It has been an interesting month or so. For the first 5 days, Gideon ate both medicine bottles. His slump only lasted 3 days, though. It appears, while he still has ups and downs where he does not get both medicine bottles, the slumps are shorter and less frequent. For another 4 days, he ate both medicine bottles. On the fifth day, though, he only ate ½ of his second medicine bottle. The following day he only had one medicine bottle, but the very next day (and for a total of 4 days) he went back to eating both. Following that, he went into another slump for 4 days. Looking back, there seems to be an average of 4 days, as he went back to 2 medicine bottles per day for another 4 days. The day after that, he had a slump, but only for one day. After that, he ate both med bottles for 8 days. On the 9th day, he only ate ½ of his second med bottle. Finally, for the last 3 days, he has been eating very late. Happily, though, he did have his second med bottle tonight. We are hopeful that his average will soon be more than 4 days at a time having both of his medicine bottles. I am thinking that maybe the fire is getting to the kiddos. No signs of illness, but they’ve been sleeping late, and Gideon has been eating less. The fire to which I am referring is the #SpringFire, which is now at over 103,000 acres. We are still not affected by the burn, but smoke occasionally drifts this way and the evacuations are creeping closer. Tonight, we got rain and it seems to help quell some of the fire.
I have completed my CNA classes with perfect attendance and an overall grade of 4.0. In fact, the entire class was awarded the same and it was the first time this occurred for the program in campus history! I practice for state testing as much as possible. The home care agency I will be working for is coming this week to create Gideon’s care plan. My preoccupation with school caused some issues in getting all of Gideon’s various exercises and equipment usage in. I did do the best I could, though. Gideon averages about 45 minutes to an hour per day in his Tumbleform chair which encourages upright sitting and head control. He prefers using his chair with his daddy. I started documenting Gideon’s time with his hand and leg braces on (dubbed “handies” and “leggies,” lol). Over the month, he has gotten up to 6 hours in his leg braces per day (as a suggestion from his PT to help prevent hamstring contractures), split into two 3-hour sessions. The only time that this doesn’t happen is if he is having a particularly difficult day. His OT and I noticed that he really won’t use his hands with his hand braces on. So, she suggested that I put him in them right before sleep. That has been working wonders! He averages 8-9 hours per evening in them. As for his stander, it fell by the wayside during school a bit, in part because I have been learning to put new range of motion exercises and other forms of exercise into practice and he still does not tolerate the stander well. He seems to manage for about 10 minutes in his stander. Once we write up his care plan, I will finally have a useful schedule to stick to and I hope to better about getting his time in the stander. As expected, some days he will not tolerate much stretching or other implement usage. We just do the best we can. Gideon has been particularly interested in attempting to help brush his teeth over the last month or so. We love it! We have increased working on Gideon’s eye tracking and making choices with his hands for communication to tell us what he needs and wants. He can say hi or wave. He has been able to for a while, but there seems to be an increase in his attempts to do so. I have attempted to use the new straw bottle (Oxo) I mentioned in our last post, but only once. He did it, though! Like the stander, it fell by the wayside while I was in school. This is yet another thing I hope to work on more.
We have been blessed with kids’ birthdays and visits. In June, Gideon turned 4! We celebrated on Father’s Day while his half-brother (who happens to run a vlog for Serenity Valley and Gideon on YouTube called “Serenity Studios”) was visiting. Gideon was spoiled by being allowed to taste the dark chocolate mascarpone frosting I made for Daddy’s cake. Also, we bought him blue cotton candy to try since it melts in his mouth. To top it all off, Gideon had a birthday bottle which consisted of butterscotch and chocolate pudding with the other half being his single grain oatmeal. He only gets this kind of thing once a year, and considering his age, I’d say his diet isn’t so bad. He got his annual favorite accessible toy (among other things)—a Paw Patrol balloon. Gideon’s other half-brother has come into town this week. Kaylee’s birthday is today. She turns 2! Both Gideon and Kaylee have had their share of sweets and excitement. We have a full house, because 2 half-brothers are here (who are related to each other by being step-brothers). We have missed these young men so much! They are our preteens. My son intends to start sharing Serenity Valley and Gideon’s Garden info on his YouTube channel as well. What a wonderful thing they want to do! We are blessed to have such thoughtful boys.
So, overall, I would say Gideon is progressing very well. We are hopeful that his new care plan will keep on task and increase Gideon’s capabilities. The notes below give a more in-depth look in some cases to how his progress actually looks. Some days are vaguer than others, of course. In the near future, there are many new adventures on the horizon. I absolutely MUST PASS state testing the first time! I have one shot, because baby sister is due August 5th! Keep in mind, once she is here, my blogging may be less frequent, but I will be keeping my notes and posting as I can. I will not forget our readers.
We hope your summer is wonderful!
Thank you for reading!
Day 209 (28th): 2 med bottles. Seems like he wants to hold the bottle more than he has wanted to in a long time. Wanted to brush teeth, but quickly lost interest.
Day 210 (29th): Adding new notes. Chair for 45 mins. Leggies and handies on for 2 hours. OT visit. Gideon usually avoids using his left hand, the more affected hand. Today, with the OT, he was initiating movement from that side. Progress! 2 med bottles.
Day 211 (30th): Ate by 8:30 (1st med). Started leggies and handies by 10. Did 2 hours. Did stretches before, used some CNA techniques for practice. Very loose, even on left side. Put in chair at 10:10. Did 20 mins. in chair, not feeling well. Had PT, she said there was nothing new to report. 2 med bottles.
Day 212 (31st): Ate by 8:20 (1st med). Started leggies and handies by 9:36. Did for 2 hrs. and 5 mins. Did stretches before, used some CNA techniques for practice. Very loose, even on left side. Fought me on ankle dorsiflexion stretches. Put him in chair by 9:50. Out of chair by 10:35. Both med bottles.
Day 213 (1st): Ate by 8:30. Started leggies and handies by 9:41. Did 2 hours. Did stretches before, used some CAN techniques for practice. Since I’ve been adding those stretches, he seems looser and goes into his AFOs with greater ease. My process is 10 reps on each leg, and 10 reps of 2 ROM exercises on his arms. I have a few I do to prep him for his braces (hands and feet), too. He did not seem interested in his chair. Will attempt again later. His left side was a little tighter as expected. He giggles during the counting and stretches now. Kaylee (almost 2), now counts to 10 with me. SLP came today. She used a device called a switch to assist him with communication. She started blowing bubbles for him. She stopped, and he attempted to grab the bottle of bubbles. She set the switch for him to ask for bubbles. He used his right hand to activate the switch to ask for bubbles, but that is no indicator of preference (just where it was positioned). He used his left hand to pop bubbles (which was awesome because he could choose to use either hand based on positioning). Gideon was also shown a few browser tabs of superheroes. He was asked to lift his hand to point out which one he liked best. He was shown: Spiderman, Batman, Thor, Wonder Woman, and Bat Girl. He lifted his hand and smiled for THOR! The therapist has said that we will wait until July, after my CAN classes, to revisit preparing Gideon for home school. He ended up doing about 1.25-1.5 hours in his chair later in the day. Had both med bottles.
*Gideon lifts his arm to say hi sometimes. He has been doing it for months, basically since he’s had more ROM. I have also noticed that if he agrees with something you are saying, he will open his mouth and make a simple sound and sometimes he will also smile. If he’s displeased or disagrees, he does his own version of pursing his lips (not the same way that is used to activate a straw, but similar) and he furrows his eyebrows.
Day 214 (2nd): Gideon FINALLY ate by 11am. In chair at 12:07. Out by 12:41. Did not complete all arms exercises but did complete all leg exercises. Gideon is not in the mood for much therapy today. Got him into his AFOs and hand braces, though there was a bit of upset on his part. Done by 12:52. Gideon colored today using hand over hand technique to make art for his special pen pals. He did very well and was happy about it. It was obvious when he was getting close to being done with the activity. Did 2 hours and 20 mins in his braces. On his second bottle, a regular food bottle, I tried interchanging his bottle for the newer Oxo cup mentioned previously. He avoided using it as he was very hungry. After his bottle was done, though, he DID try it! He was able to get the straw to work and get a suck or 2 in! While he did not want to do more, this is a hopeful start! Only one medicine bottle, not hungry.
Day 215 (3rd): He’s almost certainly having only one med bottle today. He hasn’t eaten at all and it’s past 11:30. FINALLY ate by 1:20. Got Gideon’s braces on and into chair by 3:07. Added new ROM exercises shown in my CAN book. Brought reps down to 5 until we get a flow going and until I ask about how many reps of each should be done. I now do passive range of motion exercises with Gideon for the following: Shoulders, elbows, wrists, thumb, fingers, hips, knees, ankles, and toes. I also learned that the order I gave them in (in the last sentence) is the proper way to perform these exercises (from top to bottom). I just LOVE how he smiles during his exercises! Out of chair by 4:30. Braces off by 5:33 (fell asleep with them on). Kaylee tried to take them off him, lol. Only one med bottle.
Day 216 (4th): Still hasn’t eaten his first med. bottle and it’s noon. It’s not likely that he will have his second one. Gideon ate med. bottle by 2:45. Daddy did his stretches.
Day 217 (5th): Had meds by 9:10. Got ROM done and braces on by 10:05. Rep from Numotion came to assist with stander. I learned how to better use it for Gideon. We had him standing straight up for about 5-8 minutes before he started to cry. Attempted to angle him backward bit by bit. Nothing worked. Took him out, still angry. Going to see if he’s hungry. He stopped crying before the bottle. Will still see if that is the issue. I think he’s hungry, but not enough to eat much of the bottle. Wore braes for 2 hrs. and 5 mins. Gideon was not up for the chair today. He did have his 2nd med bottle.
Day 218 (6th): Finished med bottle at 9:15. Braces on and in chair by 11: 05. Out of chair by 11:25. Into stander by 11:29. Managed 10 mins. of increasing angles toward upright at 90 degrees. Did not make 90 degrees for more than a minute, but just under 90 degrees for about 3 minutes. Used braces for 2 hours. Sleeping when OT came. Woke up and did well with exercises. Had second bottle.
Day 219 (7th): Finished 1st bottle by 9:10. Did stretches and got Gideon into braces by 9:55. Added a few stretches the OT suggested including shoulder rotation, a few shoulder/arm stretches across the midline, and in a similar vein (though I added it), hips/legs across midline and internal rotation of hips. Greg just told me he puts Gideon in the chair at night for 30 mins. to an hour. So, Gideon is getting extra on the days I can get him in during the day. Gideon’s very vocal today. His braces came off after 3 hours. Did not have time to get stander done today (school, had installers here, etc.). Some days I just cannot keep up! PT came. We went over the trochanter roll and some other exercises I will be doing with Gideon. Had second med bottle. Gideon went into chair for daddy (for about an hour or 2 each time).
Day 220 (8th): Had 1st med bottle by 8:25. In braces and stretched by 9:45. Braces off by 12:15. Did not get to chair or stander today (he fell asleep for a long nap and pregnancy and school has kicked Mommy’s butt). Gideon did not get SLP therapy today, as he slept through it. Seems we both had an “off” day, lol. Gideon went into chair for daddy. Ate second med bottle.
Day 221 (9th): Gideon finally had his med bottle by 12:40. Didn’t do braces today. He did lots of tummy time, though. I just wasn’t feeling well with the pregnancy. He ate half of his second med. bottle.
Day 222 (10th): Gideon finally had his med bottle by 1:45. Daddy did stretches for about 30 mins. Braces since 3:30. Had the braces on until 6:20, almost 3 hours. No second med. bottle. Helped me brush his teeth tonight.
Day 223 (11th): Had med bottle by 7:15. Daddy stretched Gideon and gave him chair time. He also had his second med bottle.
Day 224 (12th): Had med bottle by 9:40. Stretched and in braces by 10:40. Braces off by 1:38, so almost 3 hours. Think I may do the stander on days I don’t have school, as I get side tracked by it and forget accidentally. Chair time with daddy. Meds tonight.
Day 225 (13th): Gideon’s 4th birthday! Celebrating on Father’s Day. Gideon had his meds around 8:25. Stretched and braces on by 10:36. Braces off by 12:36. Gideon seemed irritated by either them or food. Couldn’t tell, so took them off. Gideon had chair time with daddy and had his med bottle.
Day 226 (14th): Gideon had his 1st med. bottle by 9. Stretched and into braces by 11. He had his braces removed by 2pm (3 hours). PT came today. Gideon giggled through his exercises. Soon I will be learning some of his more involved exercises that go beyond simple ROM stretches. He had his second bottle. Chair time with daddy.
Day 227 (15th): Gideon had about a full dose of CBD with his first med bottle. CBD is arriving late, so I’m not sure when he will get his next dose. Yet, most likely, he will get both medicine bottle today (just without CBD for the second). Ok, well no bottle and it’s past 12:30. Looks like he won’t get his second med. bottle anyway. Had his bottle by 1. So, still haven’t done stretches and he may not get stander time. We will see. Gideon would not let me put his braces on today. He’s been a little off. No chair time either.
Day 228 (16th): Received CBD this morning. Had meds by 10:20. Was not thrilled about stretches, so didn’t do all reps in some cases. Braces on by 1:40. Took off braces by 4:40. He ate late, so it looks like he may not have his 2nd med. bottle. Will keep trying. He never ate his second med bottle.
Day 229 (17th): Finished 1st med bottle at 11. Really didn’t want me to mess with is braces or stretching today. Will try again, though. Braces and stretches done by 2:25. Since we are celebrating Gideon’s b-day today with Father’s Day, he was allowed to taste the dark chocolate mascarpone frosting I made for Daddy’s cake and I also bought him blue cotton candy to try since it melts in his mouth. He really enjoyed that. Braces off by 5. He is getting a birthday bottle which consists of butterscotch and chocolate pudding with the other half being his single grain oatmeal. He only gets this kind of thing once a year, and considering his age, I’d say his diet isn’t so bad. Didn’t take 2nd med bottle.
Day 230 (18th): Didn’t finish first med bottle until 5:30. Definitely not getting second. Not likely to get stretched or braces. Been so tight today due to no meds until late.
Day 231 (19th): Finally got 1st meds bottle early by 8:30. Stretches and braces on by 9:22. Was really loose for stretching today. Great news considering his last few days of reluctance and missing them. Braces off by 12:30pm. Last week, Gideon’s PT mentioned that to prevent contractures in his hamstring region, I should put him in his leg braces twice a day with a break in between. Going to try this today. Got him in his leggies for 2nd time by 2:42. He didn’t seem bothered by the idea. We’ll see what happens. He worse them until about 5:50! Yay, over 6 hours in leg braces! He had his second med bottle, too!
Day 232 (20th): 1st med bottle by 9. Braces on by 10:49. Wouldn’t let me do most stretches. Will tell OT as she will be here today. Maybe she can get some in. Hand braces off by 1:20, about 2.5 hours. Leg braces off for 1st time by 2:05, about 3 hours and 15 mins. OT performed stretches that he would not do with me and then spent time teaching me other exercises that I will need to perform with him for both work as his CNA and for his development. Leg braces back on by 4:56. Had leg braces off again by 7:26, so another 2.5 hours. Had 2nd med bottle. Attempted to put handies on overnight as per the OT’s suggestion. He wore them from 10 to 6:46, 8.75 hours.
Day 233 (21st): Ate 1st med bottle by 7:55. Stretches done and in leggies only (because overnight handies) by 10:33. Leggies off by 2:07. Handies on by 9:30 or so. Had second med bottle.
Day 234 (22nd): Removed handies by 7, so he wore them for 9.5 hours. Has 1st med bottle by 8:30. Stretches and leggies on by 9:52. Leggies off by 1:22, about 3.5 hours. Put leggies back on by 4:28. Had second med bottle. Leggies back off by 7:06, about 2.5 hours. Handies on by 10:11.
Day 235 (23rd): Handies off by 7:07, about 9 hours. Had med bottle by 9:50. Leggies on by 11:36. Took off leggies around 3:06, so 3.5 hours. Forgot to do leggies again, because I was busy preparing for my CNA state testing. I didn’t make him wear his handies to bed, either. Sometimes, I just want to give him a break, especially since he didn’t have his med bottle until he almost passed out.
Day 236 (24th): Had 1st med bottle by 10:10. Stretches and leggies on by 2:12. Leggies off by 6:40, almost 4.5 hours. He has 2nd med bottle. Handies on by 9:52. Daddy did chair time.
Day 237 (25th): Handies off by 7:15, so about 9 hours. Had 1st med bottle by 8:33. Stretches and leggies done by 9:46. Leggies off by 12:51, 3 hours. Handies on by 11:45. Had second med bottle. Daddy did chair time.
Day 238 (26th): Handies off by 4:45, about 5 hours. Had 1st med bottle by 9:27. Had his stretches and leggies on by 10:42. Leggies off by 1:49, 3 hrs. Had second med bottle. Handies on by 10:50.
Day 239 (27th): Handies off by 7:15, about 8.5 hours. Had meds by 8:23. Leggies and stretches done by 9:40. Leggies off by 1, so 3.25 hours. Had 2nd med bottle. Handies on by about 10:30. Handies off by 7:39, about 9 hours.
Day 240 (28th): Had 1st meds by 9. Had 2nd meds by 8-ish. Was gone most of the day, so no leggies. Handies on by 10:30. Attempted to help brush teeth.
Day 241 (29th): Handies off by 7:35, about 9 hours. 1st meds by 9:30. Leggies on and stretches done by 5:50. Leggies off by 8:50. Attempted to help brush teeth. Handies on by 10:30. Had second med bottle.
Day 242 (30th): Finished first med bottle by 10. PT who comes to review case came today. She stretched him. Said he gets better each time she visits. Leggies on by 11:34. Leggies off by around 1:45 2 hours (accidental, thought it had been 3). Leggies back on by 4:39. Had leggies off by 8:40, about 4 hours. Forgot handies tonight. Was doing some required work. Had second med bottle.
Day 243 (1st): Finished 1st med bottle by 10:20. Got leggies on by 1:30. He would not let me stretch him today. Leggies off by 4:42. FINALLY finished meds at 10:44 and got handies on.
Day 244 (2nd): Handies off by 7:38, about 9 hours. Gideon finished 1st med bottle by 10:20. Leggies on and stretches done by 12:08. Leggies off by 2:30, wasn’t cooperative. Ate only half of 2nd med bottle. Handies on by 10:40.
Day 245 (3rd): Took off handies around 10, so almost 12 hours. Gideon did not finish his med bottle until 5-ish. He has stretches as he had PT. No leggies, because of lack of meds. No handies tonight. Giving him a break because he’s has a rough day. No second med bottle.
Day 246 (4th): Did stretches and put on leggies by 1:15. Leggies off by 4:40. Finally ate his 1st med bottle around 6! Handies on by 10:35-ish. Helped brush teeth. No second med bottle. Was in his chair between 30-45 mins.
Day 247 (5th): Took handies off 10:25, so almost 12 hours. Had his med bottle by 12:45. Hope he gets his second. Some stretches done (wasn’t very cooperative) and leggies on by 1:19. We’ll see what happens with the OT. The OT showed me some other exercises I’m learning. Gideon did not tolerate his leggies well, so they were off by 2:40. He had his second med bottle late. Handies on by 11:25.