CBD Oil Tincture Trial: Days 313-342

Hello World!

How was your month? We hope it was fantastic!

Gideon has had a pretty tough month. As is common among those with cerebral palsy, as you become aware of yourself and how you differ from others, you begin to feel and deal with many emotions. It is easy to imagine that frustration and sadness are just a few of those a child may experience. This has caused Gideon to refuse exercises and cry during the fitting of his new AFOs. Like many kids, he just wants to be able to do things on his own. As a parent, all you can do is try to help them deal with their feelings and help them understand that all the devices and exercises will help them to become as independent as they can be.

Gideon has also been battling a weight issue. He needs to gain weight which is common for many with CP. Unfortunately, he has been refusing many of his feedings for a few reasons. We have been dealing with those reasons and he has stopped refusing so often. A visit with his pediatrician has us dealing with this from another angle as well. We are trying to see if part of his refusal might stem from constipation. This, too, is often a problem for those with CP. Chronic constipation will cause a feeling of fullness even if a person has not eaten. We have reason to believe that this may be part of his issue. Currently, he is gaining weight slowly and we hope to see greater gains next month. His pediatrician has asked us to keep track of how much he eats and how much of his Kate Farms (the additional formula that we add to his bottles) he has eaten. Along with everything else that we are doing to monitor his weight, we are taking his weight on a weekly basis.

We have moved away from the straw cups for now and have begun to try the Nosey Cup (pictured below, left). This suggestion came from his SLP. So far, Gideon has done very well. He can take about 2 fair sized sips before he gets tired of using it, but that’s a great start. We are also happy to announce that Gideon has started to do much better in the crawl position with his PT.

Perhaps because of his feeding issues over the month, Gideon had 2 breakthrough seizures in one day. We assume that the feeding issue is the cause because he often missed his second meds bottle. The one that happened earlier in the day was the first clonic seizure I have ever witnessed from Gideon. The second was his standard tonic-clonic seizure. Clonic seizures are sneaky. They will look the same as the tonic-clonic, but they do not have any vocalizations. This had me wondering if I have ever missed any of his seizures before. I always catch his tonic-clonic, because the sounds he makes are very unique. Yet, with the clonic seizure, I was in the same room and if I hadn’t looked directly at him to check on him, I never would have known he was having it. That scared the hell out of me, to be honest. On the positive, neither lasted more than a minute and these are the first breakthrough seizures that he has ever had (that we know of). We hope that he will begin to get both doses of meds more often like we had worked so hard to get back to over the summer.

Overall, Gideon has been communicating more using options that I present on my hands. To communicate this way, I must interpret many things in the environment, time of day, body and facial cues, etc. This helps me to come up with the best questions to get the information he is trying to give me. Although, when Gideon was going through the struggle with his emotions, he closed off to me and would refuse to communicate. Thankfully, we have moved past this, though.

So far, Gideon has been very tolerant of his wrist weights. Once the next weight class greater (1/4 lb.) is available from our supplier, I will look into having him use them. Of course, I would only do that with the blessing of his OT.

We took the rough moments and rode them like waves and cherished the best moments in our hearts. We hope that our readers do the same as you read along and in your own life. As always, the notes are below, and we hope you have enjoyed this post and continue to follow Gideon on his journey.

Thank you for reading! 🙂

NOTES:

Day 313 (9th): 1st meds done by 10:30-ish. Leggies and weights on and stretches done by 12:05. Leggies and weights off by 1:42. Leggies and weights back on by 7:05-ish. Leggies and weights off by 9. Had 2nd meds.

Day 314 (10th): 1st meds done by 11:34. May not have second. Leggies, weights, and most stretches done by 12pm. Leggies and weights off by 1. Leggies and weights back on by 7:31. Stander: 6 mins. Leggies and weights off by 9:08. Had 2nd meds.

Day 315 (11th): 1st meds done by 9:15. Leggies, weights, and stretches done by 11:30-ish. Leggies and weights off by 1:37. Leggies and weights back on by 6:04. Gideon colored for his friend today. Stander: 7 mins. Had second meds. Leggies and weights off by 8:35.

Day 316 (12th): 1st meds done by 10-ish. Leggies, some stretches, and weights done by 11:23. Leggies and weights off by 12:51. Leggies and weights back on by 7:42. Was not up for 2nd set of exercises or stander tonight. Leggies and weights off by 9:04. No 2nd meds.

Day 317 (13th): 1st meds done by 10:29. Leggies, weights, and stretches done by 11:26. Leggies and weights off by 12:40. Leggies and weights back on by 6:52. Weights came off early at about 8. He was bothered by them. Leggies off by around 8:38. Had second meds.

Day 318 (14th): 1st meds done by 10:05. Leggies, weights, and stretches done by 10:26-ish. Leggies and weights off by 12:05. Leggies and handies back on by 7:14. I’m lucky he was willing. Today has not been the most cooperative day. He has had a hard day since around 6am. Leggies and weights off by 8:22.

Day 319 (15th): 1st meds finished by 10:20. Leggies and some stretches done by 11:42. Gideon told me he will not tolerate his weights. Removed leggies around 1:20. Would not do stander again. This time it’s because he took a late nap and only wanted to wake up to eat. I was able to coax him into a little bit of exercise, though. Leggies and weights on by 7:52. Leggies and weights off by 9:21. Had 2nd meds.

Day 320 (16th): 1st meds 96% finished by 10:46. Leggies, weights, and stretches done by 11:25-ish. Leggies and weights off at around 12:46. Leggies and weights on again by 8:25. No second meds denied many feedings today. Will watch to make sure this doesn’t continue. Leggies and weights off by 9:53.

Day 321 (17th): 1st meds by 9:30. Leggies, weights, and stretches done by 11:16. Leggies and weights off by 12:07. Leggies and weights on by 6:17. Stander: 9 mins. Had second meds.

Day 322 (18th): 1st meds done by 9:45. Leggies, weights, and stretches done by 11:27-ish. Leggies and weights off by 1:10. Leggies and weights back on by 6:10. Leggies and weights off by 8:34. He had second meds.

Day 323 (19th): 1st meds finished around 10:33. Leggies, weights and some stretches done by 11:48. Leggies and weights off by 1:47. Leggies and weights back on by 7:45-ish. Leggies and weights off by 9:25. Ate 50% of second meds.

Day 324 (20th): 1st meds done by 11:34. Leggies, very few stretches, and weights done by 11:43. Leggies and weights off by 12:48. Leggies and weights on by 4:16. Stander: 28 minutes with a great deal of it spent adjusting. Leggies and weights off by 8:11-ish. No 2nd meds.

Day 325 (21st): 1st meds still not done by 11:37. Not likely to have second. Leggies, stretches, and weights done by 11:36. Leggies and weights off by 12:43. Was not a good day. Barely any bottles eaten, and no afternoon exercise of any sort was done.

Day 326 (22nd): 1st meds done by 10:16. Leggies, stretches and weights done by 11:54-ish. Leggies and weights off by 1:06. Yet again, he refused much of his exercise. So far, though, he’s eaten a bit more today. Had second meds.

Day 327 (23rd): 1st meds done by 10:15-ish. Leggies, weights, and stretches done by 12-ish. Leggies and weights on by 5:05. Tried the spoon again today. He did better with it than he has prior, but he’s still not ready for it, because of the tongue-thrust reflex. Tried the Oxo again, seems like despite it being a better shape for his mouth, his suck isn’t strong enough. Leggies and weights off by 9:42. Had second meds.

Day 328 (24th): Leggies, weights, and stretches done by 11:22. Leggies and weights off by 12:46. No 2nd meds today as it is 1:17 and he hasn’t finished his 1st bottle. Leggies and weights back on by 4:50. Stander: 11 mins. Leggies and weights off around 8:30-ish.

Day 329 (25th): 1st meds done by 11:24. Leggies, stretches, and weights done by 11:55. Leggies and weights off by 1:24. Keep track of bottle # and if finish KF daily as per pediatrician. He seems to be somewhere between 29.8 and 30 lbs. Leggies and weights on by 6:06-ish. Stander: 8 mins. Leggies and weights off by 8:34. Gideon had 3.25 bottles today and full bottle of KF and about 2 oz more. Had 2nd meds.

Day 330 (26th): 1st meds 80% done by 10:25. Finished the rest by 11:24. Leggies, stretches, and weights done by 11:45. Leggies and weights off by 1:29, because sister removed them. Leggies and weights on by 5:55. Leggies and weights off by 9:14. He ate 1 and over ¾ bottles and had about 1 full bottle of KF. No 2nd meds.

Day 331 (27th): 1st meds done by 11:20-ish. Stretches and weights done by 11:35-ish. No leggies this round, because he’s getting his new ones in a little bit. Weights off by 12:35. Leggies on from 2:45-ish to 7:10. Had second meds. Gideon had 3 bottles and a full bottle of KF.

Day 332 (28th): 1st meds done by 10:08-ish. Leggies, stretches, and weights done by 11:43. Leggies and weights off by 1:58. Leggies and weights back on by 8:33. Had second meds. Leggies and weights off by 9:43. Gideon had a little under 3 bottles and a little over 1 bottle of KF. Gideon did very well in the crawling position with his PT today.

Day 333 (29th): Leggies, stretches, and weights done by 12:04. 1st meds still not done by same time, so probably won’t have 2nd. He did try a Nosey Cup today, though. He took very small sips but did very well. 1st meds done by 1:08. Leggies and weights back on by 6:50-ish. Leggies and weights removed by 8:16. Gideon had 2 bottles and over a half of KF.

Day 334 (30th): Gideon had a clonic seizure, less than to about 30 seconds. 1st meds done by 10:10. Gideon did not feel up to doing his stretches or wearing his AFOs and weights. Will try later today, though. Leggies and weights on by 7:15. Leggies and weights off by 9:02. No 2nd meds. Had nearly 3 bottles and a little over 1 bottle of KF. I caught Gideon having another seizure tonight.

Day 335 (1st): Leggies, stretches, and weights done by 11:43. Leggies and weights off by 1:22. Finished 1st meds around 3:45-ish. Definitely no second meds. Leggies and weights on by 7:35 and off by 7:48. Gideon used his stander for 3 minutes. He is just not having a great day. He ate 2 bottles today and about half of KF. Gideon worked really hard on brushing tonight.

Day 336 (2nd): Gideon finished his 1st bottle at 11:19. Leggies, stretches, and weights done by 11:32-sh. Leggies and weights off by 12:44. Refused to do more leggies and weights. Refused the stander. Had 4 bottles and a little over a full bottle of KF. Had about half of his second meds.

Day 337 (3rd): Leggies, stretches, and weights done by 10:40-ish. Leggies and weights off by 1:34. First meds still not done by same time, so no second meds tonight. 1st meds done by 3:17. Leggies and weights back on by 6:42. Leggies and weights off by 8:30. Gideon ate 3 bottles and used ¾ of KF bottle.

Day 338 (4th): 1st meds done by 11:30-ish. Leggies, weights, and stretches done by 11:34. Leggies and weights removed around 2:23. Leggies and weights back on at 6pm. Refused exercises and would not work with me on the stander. Leggies and weights off by 9:50. No second meds. Gideon ate 2.5 bottles and about 7 oz of KF.

Day 339 (5th): Gideon has gained a little more weight. 1st meds done by 11:44. So, likely no second meds. Weights, leggies, and very few exercises done by 11:54. Gideon is still having a tough time communicating and not feeling so frustrated. Leggies and weights off by 1. Forgot to mention that the specialist who fitted Gideon with his new AFOs said he needs to slowly go back up to 3 hours twice a day. Gideon has had 3 bottles today and ¾ of a bottle of KF. No 2nd meds. Gideon did well with the Nosey Cup during his visit with the SLP.

Day 340 (6th): 1st meds done by 11:35-ish. No second meds. Gone all day in Denver for family fun day. Wore leggies and weights for 3+ hours. Had 2 bottles and 2/3 or more of KF.

Day 341 (7th): Leggies, weights, and stretches done by 11:31. Probably no 2nd meds today, because he has not eaten by 12:45. Leggies and weights off at 1:34. Leggies and weights back on by 6:37. Stander: 13 mins! Leggies and weights off by 8:27. Gideon ate 2 bottles and about ½ bottle of KF.

Day 342 (8th): 1st meds 95% done by 11:25. Stretches, leggies, and weights done by 11:15-ish. Leggies and weights off by 1:41pm. Leggies and weights back on by 6:10. Stander: 14 mins! Leggies and weights off around 9-ish. Gideon has eaten 3 bottles and a full bottle of KF. No second meds. Had weight and eye check. Gideon’s eyes are fine, and his weight is slowly seeing gains.

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