We are just taking some time to relax. Jason is having a busy time at work, and the girls and I are mostly just vegging at home. We have a playdate later in the week and I think we'll go to the park Friday, but other than that, it's nice to just take a breath and be home, especially after all the running around I did last week!
Our only doctor's appointment was Phoebe's second visit to the OT Lisa. (We were supposed to see her before, but she was sick). She is SO nice, I really enjoy talking with her. I always feel so inspired to go home and try stuff!
I was glad to finally consult with her about the cyst on Phoebe's hand. I told her that it made me really nervous to massage her hand, so I hadn't really been doing that, and she said no, that was fine, if she had heard about it earlier, she would probably revised her recommendations anyway. Phoebe's knuckles definitely still are swollen and thick. You can see a vein running under her skin from how stretched the skin is. 😔
Phoebe was super adventurous at the "doctor's playground." She roamed the room confidently, trying all the gross motor things. She went on the train roller coaster, but when it was time to go down, she requested "No, Mama," so that I would be the one to hold is steady, not Lisa.
Phoebe amazed me by CLIMBING UP THE SLIDE! Way to go baby girl! It's a really great slide, a little steep so I have to hold her hand when she's going down to steady her, but I love that she was able to go up on her own! It has little ridges on the side so she could hold on and being barefoot gave her enough traction to go up! She just needed a little help turning around.
However, the one place Phoebe still struggles most is her knees. She can walk and she can crawl and she can squat, but she cannot handle big steps. We have a tall stepstool in the bathroom for the kids to reach the sink and Phoebe can get one leg up, but she cannot bring the other leg up and raise herself to standing. She struggles on things like ladders. It's like her joints lock up. I hope she will get stronger! Her knees are still looking good, not obviously inflamed, so I hope it's just a strength issue and not from damage to her cartilage (or returning inflammation.)
The square swing was up, not the rectangle one. Apparently the square one has more instability, so if Phoebe goes on it, she needs someone to support it. Cordelia LOVED it and was so excited spinning around, exclaiming "It's like I'm flying!" Later, the girls when on it together, which was soooo cute.
For her hand, Lisa made a little compression tube sock mitten, with a little hole cute for the thumb for Phoebe to try and wear, but Phoebe immediately wanted it "OFF". I wore one too, but she was still not interested. Lisa is going to order an even smaller size, but we'll see if Phoebe will wear it.
Lisa made a tub of warm water for Phoebe's hand. Phoebe got to play in the water and pick out sea animal beads and marbles. She uses all her fingers, which is great.
We recreated this activity at home the next day. I added soap to make it bubbley and trickier to find the things hiding in the water. Cordelia then wanted to wipe the plastic sea creatures off of suds and transfer them to a clean tub of water so that they could "breathe".
We have just been enjoying quiet time the last couple of days. When I was putting her down for a nap, Phoebe just kept giving me little kisses. It was the cutest thing. This morning, Cordelia, Phoebe, and I blew bubbles in the house with their new big bubble wands from their Meme. I would hold the wand up to Phoebe's mouth and then she would blow and all the bubbles would go right in my face. This made Phoebe laugh hysterically. So sweet. Then we danced around to Beatles songs, starting with "Here Comes the Sun" and "All you Need is Love." Cordelia was getting really into them and later in the day I heard her wandering around singing, "Whisper words of wisdom: let it beeee".
Anyway, it was just a really beautiful, sweet morning.... need more of them like that, where we're not hustling to get out the door. Ahhhh.
Oh! And another exciting thing has been happening the last two days. Phoebe has been getting out of bed all on her own, as soon as she wakes up, instead of always calling for me to come in. She has been gathering up her blankie and a stuffed animal, usually her dog, and then going and tapping on the door and calling "Mama!" SO CUTE. She started after a nap, and then this morning just took off down the hall as soon as we opened the door! Wowza!
And as today was April 4th (posting late), there was another significance to this date worth noting on the blog. If Phoebe's referral didn't get processed as "urgent," TODAY would have been her first rheumatology appointment. TODAY. We could have been waiting all this time to start her treatment, maybe continuing with just ibuprofen like the orthopedic said (which was no where near enough to help her).
On the Facebook group, someone said that after going from doctor to doctor, an orthopedic had just finally diagnosed their 7 year old with JA, but then was told 6 month wait to get her son an appointment (in Canada) to see a rheumatologist. Yikes. Everyone was telling her to get another doctor to flag their case for attention, or to consider going elsewhere, even if it was further away.
Again, just so so thankful that we are able to take care of Phoebe and that we have a wonderful pediatric rheumatologist close by. And even Palo Alto, while not my favorite drive, is far from impossible.
Stuff is in the works for Phoebe to be an honoree at the Arthritis Walk! Stay tuned for details!
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