I wanted to drop in and give a brief update. I can’t believe it, but Liam is 3 months old. Time is flying by! We have officially been home from the hospital for a little over 6 weeks now and Liam is thriving at home. Just last week we removed Liam’s NG tube. Although, he has been taking all his feeds by bottle since before Christmas, we were still relying on the NG tube to administer medications. Removing his tube has definitely forced us to get crafty on how we administer a few of his medications because he doesn’t particularly care for the taste of some. Otherwise, Liam is doing great without his NG tube and this mama is SO happy I won’t have to insert another tube, hopefully ever again. It’s also an added bonus to see his handsome face free of tubes and tape.
As far as medical care goes, February and early March are a busy time for us. We’ll be making trips to St. Louis every other week, which we’re not looking forward as we’re finding the long trips in car seats are especially hard on Liam’s hips and legs. Fortunately, after these appointments our trips to St. Louis will be very minimal. The most important appointment is Liam’s second bisphosphonate infusion scheduled for next week. Due to a few side effects seen from the first infusion paired with the pediatric endocrinologist in Springfield not accepting new patients until March, the second infusion will require a inpatient stay. I would be lying if I said I wasn’t anxious about this next infusion, but knowing what I know now, we will be much better advocates and when needed help teach medical staff on the proper handing of Liam as many have little experience with OI patients.
Furthermore, Liam has an appointment scheduled in April at the Children’s Hospital in Omaha which has a Osteogenesis Imperfecta Clinic. We’re very excited about this appointment as all of the care teams Liam needs specialize specifically in Osteogenesis Imperfecta. Also, Liam will also have a DEXA scan conducted, which will measure his bone density.
Aside from the long list of medical appointments lined up, Liam is developing just as any three month old should. He loves his bath and activity mat time as well as his walks with big brother. Liam continues to amaze us and it’s truly been a blessing to watch him grow and develop with each passing day.
I said I would keep it short and yet here I am rambling on. I’ll bring this post to a close, but ask you to keep our little guy in your thoughts as we venture back to St. Louis for another infusion.
Thank you for the continued love and support❤️
