarm of insects that swarmed all over my car and bunch flew inside when I opened the doors.  I'm not sure what they were.  I was worried they were small mosquitoes.  I squished and shooed a bunch of them back out when we left.  I took Phoebe out and the first bird that we met was a Canada Goose that wanted to come right up to us.  This sounds cute, but if you know, geese can actually be very aggressive and can even bite your finger off, I'm not even kidding!  I swear, this bird was bigger than Phoebe.  Anyway, we avoided the goose, but it decided to keep following us, at a distance, as we were intruding on its territory.  Phoebe wanted to go up to it, but I told her no, because that bird might not be nice.  Phoebe liked saying "NO! NO!" to the goose after that.  We went and found some other duckies by the shore.  They were still sleeping.  Phoebe wanted them to wake up, so she said "UP!"  Then we went on a little path and saw a lizard and a little brown bird warbling beautifully.  After consulting with Alison, I believe it was a song sparrow.

Quack Quack, waving to sleepy ducks!

Anyway, it was nice to have a little outdoorsy break before the long day, despite bugs and threatening geese.

We got checked in and then did our first part of waiting around.  Then we got taken to a room by one of the same nice nurses we saw last time.  She remember us too, I don't think they get too many toddlers coming through.  I mentioned we had stopped drops on Sunday and that I had tried to message Dr. N with a question about it and not heard back; apparently I need to join a different Stanford online health network for emails to actually get sent to him, so that explains why I got no response.  They started setting me up with that.  We then went over Phoebe's meds and I did the dilating drops for Phoebe.

Then we waited some more.  Every where we went, people were just falling in love with Phoebe. I'm sure it was a great distraction for them to watch an adorable toddler.

Phoebe got called in to take some photos of her eye.  She struggled with this last time, so this time they tried a different camera on her.  Phoebe did great.  The lab woman was really fun too, with braided pink hair and singing Elmo's world (perfect choice for our girl).  She ended up taking the cover off part of the camera and inside was a big big mirror.  I had to hold Phoebe's arms so she would NOT touch it at all, and she did great and took good photos of both eyes.

After that we went back our, it was around noon-ish.  Dr. N's 9:00 patient was still waiting around to be seen, but he was taken pretty soon after that.  We had the "9:30" appointment.

I had packed a few snacks in the back pack, but in the morning rush, I had forgotten Phoebe's lunch.  I know I went the fridge, because I did pack her water bottle, but I did not actually grab her food. So I went downstairs and got a bunch of stuff at the little cafe and it held us over quite nicely.  They even had milk and goldfish cracker bags.  Win!

When we went upstairs I got to hang out with a 2 EMTs, who had brought a patient, and then were instructed to wait around for them.  One was a dad with a 16 month old, so we talked kids and what medications Phoebe was taking.

Oh, another way we passed the time was going potty.  Phoebe stayed dry almost all day and used the potty 3 times while we were there.  The only time she peed herself, she started asking to go potty and then actually peed more.  What is happening?!

Finally Phoebe got taken to the room for her exam!  But of course you get to wait in there for a while too.  Another doctor was waiting around in the hall, looking out the window.  Phoebe kept trying to play with the door, opening and closing it, and attracted his attention.  He started playing peekaboo with her and then started to chat with us.  He got super fascinated when he realized that Phoebe was going to be the patient, not me, and actually came into the room and sat down to start talking to me.  He was amazed when I said she had uveitis and also JIA.  He said he knew young people could get arthritis but had never imagined a 1 year old.  He said he treats people in India all the time with uveitis but had never met a toddler with it.  He wanted to know all about how her uveitis got diagnosed, since it has no symptoms.  For him, it is not usually caught until it has progressed a lot and usually there is redness and flare.

So I went over our whole story of Phoebe's struggles to walk and he wanted to know all about all her medicines and what was working etc.  He was really interested in how she handled the infusion and how the heck do they place the IV in someone so little.  He was also definitely of the do-not-treat-with-steroids camp, which I guess is the most cutting edge research, as most ophthalmologists will still keep you on steroid drops, or even just one steroid drop a day, but it's really not necessary and of course, steroids are very dangerous over long term use.

Anyway, I was a little baffled that this doctor was taking so much time to basically hang out with us.  But I guess he was actually waiting to observe Dr. N.  There were some residents hanging around last time we came, but I do not think he was a resident.  Eventually I got a look at his badge and it said "Visiting Lecturer."  So I guess he is a doctor visiting and observing at Stanford but practices in India.  He was SO. NICE.  and cute too (ahem....love you, Jason! lol).  But most of all, he was just so good with Phoebe, so playful and caring, she let him push her around in her stroller and even pick her up several times.  I loved how affectionate he was being with her.   I wish more than anything that he could be her doctor! Arg!!

And he was so enchanted with Phoebe, before we left he wanted to take a picture with her, to show to his 4 year old daughter, who is in India.  I thought he would kneel down next to her as she was sitting in her stroller, but nope, he picked her up again.  He totally melted my mommy-heart.   I told him I liked thinking of his daughter in India seeing a picture of my little Jewish-Japanese baby. It just feels so incredibly global!!  The saddest part is that I don't  even know his name-- I'm sorry it was hard to read embroidered on his lab coat and had too many letters to sound out and remember.

Dr. N continues to not be my fav person.  Jason's mom thinks I shouldn't see him and that he doesn't show enough care/concern for Phoebe, and it's true, he's really hard for me to talk to.  She also does not like that he makes a little baby like Phoebe wait for hours and hours and hours, when you are supposed to have a 9:30 am appointment.  As it was we got seen after 1 pm.  The waiting isn't actually too bad for us, it's just long.  And, yes, Phoebe is little, but who am I to say that her case is more important than that of the elderly man who was waiting to be seen before us?

I am still conflicted between how much do I actually have to LIKE a doctor vs. how much do I need them to know their shit.  I certainly do not doubt that Dr. N knows his shit.  Also, he has pretty stellar reviews online, which doesn't change my own personal experiences of interacting with them, but it is still pretty impressive and does give me some perspective.  One writes:

You can go anywhere to see an eye physician and surgeon ( a true doctor who specializes in eye diseases - an ophthalmologist, and not an optometrist). You may even have to wait for just 5 minutes or less. However, if you truly wish to learn why you have a serious eye disease, especially if the disease involves the retina or if it is uveitis, you need to come to see Dr. N.  I must warn you though that you may need to wait a while to be able to get an appointment to see Dr. N, as people from many states in the US and around the world come to see Dr. N.  Dr. N is extremely smart - just read his CV on the web. He will spend hours with you if necessary, hence you may spend several hours when you come to see him in his clinics. When Dr. N is with you, that is all he focuses - all on you, regardless if there are others waiting. Thus, please be patient when you come to see him. After your encounter with him, you will see why and how he has garnered his reputaion. The patients that he sees often have very serious illnesses, not just with their eyes, but with their bodies also. And, Dr. N always tries to help them all.I have been with many physicians. However, very few have the intelligence, the devotion, and the compassion like Dr. N. He is truly incredible! 

So, that is definitely some glowing praise and I do find his attention more admirable than upsetting.  But he is definitely very particular and demanding and it's not just the language/cultural barrier.  He doesn't like that Phoebe is his patient, but then we didn't follow his treatment recommendations.  Though I can also understand that as frustrating.  We discussed again Remicade vs. Humira.  He is still concerned about Remicade side effects and being less effective.  He says that he goes by the facts and the research says that Humira is superior and safer.  He said that Remicade was not proven, but it may still work, so yes, it's fine we are trying it.  I remember Dr. B saying that the study that was done on Remicade was not well conducted, and that she said it still was an effective treatment.  He didn't think that was a good reason because if it was effective, the literature of the findings would show that, and he has to go by the facts.  I said that if Remicade fails, we are not ruling out Humira, but that I took it seriously that using this drug was a traumatic experience for many children.  He said he does prescribe it other children as well.  I decided not to get into it that the citrate-free, less painful pediatric formula of Humira has just been released; he probably doesn't even know yet.

He also kind of questioned me on still seeing Dr. C, because seeing 2 doctors with different opinions is confusing, and it's true, it kind of is.  I am thinking about dropping him and just sticking with Dr. C because I prefer her but...... then I do have to recognize his expertise.  The photos of Phoebe's eyes show that her right eye has inflammation of her optic nerve.  I could definitely see some sort of spot on her photo.  Phoebe totally ROCKED her eye exam when he finally got around to looking at her.  Our practicing at home with a box paid off.  So, she still has no cells in her eyes YAY, but this inflammation is a concern because if it does not resolve, that is what would cause vision damage.  Dr. C definitely doesn't have the capabilities to see that in her office. :(

So he is still planning to do another fluorescein angiography in September, 6 months after her last exam with anesthesia.  So hopefully being several months into Remicade by then will make all the difference, otherwise we will need to talk other options.

It's so hard, and I'm just undecided.  There's another specialist through UCSF we could potentially see, if I want to seek her out.   But Dr. N has already done some pretty through exams of my kid's eyes... is it better to just keep building on that or start over with someone new?   And I am sure that if I go to someone else Dr. N is the type of doctor who would be suuuuper insulted, just like I read in the reviews of the orthopedic who originally diagnosed Phoebe.  What the heck is up with specialists.  Someone Jason works with who has some health issues agreed, most specialists are just arrogant assholes.

Anyway, we finally left at around 2:30.

We went back via Oakland this time, so we had to make a surprise visit to say "BOO!" to Dada.

With this added stop, I got in to pick up Cordelia at 5:30!  Oof long day, long drives.  My song obsession of the drive was "Starlight" by Muse.

Not for any particularly inspirational reasons, it just made for really good driving.  Ha ha, I was reminiscing about how on LiveJournal you used to always be able to record what music you were listening to when you were writing.  I made a silly facebook post about what if we could re-read old Livejournal posts the way we can look back through our old Facebook memories.  This suggestion elicited several horrified responses from friends.... they must have been even more emo than me. 😂   But I guess I've always liked keeping a diary.  It helps me remember my days and process stuff.  Thanks for reading, if you're reading along!  :)