Happy Thursday everyone! I hope you all had a great two weeks. Ours has been busy! Declan turned two this passed weekend! How crazy is that? I had to work on his actual birthday but Ethan did not disappoint that little man. They started their day with snuggles and shows. Off to Krispy Kreme, a visit to me at work and then home for naps. After snacks they headed to a park, Little Ceasars and then home for a picnic with me on the porch for dinner. To say they dropped into bed is a definite understatement! We were able to celebrate with family the next day and he absolutely loved his train cake that Ethan and I were able to make for him. It has become a tradition that we make cakes for our boys birthdays. But not just regular cakes, they need to be 3D in some way. Ethan and I always have a good time working together!
I wanted to share some exciting news with you all! I was a little vague in my last post about why we were heading back to U of M. Well while we were there the last time, they never wrote up an actual treatment plan for Oliver. Their visit notes were vague and full of possibilities of what they might do to help Ollie but never actually committing to anything. Well, we were able to get Ollie another appointment for this Friday morning! Our goal for this appointment is to get the doctor to commit to a treatment in writing. With this in hand, our doctors here in Grand Rapids can petition to insurance that they feel like Ollie will have a better chance in Boston to get the competent care that he needs. Although U of M is a wonderful place, Ollie is an experiment to them and somewhere where we feel like he will be looked upon as a guinea pig. So even though we are jumping through hoops like circus clowns with insurance, Ethan and I haven’t given up the fight. It might be a baby step but we are getting there.
Please keep us in your prayers as we travel down to U of M later this evening. Ollie’s Children’s Special Health Insurance was able to put us up in a hotel for the night so we wouldn’t have to leave so early in the morning, which is a true blessing. Currently, Ollie has developed a mouth sore from his medication that has been very painful. It is making it hard for him to eat and drink. It’s never fun to travel when you’re not feeling well so keep him in your thoughts as well.
One thing that I have been grateful for in Ollie’s journey is the access to social media. Whether that be Facebook, Instagram, or our blog. To have an outlet to share our story is incredible. Within the last year or so, I have been on the hunt for others that are like Ollie. Ethan calls it “creepin'” but I have dubbed it my “Lymphie Search”. I have had the most luck finding families on Instagram and have developed friendships with some of these moms. It is truly amazing. We bounce treatment plans, medications, fears and hopes off each other. What is even more of a miracle is that they span the globe. From Serbia, Australia, Hawaii, California, Russia, we are all going through the same thing. These moms are fierce! I have learned what it is to be a true advocate for my boys by listening to these stories of parents who never give up for their babies. With each new family found, I find myself gaining hope for Ollie. Knowing that there have been successful surgeries done, medications that have been helpful and kids that are soaring in mainstream schools gives me reassurance that Ollie will be okay.
One family in particular that we have been chatting with lives in California. Their daughter Olivia is 4 I believe and is getting ready to have a 50% reduction in her malformation. The biggest issue that these kids go through with these types of surgeries is the possibility of hitting a nerve in the process. Once a nerve has been hit, there is no going back. That function is gone. Prior to a major surgery, nerve mapping is done to give the doctors a more detailed look into where these nerves travel to. Ollie will have this done before any surgery as well. I will be giving an update about Olivia once she has her surgery in October but if you think about it, keep sweet Olivia and her parents in your prayers during this scary time. If you are on Instagram and would like to follow her story you can find them at @liviesstory.
Having a support system to bounce thoughts off of is something that is essential for everyone. It is reassuring to know that there are others out there that are feeling the same way you are, experiencing the same struggles and pondering the same thoughts. It might take time to find them but please do not stop looking. It took me almost three years to make connections in the lymphatic malformation community. It is still hard for me to make that initial connection but once I do, I have been blown away by the kindness and openness that surrounds this community.
So if you are feeling lost or secluded, do a little research. Find others with common interests or goals. It might take a while and you might even need to branch out beyond your borders but they are out there. If my theory stands correct, there are others out there searching as well and my bet is that you will start making meaningful relationships even when you least expect it. Have a wonderful two weeks my friends! See you in October!