This time of year is difficult for me. The memories revisit fast and furiously, and I constantly reflect on Bode's 2021 PICU hospital stay. Social media does a good job of popping up photos when I least expect it.
Of the many emotions which swamp me, gratitude is prevalent. I am incredibly grateful he is here with us and doing so well. These emotions, whether they were terror, agonizing worry, or gratitude, I had managed to keep at bay during that challenging period because I needed to be strong and focused on the positive while my baby fought for his life. Now, I can feel them peeking through, resurfacing. It's two years later, and it's time to allow the feelings in, acknowledge them, and sit with them.
On May 18, 2021, we received the devastating news that Bode had a brain tumor. I don't recall much from that moment except for the overwhelming fear and heartbreak I felt for my precious baby and what he was facing. My mother's intuition had sensed that something was wrong, but I never anticipated the severity of the situation.
May 30, 2021, two years ago today, post-brain surgery, we were told that Bode had contracted two forms of Bacterial Meningitis. He was seriously, seriously ill. Sometimes I think I barely remember how sick he was, but when I see the photos, it all comes rushing back. Bode didn't move for three days. He didn't interact. He just slept. Looking back, I realize how frightening the situation was and how close we came to losing him. Some children do not survive meningitis. We are incredibly fortunate to still have our baby boy with us today.
The grace of daily life with Bode cannot be adequately expressed. He is not only my child but also my best friend. Being around him brings new meaning to the word 'joy!' His personality is blossoming. Knowing Bode is to understand his incredible presence.
Bode was discharged from Sanford Children's in July 2021. He's been on an incredible fast track, grabbing life with two hands and exploring it with every resource he has. It's amazing to think that at discharge, age 1 1/2, he couldn't sit unaided. The following are updates to Bode's life since our last CaringBridge entry:
- Bode has completed the first half of Early Childhood and will be returning this fall. For those unfamiliar with Early Childhood, the School District offers a program where he attends school four days a week for half a day. He receives speech, occupational, and physical therapies at school. He loves going to the "teacher's house," as he calls it. He doesn't even have time to say goodbye when I drop him off! I'm thrilled that he's enjoying himself so much.
- Nowadays, he talks non-stop. All the time! Even his speech therapist at school confirms that he never stops talking. Clearly, he didn't inherit that trait from me. 😅 It's entertaining to hear his little voice every day, and my favorite moments are when he sings to me.
- Another cause for celebration is that Bode has started walking unassisted! We've been eagerly waiting for this, and now he's doing it. Chaz and I recently reminisced about how we used to say, "He'll be walking soon," or "He'll be walking in no time," Now it's finally happening. Our hands are full now! We have a three-year-old who is mentally three but not yet physically there. It's a different experience than we imagined, but we're immensely grateful.
- Regarding medical updates, Bode had his yearly head scan in April. The fluid in his lateral ventricles is entirely normal, exactly where it should be. However, he does have increased fluid in his fourth ventricle. It might be his new normal, or it could require another shunt for treatment. Only time will tell. We have another MRI scheduled for October to check if the fluid has changed. Bode has graduated from GI care, and his weight is no longer being monitored. He's doing great, weighing in the 33rd percentile, while his height is in the 2nd percentile. We consulted an endocrinologist regarding his height, and for now, the doctor will monitor his case until he's a bit older. Around the age of five, we can determine if he needs growth hormones. His thyroid levels are also low, possibly due to his previous brain surgeries. The doctor will also monitor this and retest in about six months to assess the situation. We've been seeing an immunologist in Omaha who has conducted multiple tests to identify the cause of the fungal infection Bode experienced. We are still working closely with her and continue getting tests done to ensure we are not missing anything.
Overall, Bode is showing fantastic progress. He is our incredible blessing and we are beyond grateful to have him here with us. Our journey has been incredibly challenging. However, we rely on each other and take it one step at a time.
