2016 in Review/Arrow update December 31 2016, 19 Comments
It’s been awhile! I’ve tried to suffice with quick FB posts and quips to keep those who care and pray abreast, but, this is long over due. Besides, this nicely replaces the Christmas cards I didn’t get executed for the 2nd year in a row! So, without further delay, here’s a little Happy New Year/2016 update.
Justin and I celebrated our 10th anniversary in February! In June we moved out to the country, my old stomping grounds, and we have loved being near so much family. When I say near, I mean next door, behind and in front of! We both ran the Columbus 1/2 marathon this October representing Bryer’s Song which is always very special. Justin enjoys an active role on our church’s worship team playing the drums - we love Westerville Christian Church. He continues to work for Veeam Software, and I stay home with the kiddos while running my Rodan + Fields skincare business.
Remy is 8 and in the 2nd grade at Hylen Souders Elementary. She’s growing like a weed and is one of the tallest in her class:) She loves to read and is almost through the Harry Potter series, but she also has a big interest in history bringing home books from the library on things like The War of 1812 and 9/11. She loves watching the Food Network and someday would love to be on Cupcake Wars:) She loves to play; whether swimming with her cousins, softball, soccer or now she’s enjoying basketball season. She is a lot sweet and a little/a lot sassy. She doesn’t care what she wears or how her hair is fixed, which sometimes drives me crazy, but I mostly dig it. She’s such a pretty girl, but doesn’t know it. I hope it stays that way awhile. She swings between surprising me with maturity beyond her years to quickly reminding me she is still a little girl. I hit the jackpot with this one. So blessed to call her my daughter.
Sander is 6 and in Kindergarten at All The Children Academy. He’s a healthy, happy, rambunctious, ornery, funny little boy. He played soccer and football this year, but is sitting out basketball this season because he said, “I’ve lost focus.” HA. He LOVES movies, snacks and his cousins (probably in that order:) But, mostly he loves to bring a smile to people’s face and laughter from their bellies. He looks forward to getting the hang of reading and is excited for his first season of baseball this coming spring! He’s very tender-hearted. He thanked Arrow for "staying alive for so long” on his first birthday because “I love you soo much.” Sometimes we wonder where he came from, but so thankful he found his way to us!
This is where I’d write about Bryer if he were with us. Bryer would have been 4 this year. Recently, I was in an elevator with a little boy and his mom. I asked him how old he was. “Four.” I thought so. My eyes stung. This doesn’t always happen when I see a boy or girl his age. Maybe it was because I was standing back in observation of what I had desired for Bryer and I? Bottom line, he’s missed and never forgotten. We continue to raise money for Nationwide Children’s Hospital in his memory and were again the #1 fundraising team for Nationwide Children’s Columbus Marathon this year! Incredibly thankful for the continued support. We were also able to help encourage several families during the year through our Bryer’s Song ministry. We look forward to doing the same in 2017!
Arrow Brye recently turned one! There is a lot to say about this little guy. More than likely, if you are reading this, you also read my blog post last December sharing news about "Baby Largent” and our prenatal Tuberous Sclerosis diagnosis. The last 12 weeks of his pregnancy my emotions ran the gamut, but on December 8th, 2015 when he was put in my arms, it was on. My love for him and my will to give anything (but up) was ON. So, here we are one year into this journey of a lifetime. What a year it’s been!
I’ll attempt to provide some clarity to a disease that is sometimes as clear as mud. Thus far, I've avoided getting too much into the details of Arrow (since his birth) because it is extremely up and down and just complex. I learn something new nearly everyday. In fact, during our last trip to Cincy, our doctor said, “We will never be able to give you a straight answer and you will always be looking over your shoulder.” Comforting isn’t it? With that in mind, here’s my best shot.
When Arrow was conceived a gene called tuberin, located on chromosome 16, spontaneously mutated. This gene, responsible for regulating cell growth, became dysfunctional. Tuberin is expressed in many different organs in the body, so tumors (unregulated cell growth) developed in utero and can/will develop throughout his life. He was born with tumors in his brain, heart & on his skin.
He was born with tubers located throughout the cortex (outer layer of brain) that can disrupt the “wiring” of his brain and cause seizures or epilepsy. Some are larger and some are small. He also has tumors (which do have a tendency to grow) within the cerebral ventricles (inner spaces in the brain which hold cerebrospinal fluid). If these grow, they can cause increased intracranial pressure and could be fatal. He will have MRIs throughout his life to monitor these tumors and I am aware of and on the lookout for symptoms that might indicate a problem with these.
He has 2 heart tumors that thankfully are small and so are not impeding the flow of blood. His heart is functioning well. These tumors for some unknown reason, tend to decrease in size throughout life.
Because of an abnormal EEG, he began a medication at 8 days old to try to prevent the onset of seizures which was very successful for the first several months. We made many visits to Cincinnati’s TSC clinic for EEG’s and consults with their team to manage his care. Arrow was never a great sleeper from the start, but things got drastically worse in July. At the end of August, we finally figured out he was having subclinical seizures (meaning there are no clinical symptoms you could see with your eyes) during the night. This was causing him to get up pretty much every hour or less. At 8 months old, he was getting about 6-7 hours of total sleep in a 24 hour period. He was exhausted, but seizures wouldn’t allow him rest. Talk about hard to watch. We tried and failed several drugs. During these months, his development stalled, if not regressed, in some areas. Finally, we found a combination of drugs that seemed to help in October, but we still weren’t completely sure if his seizures were controlled at night (since you can’t see if he is having them). Although his sleep had improved, it was still not normal or healthy, so we wondered if seizures were still the culprit. Or bad habits? Or teething? Ugh. Not easy to dissect or determine.
This brings us to our most recent trip to Cincinnati for his annual brain and abdomen MRI along with another 24hr EEG. We got good news! No seizure activity and no epileptic discharges (pre-seizure activity) were found! Wonderful, indeed. His MRI showed that the tumors in the ventricles remained unchanged and are stable. Also, a big win! With this information, we felt more confident moving forward with some sleep training techniques and his sleep has improved. Praise the Lord! This also meant there was no need to start an additional medication that had the side effects of mouth sores (canker sores) and acts as an immune suppressant (smack in the middle of cold and flu season, no thank you). I had been anxious about the possibility for weeks. This was an answered prayer. Thank you Lord!
His developmental assessment showed he is certainly delayed. This didn’t come as a surprise to me. I could have told the therapist exactly what she would not see from him. Our doctor said, “the jury is still out” on whether he will catch up completely now that the seizures are under control. It’s wait and see. Remember they said they can never give us a straight answer and we will always be looking over our shoulder? Sigh. But one verdict is for certain, WE LOVE HIM TO PIECES! We certainly work with him to help his progression, but we do not CHASE it so much that we miss what he IS. We EMBRACE where he is, because he is marvelous. There is so much that he is able to do. He clapped for the first time 2 weeks ago (and I cried). Besides, he is ALWAYS grinning, and it’s just about the best thing ever.
Arrow is one of those kiddos that will need continued prayer. I hope some of you reading this will just scoop him up into your heart and onto your prayer list.
Here are some of the prayer requests:
-Take this completely from him, Lord. Complete healing.
-Continued seizure control. This will allow for his best rest at night and best opportunity for growth and cognitive development.
-The tumors in ventricles would not grow.
-Development in communication and comprehension. This is the area he is most delayed.
-He would be blessed with a sweet, tender and kind heart towards others. I so desire for him to be able to express and receive love.
-God would give us a keen sense regarding his needs. That with discernment, we would be helpful in formulating his care plan and what therapies would be best alongside his doctors.
-His life and this journey would always point to Jesus!
If you read this until the end, thank you!! I wholeheartedly believe in the power of prayer and I’d be so humbled, honored and grateful to know you are praying for our baby in 2017.
Much love and Blessings in this New Year,