Hello World,
This past month was an exciting one! I began to work as Gideon’s CNA, which is a godsend financially. Baby sister Zoe came 3 weeks early. Gideon has begun to use his stander again and he has made great strides! He still has his ups and downs with getting both of his medicine bottles. But wait—there’s more! Big brothers Dylan and Gavin visited, and Kaylee turned 2!
As you will see in the notes, Gideon is averaging 6 hours per day in his AFOs (braces) broken up into 2 sets and he averages about 8 hours per day via use overnight with his hand braces. These are playfully referred to as “handies” and “leggies” in the notes. He has been using his stander. He loves to use it most either watching his fish tank (as pictured) or outside. Gideon got up to 17 minutes standing upright. That’s incredible! When you consider that he started back using it about a month ago and he could only tolerate 6 minutes upright, he has made amazing progress!
About midway through this month’s post notes, little sister Zoe came just before Dylan was about to go back home!
Overall, it seems that Gideon has a pattern of 3 days on and 3 days off this month with his second meds bottles. I used to see this issue as an annual one, as that was the pattern. Now, sadly, I expect this to continue. With the help of the CBD, though, there has been no breakthrough seizures. He seems to be going through a growth spurt which has caused some trouble with his sleep pattern. Combine that with his on again, off again pattern with his meds and you get painful evenings. Gideon has also had some changes in food preferences and become more insistent upon sleeping on his side. Both of these changes have thrown Mommy for a loop with all the other changes in our lives. Now that I am aware, though, I will keep up, lol.
Gideon saw a dietitian because he is a tad behind in weight gain. She prescribed an ounce per bottle feeding of Kate Farms Pediatric Peptide. We hope to see appropriate gains in the next few months. The dietitian also taught us something spectacular—Blendtec and Vitamix have medically needy programs that offer discounts or free blenders for people who tube feed or have other issues like dysphagia (which is Gideon’s issue). We applied and Vitamix has sent us a FREE blender! We hope to begin blending our dinners for him, so that he gets more variety.
Gideon has also been working on using pictures to communicate his needs to me with the help of his SLP (speech-language pathologist). This has been going very well and we hope to find a more permanent version of this to use very soon as he is currently using hand-drawn pictures that were made by the therapist. We have also tried the straw cup again with Gideon and he had good results. We definitely need more time and practice before it becomes his permanent means of feeding, though.
So, as you have read and can continue to read about below, this has been a BIG month for our family. We’ve had lots of fun, lots of trials, and lots of triumphs! Isn’t life amazing?! <3
Thank you for reading!
NOTES:
Day 248 (6th): Took handies off by 7:27, so about 8 hours. Leggies and basic stretches done by 11:45. Have more to do, but Gideon wouldn’t tolerate all and I’m still learning. Leggies off by 12:53, not tolerating anything well. Will try again later. Leggies back on around 8:30. Had second med bottle. Leggies off and handies on by 10:27.
Day 249 (7th): Handies off by 6:10, so almost 8 hours. 1st med bottle by 8:40. Leggies and stretched done by 10:12. Leggies off by 1:25. Leggies back on by 4:55. Leggies off at 8. Handies on by 9:50. 2nd med bottle by 10:15-ish.
Day 250 (8th): Handies off by 8:48, about 12 hours. 1st med bottle by 10. Stretches and leggies done by 11:09. Leggies off by 2:16. Leggies on by 4:49. Leggies off by 8:52. Ate 2nd med bottle by 9:12. Handies on by 10-ish.
Day 251 (9th): Handies off by 8:55, about 11 hours. 1st med bottle by 1:32. Leggies on by 2:19. Started stander at 3:41 with inclining from horizontal. At 3:47, at 90 degrees for 10 minutes. Leggies off by 5:22. Leggies back on by 6:55. Leggies back off by 9:55. Handies on by 10. No 2nd med bottle.
Day 252 (10th): Handies off by 9:06, 11 hours. 1st meds by 11:06. Stretches and leggies on by 12:05. Tolerated 8 reps of each today. Leggies off by 2:59, almost tolerated his 3 hours. Leggies back on by 5:23. Did second set of home exercises for 1st time today. Went ok. Went in at 6:05, upright at 6:08. Done at 6:23, upright for 15 mins. Leggies off by 8:17. Handies on by 8:13. No 2nd med bottle.
Day 253 (11th): Handies off at 4:30, so 8.25 hours. He has had a difficult night. Stretches and leggies on by 12:31. Leggies off by somewhere around 3:20. No second med bottle tonight. It’s almost 4, he’s napping and hasn’t eaten the 1st. Finally had 1st med bottle by 4:05. Leggies back on at 5:25. Inclining on stander at 6:05. Upright at 6:09 until 6:17. Put him back about 3 degrees. Stopped at 6:19, because he looked like he may throw up (he des that when overworked). Leggies off by 8:11. Handies on by 9:05.
Day 254 (12th): Handies off by 7:32. He had them on for 10+ hours. Had 1st med bottle around 8:30. Leggies on by 10:09 and stretches done. Accidentally did 10 reps instead of the 8 we just started, and he tolerated it. Also, with his ankle flexion stretches, I was able to hold each flex for 10 seconds instead of the usual 5. Leggies off by 1:44. Leggies back on by 6:34. Stander: start incline at 7:14. At 90 degrees by 7:17. Stopped by 7:26, about 9 mins. Had 2nd med bottle by 7:35. Leggies off by 8:40, about an hour early, but I thought I put them on earlier, too. Oops. Handies on by 9:32.
Day 255 (13th): Handies off by 7:27. 1st meds at 8:42. Leggies and stretches done by 9:40. Gideon was not up for all stretches today. Leggies off by 12:46. Leggies back on by 5:24, wouldn’t do all exercises and did not want to do the stander. He’s having a day. Leggies off by 8:29. Had second med bottle.
Day 256 (14th): Handies off by 6:30. 1st meds around 9:15. Stretches and leggies on by 10:21. Was a little weird about his left side, but got most stretches done. Leggies off by 1:29. Leggies on by 5:10. Stander at 5:39, upright by 5:42 until 5:49. Put back 5-10 degrees because of possible vomit sound. Stopped at 5:51. Leggies off by 8:22. Had second med bottle. Handies on by 9:06.
Day 257 (15th): Handies off by 7:00. 1st med by 8:04. Leggies on by 10:50. Not really tolerating them today, will do a short visit of 1.5 hours. Well, he did not tolerate more than 15-20 mins. Leggies back on 5:54. Stander: took about 2 minutes to get upright. 6:49 upright until 7:01.
*Had baby that night. No notes until 7/18.
Day 260 (18th): 1st meds 10. Leggies on at 5:13. Stander 7 mins to upright and then spent 5 mins upright but did not tolerate well. Leggies off by 8:15. Had 2nd med bottle. Handies by 9:01.
Day 261 (19th): Handies off by 7:26. 1st meds by 8:40. Leggies and most stretches done by 9:20. Leggies off by 12:20. Leggies back on by 5:07. Not up for second exercise set or stander today. Had second meds. Leggies off by 8:10. Handies on by 9.
Day 262 (20th): Handies off by 6:10. Leggies on by 12:39 and in chair, too. Out of chair by 1. 1st meds done by 1:05, so probably won’t have 2nd. Leggies back on by 5:11. In stander and moving by 5:36 and upright by 5:39. Stayed upright for 5-6 mins. Put back a few degrees so that he could enjoy looking at his saltwater fish tank. Stayed that way for another 2-3 minutes before acting as though he’s hungry. Leggies off by 8:15. Handies on by 9. Gideon gives hugs! I learned by watching him with his SLP today. It’s the best thing EVER! <3
Day 263 (21st): Handies off by 7:40. Leggies and most stretches done by 11:26. Leggies off by 2:26. Even though he has not eaten his first bottle yet, we did try the Oxo again with this bottle. He did very well! I have hope! It will definitely take more practice, but I think we will get it! <3 Leggies back on at 5:03. Stander 45 degrees at 5:24, upright at 5:27 and brought him to the fish tank. He did about 9 minutes upright! Leggies off by 8:03. Finished 1st med bottle at 8:36. I had finally realized, after hours of him just barely making headway on the bottle, that maybe he no longer cared for this flavor, prunes. So, I mixed it with bananas and apples and he ate it quickly. He has no way to let me know (not yet anyway) that this was the problem. The gestures and faces he made are the exact same as if he weren’t hungry. Now that I know this could be an issue, I will look for it to be a cause for his lack of eating in the future. It makes me feel so terrible, though. He denied food most of the day simply because he no longer has a taste for a certain food. ☹ I am grateful that I learned, though. Handies on by 8:57.
Day 264 (22nd): Handies off by 7:10. Had meds by 11. Leggies and some stretches done by 11:13. Leggies off by 2:18. Leggies on by 5:58. Stander 3 mins to get upright and upright for 10 minutes! Leggies off at 8:58 and handies on at 9. Second bottle mostly done. He ended up eating about 95% of it. I’d say that’s a win.
Day 265 (23rd): Handies off by 6:47. Leggies and stretches done by 8:28. 1st med bottle by 8:45. Leggies off by 11:28. Leggies back on by 6:22. Leggies off and handies on by 9:26. Only ate about 2/3 of 2nd med bottle. Tried new Frieda toothbrush. Seemed to be easier on him.
Day 266 (24th): Handies off by 7:45. Yesterday, Gideon had his first appt with the dietitian to address his being slightly underweight. We will be using a Medicaid-covered non-GMO and 98% or so organic liquid to supplement his bottles. It is called Katie Farms. Thankfully, the doc wasn’t too worried about Gideon’s growth, but this should help. Finished 1st med bottle by 10:35. Leggies and most stretches done by 11:10. Leggies off by 2:10. No leggies or afternoon exercises. Gideon has been moody for days, but today has been pretty bad. He slept for a long time for his nap and woke up in a mood still. Going to discuss communication with his SLP this week. I really want to know what’s going on with him when he has days like this. He wouldn’t eat his meat bottle, so I’m going to try a fruit/veg bottle with his meds. Had meds bottle by 8:47. Handies on by 8:57. He tried to use his new toothbrush today. He really seems to love this one, too!
Day 267 (25th): Handies off by 8:30. 1st meds by 9:15. Leggies on and ALL stretches done by 11:18. Leggies off by 2:18. Leggies on by 5:04. Stander: 2 mins to upright and upright for 7 mins. Handies on by 8:59. May not have 2nd meds.
Day 268 (26th): Handies off by 7:33. 1st meds by 10. Leggies and stretches done by 10:45. Leggies off by 1:45. Forgot to mention that for about the last week or so, Gideon has been active with some of his passive range of motion exercises. This is great! Leggies on by 6:02. Stander: started 6:08. Upright at 6:12 for 6 minutes. Leggies off by 9:07 and handies on. Missed 2nd meds again.
Day 269 (27th): Handies off by 7:26. Finished 1st meds by 10. Leggies on by 10:44. Leggies off at 1:44. Leggies back on by 5:14. Gideon would not do second set of exercises today, because of a late nap. He was just overtired and tearful. Leggies off at 8:14 and second meds eaten. Handies on by 9. SLP therapist gave us a few pictures to work on communication between Gideon and I.
Day 270 (28th): Handies off by 7:52. 1st meds by 9:25. Leggies and most of his stretches done by 11:54. Using pictures today, Gideon has been communicating well. Leggies off by 2:24. Leggies on by 6:24. Handies on and leggies off by 9. Had 2nd meds.
Day 271 (29th): Handies off in middle of night. Gideon did not sleep well. 1st meds by 9:45-ish. Leggies on and some exercises done by 11:45-ish. Leggies off by 2:48. Leggies back on by 5:58. Stander 6:20. Took 2 mins to get upright. Stayed that way for 6 mins. Leggies off by 8:58 and handies on by 9. Ate 2/3 of 2nd meds. Gideon did well with his pictures for communication.
Day 272 (30th): Handies off by 7:57. Finished meds by 10:30. Refused stretches this morning, but leggies on by 10:35. Leggies off at 1:35. Leggies on at 5:50. Stander 2 mins to get upright and stayed that way for 7 mins. Leggies off at 8:42. Handies on by 8:56. Probably no 2nd meds.
Day 273 (31st): Handies off by 7:16. 1st meds by 10:40. Leggies on by 11:16 and some stretches done. Off by 2:16. Leggies back on by 6:30. Stander did 6 minutes upright. Leggies off by 8:43 and handies on by 8:50. Probably not having meds yet again.
Day 274 (1st): Handies off by 8:30. Leggies and stretches done by 11:25. 1st meds by 11:35. Leggies off by 2:28. Leggies back on at 6:30. Stander upright for 16 minutes! We let him stand in the doorway so that he could see outside (can’t get stander out too easily). He got upset when I took him out, so I brought him back outside and he stood for 2-3 more minutes! CBD only at 9-ish. Leggies off by 9:04 and handies in by 9:05.
Day 275 (2nd): Handies off by 7:50. 1st meds done by 9:12. Leggies on by 10:31. Leggies off by 2:10. Leggies back on by 6:30. Daddy did second exercises and standing with him today. They like to do these things together sometimes. Handies on, leggies off, and 2nd meds done by 9:30-ish.
Day 276 (3rd): Handies off by 6:21. Had 1st meds by 9-ish. Leggies on and some stretches done by 10:15. Gideon misled me with communication pics. Will have to work on that. Leggies off by 1:15. Leggies back on by 6:30. Did 13 minutes in stander upright. Took stander all they way OUTSIDE! Leggies off by 8:21. Handies on by 9. Helped me brush his teeth and opened his mouth for me. No 2nd meds, though. Handies off at 11:30-45-ish. He was having trouble sleeping and very upset.
Day 277 (4th): Leggies on by 11:58. Finished 1st meds around 12:45-ish. Probably no 2nd meds today. Leggies off by 2:47. Leggies back on at 5:30. Stander for 17 mins. in front of fish tank. Leggies off around 8:45. Handies on by 9:05.
Day 278 (5th): Handies off by 9:18. 1st meds by 10:15. Leggies on and stretches done by 11:17. Leggies off by 2:30-ish. 2nd meds tonight done by 10:40-ish.
Day 279 (6th): Forgot handies last night. Gideon has been in pain the last few nights. 1st meds by 9:30-ish. Leggies on and stretches done by 11:10. Leggies off by 2:12. Took a long nap, so leggies back on by 7:55. Will only do an hour or so more tonight. Stander: 6 mins upright. Leggies off and handies on by 9:44. Finished 96-98% pf 2nd meds by 9:48.