The Mercer Munchkins: June 2018

Quick update from a busy week- this week Suzie had her first IV bisphosphonate infusion. She will do this every 6 months and it slows down her bone turnover and in turn strengthens her bones! She did great, had no side effects and we were home within 3 hrs. Next, we had her Birthday! Suzie turned 5 on June 20th! It’s still hard to wrap my brain around her chronological age vs developmental age vs family age (only 3 months!), but our little lady is 5 and we took the day off and went to the zoo to celebrate! We all had fun and she saw several animals close up. I’d love to know what she was thinking but she seemed to enjoy it & is learning some animal names. We ended the day with presents, Chinese noodles and cake! It feels like we have turned a corner and our exhaustion is less of adoption and special needs issues and now just normal parent stuff- a kid who wakes up too early and gets into everything and juggling the needs of 3...pretty normal! 😆 Yay for normal!

she loves to put stickers on her head

Hi everyone!
It's been almost 3 weeks since our last update...sorry! That also coincides with when I went back to work. Needless to say we have NO time these days to get much of anything done and after Suzie goes to bed we are too exhausted to function.
I am so happy to report that Suzie has done great at daycare and is getting used to me being away at work. She still cries every morning, but is happy and thriving there and most importantly, she is safe and feels safe. We decided to have Brian pick her up each day. After him bribing her daily with popsicles & ice cream, she now doesn't cry much when he gets her and some days she doesn't cry at all!

She still prefers Mamma, but is making great strides with Daddy. I was even able to take Addie to the Taylor Swift concert. Suzie wasn't happy that I left her with Daddy but she got worked up enough that it wore her out & she fell asleep quickly, which allowed us to enjoy our evening, guilt-free.
She is learning & progressing slowly but surely. She's mostly moved on from peek-a-boo and has started doing more pretend play. She now knows about 70 English words and can count to 5. She knows our neighborhood and exclaims, "We're home!" when we pull onto our street. I have more hope now that she will eventually catch up developmentally to her age.

Suzie is no longer in any cast or splint! She is using the leg that was broken more and more, but we are in constant fear of her having another break. That's the absolute hardest part of this. The anxiety, fear and guilt. I feel that I need to watch and always be within hands reach to protect her. There have been several times that I thought her ribs may have broken just while picking her up. I worry about people bumping into her while I'm carrying her or when her legs are dangling in a cart at stores. She's started going up on her knees for the first time since her fracture and we don't know how much to allow. She needs stronger muscles but her femurs are very bowed and cannot hold her. The only hope we have is for her to start IV infusions of bisphosphonates, which can decrease her bone turnover and help strengthen her bones, This was denied by our insurance and I was devastated and frustrated. I planned to appeal the decision and started looking up research studies to support my case. This was yet another thing that I felt I didn't have time to do but could not put off.Thankfully the endocrinologist called and discussed the case & got the decision reversed. We are now waiting to hear from the scheduler who just happened to be out last week. It's so hard to be patient! After that we will need to start planning for her to have surgery to get metal rods in her femurs and possibly tibias. This is her only chance at mobility and they will re-break and straighten her bones and then the rods will keep them straight and be internal splints for any future fractures. The doctors we have seen here are all being very conservative and do not want to rush into this surgery. Though I understand their perspective, I also see a little girl who turns 5 next week and who has not had the care that she needs to thrive and waiting even longer just delays her further. It is hard and emotionally draining having to be an advocate for your child and having to push to get the care your child needs. Being in the medical field I thought I would have a leg up on this, but instead I am only being disappointed and let down by a broken system that works well enough for the majority of people with standard, well known problems, but rare diseases are not quite as good. It's a bit harder when there are not enough patients to do well designed, large studies that provide strong data to support the few therapies and surgeries that are available. Also, since it's rare, the doctors are not well versed in the latest recommendations and I can't blame them for not being experts. Clearly they are not like I am- reading up on it during every spare minute and discussing and learning from other parents of OI kids that are also living this daily.

I now have even more empathy and respect for special needs parents. This is HARD and I greatly underestimated the emotional toll it takes. Please do not misunderstand. Suzie is great. She is happy, spunky and full of sass and character. She is without a doubt meant to be here with us. I love her and she is easy to love. I felt bonded to her even while in China which is more than I ever expected or even hoped for. I am also, however, an emotional wreck. I feel the weight of doing all that I can for her mixed with the fear and the worry and it is just too much sometimes. I cry frequently & easily. I have been going through a mourning period. I grieve our previous life and the freedom and stability that we had. It makes me feel incredibly selfish and though I absolutely do not regret any of this, I can't help but feel sad at times and miss the old days. Then I turn to Suzie and mourn the life she could be having if we had only found her sooner. I see her determination and her potential and it breaks my heart that she has been so limited by this cruel disease and her circumstances. We knew the first year at least would be very tough. It is. I'm petrified at the thought of her going to school in just over a year. How will I protect her? Will she even be anywhere near ready? So. many. unknowns. I cannot wait to look back years from now and read this and *hopefully* think to myself, "why did I worry so much..she's just fine!."

Anyway, enough of what I have been processing though. Here are updated pictures and some videos of our sweet girl..enjoy!