We have been deeply touched by the outpouring of love and prayers we received during Levi’s surgery. We apologize for our recent lack of communication, as we encountered several challenges related to his temperature control, sodium levels, pain management, and vomiting. However, we are now back home, and nothing brings us greater joy than seeing Levi finally out of the hospital and content.

 

As we adjust to our new routine, we are facing difficulties with sleep, typically getting only 3-5 hours per day. We are hopeful that this will improve over time, although we understand that it can be a common struggle for children who have undergone hemispherectomies. Additionally, due to swallowing issues, Levi has had to leave the hospital with a nasogastric feeding tube. While he is making gradual progress with his right leg, we have yet to see significant improvement in his right arm and hand. To address this, he will begin using a splint to prevent his fingers from curling due to lack of use. As a result, we anticipate being in therapy 5-7 days a week.

 

Despite these challenges, we were overjoyed to witness Levi's remarkable performance during his speech evaluation today. He displayed exceptional communication skills, surpassing his current age level and ranking in the 76th percentile for speech development. We are immensely grateful for the ongoing support, prayers, and well-wishes from so many people. We kindly ask for your continued support, as Levi's recovery journey will undoubtedly be long and arduous. We are confident that with everyone's encouragement, he will exceed all expectations.

 

Interestingly, Levi has developed a newfound passion for musical instruments, and his enduring love for Moana remains unchanged. We are forever thankful for the unwavering support from everyone. We will provide another update soon. ♥️