Wow...how did August sneak up so soon?
Jace has had two successful intensive sessions already this year. Finally, after a two year struggle with insurance approval from Washington State, we finally got the approval we needed to order Jace's Hart Walker. It was not enough that he was able to walk outside...he had to prove his skills by submitting a video at home, showing clearly he could walk indoors. Turns out he is the typical 5 year old who does what you are asking when you are not looking...good thing I left that camcorder filming while I disappeared into the kitchen, hoping he would take the necessary steps. I wonder what else he does while I am not looking.
Other news: Jace is eating much better and no longer aspirates when he swallows food. This will allow the school to work with him on his feeding skills...yippee!
Changes: This was the end of our preschool adventures and I was very lucky to not only have a team who went beyond and above for Jace, they thought outside the box so to speak. His amazing teacher would not take no for an answer when seeking out to try the Ipad for communication skills...and so she obtained private funding to get him one...hopefully, we can get him one for home as he was very successful with it and his future teacher is already looking into it for part of his classroom needs. The best part of the preschool team was their fight to wait for finalizing his IEP so that his future team could meet with the current team and talk goals and get to know Jace.
Since we received the fantastic news about Jace's hart walker at the beginning of his most recent intensive session, we were able to focus on other skills...like crawling. Two years ago, he would cry and fuss at being on his tummy, and now he is determined to go somewhere. Intensive is by far the best thing I have done for him...its helped him become more tolerant of his surroundings, its decreased his sensitivity to certain sounds like ripping velcro (used to make him come unglued)! Always a happy little boy, he is even more so today than a few years ago.
Often people ask me where I see him ending up...I think its up to him, he's determined, he understands what he is told...example, we often have to ask him to calm his body down...he stops and becomes still, a difficult feat for him but he can slow down and focus. Never say never...no one knows what the future holds.
For over two years, I have had him off any medications for reflux as he's had two surgeries that were supposed to prevent him being able to
"As a parent of a child with special needs we need to enjoy our kids for who they are not for who they could have been"
October 4, 2011
October 3, 2011
Early Halloween Fun!
So many times I think we get wrapped up in milestones, doctor and therapy appointments and forget that this is a child who needs to experience what childhood should be. Just like scrapbooking, these memories need to be cherished and treasured...
Jace's older sister happened to come home from college this past weekend, along with a cousin who came into town at the same time. Since it was the first of October, I thought why not experience a hayride and pumpkin picking early in the season. So we visited BiZi farms, and Jace fed goats, talked to a donkey, giggled at pigs and loved the hayride. It was great to see him have so much fun outside with the bonus of cooperative weather. It was a great day to have all of the kids together...
September 22, 2011
Assistive Technology...
What a great day Jace has had...at school this week, he identified with 100 percent accuracy patterns of apples and leafs. He is impressing his teachers! Proud mom!
He has continued to gain weight and finally have satisfied and come to agreement that despite where he falls on the charts, I am no longer under pressure to push weight gain. He has some chunk...but realistically, he is never going to be in the 50 percentile for weight...feeling like the pressure is finally off and we can start learning how to properly introduce some blended foods into his diet.
Great and exciting news! We received a referral for assistive technology and based on the outcome will probably be able to get Jace either an ipad or some switches at home depending on what is recommended. Yay!
Possibly promising news, is we are going to attend a positioning clinic and hope to find a way to get Jace into a better wheelchair...the bad news is we might be stuck due to insurance and the recentness of the chair that insurance paid for...donations and creativity are always possibilities so we continue to have hope...as always...
He has continued to gain weight and finally have satisfied and come to agreement that despite where he falls on the charts, I am no longer under pressure to push weight gain. He has some chunk...but realistically, he is never going to be in the 50 percentile for weight...feeling like the pressure is finally off and we can start learning how to properly introduce some blended foods into his diet.
Great and exciting news! We received a referral for assistive technology and based on the outcome will probably be able to get Jace either an ipad or some switches at home depending on what is recommended. Yay!
Possibly promising news, is we are going to attend a positioning clinic and hope to find a way to get Jace into a better wheelchair...the bad news is we might be stuck due to insurance and the recentness of the chair that insurance paid for...donations and creativity are always possibilities so we continue to have hope...as always...
"Perseverance is not a long race. It is many short races one after another."
September 21, 2011
Catching up!
It's been a while since our last blog...so much news to report!
Jace finally obtained his own hart walker...turns out if I leave the room with the camcorder capturing the moments, he will take the necessary steps that insurance wanted to see...he is now practically running his first few steps in it...spending nearly an hour a day in it at school.
More great news: he has improved so much with his swallowing abilities that he no longer is at risk for silent aspiration and is being fed daily at school, this is a huge improvement! We are very thankful to our OT who weekly came to my home and worked the skills with me. Thanks WJ!The biggest news and change for Jace is that he started Kindergarten this fall and loves it so much, he almost gives me a dirty look when I show up to take him home. He is continuing to impress all teachers, therapists and staff.
December 28, 2010
Enjoying food!
Jace just enjoyed an entire Cheetos puff, which he nearly bit off my finger to finish the last bite! Normally, I give this to him on the sides of his cheeks, about half a puff to give him a taste of something yummy. Well, also to work on his continuous eating skills. Since he is dependent on his calories coming from a gtube, he really does not get to "taste" a variety of foods. Though, we work on it, with the help of an OT that has provided us valuable insight on feeding techniques to keep him interested and progressing. Most of the time he samples foods with rice cereal, pear flavorings, he loves mango and yogurt. He barely consumes more than 1/4 of a cup a day, but I am hoping to increase and raise the bar on what he can tolerate. Recently, he was introduced to the squeeze it bottle, which will help prepare him for drinking from a straw. He seems to prefer water but I am attempting to give him his pediasure through it as well. We also attempted feeding him oatmeal, which I may try again as I can't remember how it went. I do know, that brown rice cereal was spit out quicker than it went in. So, we continue his adventures with food...stay tuned. :)
December 10, 2010
So much catching up to do!
Over the last two months, there has been so much to report...it's all good!
In October, we learned that Jace is starting to become more vocal, beyond his use of "mom". He has actually mastered the use of the word "no" appropriately...sure, that's the word we're excited about. He has the most amazing team working with him and for him. He has also started to use the word "boo" when engaged in "peek-a-boo" and "more", and recently added "loves", which is what I call his hugs. I have picked up on interaction between certain cartoons, in which he is reacting to the show vocally, as if he was watching a great football game. It's quite entertaining to listen to. He's also really picked up the use of his peripheral vision...which you will notice even in his recent school picture (coming shortly).There is so much more going on with him at school and I am most excited about his newest communication devices. He is using a computer and possibly an ipad to help with communication. His teachers also made for him a yes/no card with vision cues which he purposely hits yes or no when asked a yes or no question. It's all very exciting and his progress is just starting to take off suddenly.
In November, Jace attended his 2nd intensive therapy session. His walking progress was steady and he is getting it. A change for him in his hart walker was being in his therasuit which gave him more input than before. Still, for a 4 year old, he handled a full 5 hours a day, 5 days a week for 3 weeks of intensive therapy and made it all look easy...with more smiles and giggles than you would expect of that kind of workout. His final week brought exciting new things to the table. He walked to me, about 3 feet. The one day I did not have a camcorder and did not expect it. I will never forget giving him the proudest hug for his accomplishment that day and the reassurance that with hard work anything is possible. Afterwards, his PT put him on the treadmill, not an easy thing to do with a floppy four year old. Picture it, me behind Jace, trying to steady his body, while he is connected all over with bungees and trying to maintain his excitement as he indeed decided he should try to jump up and down. It was wonderful to watch him during this, but a lot of work for all involved. After all week of hearing us to tell him "no jumping", we put him in "spider". "Spider" is a cage like cube that he is again strapped in everywhere but allowed to jump and he stood there as if he was not allowed to do anything but stand. I am sure it was confusing after hearing "no" all week long to his inclination to jump on the treadmill.
Other news, we were able to score even more physical therapy. Jace will begin weekly sessions at the same facility where he attends intensive sessions to help him keep up on skills and will also receive 3 intensive sessions next year. This is great, I have wanted more PT for him and I am starting to see gradual progress.
Milestones: Jace has been flipping himself over onto his tummy every chance he gets at home. His goal: more tummy time! He continually flips over his right shoulder so we are working on trying to get the left shoulder to cooperate. Yesterday, he flipped over from tummy to back and over his left shoulder! Two goals with one flip...thrilling to watch! This evening, he also positioned his arm over my shoulder while we sat on the couch. He studies his arm for a good two minutes, and gradually pulled his arm closer and closer until he got his thumb right into his mouth. I am in awe, he sucked on his thumb, purposefully. Evidently, it did not taste too well because after about 30 seconds he pulled it out and looked at it and than put his arm down. He is really starting to calm his body down to focus on things he wants to do...
Scary news: Jace went into a gait trainer, "kidwalk" and was working with me on moving his feet forward, when the bicycle seat came out from beneath him, while he slid through the double body support system. Safe to say that Jace defies any standard safety measures...
Here is info about this product:
http://www.southwestmedical.com/products/KidWalk-Gait-Mobility-System-23365.htmlKid Walk is an innovative pediatric dynamic mobility system that affords freedom of exploration while safely supporting the user. Unlike a gait trainer, the Kid Walk has a large mid-wheel configuration that encourages upper-body rotation over the pelvis while allowing upper-extremity freedom. The dynamic action allows lateral weight shift and simulates a natural gait pattern. KidWalk positioning options provide various levels of support to accommodate maximum freedom in upper extremity movement.
The various wheel configuration and small turning radius allows exceptional maneuverability. This is key in affording a child access not only to their home and school environments, but, encourages exploration that has been proven to enhance their cognitive and social development.
Tool-free adjust ability is quick exact and easy making Kid Walk ideal for schools and institutions. Easy to use, one hand height adjustment mechanism allows quick positive adjustments while the child is in the unit. All positioning options swing away to allow easy placement and positioning of user.
Allows therapeutic adjustment for use in ambulation and therapy oriented activities. Seat and support system move with the client allowing the natural movement of the body while reducing weight and fatigue.
I am thinking that if the adjustments are right, this wouldn't happen again but think he is better supported in the hart walker at this time.
In October, we learned that Jace is starting to become more vocal, beyond his use of "mom". He has actually mastered the use of the word "no" appropriately...sure, that's the word we're excited about. He has the most amazing team working with him and for him. He has also started to use the word "boo" when engaged in "peek-a-boo" and "more", and recently added "loves", which is what I call his hugs. I have picked up on interaction between certain cartoons, in which he is reacting to the show vocally, as if he was watching a great football game. It's quite entertaining to listen to. He's also really picked up the use of his peripheral vision...which you will notice even in his recent school picture (coming shortly).There is so much more going on with him at school and I am most excited about his newest communication devices. He is using a computer and possibly an ipad to help with communication. His teachers also made for him a yes/no card with vision cues which he purposely hits yes or no when asked a yes or no question. It's all very exciting and his progress is just starting to take off suddenly.
Other news, we were able to score even more physical therapy. Jace will begin weekly sessions at the same facility where he attends intensive sessions to help him keep up on skills and will also receive 3 intensive sessions next year. This is great, I have wanted more PT for him and I am starting to see gradual progress.
Milestones: Jace has been flipping himself over onto his tummy every chance he gets at home. His goal: more tummy time! He continually flips over his right shoulder so we are working on trying to get the left shoulder to cooperate. Yesterday, he flipped over from tummy to back and over his left shoulder! Two goals with one flip...thrilling to watch! This evening, he also positioned his arm over my shoulder while we sat on the couch. He studies his arm for a good two minutes, and gradually pulled his arm closer and closer until he got his thumb right into his mouth. I am in awe, he sucked on his thumb, purposefully. Evidently, it did not taste too well because after about 30 seconds he pulled it out and looked at it and than put his arm down. He is really starting to calm his body down to focus on things he wants to do...
Scary news: Jace went into a gait trainer, "kidwalk" and was working with me on moving his feet forward, when the bicycle seat came out from beneath him, while he slid through the double body support system. Safe to say that Jace defies any standard safety measures...
Here is info about this product:
http://www.southwestmedical.com/products/KidWalk-Gait-Mobility-System-23365.htmlKid Walk is an innovative pediatric dynamic mobility system that affords freedom of exploration while safely supporting the user. Unlike a gait trainer, the Kid Walk has a large mid-wheel configuration that encourages upper-body rotation over the pelvis while allowing upper-extremity freedom. The dynamic action allows lateral weight shift and simulates a natural gait pattern. KidWalk positioning options provide various levels of support to accommodate maximum freedom in upper extremity movement.
The various wheel configuration and small turning radius allows exceptional maneuverability. This is key in affording a child access not only to their home and school environments, but, encourages exploration that has been proven to enhance their cognitive and social development.
Tool-free adjust ability is quick exact and easy making Kid Walk ideal for schools and institutions. Easy to use, one hand height adjustment mechanism allows quick positive adjustments while the child is in the unit. All positioning options swing away to allow easy placement and positioning of user.
Allows therapeutic adjustment for use in ambulation and therapy oriented activities. Seat and support system move with the client allowing the natural movement of the body while reducing weight and fatigue.
I am thinking that if the adjustments are right, this wouldn't happen again but think he is better supported in the hart walker at this time.
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