"A whole new world
A new fantastic point of view
No one to tell us no
Or where to go
Or say we're only dreaming
A whole new world
A dazzling place I never knew
But when I'm way up here
It's crystal clear
That now I'm in a whole new world with you"
Yes, these are the lyrics in the Disney Aladdin movie. But although these lyrics may be about two lovers, for me they represent how I see Cohen these days. It's a new world in so many ways and a grown up boy accomplishing so much!
It has been over a year since my last blog post. Time continues to fly by in my life, and it's hard to take time to reflect on the past and all of the memories and milestones that have occurred. But it's so incredible to see his progress when I do find the time.
A year ago Cohen had just started at a private preschool. His home therapists wanted to get him started in a school setting and see how he did in preparation for him starting his local preschool placement. He was due for his first IEP meeting. An IEP is an Individualized Education Plan. Most children walk into school, teachers assess them and meet them where they are academically and socially. Kids can need an IEP for a variety of reasons. For Cohen it is something that he qualified for very easily with all of his needs. After much debate and three intense meetings with the school staff at his local preschool, we were finally able to get him in the perfect classroom setting. He would be placed in a preschool primarily centered around teaching children with special needs. The meetings, the fights, the refusal to sign his IEP, on our part, was primarily around his placement. We had toured the state preschool classroom prior to our meetings and thought it was the perfect classroom for Cohen. There were therapists on site at the school and a daily nurse. He would be surrounded by typically developing kids his age as well as children that had some major needs like himself. A few other children in the classroom had feeding tubes which was a definite plus for us. We really wanted Cohen to have friends that were similar to him. Ones that may struggle with the same thing...eating! But the school continued to push back claiming he had missed the birthday cut off for that placement, but they could place him in a special day class. Yes I know that the day may come when Cohen cannot be mainstreamed in a class with typical peers. But for now, he's right where he needs to be and we demanded he be put in the least restrictive environment with the most intensive program possible. So far we have seen nothing but amazing things. He has grown so much as you will read and is starting to come home talking about his favorite new friends.
Here he is on his first day of school with big sis!
Now looking back on the fights we had with the principal, the tears, the endless pushing...we won! Cohen started in his new state preschool classroom in January and it has been nothing but watching him soar. He has had his fair share of illnesses though, most that kept him out of the hospital. Often when he gets a cold, he still manages to hold onto it for a minimum of 2+ weeks. After 5 ear ruptures/infections within a 4 month span, we decided to put in ear tubes again to help. At the same surgery he also had a small surgery for an Orchiopexy to bring down one of his testicles. Both surgeries went well and he recovered easily. He was able to snag a pair of purple hospital gown pants that he now refers to as his "ha ha" pants. Yes, sounds confusing, but he loves old school Batman and Joker cartoons and the Joker character wears that color. He can't yet say "Joker" so "ha ha" refers to his creepy laugh.
This year has been nothing but Cohen racing and soaring to reach his goals. His speech is developing and it's getting easier for others to understand what he says. Last year we were happy to get 1-2 words from him. Now it is not uncommon for you to hear him utter 4 word phrases. They won't be clearly articulated but with a little prompting and repetition, we are having conversations with our boy!
Here is a sampling of things he will say often around the house:
- Mommy ch'rios bowl peese (Mommy cheerios in a bowl please)
- I don like it
- Miss Dylan ( to describe different things he misses, mostly missing Disneyland...those Disney withdrawls are intense)
-Goo Nigh E'body (Good night everybody before bedtime)
-Iya Bean (referring to sister)
Physically, he is running all over the house, with definite help from his AFO (Ankle Foot Orthosis) braces. This past Spring, he was able to join a coed softball league with his big sister and crushed his fellow teammates with his batting average. Cohen is able to hit a ball from an overhanded pitch from Ryan. This is truly amazing to see from such a little man that already struggles with his balance, core strength, and coordination. He may have been half the size of all of his teammates, but he was not afraid to get up there and tackle a sport played with 6 year olds.
His eating has also shown great progress. Last year at this time he was still getting 4 feeds/day and eating sometimes 150 calories. Now there are more days than not where he is eating up to 400 calories/day. We have decreased his feeds to 3 times/day. This has been the biggest accomplishment and relief to Ryan and I. Up until this point, the past 4 years our bedtime has been dictated by his feeding schedule. Because he would need a feed every 4 hours, if the schedule was pushed back for any reason, it would force us to have to stay up late to get his last night feed in while he was asleep. The sense of relief of being able to jump into bed at 8:00pm if we are tired is a foreign feeling to us, but we aren't complaining. Cohen still attends feeding therapy weekly to help him take in more calories, try new textures, and increase his variety of foods. His new favorite foods tend to be not as healthy as before, but very typical for his age. Chicken nuggets, hot dogs, pizza, and ice cream are some of his favorites. All things I'll never say NO to because......HE'S EATING THEM!!!
It is still a daily battle, but something that I don't think is impossible anymore. School has also helped him to see typical peers eating and that food is not the enemy. This Thanksgiving he participated in the entire meal, watching his cousin and aunts and uncles eat....and then joining in the fun! He has also improved by weaning off some of his medications. He is now off both of his reflux meds. This will cut-down on both time giving them to him as well as financial costs!
But with all these amazing accomplishments, 22q sometimes reminds us that it's here to stay. It's not something that lies dormant forever, allowing you to put your guard down. Just when you do, it comes back and bites you in the a#$. On July 25 we were shocked to witness Cohen's first seizure. It was terrible. The longest however many minutes I had to endure using all my strength to hold Cohen up as I pulled him out of the bathtub. He had a stomach bug a few days prior and was not acting himself. Throughout the course of the day he became progressively disoriented. I couldn't scream hard enough to grab Ryan's attention to come into the bathroom. Funny thing, is in the past when I've screamed like that it was to help abandon ship when Cohen had pooped in the tub. Isla saw everything but recovered sooner than we did. After the ambulance ride and lengthy check-up it was determined that it was caused by possible dehydration from his illness. Relief knowing this wouldn't be our new normal was all we wanted to hear.
For a joint birthday gift, we took Cohen and his big sis to Disneyland. Anticipating the right time to take him without having to deal with his medicine and feeding schedule have always been an issue. And there was always the chance he would get really sick. It was a miracle that everyone was well and we couldn't have asked for a more magical first Disney experience. HIs eyes lit up meeting Spiderman, Captain America, and Thor at California Adventure and seeing him squeeze Winnie the Pooh was almost too much to bear. But probably the most magical moment in my eyes was watching my kids at the night parade. He was sitting there experiencing the beauty and magic of Disney free of cords, free of therapists and doctors poking and prodding him. He was in true kid form, holding his Mickey bubble blower and without a care in the world. Happy tears were shed....lots of them. The kids are still missing Disney and talk about it very often.
As an almost 4 year old, Cohen is becoming a typical 4 year old. He's stubborn, headstrong, and very independent. He still requests holding various toys/action figures with him in the house, to the car, and at bedtime....but his anxiety is usually around new experiences/environments and not at home.
And today we celebrate his 4th birthday. I am holding back tears writing those words...happy tears, because every year hat goes by is another year of strength and accomplishment. No one can tell him no or way to go or say he's only dreaming. He may have 22q, but so far it's not stopping him!
A year ago Cohen had just started at a private preschool. His home therapists wanted to get him started in a school setting and see how he did in preparation for him starting his local preschool placement. He was due for his first IEP meeting. An IEP is an Individualized Education Plan. Most children walk into school, teachers assess them and meet them where they are academically and socially. Kids can need an IEP for a variety of reasons. For Cohen it is something that he qualified for very easily with all of his needs. After much debate and three intense meetings with the school staff at his local preschool, we were finally able to get him in the perfect classroom setting. He would be placed in a preschool primarily centered around teaching children with special needs. The meetings, the fights, the refusal to sign his IEP, on our part, was primarily around his placement. We had toured the state preschool classroom prior to our meetings and thought it was the perfect classroom for Cohen. There were therapists on site at the school and a daily nurse. He would be surrounded by typically developing kids his age as well as children that had some major needs like himself. A few other children in the classroom had feeding tubes which was a definite plus for us. We really wanted Cohen to have friends that were similar to him. Ones that may struggle with the same thing...eating! But the school continued to push back claiming he had missed the birthday cut off for that placement, but they could place him in a special day class. Yes I know that the day may come when Cohen cannot be mainstreamed in a class with typical peers. But for now, he's right where he needs to be and we demanded he be put in the least restrictive environment with the most intensive program possible. So far we have seen nothing but amazing things. He has grown so much as you will read and is starting to come home talking about his favorite new friends.
Here he is on his first day of school with big sis!
Now looking back on the fights we had with the principal, the tears, the endless pushing...we won! Cohen started in his new state preschool classroom in January and it has been nothing but watching him soar. He has had his fair share of illnesses though, most that kept him out of the hospital. Often when he gets a cold, he still manages to hold onto it for a minimum of 2+ weeks. After 5 ear ruptures/infections within a 4 month span, we decided to put in ear tubes again to help. At the same surgery he also had a small surgery for an Orchiopexy to bring down one of his testicles. Both surgeries went well and he recovered easily. He was able to snag a pair of purple hospital gown pants that he now refers to as his "ha ha" pants. Yes, sounds confusing, but he loves old school Batman and Joker cartoons and the Joker character wears that color. He can't yet say "Joker" so "ha ha" refers to his creepy laugh.
This year has been nothing but Cohen racing and soaring to reach his goals. His speech is developing and it's getting easier for others to understand what he says. Last year we were happy to get 1-2 words from him. Now it is not uncommon for you to hear him utter 4 word phrases. They won't be clearly articulated but with a little prompting and repetition, we are having conversations with our boy!
Here is a sampling of things he will say often around the house:
- Mommy ch'rios bowl peese (Mommy cheerios in a bowl please)
- I don like it
- Miss Dylan ( to describe different things he misses, mostly missing Disneyland...those Disney withdrawls are intense)
-Goo Nigh E'body (Good night everybody before bedtime)
-Iya Bean (referring to sister)
Physically, he is running all over the house, with definite help from his AFO (Ankle Foot Orthosis) braces. This past Spring, he was able to join a coed softball league with his big sister and crushed his fellow teammates with his batting average. Cohen is able to hit a ball from an overhanded pitch from Ryan. This is truly amazing to see from such a little man that already struggles with his balance, core strength, and coordination. He may have been half the size of all of his teammates, but he was not afraid to get up there and tackle a sport played with 6 year olds.
His eating has also shown great progress. Last year at this time he was still getting 4 feeds/day and eating sometimes 150 calories. Now there are more days than not where he is eating up to 400 calories/day. We have decreased his feeds to 3 times/day. This has been the biggest accomplishment and relief to Ryan and I. Up until this point, the past 4 years our bedtime has been dictated by his feeding schedule. Because he would need a feed every 4 hours, if the schedule was pushed back for any reason, it would force us to have to stay up late to get his last night feed in while he was asleep. The sense of relief of being able to jump into bed at 8:00pm if we are tired is a foreign feeling to us, but we aren't complaining. Cohen still attends feeding therapy weekly to help him take in more calories, try new textures, and increase his variety of foods. His new favorite foods tend to be not as healthy as before, but very typical for his age. Chicken nuggets, hot dogs, pizza, and ice cream are some of his favorites. All things I'll never say NO to because......HE'S EATING THEM!!!
It is still a daily battle, but something that I don't think is impossible anymore. School has also helped him to see typical peers eating and that food is not the enemy. This Thanksgiving he participated in the entire meal, watching his cousin and aunts and uncles eat....and then joining in the fun! He has also improved by weaning off some of his medications. He is now off both of his reflux meds. This will cut-down on both time giving them to him as well as financial costs!
But with all these amazing accomplishments, 22q sometimes reminds us that it's here to stay. It's not something that lies dormant forever, allowing you to put your guard down. Just when you do, it comes back and bites you in the a#$. On July 25 we were shocked to witness Cohen's first seizure. It was terrible. The longest however many minutes I had to endure using all my strength to hold Cohen up as I pulled him out of the bathtub. He had a stomach bug a few days prior and was not acting himself. Throughout the course of the day he became progressively disoriented. I couldn't scream hard enough to grab Ryan's attention to come into the bathroom. Funny thing, is in the past when I've screamed like that it was to help abandon ship when Cohen had pooped in the tub. Isla saw everything but recovered sooner than we did. After the ambulance ride and lengthy check-up it was determined that it was caused by possible dehydration from his illness. Relief knowing this wouldn't be our new normal was all we wanted to hear.
For a joint birthday gift, we took Cohen and his big sis to Disneyland. Anticipating the right time to take him without having to deal with his medicine and feeding schedule have always been an issue. And there was always the chance he would get really sick. It was a miracle that everyone was well and we couldn't have asked for a more magical first Disney experience. HIs eyes lit up meeting Spiderman, Captain America, and Thor at California Adventure and seeing him squeeze Winnie the Pooh was almost too much to bear. But probably the most magical moment in my eyes was watching my kids at the night parade. He was sitting there experiencing the beauty and magic of Disney free of cords, free of therapists and doctors poking and prodding him. He was in true kid form, holding his Mickey bubble blower and without a care in the world. Happy tears were shed....lots of them. The kids are still missing Disney and talk about it very often.
As an almost 4 year old, Cohen is becoming a typical 4 year old. He's stubborn, headstrong, and very independent. He still requests holding various toys/action figures with him in the house, to the car, and at bedtime....but his anxiety is usually around new experiences/environments and not at home.
And today we celebrate his 4th birthday. I am holding back tears writing those words...happy tears, because every year hat goes by is another year of strength and accomplishment. No one can tell him no or way to go or say he's only dreaming. He may have 22q, but so far it's not stopping him!
