Atticus had his 11th surgery (and hopefully his last major surgery) on September 11, 2015 at Arkansas Children’s Hospital with the amazing Dr. Richter. He had a wedge resection of his bottom lip (a triangle-shaped piece cut out – imagine the base of the triangle as his bottom lip and the point of the triangle down towards his chin). It is now a month and a half later and I am amazed with the results. Not only is Atticus’s bottom lip much smaller, but it really changed the whole appearance and size of his mouth. The shape of his mouth is much more similar to a normal mouth and he can now easily pull his bottom lip up to close his mouth. Compared to Atticus’s previous surgeries, especially his tongue reduction back in April (2015), the recovery for this lip reduction was much easier. Atticus was back to drinking that evening and he even ate some ice cream in the hospital not too long after surgery. Once discharged, he took Tylenol for a couple of days, but the pain did not linger the way it did after his tongue surgery and he was back to normal much faster.
Atticus’s speech therapist is also really happy with the results of the lip reduction as it has improved his speech and his ability to drink from a regular cup. We still use sippy cups with straws most of the time just to reduce spillage, especially since Atticus’s tracheostomy stoma has not yet fully closed up, so we don’t want liquids getting in there.
Speaking of a tracheostomy, last week marked Atticus’s first Halloween without a trach. His trach was actually placed on Halloween back in 2012. That seems so long ago. The whole concept of Atticus having a trach seems ages ago, even though it hasn’t even been out for a year yet. I can barely remember the days of suctioning, trach cleaning, trach changes, and lugging all of that medical equipment around with us everywhere we went.
I look at Atticus today and I really can’t believe how far he has come. His journey will continue, as all LM journeys do since there is no cure. He will continue to receive bleomycin injections and laser treatments but the treatments should now become more spaced out, and hopefully with the most traumatic ones behind us. I am so grateful that his journey has taken the path that it has and that we have had such amazing doctors. I’m starting to feel like some of the hardest times are behind us. Even though things are getting easier, I never want to forget the hardship of the last couple months of my pregnancy and the first couple years of Atticus’s life. Those times are what kept things in perspective for me and allowed me to realize what is truly important in life and to be truly grateful for what I have. I never want to lose that perspective.