Feb 25

If I was going to punish someone, I would say that having to administer eye drops to an adorable, tragic toddler every hour would be suitable recompense for most crimes.  It's just as awful as it sounds.  Phoebe hates it and doesn't open her eyes.  We're putting the drops in the corner, so maybe when she opens her eyes a bit of medicine can get in.  But this is basically an almost impossible task to hold down your baby and wait for them to stop screaming and open their eyes.  I guess that's good that we're doing it hourly, because very little is probably making it in..... sometimes, but you just gotta hope for the best.  The hourly one is a "gel", so it's not quite as liquidy and stays on the eyelid when you drip it out.  But man, it sucks.  It sucks slightly less than when I was just imagining the horribleness of having to do this, because I'm actually pretty good at tuning out screams when necessary, but man, still sucks so much.

I also joined a Uveitis Kids facebook group and got lots of sympathy.  Most people's kids are older or not needing drops as frequently.  Their advice was to try and do drop from behind and acting out other family members getting drops to "normalize" it.  Again, everyone was very kind and another mom even took time to privately message me with her experiences giving it and MTX to her 8 year old.

I am also trying to be as honest with Phoebe as much as I possibly can through this process.  One parenting/child care philosophy that truly resonates me is coming from a place of Respect.  I try to treat children as whole beings, who can understand what is going on around them, even if they are too young to verbalize it.  I know that when I go to a doctor or a dentist, I always hate it when they just start doing stuff to you and not explaining what is happening or why. If someone suddenly threw me down on a bed or on the ground without warning and gave me a shot or dripped liquid in my eyes, I would hate it and scream in terror too.

So I always make a point of telling her about her eye drops before we do it.  I let her hold the bottles and told her they are to protect her eyes.   When I am not doing it, I have tried to mention to her, "do you get eye drops in your eyes?" and she says "yeah."  I guess telling her about it before hand does have the side effect that it can build up a little anxiety that it's about to happen, but I just think (especially because we're doing this to her every hour), it's still better than being grabbed and held down with no warning or explanation.  Anyway, I can't say it's really working (yet....it's only the first 2 full days, though I don't foresee it getting better) because of course she still screams, but it's a little philosophical tenant that is keeping me going through all this awfulness.  When I'm giving her the drops, I try to validate her and say, "You don't like the eye drops.  They're wet.  They don't feel good on your eyes. I'm sorry I have to give you eye drops, baby! I don't like them either!"

We are rewarding Phoebe for eye drops with bubbles.  I'm really glad that is working and we've found something that doesn't have to be a food treat, though if food was going to help, she could have all the treats she wants, in my opinion.  She doesn't really understand "rewards" as a motivator to get through something bad yet, so she just needs to be comforted and have something to take her mind off it once its over.

Phoebe's ANA results did come back Positive.  No surprise there, as we know from her eyes!! Poor baby!

Ok, let's get to some better news.  Phoebe is definitely much more mobile since those joint injects!  She is going so fast!  She got out of bed and stood all by her self again this morning!  It's great to see her putting weight on her legs so early.... I can't even express how HUGE of an improvement this is.  Here, you can see for herself, compared to previous videos!  She can even bend down to pick up toys!!  Go Phoebe!!! Thank you Dr. B for  giving my baby her movement back!!

In other bad news though, germs are hitting our household.  Phoebe is acting like she has a cold, but Cordelia is getting sick after never completely recovering from her last cold like 3 weeks ago.  I guess she must have allergies.  We have been doing Children's Claritin for her, but she still has symptoms, but I hate to think how congested she would be with nothing.  This past week, she has started to cough, possibly due to post-nasal drip, and then as of Friday she started running a fever and coughing NONSTOP.  Saturday her fever started getting really high.  Ok, so I know we have a forehead scanning thermometer and it always seems that this particular model "overestimates" it's temperature, so I know it's not completely accurate to a degree or to, but this thing was flashing red and saying 105* on Saturday night.

((Cordelia ALWAYS gets high fevers, I don't know why.... that's her go-to sick thing.  So I wasn't completely freaking out, like the one time this thermometer tried to tell me she had 106 and I took her to the doc straight away.))  For now, we just threw her in a bath and gave her medicine and waited through the night.

I took her to Urgent Care on Sunday morning.  It was very easy, I got an appointment online in seconds without having to talk to a live person or wait on hold (yay!).  Jason was of the opinion she could probably just rest it out, as this isn't too different from her normal course of being sick, but with everything going on with Phoebe, nope!  I'm in over-protective mama mode, especially with Phoebe starting an immuno- suppressant drug next week.  Coughs and colds are just going to be a matter of course, but I'm still going to be extra cautious.  My niece ended up hospitalized with a serious case of pneumonia with just such a similar start.

We had a very positive experience at Urgent Care.  Cordelia was nervous and didn't want to come. The nurse was great and held her hand to walk her to the room and took her vitals.  I liked that she was building a report  right away.  I'm clearly getting overly critical in my nurse-opinions, so I will give credit when I see it's due.  The doctor was also great.  I did make a point of saying that I was mainly here as a response to everything going on with my one year old being diagnosed with an auto immune disease.  But she still thought Cordelia was coughing a lot and for a long time, several weeks without relief.  Cordelia demonstrated by coughing through the whole appointment.

Cordelia had a nebulizer treatment, where she got a dinosaur face mask and breathed in some medicated steamy air for 10 mins.  This was new for us, hope it helped!

Then she was prescribed an inhaler and liquid azithromyacin for 5 days for a chest infection/bronchitis.... I'm not sure if she actually HAS bronchitis, her cough is very dry to me, but it is causing her a lot of disruption.  And her nose is running without end, so it could just as easily be a sinus infection.  Hopefully Phoebe can beat this without too much mucus build up, like Cordelia is having.

  They also swabbed Cordelia's nose for pertussis, which I'm sure is negative-- she's been vaccinated-- but they said with Phoebe at home and starting MTX, let's not be too careful.  So, overkill, maybe, but I'm totally ok with it at this point.

Our house is basically one big pharmacy, isn't it? With Cordelia taking Clartin and Motrin and now getting to try an inhaler + spacer + mask.  And Phoebe is on 2 types of eye drops and Naproxin.  Oh and today we started a crushed up half tablet of folic acid.

Cordelia's fever was better by day, but has jumped up again at bedtime.  She is running super hot, while complaining of being cold.  Poor thing!

Now the only thing I'm waiting for is for me and Jason to spike a fever and get inconveniently, but inevitably, sick as well.  The only question is who will go down first?! We just can't catch a break!!

Feb 24

Ok, I couldn't leave yesterday's sad post up alone for long!  So let's get to some good news right away!

Phoebe woke up calling for me, but not crying.  When I went in, she started trying to get out of bed by herself.  She almost did it, I just had to help a little bit, to get around her railing.

And then, she stood!

Phoebe was standing, after getting out of bed, first thing in the morning!!!! This has never even happened before!!!!!

I'll try and take a video of her later, but she is definitely moving with speed!

Feb 23- UVEITIS DIAGNOSIS

If you are reading this, I wish I had some better news, but today was horrible.    

I was messaging with another mom I know yesterday and she said I was in a "parenting hell".  I said to be honest, I didn't feel like this was hell.  It SUCKS, majorly SUCKS, but there is obviously another diagnosis that I fear much more... which honestly isn't even off the table for our future given some of the medicines we may be trying, or just the fact that JIA individuals are more prone/susceptible to it....

But today was the hardest day for me since this whole thing began.

This morning I took Phoebe to the pediatric optometrist to have her checked for inflammation in her eyes.  I don't know why, but I just was really optimistically thinking that they were going to tell me her eyes were ok.    

Of course, Phoebe hates doctor's offices now.  She was ok in the waiting room, but as soon as the sweet nurse called us in, she started to cry.  Then, she got a spray in her eyes to dilate them.  She HATED that, who wouldn't.  Then we got to go back out into the waiting room for a couple of minutes, but then having to get called back in upset her yet again.

Well, then we saw Dr. C.  She was GREAT.  I think because I work in child care, I can always tell when people are really good with kids, and she had all the tricks down to get kids to cooperate.  She did everything to me first and then got Phoebe to do it to.  She said that today was more about getting Phoebe comfortable and had no real expectations of being able to examine her, that might just have to wait until the next visit.  But she was so good with Phoebe, she got her to cooperate (mostly) through everything.  Phoebe put her chin on the bar to rest it (though I had to tell her to put her nose into the apparatus because I didn't think she knew the word chin well enough--- and that totally worked) and was able to stay there long enough for Dr. C to see that her eyes were terribly inflamed.  Later I learned the term: uveitis.   

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Below I am including a description from the website http://www.kidsgetarthritistoo.org/

(This is written by Kelli Miller and Mary Anne Dunkin)

"Eye problems can be a devastating complication of childhood arthritis. The same inflammation that causes painful, red, swollen joints can silently strike your child’s eyes. You usually cannot see that your child’s eyes are affected, and a young child may not be able to recognize that they are gradually going blind.

“The eye disease associated with juvenile arthritis can cause serious complications and even blindness, if not detected in time. Unfortunately, there are few [noticeable] symptoms, so it’s really very important for your child to have regular eye exams,” says David Epley, MD, a pediatric ophthalmologist in Kirkland, Wash., and a former president of the American Association for Pediatric Ophthalmology and Strabismus (AAPOS). 

Below, we discuss some eye problems commonly diagnosed in kids with juvenile arthritis and provide information regarding eye exams and treatment.

Uveitis

Uveitis is a serious complication of juvenile arthritis and the most common non-joint-related complication seen in kids with the disease. It requires immediate medical attention and prompt, early treatment to help prevent vision loss. “Children who are diagnosed with advanced uveitis have a high risk of complications,” says Wendy Smith, MD, an ophthalmologist at the Mayo Clinic in Rochester, Minn.

The term “uveitis” is used to describe inflammation in one or more of the inside structures of the eye, which include: 

• Iris - the colored part of the eye that controls the amount of light entering the eye.
• Ciliary body – controls the lens shape, helps the eye focus and makes the liquid that fills the front of the eye.
• Choroid – a layer of blood vessels in the back of the eye.
• Retina – the thin tissue lining the inside of the back of the eye
• Vitreous humor – the clear gel that fills the inside of the back of the eye

The type of uveitis your child has depends on the area or areas of the eye affected: 

• Anterior uveitis (including iridocyclitis and iritis): This is the most common form of JA-related uveitis. Inflammation occurs inside the front of the eye (the anterior chamber) or in the iris and/or ciliary body.
• Intermediate uveitis: Inflammation of vitreous humor.
• Posterior uveitis: Inflammation of the retina and/or choroid."

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Phoebe's eyes did not fully dilate and she described the iris as "Sticky."  

I asked how often she saw this and she said Phoebe was the youngest she's seen, but then at this age they are also particularly hard to examine.  

Dr. C. prescribed a daunting medicine regime: 

• cyclogyl eye drops 3 times a day for 1 week, then once a day for the second week to dilate the eyes to absorb medicine better (these may burn) and
• lotemax eye drops, topical steroids, to be administered HOURLY for when she is awake for two weeks.
• she also wanted to put P on oral liquid steroids to be a systemic medication, but would need to call Dr. B to determine the dosage for P's weight and age

This just crushed me.  We are going to have to hold our baby down and force her to take eye drops for every hour for two weeks, until our next appointment.  She was literally considering having me wake Phoebe up in the night to give her eye drops.  She took pity and decided not to.

I guess even with Phoebe's pain and the risk of permanent joint damage, due to the JIA, this is the first time I have felt that Phoebe was really very, very sick.  Her eyes must be very bad and in real danger!  

We also have to practice having Phoebe put her chin on a table and practice holding a pen or something, like a pen, right up in front of her eye (without poking her eye) so that they can check the pressure in the eyes.  If the inflammation causes too much pressure, she can get cataracts.  But she can't be on the steroids for too long, because they will also build up pressure.

She said that there is always a spectrum of JIA and how they respond to treatments, some people do and some people don't and require other methods.... I really hope Phoebe responds!!

I dropped Phoebe off at Meme's and went to work, kind of in a daze.

After school, I went with Cordelia to pick out a first birthday gift for a friend's party tomorrow.  While we were shopping, Dr. B called me.

She said that given the findings of Dr. C, she is not recommending that we add an oral steroid.  That would be too much steroids for her whole body, building up pressure, with negative effects.  Instead, she thinks it is time to start Methotrexate (MTX), which should also help with Phoebe's eyes.  She still didn't have the ANA results from the latest labs, but Dr. C said she would bet $100 that it will be positive.  

She started going over some of the side effects/ risks involved with MTX.  It is an immuno- suppressant, used in chemo therapy.  Phoebe will be taking a much lower dose than a cancer patient would though.  It can have an impact on liver function and blood counts, so Phoebe will have to have regular labs.  Phoebe will be more susceptible to infections and she will not be able to have live-virus vaccines (we've checked; she was up on all her shots except the Hep A).  The labs and physical exams will also be monitoring for signs of malignancies, which can develop in her blood or her lymphnodes.  

This is just so scary, but from everything I've read, many adults today who had JIA say how much they wish they had had the treatments they have today when they were younger-- it could have saved them from permanent damages.  Just gotta cling to the science and hope the risk is low enough and trust my doctor knows her shit.  Which she seems to.

Along with the MTX, Phoebe will need folic acid.  She started talking about having it in a tablet and crushing it, or getting a children's gummy or chewable vitamin that contains it.  

MTX can also cause nausea, head aches, and dizziness. It can cause sores in your mouth.  Some people start to feel anticipatory nausea, when they know they are about to get the shot.  

Around this time, Cordelia said she needed to go poop, so I got a little distracted taking her to the bathroom!  Dr. B suggested she call back later; I said after 4 or 5 was good.

I took Cordelia out for a snack.  She got chocolate scones at pete's coffee!  I wanted to have some time to just chill with Cordelia, but it was so hard to focus.  I feel like she is getting the short end of the stick when it comes to my attention lately.  Understandably, of course, but it still sucks.  Even as we were sitting there, my brain was thinking of questions to ask when Dr. B called back.  Then, as we were finishing up, Dr. Jen called to check in.  She said she keeps getting notes about Phoebe from other doctor's and she keeps being like, "Oh, crap.... Oh, crap.... Oh, crap!"  She wanted to know how I was and I said this was my lowest day yet.  She said when she saw the HOURLY eye drops, she thought that had to be some sort of typo because HOW?! I asked her about some dry skin Phoebe is having on the back of her thigh, she said it was ok to do a 2.5 % cortizone cream we already have....

Let's see, then I started to drive to the pharmacy to get Phoebe's eye drops, but my phone died and my car charger has a split wire and only charges half the time.  I just need to replace it.  With no battery, even plugging it in, it just started to endlessly loop through restarting and shutting down until it froze.  Traffic had started to build up and it was getting close to 4, when Dr. B could call back, so I just went to Jason's parents.  Found out Phoebe had napped like 30 mins the whole day.  Why is she so hyper?!

Jason's mom had seen me pretty up set after the eye appointment and had a nice chat with me about how we are doing everything we can and we can't change her genetics and reminding me you're allowed to cry and have bad days.  Yup and this is a bad day.

With Phoebe so tired, I just went home and asked Jason to get her meds later.  But then he realized he didn't have her health spending card with him, so he'd have to come home anyway.  

Dr. B called and we discussed more things.  Phoebe started to freak out so I bribed her with candy to be quiet so I could talk.  We start to talk about MTX and getting the prescription filled and some various scheduling and pharmacy complications came up.  She had me call around and then she would call back. Once we had the meds/syringes, we can come to Palo Alto to have a lesson in how to administer the injection.  Sounds like we are going on Tuesday.  A nurse is going to teach us, but Dr. B plans to drop in to see Phoebe; we are also keeping the March 28 th appointment.  Phoebe is getting A LOT of attention--- doctors are worried about our baby.  That doesn't feel good!  

Jason arrived to get the pay card, and I asked if he'd take Phoebe with him to get the prescription so that I could really focus when Dr. B called me back.  I thought he'd be gone a very short amount of time...

Dr. B did call and we are just going to move all our prescriptions to Walgreens because CVS just doesn't contract to stock JIA related drugs enough apparently!  She then went over all of Phoebe's labs that were back so far.  I can't really interpret them.  Phoebe is a little anemic, but not super concerning.  She is RF Negative, yay. Her inflammation levels are elevated, some have slightly gone up since January.   I'm so tired now I can't think of everything.

Jason ended up getting stuck at Walgreens for FOREVER.  One of the meds was going to be like $175, but the pharmacist gave him some sort of card to call and activate and suddenly it was $25.  WHAT. THE> ACTUAL>FUCK.  How do people come up with these prices?!  

While he was there, the MTX prescription came in and they were able to fill that too. But poor Phoebe was stuck waiting around (at dinner time, though she'd had a lot of snacks) with like no sleep.  I thought they'd be back in 20 minutes but they were gone like an hour and a half.  

Also during this time, I had a lady I was texting with come by to pick up Cordelia's old toddler bed from our Craigslist exchange.  

I kept texting and calling Jason, I couldn't believe he was STILL at Walgreens and was basically just about to have an anxiety break down. (It didn't help that I totally over caffeinated with that iced tea, which I didn't even finish, but it still gave me the jitters!)

  I just wanted them to come home!  Today was really too much.  

We gave Phoebe 1 does of eye drops before bed.  Of course, she cried and cried.  Then I put her to sleep, she was out in minutes, but has already woken up crying once---- I forgot, on top of it all, Phoebe has a cold with a runny nose, so she can barely use her pacifier.  

And Cordelia is still coughing from like 2 weeks ago. I can hear her coughing in her sleep.  

Tomorrow we get to start the hourly eye drops.  Definitely readjusting my idea of parenting hell, today.  I hope once we are actually doing the eye drops it won't be as bad as my imagination, but I really don't think that will be the case.  

PARENTING HELL DAY!!!

Hopefully we can get to the better days ahead sooner rather than later!  

Feb 21- Joint Injections

We went to the Lucile Packard Children's Hospital at Stanford.  The hospital is brand new, just opened in December!  It was huge and a very beautiful campus.  The decor had a sealife/bay area animals theme to it.  On the floor, there were beautiful mosaics of seals or sting rays.  On the walls, shore birds.  Every place you went, there was something wonderful and artistic incorporated into rooms.  Everything was very open and bright, thanks to huge windows for natural light.  Parts of the hospital were still not even finished--- I could see they were still constructing courtyards and playgrounds outside!

We went in and got checked in at security.  They gave us sticker badges that also had our photos printed on them.  Jason was (minorly) irked that his said VISITOR, but the woman checking mine in changed mine to say MOTHER!  Phoebe also got a copy of my sticker, even though, as Jason pointed out... his is the last name that matches her's!

We went into the Treatment Center.  We then also got wristbands to match one made for Phoebe.  We are also being followed around by a typo that her middle initial is G, not Q, and had to have that corrected for the third time!

Phoebe liked playing with toys in the waiting room and watching some disney channel.

 

But as soon as we got called in to the exam room, she was upset.  She has learned a new word over the weekend: No.  She immediately started saying "no, no, no, no, no, no!" and was actually shaking in my arms.  She did not like being weighed and did not want to take off her clothes or shoes.  A new suffed bear from a toy box wasn't going to help.....

The nurse asked if we thought a crib would be better for her than a hospital bed.  I assumed that she meant something like a pack n play, and said no. I thought the bed would be fine for her to sit on and that way I could hold her or have her in my lap.  (This became a minor problem later, when we found out she did need to be in a "crib" style of bed, but no one had told us that!)

We put on Bolt in the background (it had dogs!) and many, many people came in and out.   One nurse listened to her breathing and checked her oxygen levels with the sensor with the red light that they taped on her finger (for the MRI , they only put it on her toe).  Nurses came in and conferred over our consent forms, I had to initial a couple of things where they added more details.

A nurse came and talked to use about anesthesia.  It was only then that we learned that we would not get to be with Phoebe when she went to sleep.  This was a huge shock for me, especially after our MRI experience, where everyone talked us through each stage in so much detail and included us as much as possible.  Furthermore, it seemed like this was not even a standard thing until recently.  Several nurses and even the anesthesiologist were like "oh yeah, we USED to be able to let parents come, up until like last month or at the old hospital" or whatever.... What kind of amazing new hospital is this supposed to be if it separates parents from children before the "last" moment?

Because it seemed likely that Phoebe would be upset to say goodbye to us, the nurse told us that we could give her a sedative medicine, midazolam, to help her feel more relaxed, sleepy, less anxious, and probably not even remember the separation.  She also said we could have a child life specialist come in to build a report with Phoebe and be the one to go with her.  Or we could do both.  I asked her what she recommended, and she said given Phoebe's age, probably best to do both.  So someone came in and gave me a syringe of hot pink medicine to give to her.  Phoebe was good and drank it all at once, even though they said it had a metallic after taste.  They gave her a wet wash cloth to wipe her tongue.  She didn't really do that, but didn't seem bothered.

The child life specialist Christine came in, and she was my favorite person of the day.  She blew bubbles and Phoebe loved it!  She gave Phoebe stickers to decorate her mask and a mask for her new bear.  She was sweet, but honestly, she spent very little time with Phoebe at all.  She also didn't show Phoebe a picture of room where she would wake up or anything, like we had with the MRI.

The anesthesiologist came in and I also liked her, but not as much as the woman who did the MRI.  I guess we kind of knew it already, so I didn't have any questions.  She said she wanted to find out if I could go with Phoebe, because it seemed sad that I couldn't!

A rheumatologist came in, not Doctor B, but she would be there with her for the procedure.  She examined Phoebe and drew smiley faces on her knees and her left elbow.  She said the elbow was so tiny, it would be hard to inject, but they would do their very best to get the right spot.   I asked her if she thought Phoebe's feet seemed puffy, but she didn't really think so.  Phoebe hadn't had her Naproxen that morning, but she said she would get some tylenol in the IV and to just do the Naproxen in the evening.

The room felt crowded, with people coming and going.  Pretty much everyone agreed that I should be able to go with Phoebe to be put to sleep!  I said I didn't want to be a problem, but if it were possible, it was what I wanted....just wheel me in with her.  I guess part of the problem was they were taking her to a completely different part of the hospital, but it sucked that I couldn't walk with the gurney or even ride with her.  Anyway, I got told no in the end.

But Phoebe was in a pretty relaxed mood by then, so it was time to go.  Then there turned out to be another miscommunication issue, because another nurse showed up with a "crib".  This was just a smaller bed with side bars that went up.  The team in my room was like--- do we have to switch this baby to a crib?? She is saying goodbye to her mom and dad and happy right now; if we move her, that could change.  But the nurse was like, "If they're under 3 years old, they have to be in a crib."

Um, then why didn't the first nurse of the day know that when she asked me if I wanted a crib?  It wasn't even a choice!!  I did NOT like that she had to be switched beds in the middle of the hallway, right before our separation!  I moved her and the pillow and blanket she was sitting on all at once and she fortunately did not get upset.  Very fortunate indeed! Another child could easily have felt disrupted and it could have made the separation harder.  Christine the child life specialist stayed with her, but if Phoebe had started to cry, I would not have trusted her to soothe her at all because she'd barely been around her.

Anyway, Phoebe got wheeled out of two big doors.  She was smiling and happy and Christine was blowing bubbles.  And then the doors closed and she was gone!

I got choked up and the bossy nurse who had insisted on the crib handed me a whole box of tissues.  Then we got taken out of the Treatment Center and back over to some station in the lobby.  There was a big screen behind the station.  Phoebe was given a number, 7.  As she went through the treatment, it would post updates on her status.

At first it said IN ROOM, meaning she was being prepped.  Then it switched to PROC START to show that her procedure was in process.  Then at the end it would say RECOVERY.  It had this for all the other children undergoing procedures as well.

Jason and I got some food from the nearby cafeteria, as we hadn't really had breakfast.  Then we were called into a consultation room to wait to see Dr. B.  The staff reminded us to take our door card with us when we left, and even if the doctor said to wait in the consultation room, to still come out because the doctor's just don't always know the procedure.

In the room it had a couch with the greatest Charlie Harper print on it.  Jason and I had so much fun identifying all the animals, it was like a game! I'm kind of obsessed with it. I bet kids would love it.

Dr. B said that everything went well, in fact doing the blood draw probably took just as long as the actual injections.  She said that Phoebe's right knee was indeed worse than even one week ago.  It is crazy to me how this thing just keeps progressing and Phoebe keeps deteriorating every week since it started.  We are not to bathe her for 24 hours, just sponge bathe or shower, not submerge the injection sites.  She also said she was very concerned about Phoebe's fingers, which she couldn't inject, but she wanted us to start doing PT and OT for, along with the legs, before she lost too much mobility.  She also brought up the possibility of doing serial casting to straighten Phoebe's leg (similar what I had as a kid to stretch my achilles' tendon), but she hoped we wouldn't have to do that as part of the PT.  We are going to stay on the Naproxen until March 28th to let it build up in her system.  Then we can discuss doing more.

She also wants to check that Phoebe has had all her vaccines, as I had mentioned we had decided not to add the 18 month shot yet.  She said that was the Hepatitis C (?) I think, but if Phoebe was missing any vaccines with a "live virus" in them, like an MMR, she would need to get that ASAP, because you cannot have live virus vaccines when you are on the biologic drugs. So she is going to check with my pediatrician.  Hep C would not be a problem though.

Ok, so now just waiting for the next referrals to call me, and stay on course until March 28th!

Next, we got to go up to the recovery room.  Phoebe was very sleepy and took a long time to wake up.

She was much groggier then too, kept flopping her head and arms around.  Because she was in the little bed ("crib") I couldn't sit with her, so I sat in a swivel chair with her in my lap.  Phoebe was upset about all the various monitors taped to her and her IV, which was done in her hand, not her foot, this time.  We gave Phoebe a popsicle, which was very messy and covered her in red streaks, as she wanted to grip it by the icy part, not by the stick.  She cried if you took it away from her.  

Our nurse was not super engaging, and prompted us to get ready to leave.  The anesthesiologist did also stop by and said she wished she had a video of it, that Phoebe stayed happy the whole time up to going to sleep.  She said she hoped she wouldn't see us often!  Me too, my friend, me too!

Finally it was time to go and another new nurse came to show us out.  She took us through many passageways (I hadn't realized how far we came!) and we popped back out in the main lobby of the Treatment Center.  They had Mickey Mouse on TV and Jason and I stopped to discuss how we should use the bathroom one last time before making the drive home.  We thought we were done, but then the nurse was suddenly back with us and was like, "Can I please show you where you're supposed to go now????" in a really irritated voice.  I apologized and said I thought we were done, now that we were back in familiar territory and that we were just discussing bathroom breaks, etc..... she was unmoved.  She said, how about she just show Jason then, and took him all the way back out to the front and showed him how to go back through the elevators we'd already come through.  I guess she had to complete her task, but it was super unfriendly and pushy.

Overall, our experience at this hospital was WORLDS different than the smaller hospital in Walnut Creek.  Maybe because having an MRI is such a big deal, vs this hospital which is handling all different types of procedures for many more patients.... but I felt like we had such impersonal care and there were many communications problems along the way:

Even before our appointment, no one even called me to say our check in time would be at 7:30 am, until after 5 pm the night before!

Then, there was the miscommunication problem over the bed vs crib gurneys and the awkward last minute forced transfer.

No one went over the anesthesia process with me ahead of time, apart from instructions not to give Phoebe solid food after 12 am and no liquids after 5:30.

No one warned me that I wouldn't be with Phoebe when she would be put to sleep.  Which, if we hadn't had the MRI experience, maybe I wouldn't have expected that at all, but believe me, it made a HUGE emotional difference for ME to be able to hold her and tell her I'd see her when she woke up.  And it was frustrating that everyone in the room was agreeing with me that they wanted me to be with her, but then they couldn't.

We were even instructed on having to remind doctors to tell us when to leave the consult room.

The nursing staff ranged from okay to bossy, or even frankly rude.   None of the nurses we met today gave me that "warm and fuzzy feeling" of someone who just wants to take care of you and your baby. I was really missing that.  And we met so many nurses throughout the morning, there was little consistency in any person following our case.  Which is fine, but it didn't help us feel connected.

As Jason summed up, "They prioritized procedure over care."

I am sure the procedure went fine and I'm glad that Dr. B was able to do it herself (there was a chance we'd see someone else) and that she was able to consult with us after.

But for all that they have this fancy shmancy new building, they need some serious polish.  Having just come from Walnut Creek MRI experience, it definitely colored how I  perceived things, and in comparison, it did not hold up at all.  Get it together, Stanford!  

When we got home, Phoebe saw a pack of cookies, so she started lunch with lots of cookies. You earned it, kid!

She was supposed to just veg out, so we watched Sesame Street, and later I tried to make her take another nap.  But she wouldn't lie down.  She said she wanted to eat, so maybe she was still hungry.  We put her to bed super early, but then Cordelia didn't fall asleep until after 9:30--- for no good reason!   Phew! I'm exhausted!  Today was so draining!!

Feb 20

Let’s see, Monday morning, Phoebe was fussy when she woke up, but today (Tuesday) she was not.  I am having much better luck giving her the naproxen, as yesterday I went back to CVS and they added flavor to it.  I picked watermelon over grape (thinking it would taste better with juice, if I still needed to dilute it), but they said that “mango” is the recommended flavor to pair with the medication, and if I will be needing it often, they will make sure to get it in stock for us.

I have also now had a conversation with Cordelia about what is going on with Phoebe.  I told her that she knows how Phoebe has been having an owie in her leg and that it is making it hard for her to walk.  And she knows that Phoebe had an x-ray (she was with me for it) and that there were no broken bones.  And that last week, she had more pictures of her knee taken with a machine that looks at your muscles and tissues, instead of bones.  (I didn’t tell her about the anesthesia process).  I said that the pictures showed that Phoebe has a disease in her knee and in her joints, the parts of her body that help her move and bend.  It is called arthritis, and it was going to be our job to be big helpers and make sure we take the best care of Phoebe and make sure she gets all the medicine and treatments she needs to get better, so her leg won’t be ouchie any more.  As we talked, Cordelia was very interested and asked some questions: “Why does her knee hurt?” and “Why can’t she bend her knee?”  She also made some along the line of, I don’t have arthritis, I’m big/strong.  So I thought that was encouraging, because at other times Cordelia has occasionally been doing the classic thing of “oh younger sibling is sick/getting attention, well this is everything wrong with ME, I’m sick too....”  Fortunately, my pediatrician said it’s completely normal and was more than happy to examine Cordelia too..... Now that things have gotten more serious, I’ve been taking Phoebe to all her specialist appointments without big sister distractions.  

Today, Cordelia stayed with her Meme and Papa, while I took Phoebe to the TB test.  Phoebe was uncooperative and did not nap at all before I picked her up!  Great timing, kid! She fell asleep in the car for the less than 10 mins it took to drive there, and then, of course, had to get woken back up.  She was ok in the waiting room, but started to cry as soon as she saw the nurse, Nancy.  Poor little thing, this is just the start of all the shots and things she will have to have!  I kissed away all her tears.

I put Phoebe in the umbrella stroller to take her to and from the car.... when I sat her down, she never even bent her left knee, just held it straight out.  Usually, if I have put her in her powerwheels car or her push trike, if I put my hand behind her knee, I can help her bend it.  This time she wouldn’t.  She also cried a little about being put in her car seat... I don’t think it felt good.  So rigid today! :(

Then we drove to Palo Alto to get checked into our hotel.  I was lucky, it was still in the mid-afternoon and the rush hour build up was going the opposite direction.  Phoebe had a hard time sleeping during the drive, oooh tired girl!

We got there and one of the hotel staff passed by while we were at the front desk.  When he came back, he gave me a big pack of organic gummy bears for Phoebe, if I wanted.  I thought that was so sweet!  

Phoebe cried when we went in the hotel room, she got scared it was another doctor’s office and didn’t want to go on the bed!  Ohhh boy, she is already so aware.  Tomorrow is not going to be fun at all.  Phoebe was so calm for the MRI, but I don’t know if we will get that lucky again.  

I put on some Sesame Street and we explored the room, and she started to have more fun.  We went down in the lobby where they had pizza and veggies and other snacks.  Phoebe ate popcorn and donut holes for dinner.  Ok and she tried jicama and later had a pouch of pears/spinach.  She would not eat her blue berries, her banana (that she asked for, but then refused!), or a cutie, or cheerios.  

I had a ticket for a complimentary glass of wine, which with all that’s going on, you bet I got one.  Here it is with cheerios that I picked up after they were spilled on the floor.  #momlife 

 I am slightly less impressed with this hospital than the W.C. facility in terms of preparation.  Last Friday, I was called by the rheumatologist’s Palo Alto office and she said that there was an opening Wednesday at 9 and that Dr. B would even be there to do the procedure herself.  I asked the address of the hospital and the girl on the phone said she didn’t actually know it, but that someone else would call me.

On Saturday, I got an online notification about the appointment for the 21st, and it had an address but it said someone else would contact me to give me an exact time. I already had a time, 9 am, but that was not included!  (Side note, also so scary to read, the Upcoming Appointment description says Surgery!)

As of Tuesday, at like 4:40, no one, automated or otherwise, had called me to make any appointment confirmations or go over the anesthesia process.  For the MRI, I had several phone calls and a very detailed, and very reassuring conversation with the nurse.  Like, don’t feed her after midnight, and no liquids after 6:30, and when you come in, follow the purple sign to where you need to go.... very reassuring!  I figured I did have enough info to probably find my way, but still would like more details about like what floor to go to and stuff, so I called Dr. B’s office.  But their voicemail said they stopped taking calls at 4:30. 

At like 5:15 someone from the hospital finally called me!  It felt so last minute, after 5pm!  Here I was already in town for this appointment, and I was honestly starting to have worries like there was going to be some sort of mix up in dates between the rheumatologist and the hospital.  Fortunately, we already have the MRI under our belts, so none of it was a surprise, but now I at least know where to check in, and that they want us there as early as 7:30, which was totally new information.  Why couldn’t they have called earlier?!  

Jason finally made it in at like 7:30, and we did bedtime.  He also called Cordelia to tell her a "light's out story". 

I hope our girl sleeps well and that the ordeal tomorrow will help make her worlds better in the long run! Hopefully writing all this will get it out of my system, so I can get some sleep too!  

No arthritis in her hips!  She loves to kick her kicky feet!

Feb 18

Let's see... talked with Chuck about the MRI results.  He said that Dr H said "you remember our little Phoebe, who we suspected had arthritis?  Well, turns out, she has arthritis!"  I thought it was cute that he'd called her "our little Phoebe".  But anyway, we are all wrapped up and are now just going to be rheumatology patients.

On Friday we also started Naproxen.  Jason's health insurance through Mills is a high deductible plan,  but with Mills having a spending account that will cover up to the deductible ($2600) and after that it will start being 20%, up to the individual out-of-pocket maximum of $5000/ $10,000 for family max.  Anyway, we are going to hit hers super fast with a 30 day supply of Naproxen costing $289.68.  Last year, we came no where close the deductible!

 How the hell and who the hell comes up with these figures?  The world of health insurance is just such an evil, immoral business, I really have no respect for it at all.  After the deductible, prescriptions will start being classified in different tiers, with varying and slightly more reasonable co-pays, but not sure what Naproxen will fall into.  And that is just the first of the various medications....

My friend K is going to see about getting us on Medical.  :(

And the worst part is, it tastes (and smells) HORRIBLE.  Phoebe never once complained about Motrin, but this stuff is foul!  I think it already has a flavor, but I'm going to see if the pharmacy can add another flavor to it or if I have to wait for the next batch?  In the meantime, I've experimented with mixing it with apple juice (needs a lot to cover the taste and then takes forever for her to force her to drink a whole dose.... and then she peed sooooo much), orange juice (seems to mask the flavor a bit more, but I don't think she liked orange juice that much either), and most recently and perhaps most successfully--- the juice that comes in a pre-packaged cup of diced peaches!  Another suggestion I've gotten is to get some powdered hawaiian punch type of drink, and add that directly with a little water.  Anything to make this stuff taste better.  It's so expensive, you can't waste a drop!!

  Anyway, Naproxen.  I'd gotten it Thursday evening, but, well, just didn't want to give her a new medicine and promptly put her to sleep... wanted to have time for us to observe how she did with it. And to be honest, she didn't have a great day on Friday.  She was very, very stiff.  I wonder if the switch over from the Motrin meant her body wasn't getting as much relief from either drug.  Her right knee was bothering her as well as the left.  She was also kind of clenching her right foot toes, I think.  Can you see it?

I also thought maybe her foot was a little swollen.  This is what I was thinking before, but the rheumatologist didn't see anything when she looked at her feet.  But I think they were bothering her.  They were also red on the soles, which I'm not sure if it was from her climbing on the couch or if they were irritated.  This is new, so could that be from the Naproxen? I have no idea.....

Saturday she seemed to be doing pretty well.  In the morning, she got sleepy fast and took a 2 hour morning nap.  Then she was super energetic and never even took an afternoon nap because she was too playful!

Sunday was an amazing day!  Phoebe did not cry when she woke up.  YAY, that is so rare!  Then, after breakfast, Phoebe WALKED A LOT.  This was HUGE.  She was laughing and smiley and even though she was walking stiffly, her discomfort must have been pretty low because I have never seen her walk so much so early.  She also asked to go outside and put her shoes on! So we went out and she walked some more.  Is she not bending either knee to walk though?

We played outside again, two more times that day!  We went to the playground twice.  To get there, Phoebe tried to tell me she didn't want to ride in her bike.  SHE wanted to be the one to push it!  But she didn't get very far, but it was cute that she wanted to!  

By the afternoon, she was stiffening up again.  She also did some crawling, which I'm not sure if it was good or bad.  She doesn't usually crawl, so what made it feel like it was a better option to get around and follow me?  Usually she will walk or not go anywhere.

In other news, sharing this blog has been helpful, to let more people know what's going on without having to repeat myself or skimp on details.  I'm also enjoying hearing everyone's support or suggestions.  I'm kind of in information gathering mode.  My mom's PT person says put her outside in the morning sun and let her sit in the grass, and to turn off wifi when we go to bed.  Several people have suggested making diet changes, though I'd loathe to cut diary and gluten, when Phoebe is already so picky that milk, yogurt, crackers, and fruit are basically all she'll eat. A couple people with arthritis have reached out.  One described herself as "the tin woodman" in the mornings.  The other was telling me how manageable her pain was with medication and offering lots of encouragement.  

It is funny to see how many people I know who are OTs or PTs or in medicine!  It was good to hear from everyone and I feel so connected!

Next week we are fully booked.  

On Tuesday, I will pick Phoebe up and take her for a TB test, as TB can interact with some of the medications, so you have to be cleared from that.  Then I will drive down to Palo Alto to stay in a hotel over night and Jason can meet us there.  I just didn't want to drive to our injections Wednesday morning in traffic, with Phoebe being unable to eat or drink because of the anesthesia.  We all would be miserable.  So Cordelia will sleep over at Meme and Papa's house so that we can be less stressed.  I originally booked us a hotel, but then Jason's dad called and said to cancel it, and very kindly used his Points to book us a different room! So grateful to Meme and Papa!  

The injections are at 9 at the Lucile Packard Stanford Children's Hospital.  I'm feeling more upset about them than the MRI.... for the MRI, I was just sad that it had to happen, but these I'm a little scared because I know it's going to hurt her.  :(  Hopefully it will be beneficial overall, but I guess for some people it hasn't worked.  I hope it will for Phoebe!  

Thursday, we go back to get the TB test checked.

Friday we see the pediatric ophthalmologist.

  

ok i'm falling asleep.... time to go!

Feb 14, DIAGNOSIS

Today was our first visit to the rheumatologist and we were able to confirm and narrow down Phoebe's diagnosis to the autoimmune disease: polyarticular juvenile idiopathic arthritis.

Phoebe was very excited when we got to this new doctor's office because they were playing Moana.  She couldn't see the tv as it was in the corner, but Moana was singing "How Far I'll Go," and Phoebe immediately recognized the song from the singing necklace Cordelia has at home.

We got signed in and also got set up with Stanford Children's online account.  It was much easier to set up than John Muir's.

A nurse took Phoebe's weight and height.  Phoebe was nervous, but I tried my best to "sportscast" everything that was going to happen to her before I did it.  "This is the scale to see how big you are.  You get to sit on it. I'm going to put you down on it so you can sit." And then I put her down.  She still cried about the scale, but then when I described how we would measure her her, she was actually very calm and listening to me.

Then we went to the exam room and Dr. B was already there and ready to meet with us.  It ended up being a super long appointment.

She already had the results sent over from the MRI, which showed...... Phoebe has arthritis! I didn't actually look at the MRI yet, but I guess it showed evidence in her synovial tissue (Definition:  connective tissue that lines the inner surface of capsules of synovial joints and tendon sheath. It makes direct contact with the synovial fluid lubricant, which it is primarily responsible for maintaining) and also in the lymph nodes of her knee pit.  

She said, she wished we had seen her first, she might not have needed to go forward with the MRI, but whatever, at least they didn't tell me there was a ^%&$-ing tumor or something, which is what I was scared they were implying-but-not-saying-it to me before. We have at least gotten to this place.  I think the orthopedics were still more open to other possibilities because she didn't change much under Motrin that first weekend, but Dr. B pointed out that anti-inflammatories take time (several months) to build up in your system.  She said that she felt like this was a very classic presentation of JIA, just needed to determine which type.

She said that when her nurse said they wanted to prioritize our appointment and squeeze us in, she at first thought she'd said "There's an 18 year old who may have JIA..." and didn't see the urgency, but then she realized it was an 18 MONTH old, and of course wanted to see us right away!  :)

At first, she was hopeful it was oligoarticular JIA, (oligo, meaning "few").  This would mean only a few joints would be affected, four or less, and typically large ones like knees and elbows.

We discussed how Phoebe's left knee is the most obvious problem, but I thought it could also be in her right knee.  She agreed, and as she examined Phoebe, she said she also believes it is in her left elbow (she could not rotate/twist it fully) and also in her fingers, between her finger knuckles and the knuckles at the base of her hand.  Honestly, I never would have noticed.  But they are very, very so slightly more swollen than on her left hand and she seemed to not want to bend them.  

This was very interesting to me because I still see Phoebe using both hands without an obvious dominant choice.  Like, sometimes I think she is right handed, but then she goes to using her left hand so often.  Now I wonder if she IS going to be right hand dominant, but her right fingers hurt, so she switches to the left.  Phoebe kept wanting to draw with the pen I was using to take notes with and we experimented by trying to make her hold it in her right or hold two pens at once.  She passed the pen to her left hand and wouldn't use the right.  It was super interesting to observe with the doctor right there.  Dr. B was very gentle and thorough in her examination, and Phoebe stayed very relaxed.  Some crackers to munch on also helped.

Because of these other locations, Dr. B classified her as having polyarticular JIA.  (poly, meaning "many").  This means that 5 or more joints were affected.  

She examined Phoebe's left leg more and measured it, compared to the right.  She said there is about a 10 degree significant contracture, as she couldn't fully straighten it.  We need to treat the arthritis or she will develop leg discrepancies, like they can grow to be different lengths and stuff.  She also said that there seemed to be a loss of muscle mass in her leg, as she has been favoring her right.  (Noticeable in the asymmetrical leg fold in her left thigh but not in her right that Dr. Jen had pointed out to me)  We will be needing to do some PT in the future.

She said that JIA does have genetic polymorphisms, so basically there is a genetic factor, but just because one person has it, doesn't mean another will get it.  For instance, in identical twins, even with the same genetic make up, one could have it, while the other does not.  More likely for Phoebe, it was triggered into activity by a viral infection, such as what she had in November.  

So now we are going to start talking treatments.  I am again glad for the facebook page, because even though I don't know anything about any of these medicines, all the names were familiar to me already, as I've seen people posting about them.

First, we are going to be starting naproxen, which is a nonsteroidal anti-inflammatory, similar to ibuprofen.  It is a liquid and she will take it twice a day.

Second, we are going to have joint injections of corticosteroids in her knees and elbows.  She will be put to sleep for this as well, and we will have to go to Paolo Alto for it.  As she will be asleep, they will also do our next blood draw for more labs.  They are going to want to see if she tests positive for a rheumatoid factor, ie the more classic rheumatoid arthritis that adults get and a small subgroup of children can also have.

Third, we are going to see a pediatric ophthalmologist to have her eyes checked for inflammation.  They will also want to know if there is a genetic component, if her blood work tests positive for antinuclear antibodies (ANA).  If so, she will also need to have her eyes checked every three months.  If not, they will want to check her eyes every four-six months, as they determine how she progresses.

Those are the first steps.  The next things we will do after, will be adding more medications.

Methotrexate will be given by injection, which we will get to administer ourselves at home several times a week.  This is a disease-modifying anti-inflammatory drug.  This medicine is not supposed to relieve the pain or lessen inflammation right away, but they prevent joint damage and bone destruction.  This drug is also used in chemotherapy and has a bunch of side effects. But my handout says it has been used to treat JIA for more than 25 years.

Next, we would add a biologic drug. This is a new class of drugs used to treat diseases with biologic response modifiers.  These medicines stop the immune system from causing arthritis inflammation.  These have more familiar names from those annoying pharmaceutical commercials, like Enebrel and Humira.

All of these medicines come with fun lists of side-effects, like nausea and loss of appetite  and headaches, but the methotrexate and biologics are immuno-suppressants and come with the terrifying warning of increased cancer risk.   😱 😱 😱

This is some serious shit, guys.  My little baby is going to need all these medicines.  It's really scary.

But for today, I'm overall not really upset.  Instead, I'm kind of amped that we have a diagnosis and are going to do what we need to make Phoebe better.

This is not something she is going to outgrow, but if we can treat it aggressively, hopefully we can attain remission.  (And even then, flare ups are still possible).  Remission is only declared after at least 6 months of treatment, and then 6 months without treatment and no symptoms returning.

My handout says that children with JIA today are already less affected by joint damage and disability than children 10 years ago.

Anyway, Dr. B and I talked so long that she actually said she needed to move on to other patients and she is going to call me tonight.  She gave me paperwork to finish up (Phoebe was ready to leave at this point) and also consent form for her joint injections to be faxed back.

My appointment ran late, so I wasn't sure how to best use my time next.  Was it still worth it to drop off Phoebe and go in to work for 45 minutes?  And yet it was also still too early to pick up Cordelia from school, she'd be in the middle of lunch.  My school's director was able to say they'd manage without me (even though today was crazy with it being Valentine's Day), so I took Phoebe to her Meme's house to have her lunch.  That way I was able to sit and go through all this information with Meme, without interruption.  Then I took Phoebe with me and picked up Cordelia.

I also spoke to Chuck from the orthopedic's today.  While I was on the phone with him, the optometry office called about our "urgent referral".  I called them back; Phoebe's eye exam scheduled for the 23rd at 8:15.

CVS pharmacy called and said they do not have naproxen and will have to order it, but hopefully in by tomorrow.

UPDATE: Dr. B did call me and went over a few more things.  She said that another patient of hers was trying to get their naproxen at a CVS and they were unsuccessful.  She was trying to find out if it's just the same store or that there could be a shortage, which is apparently something that can happen sometimes?!

I also asked her about CCS.  She said she can make a referral, but it was her experience that there were a lot of paper work hoops to jump through and also took time to be seen.  She wants us seen soon, so she is going to send us to someone back with John Muir for PT and OT for her hand.


P.S. Phoebe's cheeks looked fine this morning, she had one tiny red dot.  My other theory was that she had a bug bite outside or something that was making her puffy, so maybe that was the case.  That's pretty much gone now too.


In other news, there was another horrible school shooting today.  As a teacher, it just appalls me, and it never stops.  Do people not realize what is important in this world?  When your baby is in pain and facing a Diagnosis..... this is happening all over.  These are the things that matter, and yet we can't even keep our healthy babies safe at school because of gun violence?  It's just sickening to think about.

In the meantime, I  didn't take any videos today, so I will just end with some pictures (not from today) of my brave little girl.  Isn't she just the sweetest?