The past month or so has been interesting. Overall, Gideon has had both medicine bottles most days. It seems that this annual roller coaster will be ending soon. There are still fluctuations as noted below. His OT has mentioned that he does seem looser on the newer dosage and he sat up very well for her. Gideon’s PT had also said that he seems looser as well. He has not made great strides in crawling yet, but we are not giving up. His increased mobility will help him in every way as he learns to use his muscles properly (now that he can).
We FINALLY received his stander. It was set up and in good working order. We made a few attempts at using it, but Gideon’s legs would not straighten correctly in the upright position. We are waiting for an appointment to see if adjustments need to be made. They will also look at if I am positioning him correctly as I stand him up. We have been told not to attempt use it again until after the appointment just in case there are any concerns that might cause him more physical problems. On that first day, though, he stood for about 20 minutes without issues! It was great!
We have some new developments in Gideon’s life that we are working on. We are working to create a home school regimen that will work for him since he is non-verbal, and we hope to get an IEP into place as well. The x-cut nipples are becoming more difficult to find and more expensive. It is “not suggested” nor “approved” to cut regular nipples on your own or use the y-cut nipples according to his swallow therapy professionals. So, we have bought a new straw toddler cup that we hope will work for him in time. He has very specific issues with using his orofacial muscles (lips, cheeks, etc.). He cannot use standard sized straws as he cannot purse his lips in that shape. He cannot hold a sippy cup yet as he still cannot hold the weight of his regular bottle. So, we opted to try the Oxo Toddler Straw Cup pictured below. As you might be able to see, the straw is soft and almond-shaped. We had hoped that this might be easier for his transition. When we attempted hard straws earlier on, he was completely resistant. We have attempted using this cup a few times with no positive results yet. We will keep trying. We are hopeful!
Another development in our lives is that starting this Tuesday, May 29th, I will be going to an accelerated class to become Gideon’s paid CNA (caretaker). Assuming I pass the state test in July, we will finally have 2 incomes once again! As many of you know, special needs families often have only one working parent (unless they enter a program like this) or they will choose to work opposite schedules from one another.
Over the last month or so, we have witnessed Gideon begin to attempt and use new sounds. Of course, for now, they are still not “word-like,” but this is wonderful for him. Additionally, he “speaks” much more often than prior to the recent CBBD dosage increase. Checking in with his therapists over the past month, as mentioned above, they have consistently said that they see real improvement in Gideon’s mobility. Even his nurse, whom he only sees him every month or so, has noticed great increases in his mobility. He still has trouble with his more affected arm (left), but it is better than it was. It would not be reasonable to think that the CBD treatment would miraculously balance the differences in his right and left sides, anyway. Also, as with many children, his own propensity toward being stubborn (and thus unwilling to participate in certain therapeutic movements) hinders him at times. A PT came by to reassess Gideon’s need for therapy as she does every month or so. He had not been stretched by the time she had come for her visit. She remarked that she couldn’t even tell that he had not been stretched! This only serves to prove that Gideon’s mobility has been greatly enhanced by his use of CBD oil.
Finally, another interesting development has occurred. As we have mentioned in previous posts, Gideon has been brining his hands to his mouth more and more as his mobility has increased. Now, over the last week or so during toothbrushing time, he has taken the toothbrush from me and attempted to brush his own teeth. We are so excited! Obviously, his motor skills here are weak. Yet, this is something he used to hate having us do, let alone making the attempt to take the reigns himself. We are so proud. Slowly, but surely, with the help of CBD and dedicated professionals, Gideon is making great strides. We will continue to do everything we can to give him the best chance at a happy and independent life!
If you would like to read my monthly notes, they are below. The notes serve to remind me of those things I want to write about later when I wrap up the month. So, they are often short. Yet, they provide a peek into the life we share with Gideon.
Day 175 (24th): One dose, fell asleep before he could get the second medicine bottle.
Day 176 (25th): Both med bottles!
Day 177 (26th): Seems looser to OT and sat very well for her. Eating well over last few days, except the day he fell asleep early. Both med bottles!
Day 178 (27th): Stander received and set! Did about 20 mins. or so. Both med bottles!
Day 179 (28th): Both med bottles.
Days 180-181 (29-30th): One med bottle.
Day 182 (1st): Two med bottles.
Days 183-185 (2nd-4th): 2 med bottles. On the 4th, PT said she noticed he was looser. Have not tried stander, because Gideon has had a few days where he was moody.
Day 186 (5th): May only have one dose of CBD as waiting for new bottle (CBD). Only had one dose of CBD today. Had both medicine bottles for other meds.
Day 187 (6th): No second medicine bottle and no CBD all day. Seemed less hungry. Not really tight yet, though.
Day 188 (7th): Got 1st med bottle late., he wasn’t hungry. Stander 20 mins. Never really straightened knees. Got 2nd med bottle. Both CBD doses. Seemed a little out of it today, like he was readjusting to CBD again.
Day 189 (8th): May have had both medicine bottles. I did not come back to notate again after several attempts at trying to get him to eat the second medicine bottle. Excited about new developments in working with Gideon. We are hoping to prepare a home school regimen that will work with him (since non-verbal). We are trying to transition him from the bottle with x-cut nipples (too expensive, harder to find, y-cut and self-cut not well-liked by swallow therapists). Going to CNA school for a month beginning at the end of May to become his paid caretaker.
Day 190 (9th): 2 med bottles
Days 191-192 (10-11th): 2 med bottles
Day 193 (12th): 2 med bottles. Tried new OXO straw cup. He did not take to it. We will keep trying.
Day 194 (13th): One med. bottle
Day 195 (14th): One med. bottle.
Day 196 (15th): One med. bottle.
Day 197 (16th): Talkative today. Forgot to add that last week, his PT and OT said he was much looser. They only see trouble when he refuses to do the work and he tries to get around using his left arm and hand. One and a half med. bottles.
Day 198 (17th): 2 med. bottles! Nurse noticed he was looser. She only sees him every month or so.
Day 199 (18th): 1 med. bottle.
Day 200 (19th): 1 med bottle and 90-95% of 2nd. PT that comes every so often to reassess his need for therapy said she couldn’t tell that he had not been stretched today. She had not been here since we increased the dosage of the CBD. She said he seems to be doing well.
Day 201 (20th): 2 med bottles
Day 202 (21st): Lost data due to Windows update issues.
Day 203 (22nd): 2 bottles. Attempted to brush teeth
Day 204 (23rd): Both. Lots of talking
Day 205 (24th): 1 bottle
Day 206 (25th): Both
Day 207 (26th): Both. Tried to brush teeth again.
Day 208 (27th): Both med bottles. Lots of talking.
Thank you for reading! Happy Memorial Day!