Hello World!
We hope you had a wonderful whatever-you-do-or-don’t-celebrate! ???? We had a great holiday season here. We had lots of family fun time and overdid it a tad on some festive treats.
We have begun to use Lazarus Naturals, as we have concluded our trial and pay out of pocket. I think they have a wonderful, high-quality product line and they are extremely gracious in giving steep discounts to veterans and those who are disabled. The brand transition went over very smoothly for Gideon.
As it is now January 1, 2019, I am looking back at Gideon’s CBD use and the effects it has had since this time last year. The picture on the right is from 12/28/2017. What an amazing change! I see in the notes from last year that he was going through the problem with only taking his meds once a day even then. Wow! Overall, he has gotten much stronger and is closer to crawling. He has also been using his stander and has a lot more muscle control in his core than he has ever had before.
Last year, I reflected on what ONE thing would cause all of these positive changes in Gideon and what role CBD plays. This year, I think it is important to highlight that someone like Gideon needs an arsenal of tools. CBD is a valuable tool in his arsenal. He is able to move with greater ease and range of motion and he does this using less pharmaceutical medications. He is in less pain. CBD enables him to do the work he needs to do with greater comfort and ease. It is important to realize that for those with cerebral palsy, “the work” I’m referring to is living, AKA the ADLs—activities of daily living. For these people, the ADLs are demanding and tiring. It is said that it takes FIVE (5) TIMES the amount of energy for them to walk around and move as it does for the rest of us. ANY real improvement is a WIN for Gideon.
THC has also been a valuable addition to his toolbox. I think we need to tweak his dosage and such over this next year, but that will not be our primary focus. Before we can take on much more medication changes of any sort, we really want to get Gideon’s weight gain on track. Lately, he has been eating an average of 3 bottles per day. If he continues this and perhaps gets a fourth in every so often, we are confident that he will gain just fine. Also, as far as working on using different methods to eat/drink, given his weight gain issues and his recent change to syringe-only medication dosing, we don’t think it is an appropriate time to push this. He is slowly acclimating to using the syringe (he still gets very frustrated at times and has problems), but his weight gain needs to take center stage. Once he gains satisfactorily, then we can turn the focus back to using the Nosey cup and spoons.
What are your goals in 2019? We hope the updated Farm Bill brings good tidings to the industry, especially regarding the banking issues. We will see! We hope to move forward with Serenity Valley Hemp Company and Gideon’s Garden in 2019. It will be a magical year!
We wish you a prosperous year filled with love and happiness! Happy New Year!
Thank you for reading!
NOTES:
Day 1 (11/13/18): We are continuing with Gideon’s CBD usage, but with a new company. We chose Lazarus Naturals because they are just as high quality as Hemp My Pet, but they also offer a discount for those like Gideon that make needing 6000 mg of CBD per month affordable. Today will be his first day using this brand. He has to increase his dosage a bit just to easily use the measuring system they have. Before, Gideon would take 56 mg twice a day. Now, he will be taking 62.5 mg twice a day. This is a small increase. Yet, I am happy we are doing it because I have been wanting to for a while. The highest affordable dose we can bring him to is about 200 mg total per day. Also, to go much higher than that at his age and weight would seem like overkill despite the lack of harmful side effects. Sadly, I would think that he has reached the maximum of its ability to help Gideon. 1st meds and 1st dose of MJ by 9:29. Leggies, weights, and stretches done by 11:45. Leggies and weights off by 2:24. Misses 2nd dose of MJ today. Leggies and weights back on by 6:11-ish. Stander: 21 mins. Chair: 1 hour 6 mins. Gideon had second meds and his 3rd dose of MJ around 8:30. Leggies and weights off by 9:19. Gideon ate 2 bottles and 5.5 oz. of KF.
Day 2 (14th): 1st meds and 1st dose of MJ by 9:30. Leggies, weights, and stretches done by around 11:45. Leggies and weights off by 2:04. Leggies and weights back on by 6-ish. Leggies and weights off by 9:13. 2nd meds done. 3rd dose of MJ by 9:31. Gideon ate 3 bottles and almost 7 oz. of KF.
Day 3 (15th): 1st meds and 1st dose of MJ by 9:20. Lots of spitting. I don’t always remember to notate that, but this way of giving meds is torture for Gideon. Leggies, weights, and stretches done by 12:11. Leggies and weights off by 1:42. 2nd dose of MJ by 3:20. Leggies and weights on by 7:24. He had 2nd meds. Leggies and weights off by 8:46. 3rd dose of MJ by 9:22. Gideon ate 2 bottles, 4.5 oz. of KF.
Day 4 (16th): 1st meds and 1st dose of MJ by 9:22. Leggies, weights, and stretches done by 12:19. Leggies and weights off by 2:48. 2nd dose of MJ by 3:22. 3rd dose of MJ and 2nd meds done. Gideon ate 2 ¾ bottles and over 6oz. of KF.
Day 5 (17th): 1st meds and 1st dose of MJ by 10. Leggies, stretches, and weights done by 12:28. Leggies and weights off by 2:41. 2nd dose of MJ by 4:30. Had 2nd meds. The shouting and anger from Gideon at medicine time continues. Not really helping our communication or our relationship. Fell asleep before 3rd dose of MJ. Gideon ate 3 bottles and 6 oz. of KF.
Day 6 (18th): Pretty sure I caught the end of a breakthrough seizure. Gideon said it was when I asked him. 1st meds and 11st dose of MJ done by 9:55. We have learned through this medication process that he may be ready for spoons, because he takes meds that I can’t suck up into the syringe by spoon. Leggies, weights, and stretches done by 12:10. Leggies and weights off by 2:10. 2nd dose if MJ by 3:56. Leggies and weights back on by 7:55. Leggies and weights off by 9:30-ish. Had second meds. Had 3rd dose of MJ. Gideon ate 1 ¾ bottles and over 4 oz. of KF.
Day 7 (19th): Increasing CBD up to 75 mg twice a day. We did not see any measurable changes with the 6.5 mg increase from 112 mg per day to 125 mg per day. This increase is slightly higher than the last, but it is the next possible increase with the dosing of this product. 1st meds done by 9:32. 1st dose of MJ done by 9:36. Leggies, weights, and stretches done by 11:15. Leggies and weights off by 12:51. 2nd dose of MJ by 4:33. Leggies and weights back on by 7:14. Leggies and weights off by 9-ish. Had 2nd meds. Had 3rd dose of MJ. Gideon ate 1 2/3 bottles and over 3 oz. of KF.
Day 8 (20th): 1st dose of MJ and 1st meds done by 9:28. Leggies, weights, and stretches done by 11:34. Leggies and weights off around 1:45-ish. 2nd dose of MJ by 3:32. Leggies and weights back on by 5:30. Stander: 13 mins. Leggies and weights off by 8:54. Had 2nd meds. Had 3rd dose of MJ. Gideon ate 2 3/5 bottles and over 6 oz. of KF.
Day 9 (21st): 1st meds and 1st dose of MJ by 9:26. Leggies, weights, and stretches done by 12:12-ish. Leggies and weights off by 1:54. 2nd dose of MJ by 3:40. Leggies and weights back on by 7:55. Leggies and weights back off by 9:10-ish. Had 2nd meds and 3rd dose of MJ. Gideon ate 2 bottles and 6 oz. of KF.
Day 10 (22nd): Happy Thanksgiving! 1st dose of MJ and first meds done by 10:09. Leggies, weights, and stretches done by 11:59. Gideon’s leggies and weights came off by 1:55. 2nd dose of MJ by 4:10. Leggies and weights back on by 7:45. Had 2nd meds. Leggies and weights off around 9:35. Had 3rd dose of MJ. Gideon ate 2 7/8 bottles and almost 7 oz. of KF.
Day 11 (23rd): 1st meds and 1st dose o MJ done by 10:12. Leggies, weights, and stretches done by 11:05. Leggies and weights off by 3:31. Missed second dose of MJ. Had 2nd meds and 3rd dose of MJ (or 2nd depending on how you think about it). Gideon ate 1 bottle and 2 oz. of KF. ☹
Day 12 (24th): Gideon had 1st meds and 1st dose of MJ by 10:31. Leggies, weights, and stretches done by 11:40-ish. Leggies and weights off by 12:59. Leggies and weights back on by 8:27. Had 2nd meds. Did NOT have 2nd dose of MJ but DID have 3rd. Gideon ate 1 5/6 bottles and nearly 6 oz. of KF.
Day 13 (25th): Gideon had 1st meds and 1st dose of MJ by 10:59. Leggies, weights, and stretches done by 12:35-ish. Leggies and weights off by 3:48. No 2nd dose of MJ. Leggies and weights back on by 8. Leggies and weights off by 9:30-ish. Had 2nd meds and his 3rd dose of MJ. Gideon ate 2 2/3 bottles and 7 oz. of KF. Gideon has been very upset lately. The best idea as to why, aside from the medication thing which is 99% of the trigger, is his frustration with his lot in life. It just breaks my heart.
Day 14 (26th): Gideon had 1st meds and 1st dose of MJ by 9:45. Leggies, weights, and some stretches done by 11:32. Leggies and weights off by 2. 2nd dose of MJ by 3:46. Leggies and weights back on by 8:28. Had 2nd meds and 3rd dose of MJ. Leggies and weights off by 9:47. Gideon ate 1 1/3 bottles and over 5 oz. of KF. Fought hard to get him to eat more to no avail.
Day 15 (27th): 1st meds and 1st dose of MJ done by 9:27. Leggies, weights, and some stretches done by 11:43. Leggies off around 2:05-ish. 2nd dose of MJ by 3:32. Leggies and weights back on by 7:16. Stander: 20 mins. Leggies and weights off by 9:03. 2nd meds and 3rd dose of MJ done. Gideon ate 2 bottles and about 7.5 oz. of KF.
Day 16 (28th): 1st meds and 1st dose of MJ by 10. Leggies, weights, and stretches done by 11:16. Leggies and weights off by 2:20. 2nd dose of MJ by 4:04. Leggies and weights back on by 7. Leggies and weights off by 8:50-ish. 2nd meds done. Had 3rd dose of MJ. Gideon ate 2 bottles and 5 oz. of KF.
Day 17 (29th): 1st meds and 1st dose of MJ done by 9:51. Spit out at least a quarter of his 1st meds. Leggies, weights, and stretches done by 11:44. Leggies and weights off by 1:22. 2nd dose of MJ by 3:52. Leggies and weights back on by 5:27. Stander: 11 mins. Leggies and weights off by 9:22. Had second meds. 3rd dose of MJ done. Gideon ate 1 bottle and most of a 2nd bottle and about 5 oz. of KF. Had 2 breakthrough seizures tonight. One just after midnight. Gave 2 extra drop of THC, about 0.25 mg.
Day 18 (30th): 1st meds and 1st dose of MJ done by 9:53. Leggies, weights, and stretches done by 12:11. Had a breakthrough seizure. Leggies and weights off by 1:38. Gave extra dose of Keppra. 2nd dose of MJ by 3:54. Per neuro on call, upped Gideon’s Keppra to 2.5mL per dose. 1st times doing this was done with 2nd meds tonight. Had 3rd dose of MJ. Gideon ate 2 bottles and 7 oz. of KF. Possibly had another breakthrough seizure. If it was, it was kind of quiet. May have had another. Definitely had another. So, possibly 3 more.
Day 19 (Dec. 1st): 1st meds and 1st dose of MJ by 10:24. Leggies, weights, and stretches done by 12:42. Leggies and weights off by 4:46. 2nd dose of MJ by 5:10-ish. 2nd dose of meds and 3rd dose of MJ done. Gideon ate 2 bottles and 5 oz. of KF. Wasn’t feeling too well from the seizures yesterday.
Day 20 (2nd): Happy Chanukah! 1st meds and 1st dose of MJ by 11am. Choked a little bit. Spit out about ¼ of the meds. ☹ Refused his leggies but did some of the stretches and weights at 12:55. 2nd dose of MJ by 5:13. Gideon used his chair and colored. He began to color all by himself. Had 2nd meds and 3rd dose of MJ. Gideon ate 2.5 bottles and 7 oz. of KF.
Day 21 (3rd): Happy Yule! 1st meds by 9:45. 1st dose of MJ by 9:48. Leggies, weights, and stretches done by 12:32. Leggies and weights off by 3:11. 2nd dose of MJ by 3:50. Leggies and weights back on by 6:45. Leggies and weights off by 9:22. Had 2nd meds. Had 3rd dose of MJ. Gideon ate 1.5 bottles and about 5.5 oz. of KF.
Day 22 (4th): 1st meds by 9:40-ish. 1st MJ dose by 9:44. Leggies, weights, and stretches done by 11:56. Leggies and weights off by 3:36. That may be a new record for his newest leggies. 2nd dose of MJ by 3:46. Leggies and weights back on by 8:15-ish. Leggies and weights off by 9:18. Had 2nd meds and 3rd dose of MJ. Gideon ate almost 2 bottles and 6 oz. of KF.
Day 23 (5th): Woke up with 100.3 fever. He was very out of it all day. Explains the breakthrough seizures and the lack of appetite. He quickly overcame the fever. 1st meds and 1st MJ dose by 9:50. 2nd dose of MJ by 3:50. Had 2nd meds and 3rd dose of MJ. Gideon ate almost 2 bottles and 7 oz. of KF.
Day 24 (6th): Feeling much better today. Still a little foggy. 1st meds and 1st dose of MJ by 9:25. Leggies, stretches, and weights done by 12:30. Leggies and weights off by 2:36. 2nd dose of MJ by 3:26. Leggies and weights back on by 6:43. Leggies and weights off by 9:35. Had 2nd meds and 3rd dose of MJ. Gideon ate 1 4/5 bottles and almost 6 oz. of KF.
Day 25 (7th): 1st meds and 1st dose of MJ by 9:22. Leggies, weights, and some stretches done by 11:55. Leggies and weights off by 1:17. Had 2nd dose of MJ by 3:24. Leggies and weights back on by 5:55. Stander: 5 mins. Leggies and weights off by 7:50. Had second meds and 3rd dose of MJ. Gideon ate 1 bottle and 2 oz. of KF. ☹
Day 26 (8th): 1st meds and 1st dose of MJ by 9:55. Leggies, weights, and stretches done by 12:04. Leggies and weights off by 4:21. Leggies and weights back on by 7:42. No 2nd dose of MJ. Leggies and weights off by 9:17. Had 2nd meds and 3rd dose of MJ. Gideon ate 2 bottles and 5 oz. of KF.
Day 27 (9th): 1st meds done by 9:49 and 1st dose of MJ by 9:51. Leggies, weights, and stretches done by 12:36. Leggies and weights off by 2:04. 2nd dose of MJ by 4:25. Had second meds. Had 3rd dose of MJ. Gideon ate 2 bottles and 5 oz. of KF.
Day 28 (10th): Titrating up Gideon on CBD from 75 mg twice a day to 87.5 mg twice a day. We saw more laxity in his body with the last increase. It still did not stop illness-related seizures and it did not do too much for his tone, either. Gideon will have to max out at 100 mg twice a day only because this is what is affordable for us for now. Also, if I see that increasing his dosage from 56 mg twice per day has done very little for him overall, we will settle at the lowest effective dose. Like any drug, it only makes sense to take the lowest dosage possible for the maximum effect. 1st meds and 1st dose of MJ by 9:28. Leggies, weights, and stretches done by 11:15-ish. Leggies and weights off by 2:18. Stander was adjusted today, so Gideon got at least ½ hour of standing in. 2nd dose of MJ by 4:27. Leggies and weights back on by 7:43. They colored some holiday cards today! Leggies and weights off by 9:25-ish. Had second meds. Had 3rd dose of MJ. Gideon ate 1 2/3 bottles and 4.5 oz. of KF.
Day 29 (11th): 1st meds and 1st dose of MJ by 9:25. Leggies, weights, and stretches done by 12:16. Leggies and weights off by 1:57. Alarm was set incorrectly, and he missed the 2nd dose of MJ. Leggies and weights back on by 5:46. Leggies and weights off by 8:43. Had 2nd meds and (technically) 3rd dose of MJ (2nd was missed). He was very tired. Gideon ate 1.5 bottles and 5 oz. of KF.
Day 30 (12th): 1st meds and 1st dose of MJ by 9:13. Leggies, weights, and stretches done by 11:46. Leggies and weights off by 1:40. 2nd dose of MJ by 3:16. Leggies and weights back on by 7:03. Leggies and weights off by 8:25. Had 2nd meds. Had 3rd dose of MJ. Gideon ate almost 2 bottles and more than 6.5 oz. of KF.
Day 31 (13th): 1st meds and 1st dose of MJ by 8:53. Leggies, weights, and some stretches done by 11:17. Leggies off by 1:57. 2nd dose of MJ by 2:55. Had 2nd meds and 3rd dose of MJ. Gideon ate 3 bottles and 7 oz. of KF.
Day 32 (14th): 1st meds and 1st dose of MJ by 9:52. Leggies, weights, and some stretches done by 11:36. This new dose of CBD has helped him to be more vocal and laxer in his limbs. Leggies and weights off by 1:09. Had 2nd dose of MJ by 3:53. Leggies and weights back on by 7:52. Gideon had 2nd meds. Leggies and weights off by 9:20. Had 3rd dose of MJ. Gideon ate 1 bottle and 2 oz. of KF. His jaw was tired today or, so it seemed. He required thinner liquids for him to eat.
Day 33 (15th): 1st meds and 1st dose of MJ by 10:43. Leggies, weights, and stretches done by 12:58. Leggies and weights off around 7-ish. Missed 2nd dose of MJ. Had 2nd meds and last dose of MJ. Gideon ate 2 bottles and over 6.5 oz. of KF.
Day 34 (16th): 1st meds and 1st dose of MJ by 9:42. Gideon refused exercises and leggies/weights. 2nd dose of MJ by 3:42. Had 2nd meds. Had 3rd dose of MJ. Gideon ate 2 bottles and 5.5 oz. of KF.
Day 35 (17th): 1st meds and 1st dose of MJ by 9:30. Leggies, weights, and stretches done by 12:05. Leggies and weights off by 2. Had 2nd dose of MJ by 3:30. Leggies and weights back on by 7:32. Had 2nd meds. Leggies and weights off by 8:29. Had 3rd dose of MJ. Gideon ate almost 2 bottles and 5.5 oz. of KF.
Day 36 (18th): 1st meds and 1st dose of MJ done by 9:34. Leggies, weights, and stretches done by 11:46. Leggies and weights off by 2:21. 2nd dose of MJ by 3:42. Had second meds. Wore weights and leggies again, but I did not record time. Had 3rd dose of MJ. Gideon ate almost 1 2/3 bottles and over 4 oz. of KF.
Day 37 (19th): 1st meds and 1st dose of MJ done by 9:42. Leggies, weights, and stretches done by 12:32. Leggies and weights off by 2:23. 2nd dose of MJ by 3:43. Leggies and weights back on by 6:33. Leggies and weights off by 9:20-ish. He had 2nd meds and the 3rd dose of MJ. He tried to use a large, easy-to-hold pen today. Gideon ate almost 2 bottles and at 4.5 oz.
Day 38 (20th): 1st meds and 1st dose of MJ done by 9:36. Leggies, weights, and stretches done by 11:24-ish. Had 2nd dose of MJ by 3:37. Leggies and weights off by 3:37. Leggies and weights back on by 8:06. Leggies and weights off by 9:55. Had 2nd meds and 3rd dose of MJ. Gideon ate 1 2/3 bottles and about 5 oz. of KF.
Day 39 (21st): 1st meds and 1st dose of MJ by 10:05. Leggies, weights, and stretches done by 11:59. He has lost more weight. I would hate to think he may be getting ill again. Due to the weight loss and the fact that Gideon has been sleepy since we brought it up, for tonight’s meds, I will begin to bring it down to 75 mg (1.5mL). Leggies and weights off 2:43-ish. 2nd dose of MJ by 4:07. Leggies and weights back on by 6:19. Stander: 7 mins. Leggies and weights off again by 8:10. Had 2nd meds. Had 3rd dose of MJ. Gideon ate 2 bottles and around 5.5 oz. of KF.
Day 40 (22nd): 1st meds and 1st dose of MJ by 10:34. Leggies, weights, and stretches done by 12:55. Leggies off by 5. No 2nd dose of MJ. Had 2nd meds and 3rd dose of MJ. Gideon ate 1 bottle and 2.5 oz. of KF. ☹
Day 41 (23rd): 1st meds and 1st dose of MJ by 10:20. Leggies, weights, and exercises done by 12:16. Leggies and weights off around 2:50. Had 2nd dose of MJ by 4:27. Leggies and weights back on by 6:59. Leggies and weights off by 9:35. Had 2nd meds. Had 3rd dose of MJ. Gideon ate 2 2/3 bottles and over 9 oz. of KF! ????
Day 42 (24th): 1st meds and 1st dose of MJ by 9:57. Leggies, weights, and stretches done by 12-ish (forgot to notate earlier, so this is a guess). Leggies and weights off by 2:41. Missed 2nd dose of MJ. Had 2nd meds and 3rd dose of MJ. Gideon ate 2 1/3 bottles and 6 oz. of KF. After bed time, Gideon wiggled his way all the way down his bed and onto the floor with a thud. ????
Day 43 (25th): Merry Christmas! 1st meds and 1st dose of MJ by 10:57. Leggies, weights, and stretches done by noon. Leggies off by 2:53. 2nd dose of MJ by 4:50. Had 2nd meds. Gideon ate 1.5 bottles and 4.75 oz. of KF. ☹ He did eat some cookie crumbs today and play and move quite a bit at least.
Day 44 (26th): 1st meds and 1st dose of MJ by 9:38. Leggies, weights, and stretches done by 12:09. Low-grade fever at 12:19pm, 99.7. Gave elderberry. Leggies and weights off by 2:06. 2nd dose of MJ by 3:38. Leggies and weights back on by 6:07. Had 2nd meds. Leggies off around 8:45-ish. Had 3rd dose of MJ. The slight illness explains the strange appetite again. Gideon ate nearly 1.5 bottles and 6.25 oz of KF.
Day 45 (27th): 1st meds and 1st dose of MJ done by 10. Leggies, weights, and stretches done by 12:17. Leggies and weights off by 2:40. 2nd dose of MJ by 4:12. Had 2nd meds. Had 3rd dose of MJ. Gideon ate 3 bottles and 8 oz. of KF! ????
Day 46 (28th): 1st meds and 1st dose of MJ done by 9:25. Leggies, weights, and stretches done by 11:50. Leggies and weights off by 1:51. Missed 2nd dose of MJ. Leggies and weights back on by 6:30. Had 2nd meds and 3rd dose of MJ. Leggies off by 8:43. Gideon ate over 1 2/3 bottles and 4.5 oz. of KF.
Day 47 (29th): 1st meds and 1st dose of MJ by 9:56. Leggies, weights, and stretches done by 12:05. Missed 2nd dose of MJ. Leggies and weights off by 5:45. Had 2nd meds and 3rd dose of MJ. Gideon ate 2 bottles, 5.5 oz. of KF.
Day 48 (30th): 1st meds and 1st dose of MJ by 11. Leggies, stretches, and weights done by 1:10. Leggies and weights off at 3:12. 2nd dose of MJ by 4:56. Leggies and weights back on by 5:55-ish. Leggies and weights off by 8:08. Had 2nd meds. Had 3rd dose of MJ. It seemed like he lost a bit of his 2nd meds. ☹ Gideon ate 3 bottles and 8 oz. of KF!
Day 49 (31st): 1st meds and 1st dose of MJ by 10:10. He spat out a lot of meds today. He was not in a great mood. ☹ Leggies, weights, and very few stretches done by 11:49. Leggies and weights off by 2:15. Had 2nd dose of MJ by 4:12. Leggies and weights back on by 5:56. Stander: 11 mins. Had 2nd meds. Leggies and weights off by 9:26. Had 3rd dose of MJ. Gideon ate almost 2 bottles and 5.5 oz. of KF.
Day 50 (1st): 1st meds and 1st dose of MJ by 9:54. Leggies, weights, and stretches done by 12:20. Leggies and weights off by 2:36. 2nd dose of MJ by 3:55. Leggies and weights back on by 7:36. Had 2nd meds and 3rd dose of MJ. Leggies off around 9-ish. He spat his meds a bit today, too. Gideon ate over 1 2/3 bottles and over 4.5 oz. of KF.