strumming along

i recently wrote about the excitement of soon tapering the pre.dniso.ne.  roxy’s urine had been testing “trace” for protein for many days and upon calling the doctor last week, they were not happy to hear it hasn’t been negative.  suddenly her specialist is a bit grave about her prognosis and thinks perhaps she doesn’t have minimal change nep.hrotic syndrome after all and it could be the more serious form of kidney disease, fsgs.  if things don’t turn around, she’ll order a biopsy.

red is learning everything she can about this and giving me the cliff notes throughout the days.  to hopefully keep a kidney transplant or dialysis out of roxy’s future, we’ve begun some homeopathic practices to supplement the prednisone.  roxy has been served raw garlic in applesauce – we’ve found a few people that insist this has lowered protein leakage within 24 hours (no luck yet but the child smells like a pizza shop).  red also wonders if a hidden food allergy could be irritating her kidneys so we’re going to play around with eliminating dairy, wheat, and sugar.  obviously this is a shot in the dark but that’s exactly what the doctor seems to be doing – taking guesses because they just don’t know.

only a couple more weeks until the decision is rendered.  we went ahead and booked a cottage for fami.ly week in pt.own this summer and are hopeful that we’ll still be a family of three by then.  it’s also our anniversary week and is where the schooner we got married on is docked so we’re sure to have lots of fun.  the last time we spent a full week there was when we got married and so it seems fitting that the first time we return will be as a new family. 

i took roxy to her first gym class this week.  parents sit outside the room and there isn’t a window to watch but i heard her name constantly called back to the circle and i cringed knowing she was disrupting the class.  this was her first organized class so i expect it’ll be a learning curve for her to understand how to be part of a group.  i ordered roxy’s violin  and she’ll start lessons soon  (1/32, even though she really could’ve used the 1/64).  in the meantime, she’s loving this guitar we’ve had in the trunk of our car since xmas and forgot to give her.  we went to red’s band practice sunday and roxy loved being part of the action but here is a photo of her taking a break from all her dancing and strumming.

practice

 

living under a microscope

though rare, some days i just want to do something spontaneous like before.  i don’t mean to say that roxy (ever so enthusiastic) impedes this wanderlust but the fact that we’re foster parents does.  we need travel letters to cross the border into the surrounding states, and let’s face it, in new england, it’s not uncommon to find oneself shopping or sight-seeing just over the border.

some days i wake up and complain about having to clean the house for what feels like an unending stream of visitors related to being a foster parent.  sure, we knew what we were getting into and my teammate and i have a good system for making the place look like a museum in ten minutes.

some days i don’t want to replay the last 1-4 weeks to another one of our workers and instead just live in the revelry of today with a three year old.

every day i cannot imagine life without roxy.  as this morning’s social worker guest remarked, “it’s like she’s always been here.”

but i still wish we could go to a hotel in maine on a whim tonight (coconut is out on fridays so no dice).

fresh air

knock wood but i think we are already nearing remission again.  her protein leakage is decreasing day by day and we can start talking about tapering the meds again in a week!  for the past three or four days, we’ve had a really even-tempered kiddo on our hands.  it’s been divine.  i don’t know if she’s just adjusting to the meds or if she’s reaching a new level of comfort here.  this morning she brought her blanket to me and said “rock a beebee?” meaning she wanted me to cuddle her and sing.  she lasted an entire twenty minutes of staring into my eyes.  and yes, my heart melted.

yesterday she had a visit with bio-mother and coconut brought roxy back here for her monthly meeting with red and i.  it went really well and it was the first meeting where we are officially her foster parents so we learned about all the logistical stuff that had been vague (like, why did we receive a random $50 check?  birthday money from the state!).  coconut said everyone in the office talks about the new sparkle in roxy’s eyes, how cute she looks, and how much she’s talking.  coconut also said they’d likely pay for any activities we want to sign roxy up for.  though we take her swimming every week on our own, and were planning on beginning gymnastics next week, violin lessons are not inexpensive so we’re really excited about getting her started.

i realize how lucky i am to say this but potty-training has been painless.  we avoided pull-ups except for the last two bio-mother visits and roxy actually asked to go to the bathroom there so i think a pull-up will be unnecessary next time.  this morning, it was nearly 8:30 before roxy woke up and when i went to get her, i was shocked to find that both red and i had forgotten to put a diaper on her last night.  she slept in her training undies and woke up dry!  we did a big celebration dance and offered her anything she wanted for breakfast – she chose oatmeal.

yesterday, after our meeting, we decided roxy could nap in the car so we could make the long drive to our favorite beach.  red had taken the day off work and the weather was a balmy 55 degrees.  roxy ran and ran and ran.  we came back to the city, got all dressed up, and took her out for a fancy dinner on pa.rk plaz.a complete with tiramisu and coconut/orange sorbetto.  then we showed her the state house gold dome up close as she’s so used to us pointing it out from her doctor’s office in the distance.  as evidenced by the need for clarity in her incessant questioning on the way home (and every other time we’re in the car) “going?” (translation: where are we going?) we know that building trust with her will be a lifelong process but wow, are we not the luckiest?

beach2 beach1