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!!