For my sanity and hopefully for the ease of reading, I have broken up Gideon’s progress by day below. In other news, since there is nowhere for special needs kids to really get out and play in our area, we have decided to turn our yard into a play area for both Gideon and Kaylee. We hope to set up play groups, too. We will have Kaylee’s trampoline and truck outside, a small kiddie pool, and 2 new additions that I hope Gideon will be able to enjoy—a Sandy Lagoon (a water feature and sand digging area) and Bubble Science (pictured below). To the left, you see tonight’s picture of Gideon just before bed (sleepy boy!).
Days 142-146: Gideon was still up and down on roller coasters at about 3-4 days per cycle. He was eating more on the good parts of the cycle. Some days were dismal on the down parts of the cycle. We think he will come out of this in the next few weeks. This seasonal cycle seems to correlate more to the weather (much warmer days) than it does to specific dates of the year. He was still tight on the “off days,” but nothing near what it would have been prior to the CBD trial. Despite being on a down swing, he tried to pull up his knees as if to crawl. He has also been very vocal. Yet, we are being vigilant with the bottles that he does get on the down swings by ensuring that they are even more nutrient dense than they would be normally (we don’t use pre-made solutions, we have our own “recipes” for Gideon’s bottles).
Days 147-157: He still had not been getting his second medicine bottle, but that was only because he was eating later in the day and he would fall asleep before he could eat a bottle with medicine (10-14 hours after his first medicine bottle, per his neurologist). We try to do at least 10 hours between, because 12 hours is optimal. Despite this, he was eating more than he was earlier on in his swings. He still had not had any seizure activity that we could tell. He was no tighter for the lack of meds, which was a relief. He had also been vocalizing more and more. He was still working very hard on getting his knees up to crawl. Sadly, we learned that he will have to wait another month or 2 for his stander.
NOTE: The following week, Gideon had neurologist’s appointment. He was astounded by Gideon’s progress (regarding movement) since being on CBD. The doctor had not seen him since before the trial. Also, the doctor did not want to take him down on his Keppra dosage. Yet, he did say that the CBD supplementation could be the reason Gideon has not had seizures despite the lack of consistency with Keppra. That same day, Gideon also saw his PCP. Gideon had gained a pound since his last appointment about 4 months ago. He was not satisfied with his growth chart, despite it still having gains. So, we will be referred out to a dietitian. It is known that people with CP don’t always follow the standard growth curve, but we appreciate any help with Gideon’s diet that we can get (as long as they don’t try to force pre-made crap on him, lol).
Days 158-160: Gideon had his meds twice. Hooray!
Day 161: He only received one dose of CBD, because we ran out. Yet, all his other meds were taken twice.
Day 162: Gideon only had his meds once. Yet, we raised his CBD intake by 0.5mL (will begin to be a total of 1mL/day once he is taking both doses again). So, Gideon’s total milligrams per day of CBD (with 2 doses per day) will be 112mg.
Day 163: He had both of his medicine bottles again. Yay! Gideon was raised by 1mL (32mg) of CBD, as mentioned previously. He is still getting used to the new dosage. He had the common symptoms of being a bit looser than normal and a little drowsy.
Day 164: Gideon only had one medicine bottle again. See what we mean by a roller coaster? Lol. He now seems to be acclimating normally to the increased dosage, though.
Days 165-169: Sadly, he has only had one medicine bottle throughout this time period. So, we are not sure how the CBD increase is truly affecting him yet. We will keep him on this new dosage until we know more.
Day 170: Gideon had both medicine bottles again! Yay!
Days 171-173: Gideon went back to one dose of medications again. Up and down we gooooooooooooooooo!
Day 174: We are back to 2 doses of medicines per day. We hope this lasts longer. We really want to test this increased dosage. It would only make sense to test how it has affected him after at least a few consecutive days with 2 doses of his medications. We will keep taking notes and let everyone know more when we do. The weather has been warming, so we are hopeful that he will come out of his swings soon. Prayers are being sent up!
Thank you for reading!