10 Months

Liam is now 10 months old! There has been a lot that has happened since my last update. A lot of setbacks, but some progress. At this point, Liam’s epilepsy is his biggest hurdle. Since September we have added new seizure medicine, and we have successfully weaned off some to help tame his epilepsy. It’s all about finding the right concoction for his body. There were days we were performing CPR multiple times, and then we’d go a few days seizure-free. Speaking for the month of January, his epilepsy has been in a good spot. This will always ebb and flow due to sickness or another trigger, but for now, we are grateful to be in a decent spot. Liam is on and off oxygen since my last update, depending upon what his body needs. Whenever we have sickness in the home he will be guaranteed to have oxygen for extra support, or when he has continuous seizures he needs a little extra help. Our week to week looks like lots of appointments, therapy, and lots of smooches and snuggles.

Liam has been in physical therapy since the fall. It’s incredibly sad to see how his diagnosis doesn’t allow him to hold his head up, or sit up like other babies who naturally develop these milestones. He has low muscle tone, so he’s floppy like a newborn. We anticipated and knew this would be the case, and we love Liam for Liam. My Mama’s heart is so proud of him watching him work hard for the next milestone, however long that may take him. We are working on neck strength, but really physical strength overall. He’s learning how to grab things and learning new textures from objects we place in his hands. As he learns to grab things, he has also learned how to pull off his nasal cannula and pull his g-tube! He seems to really enjoy PT, but sometimes plays possum with his therapist- pretending he’s asleep and peeks out one eyelid. He has an opinion 🙂 You can find some pictures below of him working hard at PT. 

Our next big update is Liam is expecting to be a big brother come May! Our care for Liam will never change, despite new chapters for our family. We will always advocate and fight for Liam, praying for the Lord’s discernment in all circumstances regarding his health and care. 

I created another video showing our family these past few months since September. Liam has enjoyed going to apple orchards, trick or treating, Thanksgiving, picking out a Christmas tree at the tree farm with his siblings, Christmas, sledding and feeling snow falling on his face. What a shift from discharge in June when he felt the sunshine on his face for the first time! We are beyond grateful to watch Liam experience these different seasons. It’s beautiful to watch Liam physically experience the seasons, when we were told this would likely never happen one year ago when we received the diagnosis. As he’s been home, we’ve tried to normalize our life with him the best we can, pushing against fear so we can fully enjoy our sweet son. These past 10 months have been extremely difficult, but extremely sweet. Precious memories that we will forever hold tightly to our hearts.

2 Corinthians 4:8-10 “We are hard pressed on every side, but not crushed; perplexed, but not in despair; persecuted, but not abandoned; struck down, but not destroyed.”