Last night, for the first time in a week or so, we put on one of Gideon’s braces that we alternate nightly (when on schedule). We waited for him to seem comfortable enough with the CBD to begin to use these again. We do not want to overwhelm him in any way. These braces are used at night as he sleeps to keep him from bending at the knees, which in turn, shortens his hamstrings (long-term, this shortening could require surgery to correct). Some kids who use these can handle wearing both throughout the night. Gideon usually does best alternating each evening. We are happy to report that it was very easy to straighten his leg and set the brace accurately. He slept very well and did not complain of discomfort from the brace (which happened at times prior to using the CBD oil). Perhaps, in time, we will see if he can tolerate both at night (maybe by starting with doing both every other night). This morning, it was still very easy to straighten his legs (even the one that was not braced overnight). He was calm, well-rested and his muscles were not too tight.
Today was also the first time we used his hand and leg braces since beginning this trial. Again, we were elated to see the results. First, it is important to understand the braces. Previously, we mentioned that his hands stayed balled into tight fists prior to the CBD. His thumbs are especially problematic. The hand braces are neoprene gloves (without fingertip coverage) that have a hard-plastic spacer between his thumb and index finger. They serve to train his body to separate his thumb from his hand and keep his hands open in general. Prior to CBD, it would take some effort to massage and stretch his hands before applying his braces. If you did not massage them, they would not sit well on his hands and they would not serve their purpose. Surprisingly, it took almost no effort to apply them correctly. We did not even have to massage his hands.
The leg braces train his feet and legs to sit at their normal 90° angle at the ankle. Gideon specifically points his feet tightly and slightly outward. He is extremely tight in these areas of his legs. Like his hands, usually, we would need to massage and stretch his legs to be able to get his feet and legs into position. Without the massage and without much stretching, today he was able to get into position easily. For the first time in a while, the plastic molded around his feet the way they were meant to for the duration (over an hour). Prior to CBD, Gideon could only usually handle about an hour or 2 in his braces. In time, we would like to see if this expedites his tolerance for longer wearing time (it has been a slow process to increase the length of time Gideon wears them, discomfort sets in quickly).
After applying both sets of braces, we sat him at about a 75° angle in his Tumbleform chair (usually, he does best at about a 55°). He has a matching table that we use to set up functional playtime. Of course, with Gideon and his low motor skills, almost all play is functional. What is meant by functional is doing specific things or using specific toys to play while building upon motor and other skills. Prior to the CBD oil, Gideon could not play well with his hand braces on and did best without them (but still poorly). They are relatively new and not well broken in. They are also a new style from his previous set. So, in many ways, they have their own challenges for Gideon (aside from the obvious—the thumb spacer). Despite all of this, Gideon did very well playing with braces on. Upon removing the sets of braces today, we found very little redness. With braces, parents are to monitor how red the skin gets for sizing and other issues. Usually, for Gideon, the redness arises from his body working against how they are meant to function. All around, very good news!
This evening, as the morning dose should be just about worn off, we watched as Gideon’s eyes tracked to his sister, Kaylee. With non-verbal children, you often have to learn their body language and follow their gaze to even to begin to understand what they want or need. As usual, Kaylee was bouncing from a standing position onto stacked pillows and back to feet again. She has lots of energy! Gideon motioned to me (Mom) with his body language (he was practicing sitting upright in my lap) that he wanted to stand up. Despite the new laxity in his legs, Gideon stood very well—even supporting his own core muscles! His time on his feet has always been short and I was not really looking for length of time tonight anyway. Although, he stood and sat multiple times. We were happy to see 2 wonderful new developments at once—he could use his legs well and his core muscles. This implies, or demonstrates to us, that the CBD helps to balance the overall tone in his body (whether high or low). Note: While we have not yet heard back from his therapist about her initial impressions about the CBD and his core muscles, we could feel him using his muscles to do the work.
Gideon has also been more willing to use his hands and my hands to answer questions with 2 possibilities. We will ask him a question, ensuring we have his full attention, and then give him two options using our 2 fists to indicate each choice. He is to choose one. Often, he is very tight, and this will only work well with massage and stretching. Today, without any massage and some stretching, he was answering questions very well. The only time he was unclear was when his attention was divided.
I almost forgot—excessive drooling is a common “issue” with cerebral palsy. Gideon definitely drooled quite a bit (and one of his pharmaceutical meds increased it). Since using the CBD again, his drooling has lessened noticeably.
The best part? As I mentioned above, Gideon was watching his sister bounce and physically asked to stand. After a few times of standing and sitting (which we thought was him getting tired of using his muscles to stand), he started to stand up and sit down, motion to stand up and sit down again, each time a little faster. Soon, we realized he was probably mimicking his sister’s bouncing! This is astounding! This went on for about 5 minutes. For him, that is a long time to do such intensive physical activity at once (especially on his legs/feet). It is important to mention that this was not done while wearing his leg braces, so his feet were not at the optimal position. BUT this activity was very important because he usually does not do much weight-bearing on his legs (yet, we have been working his time up slowly as previously mentioned). If this were to continue (due to lack of mobility or whatever challenge), his hips and pelvic area may not develop correctly. So, one step at a time and this one (weight-bearing) is important to tackle ASAP. Gideon was weight-bearing! And he was bouncing! <3
Throughout the entire day, Gideon has remained vocal and smiling. He has been playing with new sounds, too. He laughs more. Things are looking amazing for his progress!
Could this be a dream?!