Wow, we have been out of touch for a while! Lots of changes have occurred in our lives and we apologize for the absence. We bought our first house and have not completely unpacked yet. The move was about 1.5 hours away from where we were. We are very blessed and very happy. Gideon is closer to all of his doctors as well!
Gideon has had many breakthrough seizures and his meds have been increased. He has new seizure-like symptoms. If you understand how seizures work, what happens seems like he reaches the point just before a seizure (as far as polarization in the brain) and remains there for many minutes. I’m worried that this is actually seizure activity. We will discuss it in a week or so at his follow-up with the neurologist.
The g-tube has helped Gideon gain weight. He has matched his highest weight ever from the past and we hope to surpass it soon. He has had to have a change to his ratio in formula to water. The formula was increased. Gideon has been spitting up quite a bit and has also needed to resume Miralax for constipation. He still does continuous feeds which really upsets him. He would love to have untethered play time.
Gideon has been very frustrated about his disabilities lately. On the positive, the move has brought him some new neighborhood friends.
There is a new behavioral development. Every day around 4-5pm since about April 8th, he gets very upset and screams for a very long time (off and on and can go on for a few hours). It’s difficult to calm him and he has not said that it is pain related. I wonder if the increase in Keppra is the reason. Maybe he needs more B6 for Keppra rage. I’m unsure and will also discuss this with all of his doctors.
Another positive from the move is that Gideon will have much better services. They have not yet begun, but I am hopeful for this new company. Once he is seen by his therapists, I will increase his CBD and THC individually. We have waited many months to move forward with dosage changes. Gideon will be preparing for Kindergarten this year, too. He is getting SO big!
This update may be short and sweet for the time period it is covering, but we ask you to stick with us. Big things are happening soon and these last few months have laid the groundwork. Also, there will be some changes to the notes. From now on, I will only keep notes on the blog that provide some useful information about changes having to do with Gideon’s life.
We hope these last few months have brought you many happy tidings!
Thank you for reading!
Day 97 (Feb. 17th): 2 seizures this AM. One was 1-2 mins. and the other was 2-3mins. No more after meds given. For the last 3-4 days, had a few times where he’d spit up. Had another 1-minute seizure, odd. Could hardly tell. Another, more along normal lines. Idk how long, probably a minute. Realized I’d missed giving him his 2nd dose of Keppra. Gave it to him @ 11:47. Another minute long one right after. If cluster continues, will give another dose. Had what I would call a mini-seizure a few minutes later.
Day 98 (18th): Gave extra dose of Keppra (2 mL) per neuro for helping with breakthrough seizures. Thinks they may result from the RSV still lingering even though he seems to be over the illness. Just after administering the extra dose, he had a 30-1 min. seizure.
Day 99 (19th): Gideon may have had a very short seizure around 11:07. I only saw the end. So, I’m unsure. Sat upright in chair for at least 30-1 hour. Had 3 seizures in a cluster. Gave him same extra 2 mL dose doc approved yesterday. Short seizures, tonic-clonic.
Day 100 (20th): Gideon spit up. Gideon had a seizure around 7:35. Short and tonic-clonic. May have lasted longer as I watched symptoms slowly come on for minutes before (2-3).
Day 101 (21st): Called GI and neuro to update. Not sure if Gideon is catching something new or if RSV lingering or if neither. I know my lymph nodes in my neck are swelling again. Neuro said to increase dosage of Keppra to 3.5 mL twice a day. They may bring it down, because if Gideon is sick, he may not need the increase. He hasn’t felt right today. He’s had no seizures or illness-related symptoms. He just seems to be in pain. I wonder if it is like a seizure hangover from the last few days.
Day 102 (22nd): Very stiff in arms right before 2nd meds. Gideon did a perfect pincer’s grasp in his right hand tonight on purpose, it seemed.
Day 106 (26th): Apparently, Gideon has been refusing exercises simply due to it being me. He’s frustrated with his lack of control and/or just being an almost 5-year-old boy. This all comes from the rehab specialist who saw no negative changes in Gideon’s tone or other related issues. Spit up when attempted standing.
Day 107 (27th): Gideon has indicated that he enjoys reading. So, I read 3 books tonight before bed. I have tried his new bandanas (the bibs, but it’s not polite to call them that for reasons of dignity and age-appropriateness). They are AWESOME! They wash well (I used gentle wash and dry cycles) and they did not bleed (washed a white one with the red and black ones). They soak up wetness incredibly well! I am very pleased. All the g-tube belts we have received are very well made. The only issue for Gideon is his unique trunk shape. The tops of the belts cover the lower portion of his ribs and the bottoms cover his lower stomach area. This makes putting them on to fit well an issue. It may have been a tad easier with the elastic option from one seller, but Gideon is so physically active that I worried that they would get caught on things more easily due the stretch.
Day 109 (Mar. 1st): Gideon ate with his SLP today. He did 2 good bites! Spit up today.
Day 110 (2nd): Spit up today.
Day 111 (3rd): He sat in his Tumbleform chair and tried a decadent chocolate pudding. Unfortunately, the flavor was a little too dark and ruined the experience for him. We will try again another day. Gideon stood very well assisted by me for about 4 mins.
Day 113 (5th): Gideon tried about 8 bites of a decadent vanilla pudding. He was in his Tumbleform. The first 4 had very little spitting and no choking. The last 4 he spat a good deal of it out and he did not choke. Gideon spat up today. He has been communicating with me more again lately!
Day 116 (8th): Meds done by 8, but the plug didn’t stay in and he lost probably half. Great. Gideon did very well eating (using a spoon) with his SLP today, only lost ¼ (use lip smack to signal swallow). Unfortunately, the lost meds seemed to have an effect. He has been acting like a seizure is about to come on for more than 5 minutes. I gave him a full 3.5 mL extra dose of Keppra at 6:22. If happens again (the waves of almost-seizures), give another dose of Keppra per on-call doc. If, after that, it continues past 15-20 mins., give Diastat and call 911 (for the drug itself, as it can cause loss of respiratory function).
Day 119 (11th): Gideon seems to be feeling under the weather. If so, I assume it’s this GI bug going around. I have it right now, too.
Day 121 (13th): Gideon has played very well with his hands and fingers today. He has tried brie cheese and enjoyed it. He threw a toy! It was out of fun and that is new to him.
Day 124 (16th): Started a new ratio of Gideon’s formula-to-water mix for his g-tube. The instructions were given to me from the dietitian. Gideon has almost reached his top weight, but his weight gain has slowed. So, she hopes to spur more weight gain with this new ratio. Pretty sure that Gideon waved “hi” to me from the back of the truck.
Day 132 (24th): Gideon had a breakthrough seizure for about 20 seconds.
Day 133 (25th): Closed on first home! 2 seizures today separated by hours. The last one occurred after his meds we late by an hour or so. Gideon spoke meeting a new friend today very well using the girl’s hands as options for answers.
Day 136 (28th): Almost had a seizure. Put some EOs on him and a full seizure never happened.