Phoebe is moving with more and more confidence!
We had a great St. Patrick's day with the girls' cousins! Phoebe had fun going in a big trampoline in their backyard, but I don't have any pics because I was jumping too. 😀
On Monday, Phoebe was very active!
Look at how fast she is going down the stairs now! Before, she could not go down the stairs on her own!
She also remembered what she learned at PT, because she started going down slides too! First she did her little slide at our house.
Then we went to the playground at our complex, and she went down the big tube slide there too! She has finally learned how to put her feet in front of her and go down! She was laughing as she went down! It was so cute! She wanted to do it again and again!
Jason got home while we were still playing and I was glad he got to see her slide! But then, going up the steps to the platform, Phoebe fell, landing awkwardly! Oh no! She was pretty upset and had hurt her foot. In fact, for the rest of the night, Phoebe would not stand on it. We carried her back home and had dinner, but even then after it, every time she tried to stand, she collapsed, crying and saying "Ow". Phoebe normally has a pretty high pain tolerance, so for her to not move past this was unusual.
As you can imagine, I was so concerned to see her suddenly unable to walk *again*. And, to make matters worse--- fresh in my mind was the THIRD broken bone in my 2 year old preschool class! (none of the injuries happened at school, phew) We have a girl with a broken arm and a boy who just re-broke his leg... in a different spot but on the same bone. I feel like toddlers normally bounce back from falls, but it seems like more significant injuries can happen so easily.
We've only just gotten Phoebe walking and getting more adventurous in her gross motor skills, but she is still learning to find her strength and balance. I'm pretty sure it was her right ankle that was bugging her. Of course, it was probably just sprained, but it was heart wrenching to see her struggling. I'm scared to lose the progress we've made.
In the morning, even more alarming, Phoebe started to get out of bed but then once again stopped and said ow and then wouldn't stand up again. She still wasn't better! Jason took the girls to Meme's house, but I messaged her doctor and asked if she should come in for a sprain or if I should try and get her seen at PT. I wanted to figure out if I had to have any doctor's appointments and how to fit them in around my work schedule right away. Dr. Jen (bless her for getting back to me quite promptly) thought that PT would be the most helpful and if she didn't improve to bring her by the following day and maybe have an x-ray. It turned out PT didn't actually have a day-of opening, but good news was once Phoebe got dropped off..... she decided to start putting weight on her foot and walking again. 😑 Thanks for freaking me out, Phoebe! Still, what a relief she finally got over it!
I do have to note that this was about 30-45 minutes after taking her Naproxen, so that probably helped her feel better.
Anyway, I was really glad to go to work and not have to add any other doctor's appointments to my day. It was my co-teacher's birthday and I would have been bummed to give her a challenging morning by calling out or leaving early.
There was some family disagreement over the extent that Phoebe was fine. While I didn't think she needed to get seen at the doctor's any more, once she decided to start walking I was much more reassured, but I still thought I could see a difference in Phoebe's steps. Even though she was putting weight on it, she was keeping her foot very flat and, in fact, turning her foot almost to the side a little bit to distribute her weight. So to me, I think she was not quite completely fine yet, but everyone else thought she was completely fine and told me to quit over reacting. Here is a video from the following night, 24 hours after she fell. Can you see the difference? I called this blog Phoebe Steps for a reason... I'm obsessively attuned to her walk, even if you think I'm a crazy lady. I acknowledge that even to me it's pretty slight--- I'm not saying she still needed to go to the doctor--- just that she was still recovering from the sprain. Watch her right foot, she was walking smoother than this before.
Sorry, but any change (like her hand swelling last week) or pain that Phoebe brings to my attention, I am going to take it seriously. Seeing my child collapsing and saying "OW" put me on alert and you can bet I watched her like a hawk from then on. How am I not supposed to worry about her? Sure, I don't want her to go through life bubble-wrapped, but still I'd rather get told something is nothing than leave a new problem unaddressed. We are only a month into this, how can I not be over-protective?
To conclude: the good news is, Phoebe is ok and continued to do better through the rest of the week, regardless of her overreactive mommy.
*****
Tuesday Night's Injections
Over the weekend, I started playing "doctor" with Phoebe. We got out our vet kit and used that in combination with real bandaids, real gauze, and real alcohol wipes. I let Phoebe open and take out everything. We had fun sticking bandaids on baby dolls. When they got a shot, Phoebe would say "ow" and hug them and pretend to cry.
She does not like alcohol wipes. I think they feel cold and wet and smell bad. She does not like to touch them or be wiped by them. I'd like her to be able to wipe her own leg, but she is not interested in doing that.
When we talk about the shot, Phoebe says "ow" and "no". It's pretty sad.
This time we tried to involve Phoebe in the "prep" of the injection. I'm not sure how helpful it was either way. She still got anxious about it, as it draws out the experience. Jason was really great though and showed her things like "Now I'm putting on the gloves" "Now I'm putting the medicine in." We let Phoebe open her own band aid and get it ready. Then we did the shot, and of course she was crying and trying to thrash around, but we took it slow, so it felt the least rushed of our 3 experiences at home. So, not as bad as last time, but what can I say, giving your child a shot is just really shitty not matter what. Hopefully we will all get better at this.
I have to take her in for blood work soon now to make sure the methotrexate isn't doing anything bad to her.
****
Eye Drops.
At home, Phoebe is requesting "No, Mama!" to Jason, so I do almost all the eye drops for her. It's ok, I've gotten really good at it. As you can imagine after FOUR WEEKS OF HOURLY EYEDROPS.
Anyway, no one else can apparently believe we are doing that either.
I have had all kind of continuing shenanigans with Walgreens and our insurance because they do not want to pay for eye drop bottles more than once a week, but we are going through a bottle in like 4.5 days. One thing is that it is a gel, so the viscosity is slightly different, and the other is the insurance seems to think the maximum dose is like 4 times a day. (HA HA HA HA HA.) At first they were able to override it a couple times, but then the insurance started refusing to pay for it.
I asked the Uveitis Facebook group on Sunday if it was ok to wait to get more on Monday, but they said it was not ok to skip doses. I mean, she obviously goes for a long stretch without when she's asleep but.....
Anyway, the Facebook group also seemed surprised by the hourly steroid drops going on for so long. They wanted to know if she was also on any systemic medicine (yes, we'd just started mtx). Moms were telling me that their child is seen weekly or even bi-weekly during a flare. So that didn't make me feel super great. They told me it might be worth it to see a uveitis specialist, but this is who Dr. B referred me to. I really like her report with Phoebe, despite all the awful things she's making us do. I'll ask her about it at our next appointment. :(
We ended up paying out of pocket to not miss out on eye drops. For some reason, Walgreens worked out the price to be $60. Not the full $175, but we also couldn't use the discount card from before because that was to be billed along with insurance., which had made them $25. So I have no idea how they came up with that price. But, thankfully Jason's parents have very generously given us a card to be used for any extra prescription costs, so that came in handy. Thank you, to Phoebe's Meme and Papa!
The very helpful pharmacist I talked to said she was going to try to make sure the insurance should know that we should be billed for a 4-5 day supply, not a 7 day supply from now on.
When that bottle ran out, I had to have the doctor's office renew the prescription, but that had to get faxed over twice (after multiple calls between the doctor's and Walgreens to find it had gone astray.) THEN they tried to tell me that it still wouldn't go through insurance because it hadn't been 7 days since my last bottle. I said, no, the last bottle WE paid for out of pocket, so the insurance shouldn't have been billed since last week. Oh, right. Now it's going through. Then I got to talk to the same pharmacist as before and she told me the insurance was still not letting it go through for more than a 6 day supply, so if Dr. C says we still need them after tomorrow, we will have to have her make a special request to the insurance to allow it. ARG! Just a bunch of headaches I don't need!
Tomorrow we go back, so stay tuned for eye drop updates tomorrow. We really need some good news.
I'll have to update more often, so I don't have to make as long catch up posts lol! Thanks for reading, if you made it all the way through.
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