The past 3 weeks have brought lots of new and exciting changes. We did intensive movement therapy last weekend, and are now seeing a very noticeable difference in Curren's motivation to move. He went to the Connectivity Center in Melbourne for Anat Baniel Movement Therapy (ABM therapy) in the morning and afternoon for 3 days. The therapy was different than anything else we have tried - it was very much on his terms. So he decided what he wanted to do, and the therapist helped facilitate the movement. The philosophy is that the movement becomes more hard-wired in his brain if he is the one that initiates it. So overall, lots of kneeling, reaching, rolling, and scooting through play - with an emphasis on posture and body placement. Curren worked so hard and we are very proud of him! For the first time, he is now consistently pushing up from his tummy to hands and knees, and the sitting down. This is huge, as he had always been stuck on his tummy (which caused lots of frustration!)
Curren is also making great progress with his goals in his traditional therapies. He is making new sounds at speech and becoming really fantastic at mimicking. He has been working in the spider suit, which is a belt and bungee system that provides enough support for Curren to stand and bounce. He has been working on various activities in the spider suit with a rope in front of him - unclipping clothespins, throwing a ball over the rope, and hanging on for support while jumping. He was also trying to say "up" when he was throwing the ball. Working on PT, OT, and ST all at once!
We also just started new therapy at the Scott Center. It's called Applied Behavior Analysis therapy, and we are going to focus on communication, expression of wants/needs, reducing distractions, and overall socialization. His therapists seem very sweet, and Curren really seems to like them a lot. His weeks are pretty jam packed with activities now, but all of these services seem to be making gains in forward progress, and we are so thankful for all of the help that Curren gets.
It was almost 3 weeks ago when we went to Kennedy Krieger and the Children's Hospital of Philadelphia. (And I am so glad we're not up there right now in a bliazzard!) It was a super busy trip - we stayed in 3 different hotels over 4 days. Curren was a rock star the whole trip. He was so happy, and loved everything - the plane, the elevators, the hospitals, and the arctic-freezing cold air. The best part about the trip was the wonderful people we visited with. There is only one other child in the US currently known to have a HIVEP2 mutation, and we were so fortunate to meet her and her sweet mother. It was helpful for me to find another on this journey that feels overall rather lonely. In the context of things, our children are one in a billion, and it's not easy to spark medical interest with those odds. Needless to say, the visits with the doctors were not what I had hoped for. I was impressed by the effort Kennedy Krieger put forward. At one point, there were 5 doctors in our room, listening to me trying to summarize a medical record that is thousands of pages long in 15 minutes. We found out there are structural abnormalities in Curren's brain they observed by reading his MRI from when he was 9 months old. He has a thinning corpus callosum, which connects the left and right hemispheres of the brain, and delayed myelination (immaturity of the plasma membrane that allows nerve impulses to move quickly). This was really about the extent of the beneficial medical information we got from our trip.
The other really wonderful part of our trip was a visit with a very old family friend in Philadelphia. We visited with a beautiful soul who played an important part in my childhood, and I haven't seen her in over 20 years. It is so great to have those people in life where decades can go by, and yet it feels like time has stood still when reunited. It was truly amazing to see our old friend.
The director of clinical genetics at CHOP told me something that put things into context. She said that Curren is a pioneer, and is just writing the beginning of the story. When we got a diagnosis 3 months ago, I started a crazy midnight googling effort. I have reached out to over 50 different doctors, hospitals, research programs, and clinical studies. We got appointments with 2. We have been rejected time and time and time again. When I got some interest from someone followed by a rejection, it shattered me each time. I had hopes that there was some type of medical intervention that I didn't know about that would improve Curren's life. I am realizing now that there is just incredibly limited information available about this gene and the effects when it doesn't work properly. A rare or orphan disease is defined by a condition that affects fewer than 200,000 people in the United States. Right now, HIVEP2 mutations affect 2. We are dealing with an ultra-ultra-ultra rare disease, and there is simply a lack of information available. It's not the answer that I hoped for, but I am at peace with it (and that was not easy). I am going to focus my energy on what I do have control over - providing quality therapies, feeding this baby uber-nutritional food, living in the present, and celebrating the awesomeness that Curren is!. Love this boy!
It's hard to believe that it is now 2016. What a whirlwind of craziness 2015 was, and it has come and gone. Personally, I was not a fan. I mean it was hard to beat 2014 - new fantastic house, new adorable baby, 12 week maternity leave to hang with my kiddos - but 2015 wasn't even in the running. I feel like we were pretty much stuck under a dark stormy cloud the.entire.year. I am so looking forward to a better 2016, and we're starting off with a bang!
Tomorrow we leave for our first big medical adventure up north. We will be seeing several of the doctors that contributed to a recent HIVEP2 medical publication at Kennedy Krieger. We will also be meeting with the director of clinical genetics at the Children's Hospital of Philadelphia. I am super excited (and nervous) about the trip, and really hoping to get some better insight into Curren's care and treatment. I'm also hoping that Curren doesn't get sick from the planes and hospitals, that we don't freeze to death (the low is 16!), and that I can accommodate Curren's gluten-free/dairy-free diet while we travel.
I also wanted to share a great book I started reading over the holiday, and I think it would appeal to all walks of life. "Far from the Tree" by Andrew Solomon is about ordinary people facing extreme, and potentially isolating, challenges. The book focuses on the search for identity through struggle. I underlined a short passage, and I'm going to make it my thesis for 2016:
Life is enriched by difficulty; love is made more acute when it requires exertion.....It is not suffering that is precious, but the concentric pearlescence with which we contain it. The raw grit of anguish will never be in short supply. There is enough of it in the happiest life to serve these instructive purposes and there always will be....We all have our darkness, and the trick is making something exalted of it.
I hope that everyone can make the most of their darkness, and have a wonderful new year. Here's to 2016!
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I am a mother, architect, wife, and a lover (not a fighter) - with a thirst for knowledge. My journey been recently refocused, as my family navigates through the world of medical and developmental uncertainty in hopes of providing every opportunity for my son to be his personal best in life.