There were SO many firsts for our baby girl over the last month, all exciting and new! Her first birthday as a member of the Lu Crew :), her first trip to the beach, her first sessions with a new physical therapist and on and on. A look at how she's changed and grown over the last 30 days, with a big medical update thrown in for good measure, on this day, exactly 10 months since we first met her:
Language. This is still an area we pray for great progress in. This is a BIG goal of mine for Bels over the summer - to see a language explosion for our girl. I ache to hear her voice more, to hear her use her words to communicate with us, but it has continued to be pretty slow going. So, we continue to pray and continue to push. I know Jesus hears our prayers. <3
Motor. The big news here is that we started working with a new physical therapist this month! We were ready for a fresh approach with new eyes, new knowledge, new ideas, and new recommendations, and I think we hit the jackpot! Thanks to the referral from our speech and occupational therapists, we started working with our new PT, and it was clear that Bella liked working with him immediately. Don't get me wrong - physical therapy is HARD for Bella. She has come so far but has a ways to go - due to decreased tone, nerve damage, lack of exposure for years, etc. And there are tears every session. BUT we encourage her and support her with love and praise. We know what she is capable of - it's just going to take time and a lot of hard work. But we are behind every step she takes, stair she climbs, and jump she attempts. :) And her therapists are doing an amazing job helping her continue to grow and achieve.
Cognitive. Sometimes, Bels will just bust out a new skill that has us shaking our heads in amazement. Like the other week, when she was able to identify emotions shown on various teddy bears during her OT session. She has so much knowledge that we don't even know about! It's another reason I am so anxious for her speech to come - I want to know what she knows! 'Cause this girl is a smart cookie!
Out and About/Playing. Like I said at the start, this was a big month for our little lady! We celebrated her 3rd birthday at a magical, rainbow unicorn party (in keeping with her song).
We traveled to the beach for the first time as a family of six, with two other families we love.
She accompanied us to many end-of-school-year celebrations for her big sibs.
Etc. Bella had four big appointments/evals this month: First, I had her preschool eligibility meeting with our psychoeducational team, where we learned she will be attending the developmental preschool at our elementary school and served under an Individualized Education Plan (IEP). As part of her curriculum, she will receive speech, occupational, and physical therapies. We also plan to continue these services with her current therapists at our home. So, our sweet girl is going to be inundated with therapies over the next year! And I think she is going to SOAR once she starts school. She is so eager to learn and to please, and I know the teachers and therapists are already smitten with our sweet little lady.
We also received some news that shocked me in the best possible way - it literally made me burst into tears when I heard it. Last summer, on June 26, 2017 (which happened to be my 13th wedding anniversary), my hub and I and our (then) three kiddos were at the beach with his "side" of the family. We received updated photos and videos of our girl that day, and after sharing them on social media, had multiple, experienced people contact us privately to gently share that they believed Bella may have a form of a specific, serious chromosomal abnormality due to some of her physical features and constellation of symptoms. You can imagine that this was difficult to hear. BUT our love for our daughter never wavered, not for a single second. She has always been ours and we could not get to her soon enough. But it is never easy for a parent to hear of potential unforeseen, unexpected obstacles for their child (and don't get me wrong - there are plenty of obstacles we are working hard to overcome now; this was a diagnosis we had just not seen coming). No matter what, we knew that God's plan was in place and better than we could ever come up with on our own. And we knew that, no matter what, she is not a diagnosis. She is a child, she is our daughter, one who is perfectly and wonderfully made in God's image. We knew that. We know that. But, ever since that day back in June 2017, we have been waiting to learn if she did, in fact, have this specific, well-known syndrome or another significant chromosomal/genetic abnormality.
We had basic chromosomal testing done shortly after we got home from China, and it was normal. But we knew we needed more extensive testing. At this point, our physician and therapists agreed that there was likely some form of genetic or chromosomal disorder, whether it be this syndrome or something else. About six weeks ago, we saw a developmental pediatrician who also agreed further examination would be helpful. So, they swabbed her cheeks and sent it off to Colorado. We've been waiting for the results since then. Last week, my phone rang. It was the nurse calling with the results. I grabbed a pen and a post-it and note, ready to write down all the findings that had emerged. I took a deep breath, braced myself, and prepared to hear the news she would deliver. And then..."Dr. Stegman wanted me to let you know that we received the results from the genetic testing. Her results were normal." Cue my tears. I was shocked. Only God. Now, there could still be something we are unaware of, and in fact, we have one more appointment with a geneticist in September to be sure. But for now, these results ruled out hundreds of chromosomal duplication/deletion disorders. I can say that I felt like I took my first full breath since June 26th on that day, last week. Regardless, no matter what the results reveal come September, we know that she is created to be exactly who God designed. Praise Jesus, our Healer and Miracle Maker.
ANYWHO, Bella had her 3-year well-check the following day (the day after we received the results for the genetic testing). She is a healthy little girl who is continuing to make developmental gains, grow, and melt the hearts of those around her. :) When I shared the news about the normal genetic test results, our pediatrician expressed that he was not surprised, as the girl he was examining that day was vastly different than the one he had first seen so many months ago, when we first brought her home from China. <3
And lastly, we saw a new (awesome!!!) orthotist just yesterday, who briefly casted Bella's legs in order to create better orthotics for her sweet feet. We are anxiously awaiting them to be ready for her to rock in just a few weeks!
And lastly, we saw a new (awesome!!!) orthotist just yesterday, who briefly casted Bella's legs in order to create better orthotics for her sweet feet. We are anxiously awaiting them to be ready for her to rock in just a few weeks!
Bella, we are so proud of you, darlin'. We know you work harder than any 3-year-old should ever have to, just to try and "catch up" with some of these milestones that come so easy for others, but you are making great progress and we are always, ALWAYS behind you! On to Month 11 we go. Keep doin' yo' thang, sweet girl. We love you with all our hearts!
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