Malachi has had SUCH a great week with lots of exciting adventures! Before we dig into them, I want to give you a few medical updates.
As you already know, Malachi experienced severe brain damage during the first few weeks of his life. His brain hemorrhaged on both sides after his traumatic (and early) birth and each scan in the subsequent weeks showed more and more white matter which essentially means pockets of his brain were dying off/disappearing. His brain damage is so global (meaning all over) that there is no predicting the future in regards to his cognitive development.
His brain damage has led to multiple issues: hydrocephalus that requires a shunt to move fluid out of his brain, cerebral palsy which in Malachi’s case causes some muscles to be too tight and others to be too loose, corticol visual impairment making him legally blind, even motility issues as his brain struggles to communicate to his GI muscles to push excrement out. Malachi’s brain is essentially the primary cause of many of his struggles. His brain is constantly firing in abnormal spikes making sleep a struggle, and results in several seizures per day.
He regularly sees a neurosurgeon as well as multiple neurologists (including an epileptologist) as we continually try to find ways to help his brain calm down. We have tried multiple medications, some effective and some not so much, but each time a new medication is added it can be very dangerous to remove it. Often times it takes several months to slowly wean him off of a seizure medication, for fear that the sudden change will spark more seizures. We also have to be very aware of potential side effects, which can lead to more specialists and bigger health issues.
I am sure you have heard about the success some epileptic children are having with medical marijuana. Unfortunately we live in a state that has not legalized it yet, and we don’t feel called to uproot and leave in pursuit of that treatment quite yet.
A few months ago I read about Cannabidiol (CBD) Hemp Oil which is actually advertised as a dietary supplement. It is legal in all 50 states and can be ordered online and shipped to your door. As I researched it, I read about the amazing things it can help with…seizures, sleep habits, tight muscles, speech, etc. CBD is made from oils taken from the hemp plant, which only contain trace amounts of THC (the “high” you would get from marijuana plants). So essentially it carries the medicinal properties of marijuana but is non-psychoactive.
I ordered a bottle back in November with the intention of starting it with Malachi, but we were working through some diet changes and I wanted to wait until we had zero other variables in the equation. The bottle traveled with us from the cabin to Ohio, and accidentally got left behind! It has to be refrigerated, so shipping it wasn’t really an option. We were able to get someone to bring it down to us on a recent trip and I was able to introduce it about two weeks ago.
The recommended dose for Malachi is 1 dropper full twice a day, but I didn’t feel that we should start with that much so we are giving him 1/4 a dropper full one time a day. This is 0.3mls (a tiny dose…just a few drops).
I have been keeping a log to track the changes we see in Malachi, and I have to tell you that the results are impressive! The only catch is that the CBD can mess with the absorption of his seizure medications (which can be dangerous), so there are rules about how close to medication time he can take it, and it is highly recommended that he have regular blood draws to check his levels. So here we go…
For the first few days, I gave Malachi a small dose in the middle of the night. We started noticing his muscles relaxing and his hands extremely loose and open, which was wonderful! His seizure frequency didn’t change, but the severity lessened GREATLY. They were shorter and did not seem to overtake him as much. But he was requiring a big nap mid morning which was interfering with therapies.
After a few days I decided to try changing the med time to see if that would help. I gave it to him around dinnertime and that night Malachi slept for 8 hours straight. And yes, I mean straight! This AMAZED me but I vowed to not get too excited until it could be repeated. That day Malachi was thinking clearly, interacting much more, and even mimicking others around him. His hands were open and functional instead of balled up like a fist, and his seizures were still calmer than pre-CBD.
So the next night we tried again…he slept 7.5 hours STRAIGHT! He also takes a 30-45 minute nap on days he takes CBD. The next night I didn’t make it back from church in time to get the CBD in him and absorbed before nightly medications were due so we took the night off. He went to bed at 10:30pm and woke up at 2am for the day. We were back to the same old, and he (and I) was exhausted all day.
Overall we are seeing some great changes in him and are encouraged enough to continue this course.
Friday we were scheduled to meet with Malachi’s neurologist but she was unable to make the appointment. So instead we met with his epileptologist who was able to discuss more of the overnight EEG results with us. He essentially confirmed what we already knew: that Malachi has a constant chaotic brain wave pattern, and most of his seizures are sparking from the right side of his brain. He also re-affirmed that he is having both tonic and clonic seizures daily, and LOTS of “sparks” in between the big episodes.
He has given us a new medication to research that could possibly help control the seizures, but adding a new one would require weaning an old one. Adding new seizure medications and taking others away can be a dangerous game for a child with epilepsy and requires several weeks to safely do. Jake and I are still doing some research, and would like to give the CBD a little more trial time before we make any other drastic changes.
We also tried to reintroduce milk based products into Malachi’s diet by giving him 6 ounces of whole milk yogurt. He ate it like a champ, but within the hour he had a massive seizure and vomited for the first time in weeks. For 24 hours he continued to have BIG seizures, including two where he stopped breathing for a bit. We call these the “scary/stop breathing seizures” and hate them with a passion. They terrify all of us including Malachi and take so much energy out of his little body. So the lactose intolerance issue is still very much there. I think it has more to do with the excess mucus created.
Okay, so enough medical talk! Jake had a birthday this week and thought it would be fun to take Friday off to attend the appointment with us. Afterwards we headed to the Chattanooga aquarium to take Malachi on a big adventure. We have never considered the aquarium before as Malachi’s vision has been so poor. Since Malachi’s vision issues come from his brain and not his eyes, it is something that can improve over time if the brain “re-wires” itself. Lately we have noticed some huge improvements with his sight and thought we would give it a try.
And oh were we so pleasantly surprised!! Apparently turtles love wheelchairs! Turtles of all shapes and sizes flocked to Malachi and they had just enough contrast that Malachi was able to track them! I was so overjoyed I almost broke down into tears as I watched him study the turtles and fish. He would lean up in his wheelchair to tilt his head down to them to get a better look. He was so excited, fascinated, and intrigued!
As you can see in that last picture the fish alarmed him a bit. The staff was excellent and allowed him to touch a snake, sea urchin, conch/snail, and a crab. His reaction to each of these was so different, and it was so fun simply watching him learn about new things.
We even went into the butterfly exhibit with him, and several of the butterflies flew close to his face. Oddly enough, these close encounters seemed to scare him a bit, especially when one landed on his arm, just within his line of vision. I managed to catch it on camera as he jerked his arm away from the “winged monster”! He was so angry, it was comical.
His other favorite exhibit was the jellyfish, as they provided lots of contrast with their bright bodies.
It was such a successful visit and it brought me an overwhelming amount of joy and encouragement. I saw so much of my little almost-four-year-old boy in that visit, and he soaked in every detail that he could see and hear. It was just the boost I needed to remind me of how much he desires to learn and experience new things.
We are continuing to work on his alphabet letters and sounds. We try to go through ten a day, saying each letter and sound and asking Malachi to repeat the sound. He tries to hard, and each time we jump around and rejoice like he just solved a college level math problem. He loves the game and we love that he is learning.
His memory continues to impress us. When we moved we lost access to a few of his favorite channels and shows. Last week I found an episode of one of his former favorite shows and as soon as he heard the voices he was overjoyed, giggling and beaming. He definitely has an opinion about things. We also had a 3 year old church friend come by for a short visit this week; I told him about 30 minutes before she arrived that his buddy Meredith was on her way, and he listened in anticipation with a smile on his face until she walked through the door. We are seeing so much of his personality these days!
I read a quote this week and found myself saying “AMEN” and thought I would share it with you:
So often I hear the phrase “God gives special children to special parents” as the speaker nods sympathetically and pats me on the back with silent support. But the truth is, God equips each of us for the tasks he has chosen to give us. Four years ago I was not equipped for a life with Malachi. But in the last four years I have watched God mold Jake and I into caregivers for a precious gift. We don’t deserve an extra pat on the back, nor do we desire to be seen as superhero parents for stepping up and raising a medically challenging child.
I just think it is important to remind you that God never gives us tasks without providing us with the proper tools needed to succeed. He may not give you the whole tool box all at once, before the assignment is given. He may in fact give the tools to you one by one, only when and if they are needed. But trust God to equip and accept the challenges, both good and bad, knowing that that challenge has been hand picked exactly for you for a reason.
I literally just went cross eyed so I think it is time to wrap this entry up. I hope that as you read about Malachi’s improvements and weekly successes you will be reminded of the power of our God. Please continue to EXPECT miracles for Malachi, and please continue to thank the Lord with us when we see those miracles come to pass.
Jake, Leah, and Malachi