Many people wait a lifetime to meet their hero, and we feel blessed to be raising ours.
Tanner Blake Rosebrook was born on August 13, 2014, at 35 weeks. He weighed 6 lbs, 2 ozs when he was born and received a clean bill of health immediately following. But even before Tanner was born, he never seemed to move, and I only felt him kick approximately 5-6 times throughout the pregnancy. We were continuously told he was “just a sleepy baby.” It wasn’t until he had his “car seat test” that our lives were changed forever. During the test (that the nurse promised was only one hour, and we could have him back with us after), our “plans” for life drastically changed. A doctor came in well after the hour was up to let us know that they felt he had a seizure and needed to transport him to a more well-equipped NICU.
Once I (Mom) was able also to be transported only a few hours after Tanner, we learned he was immediately put on phenobarbital, with wires and monitors, alarms, and oxygen. The tears flooded us, and so did the heartache, uncertainties, questions, and more and more tests. Tanner didn’t wake up until a week or so after due to the high amount of phenobarbital they had him on. While there, he has to be “bagged” a few times as well because he would stop breathing completely. Once they determined he was not having seizures, that medication left our life, and we finally got to see our son’s beautiful blue eyes. The nurses told me it was “Tanner’s Way.” Boy, were they right! To this day it is “Tanner’s Way,” every day, every moment of every day. After two weeks, none of the incredible amounts of tests that were run came back abnormal. Everything was within normal range, and we were left with even more questions.
We did go home with an apnea monitor by choice, but still no answers. As the days passed by, and Tanner contorted and screamed and never slept (a total of 30 minutes in 24 hours sometimes), we were continuously still told by the neurologist that he was fine, just a preemie baby who needed time to catch up. At around two months old, Tanner was denied Early Intervention therapies. Again, I was told he’s just a preemie and needs time to develop.
His eyes went every which way. He still couldn’t hold his head up. He wasn’t babbling, only screaming in pain. He was starting to smile here and there, but he was never sleeping, and at 5 months old, Tanner became sick with a cold and cough and would stop breathing at times. This wasn’t anything new to us, and we were learning we needed to handle a lot on our own because no one was listening. We saw his pediatrician, who sent us to the hospital for observation due to his breathing issues, cold, and cough. He was diagnosed that night with RSV at our local hospital, but I knew it was our “in” to get him seen by specialists at the Children’s Hospital of Philadelphia, who had previously told me it would take months. I asked for Tanner to be transferred there. Though I was told that they probably wouldn’t transfer him because our local hospital could treat his RSV, I desperately explained everything that had been going on and pleaded with them to call CHOP. Hours passed, and a doctor came in to tell me he would, in fact, be transferred and that this doesn’t usually happen. Blessed.
“Just like the day Tanner was born, I felt beyond blessed, excited, nervous, everything, I felt everything.”
When Tanner arrived via ambulance at the Children’s Hospital of Philadelphia, I was parking when I received a call. “We coded your son, something is wrong, and you will be walking into about thirty doctors and nurses when you come upstairs.” My heart sank, but I felt so relieved…. I knew what they were seeing. I knew he was contorting and stopping breathing, turning colors, screaming, and all of it. I knew it. I lived it. And I would finally be heard. I walked into his room and asked where to put my bags. Everyone’s jaws just about dropped to the floor. I was then asked if I saw what he was doing. I told them I was grateful we were there, and they had quite a mystery to solve.
After one month at the hospital, we were sent home with “dystonia.” Finally, we had an answer. We knew what to call it, and we were relieved. Tanner was started on a medication that would show effects in about a month or two, but we were seeing very positive changes within three days. We began his exome sequencing, along with me and my husband’s, to see what else could be going on, but we were hopeful. We could move forward. Soon after getting home, he was re-evaluated for Early Intervention therapies and began them within two weeks, as he was finally approved. The hospital had night nursing at our door the night we got home due to his constant apneas, both central and obstructive, and his rare times of actually sleeping. Things were finally falling into place, it seemed. The “celebration” ( of sorts) did not last long… every month, we were back at that hospital for heart rate plummets as low as 28 and apneas, for severe dystonic “episodes” and paralysis, for much more than just “dystonia.” Test after test and again, nothing was showing abnormal. Tanner stumped the specialists from day one and would continue to do so.
It wasn’t until April 21st, 2015 (Tanner was eight months old) that he was diagnosed with Alternating Hemiplegia of Childhood. I was given three printouts from the internet of “possibly outdated” articles, and the doctor left our room as quickly as she came in, stating that she knew nothing more than what was printed. More questions flooded our minds, and more uncertainties filled our lives. Again, our “plans” of how we thought life would be had to change dramatically, and now. That was and is a hard challenge to overcome.
Our lives are based on Tanner’s episodes. Our calendars are filled in pencil because everything can change in an instant.
As soon as Tanner allowed, I was researching anything and everything I could on AHC. I was learning so much, but at the same time felt empty. The connection of others like us I had not found. I needed to know that we were not alone. I was hungry and desperate for answers I was not finding immediately. Perhaps, because I couldn’t believe we finally had a diagnosis, a name for all that Tanner was suffering from, or maybe because, after all the specialists that Tanner stumped, I became somewhat untrusting of research articles and scientific journals. Either way, I had a name to it all and would never stop learning about it. I would make it my mission in life to connect to others, to make our new “normal” actually feel “normal,” for Tanner and for our family, involving those that understood, listened, and never questioned us on what we saw and knew wasn’t right. I quickly began connecting with other people who understood Tanner, understood our lives without having to say a word, and to whom we are forever grateful. We quickly learned that the AHC community may be small, but we are mighty!
There is never a day that passes where hope is lost. Every day is a gift, every day is a challenge, and every day hope can be seen in the eyes of our sweet boy. HonorariumTanner1Tanner began seeing specialists that were either “open” to learning something new, something rare, as soon as we could get him in for appointments. Tanner now has what I call a “small army” of specialists, therapists, doctors locally, and specialists who are knowledgeable specifically with AHC. All individuals involved on “Tanner’s Team” are incredible and work diligently to provide him with the best possible care.
Tanner has occupational, speech, and physical therapy 3-4 times per week. He usually has 1-3 appointments per week as well. Up until Tanner was around 18 months old, we couldn’t even step outside for more than a couple of minutes each day. Tanner couldn’t handle being in a car seat, he couldn’t handle the world for very long without constant painful episodes. He began going to music class with other children, to children’s classes at our local library, and to a parachute play class with others.
Tanner’s world has finally opened up for him. He is now 20 months old, an incredibly social and interactive child, who wants everyone’s attention always, who loves to cuddle and be goofy. He loves the parachute, and music, his brother Collin is his best friend, and he has an incredible amount of determination to have it “Tanner’s Way” at all times. Tanner has severe dystonic episodes daily, he has paralysis randomly throughout every day as well. He has apnea and breath-holding spells, and autonomic dysfunction each day. He has feeding issues, tremors, nystagmus, and the list goes on. He still can’t sit up on his own unless propped, and he can’t crawl, walk, or speak actual words yet, but he has strength, determination, hope, and an incredible cheering squad of people beside and behind him. You would never know Tanner suffers on a daily basis from looking at his pictures and into his beautiful blue and hopeful eyes. He’s a smiley boy who loves to be loved. He loves to dance around, he loves to laugh uncontrollably. He loves bath time and diaper changes. He’s a quirky one, just like his family.
He’s been perfectly placed, and we are forever grateful to each and every day for our sweet blessing.
