Hi everyone and happy almost hump day!
**If you signed up for the email alerts and are getting this via email, there is video in this post that you may not be able to see unless you go to the blog page on the web.
So after a few not-so-good-days in a row, we finally had one "okay day" and two "good days", Sunday and Monday. Today has been an "okay" day as well. We are very happy about that.
Good day: "gets around on her own with
minimal requests to be carried. At times even moves very quickly
albeit, still in a hunched-bent-legged position."
Okay day: "a
bit more whinny in spirit, a few requests to be carried but mostly walking on her own but it is apparent in her walk that she is in discomfort and she
Not-so-good-day: "More sitting than
walking, more complaints of pain/discomfort than usual and many requests
to be carried from point A to point B. She has trouble doing minor things like lifting her legs to get dressed or bending down to pick up a dropped crayon."
No matter what kind of day she is having we don't really let her climb stairs on her own because she is so wobbly on her feet - the last thing we need is an injury or bad fall. She usually won't attempt steps anyway. She also can't get up on the bed or climb into the bath tub without assistance, etc. So these are examples of everyday limitations no matter how she feels. We also have to consider our dog, who has been known to knock her over as well as playmates that may not understand that she is more unsteady than the average kid. (I am describing all this not for pity, but to share for other families reading who are looking for similarities in their child's JRA symptoms.)It seems she has a hypersensitivity to being bumped or falling down but you can touch her legs and poke them and she doesn't seem to be hurt by that. Just another oddity that I can't explain.
This is an example of an "okay day":
Thanks to our dear friends Kim and David ,who came to dinner Saturday night, we learned of a state-of-the-art Aquatics Center at the local university that allows membership to non-students. Thank goodness for this incredible information, we almost signed up at an indoor pool nearby that was very grungy, to put it mildly. So we paid the Aquatics Center a visit on Sunday!
And I think you can guess, from these smiles..........that.....
WE GOT A MEMBERSHIP!!!!
Now here's the part you can't tell from the pictures: soon after we got into the pool, we were told we needed to get out because of a thunderstorm approaching. I have never heard of an INDOOR pool closing because of a thunderstorm, but apparently there are pipes that run underneath the pool that could cause safety issues. So we got about 5 minutes of pool time that day. 5 MINUTES! lol! Oh my goodness, it was so hard to listen to the two of them cry in disbelief that we had to leave! BUT, the upside is that Daddy took them back Tuesday (today), in the morning for a couple of hours!
HOORAY FOR DADDY!
HOW THIS HAS AFFECTED BELLA...
Bella is a strong willed, bossy, dominant older sister. (No clue where she gets it!!!???) We have always had to referee between the girls in order to encourage "sharing" and "being kind to each other". Often times the arguments are related to who got the pink cereal bowl or who got the blue chair...well, Bella has undergone some kind of transformation. She is not that child who fights so hard to get her way anymore. On numerous occasions she has relinquished a favorite toy, moved to a different spot or given Lucianna the special doll (even when it was HER turn). She has done all this without coaxing from us and it's been amazing to witness. While we don't want Lucianna to think she always gets her way, it is still nice to see that Bella is learning how easy it is to do something kind for her sister. The best part is that she's done it so willingly. She knows that Lucianna has "something wrong with her legs", but clearly doesn't understand why. So, this past Saturday we took them to the store so that Bella, (in particular), could pick out a toy because of her extraordinary behavior during this time. I have never, in nearly 5 years now - taken either child to a store to pick out a toy when it hasn't been a special occasion. Well this has been a special occasion! This illness causes everyone touched by it to make some life changes...Bella, nearly 5 years old, has surprised us and made us so proud. Below is an example of how Bella has changed to adapt to her sisters limitations. Usually they play on the floor, but sitting in a chair is more comfortable for Lucianna so that what Bella does. Kudos to Bella!
Tomorrow we are off to visit our New York family for some rest and relaxation and family time. We are so fortunate to have a very supportive family (both in NY and locally). A bonus is that our NY family lives close to the ocean...kids love sand and we are excited for some ocean-side therapy and warm NY bagels. Papa's "free spankings" is just icing on the cake!
Have a wonderful weekend everyone!
Bella & Lucianna's Proud Mama