IVIG

If you don’t have anything nice to say, sit in the corner with me. Wait that’s not it. But really, we’ve hit a few snags in Isabella’s care the last few weeks and I didn’t want to dwell on them here. Maybe for my own sake I need to focus on the positive and the success stories. But I think we are back on track so here is catch up! At a high level, outpatient IVIG setup was delayed, she started to regress again. After possibly 40 phone calls she ended up getting admitted again at her follow up appointment. She received two treatments inpatient and thanks to our benefits contact at work the outpatient mess was worked out.

The plan is weekly for four weeks. Every other week for 3 months, then revisit frequency depending on how she is doing.

She had her first of four weekly treatments on Good Friday. It went great!

We traveled to Kentucky. She woke up at 2:00 am with a fever spike. We were unsure if she was just two year old sick, or reacting to the treatment. We spoke with the on call Dr at her hospital as well as the Dr from the outpatient clinic. Both said it sounded unrelated and to just treat the fever, but to call the hospital back if it persists. (We are always supposed to let her team know of a persistent fever, this just happened to be her first one.)

Sunday morning the fever kept returning, was less responsive to meds, AND her lymph node was swelling. A quick phone call while packing and we headed to her hospital.

Between the out of whack immune system and the daily steroids no one was sure how her body would react to what now appeared to be an infection. Long story short she had a retro pharyngeal infection unrelated to the IVIG which might have been more manageable under different circumstances, but for Isabella it escalated quickly.

She was admitted. Again. Imaging and IV steroids to help fight it. Infectious Disease and ENT monitoring, Neuromuscular and Rheumatology also weighing in. Since this was her first instance and it responded well to antibiotics we were able to get her home by Wednesday. If these reoccur, we may have to test for Sjogrens and consider if another autoimmune is compromising her salivary glands.

HOME! This involved a long list of helpers because at one point the 5 of us were in 4 cities in 3 states. We are a mess to see up close and probably exhausting to love. But thank goodness for our network near and far. All hands were on deck.

Isabella continued to improve and was able to go to her second weekly outpatient IVIG Friday. She came home happy and healthy. And no signs of reactions or fevers this time. AND SHE’S GETTING STRONGER!

Today is a new day. A hopeful day. We can’t wait to watch her grow, and can ride the ups and downs. The good news is we’ve learned no matter what comes we can get through it. With a little humor and a whole lot of helpers!

Isabella: Two Weeks Later

Isabella’s progress during week two has been remarkable! Stronger, better posture, better neck strength, and enthusiasm for hard work!

Day care was thrilled to get her to sit on a bicycle! Her balance is actually very good.

She’s much more tolerant of tummy time. She’s much more tolerant of everything actually! It breaks my heart a little to consider how miserable she’s been for months now. But so grateful for the sweet, sassy, strength that is emerging.

Isabella: One week later

We have been home from Isabella’s diagnostic hospital stay for one week. During that stay she was diagnosed with Juvenile Dermatomyositis.

She has continued a daily oral steroid, and is drinking thickened liquids.

We have a follow up appointment scheduled but are waiting on the follow up plan for IVIG. There may be a closer center or an at home option.

Progress:

Isabella is NOT crawling, pulling to a sit or stand, cruising, or even bearing much of her weight.

But we are already seeing small improvements. Her skin has improved a lot. She is scooting on her butt again, and can make multiple trips across our apartment living room with a little motivation. From a mobility stand point that opens up a much more playful world.

Her demeanor is different. She clearly feels better. She’s funnier, more alert, sassier (hello steroids!), and more verbal. She’s happier, presumably in far less pain.

She’s also willing…to try, to exercise, to do our therapy routine. Muscle building will take time, but she is working hard.

Tonight daddy got a walking harness out. It was a Christmas present. When we tried it at Christmas she was miserable then went limp and cried and cried. I cried too. She was so weak. I felt helpless.

This video shows her not only being willing, but enjoying trying it. She even had an idea of her own as she neared the end of the hallway.

These pictures show improving balance and posture, as well as an interest in pushing her doll (still with tons of help for now). We are still helping her almost as much as ever, so the assistance from us is unchanged for now. But those smiles while doing it…they are new. 😍