We hope you have had a good month! This month has been marked by more changes and I don’t see that stopping any time soon. In a few more months, we will mark a year of Gideon being on CBD. It has done wonders for him. He has reached heights that would have taken a while longer to achieve. That annual review is coming soon.
As for this month, poor Gideon has been going through a tough growth spurt. He has suffered a great deal of pain and lost sleep. Gideon had both medicine bottles for most of the month. He had about a 4-day span where he did not have them. He was going through a tough time on those days. So, overall, it seems that he is finally getting bac on track with having his medicine regularly.
There have been interesting changes and milestones reached this month as well. Gideon has been communicating quite a bit which is amazing. He went through about a week where he refused to “say” much. I have no idea why, I just accepted it He has been coloring for his friends in his pen pal group. He really enjoys it. He went to his rehab specialist this month. She decided that he no longer needs his hand braces (AKA “handies”) and ordered new AFOs (AKA leg braces or “leggies”). Gideon has also been tolerating exercises in the crawling position more than ever. Gideon has now begun to use wrist weights to give him some arm strength. The idea is to enable to him to hold his bottle and other heavier objects. He tolerates them well so far. We started with 1/8 of a pound. He is seen wearing them today while playing with his favorite toy.
Some interesting developments have come about regarding Gideon’s preference for schooling. When he was being more communicative, he let me know that he wants to try school outside of the home first. We will work with his speech-language therapist to see what we can do to get him into preschool to test the waters. She (the SLP) had also mentioned that communication, even with assistive devices, will remain difficult for quite a while due to Gideon’s lack of motor skills. We will keep working on using the skills we have in place (making choices using my two hands as the options and watching his facing expressions and eye tracking).
In the process of this month, I passed the state test and officially became Gideon’s CNA! Greg and I also celebrated our 3rd wedding anniversary! It sure has been an eventful month. As always, if you would like to read more than the simple overview, feel free to browse the notes below. It’s like a sneak peek into our daily lives, except for the occasional missed notes. ????
Thank you for reading! ????
Day 280 (7th): Handies off by 8:41. 1st meds by 10:50. Leggies on and stretches done by 11:20. Leggies off by 2:29. Gideon woke up from his looong nap in a lot of pain and extremely tight leg muscles from growing pains. I massaged him, but he would not tolerate exercise, leggies, or his stander. I don’t blame him! Ouch! 2nd meds done by 9:10. Handies on by 9:12.
Day 281 (8th): Handies off by 9:10. 1st meds done by 10. Leggies on and most stretches done by 11:40. Leggies off by 2:17. Leggies back on at 5:15. Stander for 6 mins upright. Leggies off by 8pm. He was in pain. He fell asleep not long after.
Day 282 (9th): 1st meds by 9:30-ish. Leggies on and ½ of his stretches done (5 instead of 10 reps for each) by 11:10. Leggies off by 12:45. He wasn’t tolerating them. 2nd meds at 7:47. Handies on by 9:18.
Day 283 (10th): Handies off by 8:48. 1st meds by 9:05. Leggies and stretches done by 10:40. Went in chair around 10:40 for one hour. Gideon colored using hand over hand for a friend who is having surgery. He smiled and enjoyed it. I let him know that he cannot keep this art, that it’s for a friend who is having surgery. I also said next time, we will do a piece that he can keep. Leggies off by 1:15, very red on anterior portion of ankles. Also, permanent redness that still blanches occurring on thumbs from handies. Redness on ankles was almost gone after 15 mins. Leggies back on at 8:22. Probably only doing an hour because it’s so late. 2nd meds around 9:07. Leggies off and handies on by 9:48.
Day 284 (11th): Handies off by 7:35. 1st meds done by 9. Some stretches and leggies on by 11:38. Off by 2:32. Leggies back on at 6:55. Had 2nd meds by 7:45. Leggies off and handies on by 9:22.
Day 285 (12th): Handies off by 7:40. Finished meds around 8:45. Leggies on by 10:28. Some stretches done, but he woke up in serious pain again last night from growing pains. I don’t expect much activity today. Leggies off by 10:59, he was screaming in pain. Leggies back on by 5:55. Stander: 13 mins upright. 2nd meds by 7:06. Leggies off and handies on by 8:55.
Day 286 (13th): Handies off by 5:55. Gideon was up numerous times during the night in pain. Massages only made a dent, so he ended up getting ibuprofen. Meds taken by 9:40-ish. Leggies on by 10:45 and some stretches done. Leggies off by 10:46. Leggies back on by 6:10-ish. Did not use the stander long, about 4 mins. Leggies off at 7:45, not tolerating. He lets me know now, which is great. He will whine with a face that looks annoyed or sort of painful. I started to tell him to kick his legs to let me know that his leggies are bothering him. He does. Handies on by 8:46.
Day 287 (14th): Handies off by 7:45. Meds by 9. Leggies on and stretches done by 10:45. Leggies off by 1:37. Took late nap. Wasn’t up for stander and 2nd time with leggies today. 2nd meds done by 8:22. Handies on by 8:25.
Day 288 (15th): CBD ran out last night and the new shipment is late. So, no CBD today. Not sure about tomorrow, either. Handies off by 6-ish. In lots of pain overnight. 98% of 1st meds done by 8:45. Leggies and some stretches done by 9:55. Needs new AFOs and hand braces. Leggies off at 11:41. Leggies on at 5:39. 2nd meds by 8:20. Leggies off and handies on by 8:39.
Day 289 (16th): Handies off by 4:30. Gideon screaming again all night. CBD came in mail. Leggies on and some stretches done by 10:21. 1st meds done by 10:35. Leggies off by 1:29. Leggies and some exercise done by 5:06. Stander: 5 minutes, I pulled him out. He was slouching most of the time. Leggies off by 8:09. Handies on by 9:01 and 2nd meds done by 8:58-ish.
Day 290 (17th): Handies off by 7-ish. 1st meds by 8:44. Leggies on and stretches done by 10:50. Leggies off by 11:43, don’t think he was tolerating them. Had second meds bottle. I think I will only be putting his leggies on for an hour or 2 each time until I get them checked. He seems to have tolerated them less and I can’t tell if it’s because of his growth already or simply his new growing pains. Leggies back on by 8:42. Leggies off and handies on by 10:03. Noticed that his legs were much less red with the leggies having only been on for an hour and 20 mins or so. I would definitely say that until he gets newer AFOs, he shouldn’t wear them for more than 2 hours at a time.
Day 291 (18th): Handies off by 6:20. 1st meds done by 9:30. Leggies on by 11:37. Leggies off by 1. Leggies on by 5:47. Stander: 12 mins. Leggies off by 8pm. Had 2nd meds. Handies on by 9:20.
Day 292 (19th): Handies off by 8:30-ish. 1st meds by 9:40-ish. Leggies on and stretches done by 11:24. He was a little protective of his left leg today. Leggies off late today, by 1:51. His feet weren’t too red, though, thankfully. Gideon did an awesome job using his pics to tell me what was going on. He wouldn’t eat a bottle I had made earlier. To be sure it was not a flavor issue, I asked him to touch his picture if it was just that he did not want to eat the bottle that was made, but he is still hungry. He touched it to confirm! <3 Leggies back on by 7:17. Stander: 2 mins in, Gideon let me know he’s not up for it by whining and making a face. Good boy! Leggies off by 8:45. Had second meds. Handies on by 9:03.
Day 293 (20th): Handies off by 8:15-ish. 1st meds by 8:57. Leggies on and stretches done by 11:26. Leggies off by 12:45. Leggies back on by 5:20. We’ve been practicing the crawl position using a triangle pillow. Yesterday was a wonderful day. He did somewhere around 5 mins. Today he is doing well, too. He did around 7 mins. Stander: 7 mins. Leggies off by 7:55. Handies on by 8:45. Had second meds.
Day 294 (21st): TEST DAY. I PAAAAAAAAAASSSSSSSSSSED! Gideon has had a difficult day. I think it is due to teething and general malaise. He finished his 1st meds at 6:47-ish PM! He refused leggies by telling me as clearly as he could. He tried to do some exercises, but it wasn’t very successful. No stander because no leggies. Handies on around 8:35. No second meds.
Day 295 (22nd): Handies off by 9:36. 1st meds by 9:51. Leggies on and stretches done by 12:36. Baby Zoe interrupted us a few times, lol. Leggies off by 1:39. Handies on by 9. 2nd meds done. Helped with brushing teeth last night and tonight.
Day 296 (23rd): Handies off by 9:15. 1st meds by 10:28. Leggies on and stretches done by 11:49. Gideon’s communication is blossoming amazingly! Leggies off around 1. Leggies back on around 5:50. Stander: met his best time—17 mins. Leggies off by 8:05. Second meds eaten. Handies on by 9:35.
Day 297 (24th): Handies off by 9. 1st meds by 10:25. Leggies and stretches done around 11:35. Leggies off around 12:40. Gideon said “Dada”! He confirmed it with me, too! I asked the speech therapist if Gideon is likely to talk. She, in a polite and slightly roundabout way, said it’s not likely. She said it will be a good deal of work to get him using assistive devices as well. Leggies back on around 5:45. Stander: 8 mins. Leggies off by 9 and handies on by 9:05. Had 98% of 2nd meds.
Day 298 (25th): Handies off by 9-ish. 1st meds done around 10:15. Leggies and stretches done by 11:30. Communication is getting better every day! Leggies off by 12:46. Late night: leggies back on by 8:47. Handies on around 9:30-ish. Had 98% of 2nd meds. Leggies off around 9:25-ish.
Day 299 (26th): Handies off by 8:15-ish. Finished 1st meds by 10:15. Leggies and stretches done by 11:15. Leggies off by 12:36. Leggies on around 6:30-ish. Leggies off at 9:30 and handies on by 9:35. No 2nd meds.
Day 300 (27th): Handies off by 6:30. Gideon is having severe teething pain today. Not sure how much he will work with me today. Leggies on at 11:08, no exercises done. Leggies off by 12:30.1st meds done by 12:57. There will be no second meds. Leggies back on at 5:55-ish. Stander: 3 mins. Handies on around 8:55.
Day 301 (28th): Handies off by 8:48. 1st meds done at 10:13. Leggies on by 10:59 and exercises done. Leggies off by 12. Handies no longer required per the physiatrist! Finished ¾ of his 2nd meds.
Day 302 (29th): 1st meds done around 10. Leggies on and stretches done by 11:38. He hasn’t been communicating as well with me over the last few days or so. Leggies off at 12:55. Want to get Gideon to work on holding his bottle. Leggies back on by 8:20. Had a long and late nap. He wasn’t up for too much exercise, but he did manage a little. Stander: 3 mins. Had second meds. Leggies off around 9-ish. Gideon was uncomfortable.
Day 303 (30th): Leggies on by 11:48. 1st meds done at 1:16. No second meds. Leggies off by 1:15-ish. Leggies back on by 7:51. Leggies off by 8:20-ish. Was not up to much exercise or his AFOs after his late nap again. I think he may still be going through the growth spurt, but that he may be toward the end of it. Ordered wrist weights to use for 15-20 mins/day. Hoping that Gideon can gain strength to begin to hold his bottle (along with a grasping aid that the OT will help us choose).
Day 304 (31st): Leggies on and stretches done by 11:43. Leggies off by 1:31. No second meds, because he has not finished his 1st by now (1:37). Finished 1st meds at 2:32. Leggies on by 5:44. Stander: 8 mins. Leggies off by 7:40-ish.
Day 305 (1st): Leggies on by 11:58. Teething pain today, so hasn’t finished 1st bottle yet (11:59). Not likely to have 2nd. Leggies off by 12:59. Finally finished 1st meds around 3. Leggies back on by 5:53. Stander: 18 minutes! Leggies off by 9:06.
Day 306 (2nd): Leggies on and some stretches done by 11:50-ish. Finished 1st meds by 12:40-ish. So, no 2nd meds today, either. Leggies off by 1:38. Leggies back on around 7:22. Leggies off by 8:47.
Day 307 (3rd): 1st meds done by 10:20-ish. Leggies on and stretches done by 11:25. Leggies off by 12:50-ish. Leggies back on by 8:18. Stander: 20 mins! New record! Leggies off by 9:46. Had second meds.
Day 308 (4th): 1st meds done by 10-ish. No special exercises or leggies done today. My work as his CNA got called off and it was my anniversary. We all took a day off! Except…he tried his new 1/8-pound wrist weights while driving for about 35-40 mins. He didn’t seem to mind them. We will be working with these more to help build his arms strength.
Day 309 (5th): Gideon finished 96% of his 1st meds bottle by 11. Leggies on and stretches done by 12:15. The last few days Gideon has wanted to help with brushing. He had his OT appt. today. He colored using his wrist weights and he used his new bolster. He did very well. Leggies off by 2:17. He had second meds.
Day 310 (6th): Had first meds by 7:45. Had leggies on by 9:20-ish. Leggies off by 1:28. Leggies back on by 6:26. Stander: 10 mins. Had second meds bottle.
Day 311 (7th): 1st meds botte done by 7:09. At 9:11, Gideon weighed 31.2lbs. Wrist weights, exercises, and leggies done by 9:47. Weights and leggies off by 11:44. Weights and leggies back on by 9. Had second meds. Leggies and weights off by 10:22.
Day 312 (8th): 1st meds done by 9:25-ish. Leggies, weights, and stretches done by 11:37. Leggies and weights off by 1-ish. Leggies and weights back on by 5:49. Gideon refused the stander today and only did a little of his second exercise set. Weights and leggies off by 8:33. Had second meds.