Journal entry by Brenda Stanek —
Wow, time sure does fly when things are getting back to "normal"! I apologize for not writing a journal in a few months, But I wanted to write one today to tell you about something that is not anything we could have imagined back in Jan-May. Ender is going to school. 🦸♂️
Telling you that he is going back to school is something I've been hesitant to post about due to shaming and comments regarding Covid-19 and schools. I've seen so much judgement being posted on Facebook I became a bit scared to even tell you about this miraculous achievement that my son is entering.
Since coming home May 7th, lil man has shown so much progress and intellectual gains that even his therapists at Madonna are blown away by how far he's come in so little time.
Physically:
He's assisting with putting on his shorts and putting on his shirt, and he takes off his shirt by himself. He also can take off and put on his glasses. He moves around his living room/bedroom by crawling, scooting, and climbing up and down the couch. While wearing his AFO boots (keep his ankles supported), he can stand on his own for a couple minutes, then while holding his hands, he will walk around! He likes to wrestle, and watching which ways he can turn and crank his body as he holds various positions. His core is increasingly getting stronger each week! We are receiving large wheels for his wheelchair soon and also a walker he can use at school!
Feeding:
He still has a trach and G-Button. He recently had a Swallow Study and was given the okay to do small bites of pureed foods, soft foods, and drinking honey consistency beverages a couple times a day in moderation. He is on a strict keto diet with his daily formula recipe so any foods or drinks we add has to keep to his strict diet. So far, he likes scrambled eggs and any soft meats. He loves sugar free Gatorade (we thicken) and calls it his smoothie. He has no trouble chewing, it's only swallowing. He has to swallow a certain way to be considered 'safe', with his chin down. It took some practice, but he's doing well with it! We continue to work with his speech therapy at Madonna to strengthen his chest and swallowing muscles. We have another swallow study around Christmas.
Coughing/secretions:
Every morning and evening he gets his "Super Vest" (chest percussion therapy) for 10 minutes to knock out any mucus from his chest. It's followed by Cough Assist which blows air into his chest, then sucks out anything the vest knocked out as he coughs. He is strong enough now that he generally coughs up mucus into his trach that forms during the day. We then suck it out with the suction machine or grab it with a Kleenex as he coughs. We barely need to suction him anymore. Since his saliva glands are getting activated with feedings, he does a lot more drooling now. It reminds me of when he was teething as a toddler. It's a nuisance when wearing his mask, as it becomes easily saturated.
Ventilator:
He only wears a ventilator at night while sleeping and sleeps pretty well through the night. We never did receive a night nurse and his dad and I take turns with the night shift. He falls asleep around 9pm and wakes up around 6:30am, longer on the weekends as he enjoys morning snuggles. We have an appointment coming up to talk with his Pulmonologist about doing a sleep study to see if he needs the ventilator at night. It's a process to remove him from the vent. A successful first sleep study will allow him to move down from all night to half the night on the vent. Then after a couple months of successful half nights, they'll do another sleep study to see if he can be removed all night. If that's successful, he'll do a few months of no vent at night before they decide he's okay to be removed completely.
As with the Tracheostomy, it sounds like they want to wait to remove anything until he's gone through a cold and flu season as it's easier to remove things than to put them back in. We are looking at the spring before removing the trach.
Intelligence and speech:
Lil man is blowing our minds with what he remembers from before he got sick. He can read and enjoys it, he can count by 10s, he can remember how to spell most of his 2nd grade sight words, and talks well. He lacks certain conversation skills and needs prompts to tell a story or describe things, but has no trouble once prompted. He can hold a marker for about 15 minutes of coloring and can write his first name. He remembers easy addition and subtraction, but has a bit of trouble with problem solving and keeping attention. With his meds, he tires easily. He's easy to bring back his focus but loses it easily too. You can understand him fairly well as he's getting much better with his speech. He does slur some phonics and gets some sounds backwards but he's come so far...light years ahead of what we thought he would be by this time.
Behavior:
He's such a sweet and happy kid. He's much more outgoing than he's ever been in his life! His inner strength to stay motivated is strong and will keep going on therapy if you ask him but he's also a homebody and likes to stay home to play. Once at a place or outside, he loves it!
With the steroids he's on, we do see some of the darker sides to his personality come out. He lacks patience, becomes aggressive, and says things that he later apologizes for. It's a rollercoaster of emotions when he falls into it and takes sometimes an hour to bring him back. It's getting better each month as we continue to slowly wean off of them and it's usually triggered when he's tired, doesn't want to do something or go somewhere, or gets scared of something. He gets frightened by movies he used to enjoy, like Avengers, Sandlot, and Incredibles, certain sounds, or things that move quickly. He also has sensory issues with conversations around him that don't include him. Some of his mannerisms are that of a 4 year old and most are age appropriate. It's interesting to witness as a guest and takes a ton of patience and thick skin for us as parents. We discipline for bad behavior if he's aware of it, but sometimes he doesn't remember or know why he's upset in the first place. It's a tricky balance to know how to handle the situation and we continue to learn from him each day.
School:
Why did we bring him to school? For starters, we didn't think he'd even be in school at all. Back in March, we didn't know when he'd go back or have school and here we are. Because of his amazing progress, school became a known necessity that his therapists also agreed with.
Why did we decide to take him there instead of trying remote learning? As I've mentioned, his focus takes prompting in person. He doesn't do well with conversations on facetime phone calls and telehealth appts, and we didn't think he would fair well having to watch school online. Also, he hasn't been in school since before Christmas break Dec 2019. He needs socialization. He needs to talk to and see people other than his parents and medical professionals. He loves seeing kids his age and needs to relearn conversation skills and social skills he lost from his brain injury.
But what about Covid-19? To be honest, we feel that the schools are the cleanest now than they ever have been. There's not as many kids now as there were before, everyone is in masks, and they stay in the classrooms for most of the day. Papillion is going to great lengths to keep staff and students safe and we like their approach. Ender is used to wearing a mask and has worn one everyday for months going to appointments and rehab. He also has a skilled nurse with him at all times while at school to ensure safe precautions and medical needs are met. We love her!
After a long school meeting, it was decided to have lil man re-do the 2nd grade. He missed all but 4 days in December and then all of spring. We don't know what he's capable of retaining for new information but we know he remembers all of 1st grade and bits of 2nd grade academics. We started him early in kindergarten so he is age appropriate for 2nd grade again. His IEP (Individualized Educational Program) team is excited to see how he progresses this fall and are ready to make any modifications or changes to his learning goals as needed. He qualifies for Assisted technologies in school such as voice to text instead of hand writing.
Right now everyone is blown away with what he can do and learn. We are A-OK with him going at his own pace. After all, we are still in shock he's even in school after everything he's gone through. He's a miracle!
Thank you for all your continued support of lil man. We wouldn't have made it this far without you! #enderstrength
Have a great week!
Brenda
Telling you that he is going back to school is something I've been hesitant to post about due to shaming and comments regarding Covid-19 and schools. I've seen so much judgement being posted on Facebook I became a bit scared to even tell you about this miraculous achievement that my son is entering.
Since coming home May 7th, lil man has shown so much progress and intellectual gains that even his therapists at Madonna are blown away by how far he's come in so little time.
Physically:
He's assisting with putting on his shorts and putting on his shirt, and he takes off his shirt by himself. He also can take off and put on his glasses. He moves around his living room/bedroom by crawling, scooting, and climbing up and down the couch. While wearing his AFO boots (keep his ankles supported), he can stand on his own for a couple minutes, then while holding his hands, he will walk around! He likes to wrestle, and watching which ways he can turn and crank his body as he holds various positions. His core is increasingly getting stronger each week! We are receiving large wheels for his wheelchair soon and also a walker he can use at school!
Feeding:
He still has a trach and G-Button. He recently had a Swallow Study and was given the okay to do small bites of pureed foods, soft foods, and drinking honey consistency beverages a couple times a day in moderation. He is on a strict keto diet with his daily formula recipe so any foods or drinks we add has to keep to his strict diet. So far, he likes scrambled eggs and any soft meats. He loves sugar free Gatorade (we thicken) and calls it his smoothie. He has no trouble chewing, it's only swallowing. He has to swallow a certain way to be considered 'safe', with his chin down. It took some practice, but he's doing well with it! We continue to work with his speech therapy at Madonna to strengthen his chest and swallowing muscles. We have another swallow study around Christmas.
Coughing/secretions:
Every morning and evening he gets his "Super Vest" (chest percussion therapy) for 10 minutes to knock out any mucus from his chest. It's followed by Cough Assist which blows air into his chest, then sucks out anything the vest knocked out as he coughs. He is strong enough now that he generally coughs up mucus into his trach that forms during the day. We then suck it out with the suction machine or grab it with a Kleenex as he coughs. We barely need to suction him anymore. Since his saliva glands are getting activated with feedings, he does a lot more drooling now. It reminds me of when he was teething as a toddler. It's a nuisance when wearing his mask, as it becomes easily saturated.
Ventilator:
He only wears a ventilator at night while sleeping and sleeps pretty well through the night. We never did receive a night nurse and his dad and I take turns with the night shift. He falls asleep around 9pm and wakes up around 6:30am, longer on the weekends as he enjoys morning snuggles. We have an appointment coming up to talk with his Pulmonologist about doing a sleep study to see if he needs the ventilator at night. It's a process to remove him from the vent. A successful first sleep study will allow him to move down from all night to half the night on the vent. Then after a couple months of successful half nights, they'll do another sleep study to see if he can be removed all night. If that's successful, he'll do a few months of no vent at night before they decide he's okay to be removed completely.
As with the Tracheostomy, it sounds like they want to wait to remove anything until he's gone through a cold and flu season as it's easier to remove things than to put them back in. We are looking at the spring before removing the trach.
Intelligence and speech:
Lil man is blowing our minds with what he remembers from before he got sick. He can read and enjoys it, he can count by 10s, he can remember how to spell most of his 2nd grade sight words, and talks well. He lacks certain conversation skills and needs prompts to tell a story or describe things, but has no trouble once prompted. He can hold a marker for about 15 minutes of coloring and can write his first name. He remembers easy addition and subtraction, but has a bit of trouble with problem solving and keeping attention. With his meds, he tires easily. He's easy to bring back his focus but loses it easily too. You can understand him fairly well as he's getting much better with his speech. He does slur some phonics and gets some sounds backwards but he's come so far...light years ahead of what we thought he would be by this time.
Behavior:
He's such a sweet and happy kid. He's much more outgoing than he's ever been in his life! His inner strength to stay motivated is strong and will keep going on therapy if you ask him but he's also a homebody and likes to stay home to play. Once at a place or outside, he loves it!
With the steroids he's on, we do see some of the darker sides to his personality come out. He lacks patience, becomes aggressive, and says things that he later apologizes for. It's a rollercoaster of emotions when he falls into it and takes sometimes an hour to bring him back. It's getting better each month as we continue to slowly wean off of them and it's usually triggered when he's tired, doesn't want to do something or go somewhere, or gets scared of something. He gets frightened by movies he used to enjoy, like Avengers, Sandlot, and Incredibles, certain sounds, or things that move quickly. He also has sensory issues with conversations around him that don't include him. Some of his mannerisms are that of a 4 year old and most are age appropriate. It's interesting to witness as a guest and takes a ton of patience and thick skin for us as parents. We discipline for bad behavior if he's aware of it, but sometimes he doesn't remember or know why he's upset in the first place. It's a tricky balance to know how to handle the situation and we continue to learn from him each day.
School:
Why did we bring him to school? For starters, we didn't think he'd even be in school at all. Back in March, we didn't know when he'd go back or have school and here we are. Because of his amazing progress, school became a known necessity that his therapists also agreed with.
Why did we decide to take him there instead of trying remote learning? As I've mentioned, his focus takes prompting in person. He doesn't do well with conversations on facetime phone calls and telehealth appts, and we didn't think he would fair well having to watch school online. Also, he hasn't been in school since before Christmas break Dec 2019. He needs socialization. He needs to talk to and see people other than his parents and medical professionals. He loves seeing kids his age and needs to relearn conversation skills and social skills he lost from his brain injury.
But what about Covid-19? To be honest, we feel that the schools are the cleanest now than they ever have been. There's not as many kids now as there were before, everyone is in masks, and they stay in the classrooms for most of the day. Papillion is going to great lengths to keep staff and students safe and we like their approach. Ender is used to wearing a mask and has worn one everyday for months going to appointments and rehab. He also has a skilled nurse with him at all times while at school to ensure safe precautions and medical needs are met. We love her!
After a long school meeting, it was decided to have lil man re-do the 2nd grade. He missed all but 4 days in December and then all of spring. We don't know what he's capable of retaining for new information but we know he remembers all of 1st grade and bits of 2nd grade academics. We started him early in kindergarten so he is age appropriate for 2nd grade again. His IEP (Individualized Educational Program) team is excited to see how he progresses this fall and are ready to make any modifications or changes to his learning goals as needed. He qualifies for Assisted technologies in school such as voice to text instead of hand writing.
Right now everyone is blown away with what he can do and learn. We are A-OK with him going at his own pace. After all, we are still in shock he's even in school after everything he's gone through. He's a miracle!
Thank you for all your continued support of lil man. We wouldn't have made it this far without you! #enderstrength
Have a great week!
Brenda
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