New Post, New Year

Hi Hi Hi.

Yes, it's been a while since I blogged about Phoebe.  I guess that's a good thing, but in other ways, I feel behind.  There are two posts I started writing and didn't finish and it's kind of hard to go back to when it no longer feels like a diary entry.  So I'll just sum up some of the notes on our arthritis journey in that time.

In October we did a JA Day in Sacramento and went to a pumpkin patch.  It was a bit far, but we had fun.  Lunch was provided and they gave us wristbands for the whole farm and all the activities except the pony rides.  The girls loved it.  We met two rheumatologists, one of whom did her residency at Stanford, so she knew Dr. B, of course.  It was nice to meet a few other parents and their children, but after the lunch was over, everyone kind of went and did their own pumpkin patch activities, so it wasn't the most social of outings.

I also joined the Pediatric Rheumatologist Care and Outcomes Improvement Network (PR-COIN) for a representative of their parent working group.  They have monthly phone conference calls and also a few meetings a year, which you can attend--- with travel funding!  The first one is in January, but another teacher had already taken one of the days off and I already miss plenty of work, so I'm not going to go to it.  But hopefully I can go to another one, because it would be very interesting and I'd like to meet some of these moms in person.

Thanksgiving marked the "first" of diagnosis anniversaries that are coming up.... it has been one year since Phoebe had the virus and ear infection that really triggered her flare.  I am thinking about to do a bigger reflection post on those days as we come up on our first year as a JIA family.

For Giving Tuesday, I did register Team Phoebe Steps for the Sacramento Jingle Bell Run for arthritis. Judy and my aunt gave me a donation, so that was very nice. We did not actually go to the Run--- too busy--- but the Sacramento arthritis folks sent us a box of goodies, tshirts, snacks, medals, and jingle bells after the event.  So sweet!

I also had lunch with someone from the arthritis foundation, who was asking if I wanted to apply to go to DC to talk about policy stuff too.  But the application deadline was when I was also doing a class presentation and also preparing to help teach a 3 night class on Attachment Theory to our teaching staff.... also while Hanukkah was going on.... yes, definitely overbooked myself for early December!

Cordelia and I had strep.  Phoebe was minorly sick with something, and threw up a couple of times, but was immediately fine again and running around after.  She also threw up a couple of time later, during vacation, but I think that was from having a lot of icky phlegm.

Phoebe had an infusion on Jason's birthday.  Cordelia came with us, which I have mixed feelings about.  I think she is already so nervous about pokes and shots, so seeing Phoebe get poked was pretty difficult for her.  Jason thinks it will make her more empathetic, whereas, I think 5 is still young to worry about all the medical stuff that is happening to her sister.  But well, this affects our whole family.  She definitely already is plenty aware of Shot Night.

Anyway, of course, this was the time we had a strange occurrence with Phoebe's IV.  😖
They had to poke her twice to get it in, and when they did, the nurse commented "Great blood return."
But apparently her IV was actually "too good."  When they started the drip, her IV tube started filling up with blood.  I immediately called the nurse back and she consulted with two others before deciding to just take the tube off and replace it, to not risk a clot.  So that was kind of disturbing and not normal, even if a relatively easy problem to fix.

After the infusion, Jason's dad put us up in a hotel in Palo Alto for the night.  When we went to stay there, we found we our room had gotten upgraded, so that was really cool.  The girls loved the hotel suite-- Cordelia got her own bed and Phoebe had the pull out couch bed.  In the morning, we continued down to LA to see my family for a few days.  While we were there, we went to Disneyland, just Jason and I and the girls.  They loved it! It was fun doing all the kiddie rides and doing some things I'd never even gone on before, like the steamboat.  There were still so many things we didn't even get to do with just one day, but I doubt we'll be going back any time soon.  Jason and I don't have much vacation overlap and once Phoebe turns 3, it'll just be too insanely expensive.

💸💸💸

Shot nights the last few weeks have been getting rough again, with Phoebe getting much more distressed and protesting.  Last night, when Jason started to get ready, she realized what was going on and went in her room and shut the door.  When I came in, she immediately wanted to shut the door again-- not wanting to do the shot.  Some days she asks if it is a poke day.  It is hard to know how much to tell her.  Like, she's only two years old, she can't understand a calendar.  I don't want her worrying about the shot-three-days-from-now.  I'd love to read some more literature on pediatric pain and shot routines, etc, like how do diabetes families handle it multiple times a day?? I'm sure there must be quite a bit of research out there!

On Tuesday, I am very very excited because Phoebe FINALLY has a dermatology appointment.  She has been having a rash on her palms and feet since November and I have been going crazy not knowing what it is.  

I have recently connected with another JIA mom of a two year old in our area.  I am thinking about trying to set up a playdate with her and the other mom I met at the Phoebe's walk, but not sure about what location would be good as we're a bit spread out.  

Ok, lots of JIA news, huh?   I'm also trying to be a bit more active about posting on the Phoebe Steps Facebook and Twitter pages.... we'll see what 2019 brings.  Maybe a JIA conference trip over the summer.  

This post could really use some pictures, but oh well, bedtime.

Infusion 8

Cordelia has had a cold all week and Phoebe decided to wake up with a runny nose.

Actually, I knew she had a runny nose before she woke up because she had sneaked into my bed during the night.  Yes, ever since she learned to open her bedroom door, Phoebe has been waking up at night and coming into our room.  Usually I hear her wrestling with the door knob, but there have been quite a few times where I wake up in the morning and she is sleeping there, without any memory of her coming in.  I used to be an incredibly light sleeper, this literally never happened with Cordelia or even when Phoebe was a tiny baby.  I co slept with her and never worried that I would lie on her or anything because I would 100% for sure wake up,  I usually am that light of a sleeper.  But Phoebe has apparently serious stealth skills.  I never really wanted to co-sleep with Cordelia, especially during her nearly 2 years of night wakings.  The problem was, when she would wake up she would want to talk to us and often was very grumpy and belligerent.  Phoebe just comes in quietly and goes right to sleep.  It's not worth it to even try and put her back in her bed.

Anyway, runny nose, but no temperature.  I was pretty sure we would still do the infusion, but didn't want to drive all the way out to Stanford to be sent home.  First I called the Bass Center, and they said they don't do evaluations themselves, and to call rheumatology.  I called rheumatology and their phone went straight to voicemail.  I called again, still no answer, so I followed the voicemail's directions and called the hospital, asking to speak with the rheumatologist on-call.  

I have done this twice before--when Phoebe's wrist developed the synovial cyst and again when I wanted to know if mtx and vaccines were ok to be done in the same day.  During the latter, the operator told me to leave a message with the department instead of transferring me to the on-call, and I did not get a response until the end of the day.  Again, this time, the operator wouldn't connect me to the on-call.  He said, "it's 9 am, rheumatology office is open, I'll connect you."  Then he patched me through to a super cheerful and helpful woman who took the message for me.  

But he transferred my call to the rheumatology appointment center--- not the best place to leave a message for a doctor, apparently.

It was getting late, so I left with Phoebe.  She was in good spirits and having a blast playing with a bunch of Disney figures she got from Meme on Halloween (definitely appreciated the non-candy gifts for the girls), so I knew she wasn't very sick.

The drive was pretty good, just some standard slowing, no huge traffic jams.  I used the valet for parking! 👍 

When I arrived, they had Phoebe wait in the train area as she had a runny nose.  

When we got called in, the nurse I'd spoken to on the phone asked if I'd heard back from rheumatology----which I hadn't.  So she called for me and got the ok to move forward with the infusion as long as there was no fever.  

Dr. B herself called me a short time later, because she had gotten the message that I'd called the office.  She said that she also would have told me to do the infusion, so yes, we were on the right track.  She told me she would message on mychart me the best number to call--not the appointment line-- but when she did it was the number I'd called first at the beginning of the morning.  So really the issue was with the operator A.) dismissing my request for the on-call and B.) transferring me to an inefficient phone number for the department.  I asked her if my questions regarding runny nose or mtx/vaccines were appropriate uses for the on-call, as I don't really want to waste doctor's time without an emergency.  She said yes, and that I had done the right thing, but gotten bogged down in protocol. So next time I will push the operator harder to get an "urgent" question addressed.

Phoebe again got a private room and her patches put on her very quickly, yay for no waiting around. We had the really great nurse Nicki from our first time at the Bass Center.  

This room had a couch, which Phoebe really wanted to bounce on.  Phoebe also loved looking out the window. There were some sort of bushes outside with green berries on them, and Phoebe was convinced they were grapes.  She would not stop talking about them.  I ordered grapes with lunch and she was excited to eat them up.

Nicki had to help me force Phoebe to drink her pre-meds.  Even m&ms were not gonna cut it, Phoebe just said "No, yucky!" and cried  It sucked, but I held her down and Nicki got her to drink the meds.  Such a bummer, it really is the hardest part for her!

The patches seem to work really well for numbing or else Phoebe just minds pokes much less.  Nicki did a fantastic job inserting the IV and doing a blood draw.  Phoebe barely whimpered.  She just sat in my lap and watched Elmo in Grouchland (it was even in the "scary" dramatic scene of Elmo losing his blankie..... not the most comforting moment in the movie to be watching!?"). The nurses were so impressed with her.  They kept going on about what a great little baby she was and how well the name Phoebe suited her.  Proud mama of this brave, brave baby!!!

We did the 2 hour infusion again.  We watched the Elmo movie, parts of the Lion King, and parts of Moana.  Phoebe was not into her mac and cheese, but did eat the aforementioned grapes.

We snuggled a lot, but she never fully took a nap.

I was possibly going to meet with the doctor in charge of PR-COIN, but she messaged me that she couldn't make it.  So we will talk by phone some other time.

We finished up around 3.  Phoebe was excited to go back out to look at the trains.  She said "beans!" for the jelly bean train!

They have a lot of wagons around the hospital for people to borrow.  Phoebe asked if she could ride in one when we came in, but on our way back, she spotted something even better.  I pushed her around a bit extra while waiting for the valet to get my car.

She loved saying "beep beep!"

Drive home took around 2.5 hours.  But Phoebe took a nap for a good deal of it and I was home by 6 pm.  So I think that was a better option than waiting around until 6 to leave... with no nap, Phoebe would have been sooo tired.  Overall, it was a really smooth infusion.  Phoebe is definitely more congested today, but I'm hopeful she will be ok.

Zzzz goodnight.

Infusion 7

I dropped off Cordelia at Kindergarten and then we had to stop by Meme's house because we had forgotten a small stuffed pig that Phoebe got in a claw machine there.  She'd started asking for it the previous night and then remembered to ask for it again in the morning.  This girl's memory is getting good--- no pulling a fast one on her!

Phoebe was getting tired, but I then had to make a quick stop by the house once more to get my notebook, which I had jotted down a few questions to ask Dr. B because there are always minor things I wonder about but forget to bring up in the moment.  Phoebe talked me into giving her a snack and we were on the road by 9:15.  Traffic was still moving slow.  Our appointment was at 11, and with parking and getting checked in at security, I was still walking into the Bass Center at 11:05.

As I was leaving I saw a sign that said IMMUNE COMPROMISED AND BASS CENTER PATIENTS USE VALET SERVICE.  Which is us, so maybe next time I will use the valet?!

Similar to last time, we had a bit of a wait before getting moved to a room.  It was after 11:30 for sure.  We spent the time doing some arts and crafts with some women who were there as volunteers.  I think their t-shirts said something about Childhood Cancer and art.  They had rubber stamps and also magazine pictures of animals to collage with.  Phoebe enjoyed it.

We had our own room this time.  The privacy is definitely a plus!  Phoebe wanted to watch Elmo in Grouch Land immediately. Our nurse was really nice, she had a two year old and we had a lot of conversations about kids and how they speak Italian at home.  I was able to handle the Tylenol on my own, but she had to help me get Phoebe to drink the Benedryl.  We managed to not have her spit any out.

Our nurse deferred to a more senior one to help place the IV.  It happened pretty fast, I didn't quite know it was about to happen.  Child life never came by at all, though that's supposed to be part of Phoebe's file.  I didn't have the ipad set up, so I just quickly pulled up some home videos on my phone of us looking at colorful fish and jelly fish at aquarium.  I don't think I even had Phoebe's paci or other distractions, so Phoebe cried pretty hard.  But the nurse was very confident and got it on the first try, so yay!

The nurses all wanted to know why Phoebe was doing such a long infusion, as opposed to the one hour one.  We got asked that last time as well.  I said I could ask Dr. B when she came by later.  One nurse actually wrote the question on Phoebe's white board, and then as soon as Dr. B arrived they pounced on her with the question as well--- they were really eager to ask her.

So I guess they are used to administering a more rapid infusion, though that is mainly for GI patients-- Chrons, IBS.  But I guess if you have proven to handle Remicade, you can have it done at a faster drip speed.  Some patients may have an "infusion reaction" where it makes them start to feel poorly for getting it so quickly, others may have issues with their veins from trying to do it that way.  But, even though you can still develop belated allergic reactions to Remicade, I guess this doesn't necessarily increase the likelihood of becoming resistant to it. Anyway, I said I didn't really have an opinion on it, but would defer to their medical opinions.  Dr. B was not opposed to the suggestion, so re-ordered the infusion for that day to be done in 2 hours and said we can possibly try a 1 hour one next time.  So if we go that route, that could be a big game changer.  I've sent Dr. B a follow up email to get a little bit more information about it.

I did ask about what the options for closer infusions would be.  I sounds like we could go to John Muir, though the downside would be it would be in an infusion center with lots of beds, not individual rooms.  It would be run by children's oncology, so the oncologist would have to examine Phoebe and they would also have to get approval to also administer methotrexate there, Dr. B wouldn't be able to visit us, etc.  We discussed a couple other options about changing our scheduling for staying at Stanford and working around traffic.  Dr. B asked if Phoebe'd been to the hospital playgrounds yet, which we hadn't.

Dr. B examined Phoebe and the good news is, she still has no active arthritis.  I said I'm thinking about signing Phoebe up for some sort of gymnastics class, since she loves to climb and swing, and she said that was fine.

I asked if she saw many siblings with JIA/other autoimmune or rheumatological conditions.  I think she said it's about 25% of cases, there can be other conditions within the same family.  I said that Cordelia has asked about getting arthritis, and so far I have been telling her she won't get it because it's not contagious.  But Cordelia does seem like she has what I would describe as "floppy" joints.  I am not qualified to diagnosis her with hyper-mobility, but that girl is very much a noodle to me.  I know that some JIA kids have hyper-mobility, but Dr. B said that hyper-mobility on its own was not a red flag, and it fact was not regarded as a problem unless there was pain associated with it.  So that was really good to hear, because I wasn't sure how they were all interconnected.

Along with trying to avoid getting too inevitably sick, I asked if Winter weather was a trigger for flares, and she said that there is a correlation in symptoms getting reported.  But hopefully we will not have that problem, because Phoebe is doing amazing.

We also talked a little bit about joining the Parent Working Group.  It is for PR-COIN, which stands for Pediatric Rheumatology Care and Outcomes Improvement Network.  She said that Dr. L at the hospital knows more than she does, but currently Stanford does not have a representative, and she was suggesting me.  So that is kind of cool.

I have already asked on Facebook and gotten connected with a mom who has a big role in the group.  Participation has certain time requirements to be met: about 15 minutes a week spent on emails, and an hour long phone conference call once a month.  There are also a couple weekend conferences in Cincinnati during the year, but those are more optional.  It sounds like there are a lot of Projects and Committees, but I'm not sure what exactly those would be pursuing.  The mom suggested that some people make a separate email account for handling PR-COIN business, so I am thinking of doing that.  It seems like there is a lot involved (welcome email was filled with info and acronyms and ends with "if we haven't scared you away....")  but I'm pretty interested.

The 2 hour infusion seemed to go fine.

We were finishing up in the 3 o'clock hour.  Our nurse left to get the methotrexate and must have gotten caught up doing something else because she was gone another half hour or so.  I started to show Phoebe part of the Lion King, intending to turn it off after "But I Just Can't Wait To Be King," but I must have dozed off in the middle of that song because next thing I knew there were scary hyenas chasing lion cubs around.  So we switched to Moana for the last part of the day and got up through her meeting Maui.  So that tells you how much time went by, I guess! lol

It was at last time to remove the IV.  Apparently there is a national shortage of the spary they use to remove medical tape easily.  This is one of Phoebe's least favorite parts.  She does not like the spray and she really does not like having tape or bandaids taken off.  So doing it without the spray was really sucky and she cried a lot.  I was kind of stunned at there being a national shortage of this product.  The nurse didn't know much, though she said sometimes there are planned shortages.  I tried googling to see if there were any news stories about this just now, and nothing came up, but you can order it for like $15 on Amazon, so...... I dunno..... anyone wanna Amazon Prime me a bottle to bring along next time in case they're still out?  ha ha.

Her nurse had a light up Chewbacca toy

Phoebe did not take a second nap, but with it being 4, I decided not to leave and hit rush hour.  She was pretty tired, but we decided to follow Dr. B's suggestion and walked over to the new hospital, just down the street.

When we came there in February, parts of it were still under construction.  Phoebe was so little and in so much pain back then, she had no appreciation of things like the whimsical decor of ocean animals and native CA beasts.  Now she had to stop and hug or pet every animal statue we encountered!

Phoebe thought the sand pipers were hummingbirds.

We went to the playground outside.  It was very beautiful, incorporating mosaic work into all the structures.  Phoebe was just the right age of it, the slide was so small.  We had so much fun, but I wasn't like, amazed by it.  Dr. B had mentioned a garden, and warned us about bees, but to me, it wasn't very expansive, just some nice landscaping.

Instead of scoping out a restaurant for dinner, we just went to the Harvest Cafe.

Phoebe picked the banana herself and carried it to the cashier

It was there that I realized that there was a whole other play area outside the cafe.  I'd seen part of it being built before.  Now it was finished.  Here was the garden Dr B was talking about.  We were not troubled by bees; instead a dozen hummingbirds were fueling up for the night and dive bombing each other over our heads!

Ok, here are a ton of pics to enjoy!

Cordelia would lose her mind over this mountain lion cave.

This tree fort is amazing. I need it! 

We left around 6:30 and made it home around 8:20.  Some traffic, but no sitting at a full stop for ages and ages like we experienced before.

The song of the drive was "Let Go" by Frou Frou.  I like the lyrics that say to stop waiting, just jump in and Life will be amazing.  So often I hold myself back, or don't say what I'm thinking, but I'm trying to be better about it, even compared to just pre-parenthood Rachel of five years ago.  I have a lot to stand up for now.  Someone else I know was talking about finding enjoyment in imperfections and I feel like the phrase "there's beauty in the breakdown" really describes that.  My life is not perfect, and sometimes it feels very chaotic, but even on hard days like infusion days, there turned out to be a lot to enjoy.  I love my family and I love this incredible gift Phoebe has given me of making me a stronger mama, watching her fight and seeing how passionately she loves the world.

Night Before Infusion Post...

I've been meaning to post here for a while, but it's been hard to sit down and write a longer post.  Also, I have been trying to share a bit more on social media to advocate for JIA more publicly, but that tends to be shorter posts or little bite-sized bits of information.  Phoebe has a FB page and I'm also experimenting with twitter, but still don't really get it.  Is it better to retweet or comment on something, ha ha, I don't understand how it works!

If anyone somehow wanders over to this blog from one of her sites, hello.  This blog is still public, but tends to be rambley and personal, so not really good to share widely.  

In my last post here, I recorded that Phoebe threw up before her shot, but that thankfully has not happened again.  In fact, Phoebe has been showing her mastery of the shot night routine by recreating it in her play.  She has a "script" or schema that she follows--- you get the shot, you cry a little bit, and then you get a hug or a bandaid.  

Shot Night with Foxes.... an alternative to Dances With Wolves?  Ha ha.  Phoebe gave the baby fox a shot.  He cried and then got a hug from his Mama.  She then gave the Mama fox a shot.  I had just gotten my flu shot that day.  I can't remember for certain, but I think she may have given the baby a shot in the leg, and the mama a shot in her arm, which would have been 100% accurate attention to details.  But I can't be sure.  

Cordelia was sick with strep.  She had a fever and threw up on the way home from the Renaissance Fair.  Poor C, she didn't get to enjoy the fair, while Phoebe had a blast.  Cordelia did not have a sore throat, but after she threw up 5 times, I took her to urgent care in the morning.  She seemed to be feeling better and was chatty with the doctor, so it was a surprise to both him and me when the rapid strep test came back positive!  I thought I was being overly cautious, but it was worth it because we were able to put her on antibiotics immediately and no one else in the house got sick.  Win.  Poor kid, she was super sick.  In the video she was saying she was going to take a nap, and she actually did!  You know Cordelia is sick, as she stopped napping 2 years ago!!

Here is another example of Phoebe doing Shot Night Play.  This is my second video of her attempt.  At first she said "Bee" and got the buzzy bee.  Then she adorably announced " 'hot.  'hot."  as she can't say "shot."  She also said "poke" and "DONE!"  She put on the bandaid, but then immediately said "off" and took it off.  That video goes on for too long though because Phoebe couldn't figure out how to turn off the bee at first and it just keeps buzzing, really loud and annoying.  After that, she reeenacted it again, which resulted in this video.  She is calm and efficient.  "Done!"  I love how matter of fact she is about it.  

Anyway, these videos really show you how smart Phoebe is and how amazingly well I think she's processed what happens to her.  Phoebe is apprehensive about going to the hospital tomorrow though.  She has said "poke?" sadly, several times.  I am trying to reassure her that I will be with her the whole time and try to remind her of the other fun stuff we will get to do, like see the trains and watch Elmo.  Phoebe said "dog," but I don't have the heart to tell her the dog won't come to the Bass Center.  Boooo.  

I am very much looking forward to seeing Dr. B!  Hopefully we will be getting a good report on Phoebe's joints.  She has also been in touch with me this week and sent me a link about being a parent representative for Stanford for the group Pediatric Rheumatology Care and Outcomes Improvement Network (PR-COIN). So I will learn more about that tomorrow.  

Moving on to a separate issue, Cordelia has been dwelling a lot on death again, and it's kind of hard.  She hasn't asked if Phoebe is going to die lately, but she is going through another mourning period of missing our cat that died a year and a half ago.  We went to a very fun Harry Potter potions party, but Cordelia became sad and said that she wanted to make a potion that would bring dead things back to life.  And that maybe Willow wasn't really dead, she was just sleeping and we could un-burry her, etc.  I tried hard to just say that being dead was just kind of like resting, you don't have to do anything or go anywhere or be worried about anything.  But once you're dead, you stay dead. (And I also believe that once you're dead, you're probably ok with staying dead.... bringing people back is always a mistake, whether it's Buffy.... Fulll Metal Alchemist.... never goes well.  ha ha.)

 Cordelia has also been bringing up when Jason or I are going to die and if she'll be with us, and kind of wrestling with the idea of how sad it would be to be without your parents.  Jason is of course, kind of blunt, "well, no one knows when they will die...." but I am just trying to reassure her that we all are going to live a long time and will all be together and see her grow up and see her future kids grow up (she wants kids) and that she is taken care of.  Anyway, it's not all the time, but she will still occasionally say things slightly weird things like "I'll love you forever, until we die," so I guess she is just internalizing her mortality or something.  I guess the hardest part is that it makes me wish I *had* told her some version of Heaven or spirits can live on, etc, just for something more comforting.  But I firmly don't believe in losing kids in euphemisms ("they're in a better place"), and was direct with her when we talked about death before, but now it just feels harsh to my own ears that she is also speaking about it so directly.  Obviously she has questions and probably some anxiety about it, I hope I'm doing my best to help her understand and feel secure.  I'm not sure what exactly I was told as a kid.  I definitely had some notion of heaven, not sure from where.  As an adult, I kind of have an undefined view--- nobody knows, so it's not really worth worrying about, but more likely than not, it's just an end.  I'd like Cordelia to have that rationale too, but at the same time can see how she'd miss the comfort of a story/belief like Heaven....I wish I had some deeper and more profound conclusion to bring to the end of this paragraph, but really, I just don't know what's best psychologically and hope I said things that make sense to her.

As I said, this blog tends to ramble, especially as it approaches midnight.  You can probably tell I'm tired and not looking forward to tomorrow.  I'm going by myself, which I'm fine with, but at the same time it is harder just mentally preparing for it.  It's getting easier, but at the same time it's still hard.  I mean, do you really get used to this?    

 

Lots of Shots Today

Last night we were supposed to do Phoebe's shot, but she randomly threw up.

We were about to prep it, but hadn't explicitly told her she was about to get it, though she's a smart girl, she maybe could guess what's up.  Cordelia (helpful big sister ) had also just mentioned at the dinner table that Phoebe was going to the doctor's  tomorrow and needed a shot. Anyway, Phoebe went into the play area, over to the reading chair (where we normally give her her shot), and immediately barfed all over the chair and her blankie (how traumatic).

Phoebe has never thrown up before, so she was quite startled.  Poor baby.

So.  Was it a fluke?  Did she drink too much milk at dinner (though I've seen this girl  down gallons of milk away with no trouble before)?  Was she about to come down with a stomach bug (like a kid in my class this week)? Or was she having a reaction to the methotrexate  Yes, one of the most common side effects of methotrexate is vomiting, either before or after.

She didn't have a fever, but I didn't really want to give her the shot if she was about to come down with a stomach bug and potentially make it worse.  :(  So we decided to wait until morning to see if she stayed settled or was up barfing all night.  It turned out to be the former.  She was acting normal by bedtime and slept all night. We can rule out germ related vomiting.

We did the shot in the morning, but then I started wondering if there was any conflict with her getting her shots at the pediatricians.... We were planning to catch her up on the vaccines we'd postposed at her 18 month appointment, and I didn't really want to have to reschedule another appointment.  I left a message with her rheumatologist and didn't end up hearing back until the end of the day, and the appointment was at 1:30, so we just went ahead and did the shots.  Dr. Jen checked and the only thing in the notes was No Live Virus vaccines, which we already knew to avoid.  We did Hep A and the 2018 flu shot.  3 shots today!! Poor thing!  Sorry, Phoebe!

Dr. B said that there is some concern that vaccines while on immunosuppressants could be less effective, but in general it does not really happen and it shouldn't matter if she had the shot the same day or 3 days later because with the regular dosing, the medicines are already in her system anyway.   I hadn't thought of it in quite such explicit terms, but makes sense.   Ultimately, right call, it was ok to get the shots done, which is good cuz we already did them ha ha.

Dr. B was pretty interested in Phoebe throwing up on the chair where she normally gets her shot.  Yeah, how does that not seem symbolic? She said that people tend to vomit from mtx for two reasons.  One is that it causes nausea.  Second, is that they then start having associative nausea and shot anxiety--- seeing a needle, smelling an alcohol wipe, seeing that particular shade of yellow, even hearing the word methotrexate can make people nauseous or vomit. 

I said that in general Phoebe seems really well adjusted to her medications (though she is starting to protest more as she knows what's up). She has a really fast recovery time and we don't notice any side effects the next days.  But I suppose it's possible Phoebe could experience some nausea and not be able to to verbalize it?  She's such a tough kid, I think she'd just power through.  We usually do the shot at bedtime so she can sleep through any reactions anyway.  

Anyway, I'm really hopeful it was just a fluke.  If not, Dr. B said we can discuss some meds to help settle her stomach.  Stay tuned.

Phoebe did great at her check up.  We love Dr. Jen!  She's the nicest!

She is 35.5", so almost 3 ft tall.  (87%)

She weighs 28 lb 9.6 oz (69%)

Head circumference 19.65" (95%.... she has consistently had a huge head)

I brought two Phoebe Steps magnets to give to Dr Jen, but left them in the car and had to go back to get them.  I dropped them off with the receptionist, but when Dr Jen's nurse Nancy (who we always see) came by, she asked her to give them to Dr. Jen.  Literally, Nancy's jaw dropped and she said "OH. MY. GOD. I love this!"  I told her she could have the other one!  😊

Infusion 6

Alison told me she misses my blog posts, so I'll sit down and make myself write one before bed!

Sorry for the lack of updates all through August.  I started to write a big post about All the Feels regarding Phoebe's birthday and her birth story and a further compare/contrast observation into her and Cordelia's personalities.... and then the post crashed and only auto-saved the first few paragraphs.  So that really frustrated me and it wasn't something I'd planned out, so it wasn't an essay I could easily recreate.  Maybe I'll return to the subject another day, but since then, this blog has languished.

Life has also been insanely busy.  Cordelia graduated and started kindergarten.  The good news is, she is loving it!  I am impressed with how many stories she is coming home with about her day, so she really is paying attention, even if I have heard that she sometimes does still lie down on the floor during gathering time.  She already has a little boy she plays zombies with and loves her teacher, so overall a huge success.  We used to have to drag her out of bed every morning, but now she is eager to get ready! Not sure if she'll feel that way after 3 years in the same place, like at OFS, but we'll take it for now!

I have also just gone back to work and Phoebe is adjusting fine to her longer days.  We are working hard to get out of the house promptly and having everything ready the night before.  So far, so good.

Jason also had his insanely busy time with college move in, and then today was my second day of school at my preschool.  And of course, Phoebe's infusion fell on the 6th as well.  I was really dreading the back-and-forth process of the day, the combination of rushing around and sitting in traffic, and just feeling generally overwhelmed.  In the last month, our entire daily life routines changed, I had to say goodbye to yet another close friend who was moving away, and move back into longer days and more responsibilities at work.  I was feeling anxious about telling my class parents about not being there for most of the 2nd day of school, but of course, once I finally sent out the email, everyone was very supportive.

Also, I'm back in a familiar classroom, which, although it has it's challenges, I think I will enjoy a lot.  All of my kids transitioned so easily, it was such a relief.  Only one friend needed a little extra love and support, and even that just kind of came in waves through the day.  Phew!

Anyway, best of all, Jason was knowing I was feeling drained and on Monday suddenly said he thought he might be able to get the day off to come with me to Phoebe's infusion.  It was such a weight off my shoulders to not have to go alone.  I mean, once we're there and we're doing them, I know it's really ok and I'm totally fine (and even better, Phoebe is totally fine), but it's never going to be something I look forward to.  And the driving really wears me out, so being able to drive with Jason totally saved my day.  Jason says he doesn't do much besides sit there at the appointments because Phoebe is always wanting me to hold her, so basically he is being my emotional support animal.  LOL!  That made me laugh, but really, just his presence made me feel so much better.

Phoebe was completely exhausted and needing to nap when we left, so this is the first time she had a melt down over going to the hospital.  She cried and said no and ow and acted really sad and scared. Awwww.  Usually she has been able to think about positive things that she like, like seeing the elephant topiary.

Once we arrived, she was feeling better from napping in the car.

Our infusions have been moved to the Bass Infusion Center for Childhood Cancer and Blood Disease, so we will no longer be going to the short stay clinic.  It's just around the corner,  of the ward, but different nurses and rooms.

When we went in, an older boy who was maybe nonverbal was having a bit of a melt down in the waiting room.  My heart went out to the mom, she was really struggling, while trying to be very loving and reassuring.  Phoebe was kind of alarmed by the very loud screaming and crying.  The nurses weren't ready for us, so they quickly suggested we go out and play at the train room just outside.

"Beeyah!"  

That was definitely the right move and put Phoebe in a good mood right away.  It was some time before we got called in, and then it was more waiting through the numbing patches and getting everything set up, pre-meds, etc.

The Bass center is a little more lax on protocol.  First off, we got an actual bed, not a crib, which meant Phoebe could actually sit with me! Yay!  At one point they were like, oh yeah, I guess we should have you sign a waver or something since she's so little, but no one bothered.  They also didn't put any sensors on Phoebe's back or toes to monitor her throughout the stay.  When it was time to do Phoebe's methotrexate, the nurse put on purple "chemo" gloves, but didn't suit up like the nurses in the Short Stay Unit.  I commented on it, and the two women in the room laughed and said they were usually used to handling big bags of chemo, and this seemed like such a tiny amount to them, it didn't matter.

The TV is hanging from the ceiling above the bed, which Phoebe did not like, because she couldn't do the touch screen.  You also couldn't access the Internet, so no Youtube and no Sesame Street.  (Eventually she watched some on Jason's ipad, but we didn't have a super great connection).  We watched Elmo in Grouchland again, but it doesn't really hold her interest as it's more of a story.  She watched parts of the Little Mermaid and Moana.

They did not have forehead scanning thermometers, so they had to do it under her arm.  Most of the nurses had trouble with Phoebe's blood pressure.  It kept reading high, but then they would reposition it and do it again and it seemed ok.

One sad thing is the therapy dog does not visit the Infusion Center.

We did have a pretty nice Child Life person come, a lady named Jackie who was in a wheel chair! (Glad it wasn't the weird guy).  She brought Phoebe some toddler toys, which was great.  Phoebe really liked a spinning dinosaur thing too.

 Jackie also brought a toy IV and we played doctor on Snuggle Puppy and attached the IV to him.  Phoebe really liked that and said "POKE!" and wanted to keep doing it.  I think it really helped prepare her for the IV placement.

Phoebe did really well for the IV.  The nurse was also extremely skillful.  When it was time to take it out we had a different nurse, but she commented on how well it was placed and wanted to know which nurse or if the vascular team had put it in!  It did bleed a lot, I noticed, but maybe she got it right in the vein or something?  I was most happy that it was done successfully in one try, unlike last time.  Phoebe fussed a little and only tried to move once, but other than that, held very still!  Everyone was amazed with how well behaved she was all day and we got so many compliments on her precious curls.

Phoebe took this picture on my phone and now I think it's artistic.  #childhooddiseases  

We shared our room with a 7 year old boy who I think had cancer.  💔  His mom said Phoebe was so cute and that seemed to gross him out and he wanted to know why she thought that.  She said, "All babies are cute.  You were a cute baby too."  He did not want to be described as cute, ha ha.

My friend's husband has been hospitalized all week due to pneumonia, complicated with Cystic Fibrosis.  He'd hoped to not still be there on Thursday, but when I messaged them, he unfortunately was.  So we got it figured out so that he could go through security and visit us.  I hadn't realized, but the main hospital is actually connected to the old wing of the Children's Hospital--- where we were!  So it really was within walking distance.  He came as we were finishing up, and it really brightened our evening to be able to see a friend, even under sucky circumstances.  He and Phoebe are both warrior IV buddies, as he'd brought his with him.  He is not contagious any more, but doing lots of breathing treatments and therapies.  I hope he can go home to his family soon.

Phoebe was kind of zoning out and ready for a nap when he arrived, but after she was allowed to get up, she got a lot more energy and started running around and giving out hugs.  It was super adorable.

We did not leave until around 7 pm.  From a 1:30 appointment start time.  There were definitely delays-- the IV didn't even get placed until 3:30, and a few times they were having computer glitches of some kind.... so overall, a very long day.  But the bonus was traffic had lightened considerably.  If we'd left at 5, we still would have been picking up Cordelia at 8:30.  So now we are thinking a later start time actually might be more manageable.  The tricky part is if Phoebe sleeps on the drive home but then wakes up and thinks it's time to play.  But today she was so worn out, she let us transfer her straight to bed with only some minor stirrings.

Well, now it's quite late and I've got to get to bed.  Hopefully there won't be as long a gap between posts now.

Our Little Gryffindor

A bit unexpected, but Phoebe loves snakes.  Actually, I don't know how much she actually loves snakes or that she just likes the idea of snakes, but Phoebe and snakes is definitely a thing.

This all got started months ago when we went to the pet store to buy cat food and I took a photo of Phoebe and Cordelia looking at snakes in their tank.  The snakes were actually quite active and moving around.  I feel like every time I've looked at snakes in pet stores they are sleeping, but since Phoebe has taken an interest in them, I see them moving around and being much more active!  Who knew?

Anyway, Phoebe would always pick up my phone and say "hisssssssss", asking to look at this infamous photo of the snakes:

After another to the pet store, I took 2 videos of the (again) active snakes for Phoebe.  We have watched these videos many times.  Pretty much every day Phoebe grabs my phone and says "hisssssss".

So that is how I came up with how to celebrate Phoebe's birthday.  I didn't want to have a big party or anything, so we just celebrated with family.  We did it a bit early, as her cousins are going to be out of town for a trip in the next week.

Phoebe shares her birthday with Harry Potter, July 31st.  And of course, if you know the books, one of the first ways that Harry realizes he has magic is when he makes the glass disappear and lets a caged snake free.  Later, it is determined that Harry is a Parseltongue, a rare talent that allows wizards to speak to snakes!

As she's still young enough to not protest, I dressed her up in a little Gryffindor-inspired outfit and took her to the East Bay Vivarium, a big reptile store in Berkeley!

We also went to a local Mexican restaurant for lunch.  I'd never eaten there before, but my director who lives in Berkeley had told me about it, and it was within walking distance--- so very convenient.  I thought it was yummy.  They were a little light on their dessert supply when I went to order, but there was enough to go around with flourless chocolate cake, sprinkle cookies, and Mexican wedding cookies, so I think everyone was happy.

Phoebe was so excited when everyone began to sing to her.  I swear, she has been waiting for that moment.  She even immediately blew out the candles right on cue.  Then she said "Biyah" because she wanted everyone to sing again.  Lucky baby, just a few more days and she will get her wish!

We then walked a couple blocks and explored the Vivarium!  It was very neat, with so many snakes, turtles, lizards and frogs, just as you'd expect.

Handsome Snake

This is a burmese python, which is what was used in the film for when Harry makes the glass vanish.... watch out!  Off to Brazil.... thankssssss, amigo!!

Cute little guy!

With Meme and Papa.... it's impossible to get both of my kids looking at the same time....

Cordelia really liked this giant monitor lizard... named Elmo

HORRIBLE!!  (Cordelia loved it)

Cute!

Cousins bonding over reptiles

Phoebe really liked this guy!

He wanted to say hello and did a little dance!

Dancing Lizard

Phoebe got her own camel back water backpack for her birthday from her cousins' family.  

Phoebe loves drinking out of Jason's so it was the perfect gift!

She couldn't wait to wear it and drink from it!

I hope it was a fun, unique outing for her birthday!  I wasn't feeling up to organizing a party or beach day, so this felt just right.  Tomorrow is her actual birthday, but we are headed to a farewell party for my coteacher who is moving back to France.


Ok, before we end, I have to confess, one of the main reasons I dressed Phoebe up like a little Gryffindor was because I wanted to make something this for JIA awareness!  Phoebe is the bravest person I know for sure!!  I am kind of wanting to tweet it at JKR, but kind of struggling with character limits to make a post.  Facebook is much better for me in that regard!

Happy Birthday Phoebe! I can't believe when you wake up, you will be 2!!!