I went back to work last week! For 9 months, I've been home, my full-time job advocating for my son, working with my husband to get our kiddo the services and equipment he needs. I always tease that we're Braveheart's secretaries since we take and make so many phone calls for him. If I were to pick one icon for our lives, it would probably be a calendar! Specialist consultations, doctor appointments, and lots and lots and lots.... And lots of therapies! With 11 hours of therapies a week, I found it to be a bit overwhelming, but now that I'm back at work, I miss seeing him in therapies so much!
So, for those who've paid attention to my stories in the past, I'm sorry they're so very boring now. Haha. Much like this photo I'm using for this post 😂 Weekly, I miss physical therapy, occupational therapy and speech therapies. And when I am home, we do therapies at the children's hospital where photography of any sort is NOT allowed. I'm crushed by this and I do plan to write them a letter because I honestly find it unfair that we can't record our own children's progress that they work so hard towards! But yeah, being back at work, even if it's just 3 days a week (10 hours a day) is a huge adjustment.
I have updates on Braveheart but I'm not quite sure how to summarize them just yet. So until then... Thanks for reading and happy weekend!
❤️ 2nd Heartiversary! ❤️ (Warning: the second picture is post-op ➡️) Two years ago, we handed our smiley, tiny adorable baby over to a nurse to be taken to the operating room. I remember being overcome with guilt because he was just so happy and had no idea what was about to happen to him. Fast forward to hours later, he was absolutely miserable, ventilated and pleading with his eyes for us to rescue him.
It wasn't the first time - it wasn't even the second time - we'd watched him go off to surgery but it was the scariest. Probably because we'd gotten to know him better. He was 5 months old compared to 5 days old and 3 months old.
Ordinarily heart anniversaries are celebrated on the day of the first heart surgery but we celebrate the second surgery because since then, his health has been steadily improving. I thank God every day for this blessing because things could've been so much worse.
So wishing my little warrior a Happy Heartiversary!
What a symbolic way to end the year: with a cardiology appointment and an outpatient physical therapy session.
This year has been one for the books. Little man turned 2 years old, we went from having just 3 therapy hours at the beginning of the year to 11. Little man gained several new diagnoses, autism probably being the biggest. He learned how to pull to stand, to cruise, to clap (sort of lol), and started being more social again. He also finally got onto the growth curve. Low percentile but he's in there! Lol
We met lots of amazing people here on IG and even in person!
In the down side, this year was also a really awful year for the CHD community. So many beautiful little ones lost their earthly battles, so many fell ill. There were so many tragedies, fatalities and heart wrenching experiences to bear witness to.
In 2020, I pray for an overflow of blessings for those who were touched by tragedy this year. I pray for more improvements and positive progress, both for others and for my family as well.
In today's cardio appointment, we were told for the first time ever that our son's heart has "high normal" functioning. His aortic Arch is wide open and everything looks great! With all of the awful things that happened this year, I felt bad to put this here but I personally love hearing and seeing the good news that others post so... It was a great ending to our year and I know others were praying for us. So thank you so much! ❤️ I hope everyone has a Happy New Year! Here's to 2020! 🎉
Hypotonia can make it reeeally hard to get holiday pictures. In fact, it can make it really hard to do a lot of things. Reaching out, sitting up, chewing and swallowing food and drinks, even focusing one's eyes. Sometimes, my son falls over from a sitting position out of nowhere! Often, he loses his balance while standing with support. One of his physical therapists once said to us "imagine standing stop a very tall stool that is swiveling and rocking. That's how he feels all the time." It made me feel terrible! Prior to that, we'd assumed that he was just lazy. We'd coax him so often to sit up, to stand up, and he would panic and scream. We had no idea what hypotonia was. In a nutshell, it's low muscle tone but it's so much more complicated. The things we take for granted is difficult for someone with hypotonia to do. The simple act of breathing can be difficult! I try to wrap my mind around it. To put myself in my son's situation and it baffles my mind. I think he's amazing still daring to stand, reach out, eat, and look around when he feels like he's teetering on top of a tall, wobbly stool. I'm not sure I would've been that brave.
I pray that for next year's Christmas pics, little man will be standing on his own! 🎄
#aheartsomejourney #braveheart #hypotoniaawareness #hypotoniastrong #chdwarrior #rarewarrior #autismspectrumdisorder #mblogger #mommyblog
Church with Braveheart is not easy!
I'm so behind on blogging but this is a topic I've been meaning to blog about for a while. Since Braveheart was just a couple of months old, we've been taking him to church. It's part of who we are so there was never much question about it. In the beginning we were very nervous because our baby had just had heart surgery weeks before, he still had an NG tube (which we honestly pulled out each time before church... That's another story for another time). He's always been fine in church... Until December 31, 2018. Our New Year's Eve service.
That night everything changed, and since then it's become increasingly difficult to keep him calm in church. He's sensitive to sounds. Particularly loud sounds or very high pitches (hello sopranos!). He literally starts trembling, his heart races, he screams, he bites, he hits himself, clutches his ears, he cries. It came to the point where it became almost impossible to actually pay attention in church. So we stopped going as often, or when we did go, we stayed downstairs and watched the service on TV. Much quieter and calmer. Less people.
Today however, we decided to try again upstairs in the sanctuary. He did nearly jump out of his skin a few times but he also loved @bebewinans and Korean Soul (guest artists today). I was proud of him. He still had a bit of a hard time, and we'll never force him to stay there if it truly is too much for his senses but God is everywhere so we'll all be alright! Even if we worship at home.