Friday, December 20, 2013
Sunday, December 15, 2013
Updates
Such a poor, neglected blog! Yet, I think of it everyday. Everyday as I'm juggling care of Roa and Gunnar. Making sure both of their needs are being met. Breathing deep that I am "doing my best" keeping up with the boys, the housework, the laundry, the appointment schedules. Also, using my limited "me time" to write for EasyStand blog. So please, Check me out there! Become a fan of EasyStand. Rojo's Journey blog doesn't pay and EasyStand does. The choice in the money-sucking Land of CP is an obvious one.
So todays blog is an overdue post of updates:
1) Roa's powerchair is in and will be delivered to the school this Thursday. The great staff of Handi Medical will give us a detailed course of demos, how-to's, and what's that's. We are very excited to give Roa ample time to play around with his new Permobil at the Early Childhood setting so that come Kindergarten, he will literally be on a roll!
2) Our house is beginning to be built! The frigid temps here are making it slow going but the foundation should be complete this week! We have been busy with appointments settling details of electrical outings, lighting fixtures, cabinets,.... etc.
3) Roa continues to break from other traditional therapies outside of school based Sp/L, OT, and PT as we focus on his MNRI(Masgutova Method) home program. We have Lori Burgess, certified MNRI therapist coming twice per week to our tiny townhouse for direct therapy.
4) Roa is mimicking more speech sounds, phrases and words. These come easiest during play with mom and Gunnar at home. Exciting communication with phrases like, "Gun, whereareyou?", "Hello, my Roa" (with his play phone) "etsgoout".
*** I type these all together because it is slurred soft speech YET speech non the less!
5)Roa did another trial at school this time, with the Dynavox Maestro with eye gaze. Once again, pretty exciting to have him look at photos that "speak for him". Details to follow as I haven't discussed the therapist's opinion on the outcome of the trial.
6) Trials with the Ormesa Grillo gait trainer are occurring currently! This GT is pretty cool- heightens and lowers for sit to stand effect, lighter weight, ALL TERRAIN wheels!! We can't wait to get that ordered and moving!
7) Crawling to the chair or couch, with support, and pulling up to stand or climb is a favorite lately. However, he is heavy and still coordinating those lanky arms and legs!! We battle on!
8) Roa is FINALLLLLY accepted for Medical Assistance through the TEFRA program with parental fee we have to pay monthly. It took many months of being passed around from worker to program to county to state, but we finally think we got a responsible fee and some form of support. Roa's physical needs qualify for 10 HOURS PER DAY of PCA/respite time funded through the TEFRA program! Wow! Yet his cognitive abilities will not allow for a Developmental Disabilities Coordinator/Case manager. Crazy government rules!!!! So we sort, call, wait, and move through the maze as best we can as parents of the smart, but immobile King Rojo.
That is all for now! Gotta run and blog for EasyStand before the boys and Daddy return from an outing! Thanks for "listening"! Jen
So todays blog is an overdue post of updates:
1) Roa's powerchair is in and will be delivered to the school this Thursday. The great staff of Handi Medical will give us a detailed course of demos, how-to's, and what's that's. We are very excited to give Roa ample time to play around with his new Permobil at the Early Childhood setting so that come Kindergarten, he will literally be on a roll!
2) Our house is beginning to be built! The frigid temps here are making it slow going but the foundation should be complete this week! We have been busy with appointments settling details of electrical outings, lighting fixtures, cabinets,.... etc.
3) Roa continues to break from other traditional therapies outside of school based Sp/L, OT, and PT as we focus on his MNRI(Masgutova Method) home program. We have Lori Burgess, certified MNRI therapist coming twice per week to our tiny townhouse for direct therapy.
4) Roa is mimicking more speech sounds, phrases and words. These come easiest during play with mom and Gunnar at home. Exciting communication with phrases like, "Gun, whereareyou?", "Hello, my Roa" (with his play phone) "etsgoout".
*** I type these all together because it is slurred soft speech YET speech non the less!
5)Roa did another trial at school this time, with the Dynavox Maestro with eye gaze. Once again, pretty exciting to have him look at photos that "speak for him". Details to follow as I haven't discussed the therapist's opinion on the outcome of the trial.
6) Trials with the Ormesa Grillo gait trainer are occurring currently! This GT is pretty cool- heightens and lowers for sit to stand effect, lighter weight, ALL TERRAIN wheels!! We can't wait to get that ordered and moving!
7) Crawling to the chair or couch, with support, and pulling up to stand or climb is a favorite lately. However, he is heavy and still coordinating those lanky arms and legs!! We battle on!
8) Roa is FINALLLLLY accepted for Medical Assistance through the TEFRA program with parental fee we have to pay monthly. It took many months of being passed around from worker to program to county to state, but we finally think we got a responsible fee and some form of support. Roa's physical needs qualify for 10 HOURS PER DAY of PCA/respite time funded through the TEFRA program! Wow! Yet his cognitive abilities will not allow for a Developmental Disabilities Coordinator/Case manager. Crazy government rules!!!! So we sort, call, wait, and move through the maze as best we can as parents of the smart, but immobile King Rojo.
That is all for now! Gotta run and blog for EasyStand before the boys and Daddy return from an outing! Thanks for "listening"! Jen
Wednesday, October 16, 2013
Friday, September 20, 2013
EasyStand blog post and Update!
http://blog.easystand.com/2013/09/many-therapies-for-cerebral-palsy/
Wednesday, July 31, 2013
Monday, July 29, 2013
Magustova Magic
Roa, Mom, and Dad attended The Masgutova Neurosensorimotor Reflex Integration camp ( MNRI) just minutes away from our home in Bloomington, MN.
What is this, you ask?
Per the website,
"Fundamental to the MNRI Method is the understanding that automatic primary motor reflex patterns do not disappear, they integrate. While most people in the general health and wellness community are quite familiar with primary motor reflex patterns, they generally view the patterns as developmental milestones. In the course of working with a patient, if primary motor reflex patterns are found active beyond the expected or typical developmental time period, the presence of the pattern is viewed as an indication that underlying developmental or neurological issues may exist. Within the framework of the MNRI Method, primary motor reflex patterns play a much larger role. First, it is important to understand that reflexes do not function in complete isolation of one another. Primary motor reflex patterns, in particular, play a subordinate role in the maturation of more complex motor reflex schemes (i.e., rolling over, sitting up, crawling, etc.) Once a primary reflex pattern fully matures during the typical developmental period, it integrates to serve this subordinate role. A dysfunctional pattern results either because it did not mature and integrate in the first place or because it has re-surfaced at some point after integration. In other words, a dysfunctional primary reflex pattern is not simply an indictor of potential neurological dysfunction, but actually helps to identify where underlying neurosensorimotor dysfunction exists in the body. The MNRI Method isolates reflex dysfunction, engages restorative techniques targeting underlying neurosensorimotor dysfunction, and works toward facilitating the integration process, resulting in improvements and sometimes even complete recovery of general function."
RoJo struggles with many primitive reflexive patterns. They are correctly firing reflexes (which is good) yet they are not integrating. Thus, Roa has difficulty rolling over, reaching toys in midline, sitting, eating, etc....
Since the camp, Roa has begun to flip over to his belly from his back! This rolling pattern is huge in our life! Especially arm-righting! He remains on his tummy to lay and watch TV or reach out to toys. He is just more solid in his trunk and maintains belly time play for longer with head control. He has also opened, grabbed and gotten food off the plate and into his mouth with minimal assistance! WOW! Great things happening with MNRI!
Since the camp, our life has changed as we are embark on an individualized program designed by Dr. Svetlana Masgutova, herself. For about 3 1/2- 5 hours per day (spread out from wake to sleep), we work on reflex exercises. Roa is accepting them so well!
We have taken a break from other therapies so that we can focus on this. We feel that strongly about the progress we are seeing and the peaceful, body-alerting response we are getting from King Roa, himself.
It is very encouraging and gives us such great hope that Roa can battle through the brain injury that affects his every move. Thank you Dr. Masgutova and your team for an eye-opening experience we needed so much!
What is this, you ask?
Per the website,
"Fundamental to the MNRI Method is the understanding that automatic primary motor reflex patterns do not disappear, they integrate. While most people in the general health and wellness community are quite familiar with primary motor reflex patterns, they generally view the patterns as developmental milestones. In the course of working with a patient, if primary motor reflex patterns are found active beyond the expected or typical developmental time period, the presence of the pattern is viewed as an indication that underlying developmental or neurological issues may exist. Within the framework of the MNRI Method, primary motor reflex patterns play a much larger role. First, it is important to understand that reflexes do not function in complete isolation of one another. Primary motor reflex patterns, in particular, play a subordinate role in the maturation of more complex motor reflex schemes (i.e., rolling over, sitting up, crawling, etc.) Once a primary reflex pattern fully matures during the typical developmental period, it integrates to serve this subordinate role. A dysfunctional pattern results either because it did not mature and integrate in the first place or because it has re-surfaced at some point after integration. In other words, a dysfunctional primary reflex pattern is not simply an indictor of potential neurological dysfunction, but actually helps to identify where underlying neurosensorimotor dysfunction exists in the body. The MNRI Method isolates reflex dysfunction, engages restorative techniques targeting underlying neurosensorimotor dysfunction, and works toward facilitating the integration process, resulting in improvements and sometimes even complete recovery of general function."
RoJo struggles with many primitive reflexive patterns. They are correctly firing reflexes (which is good) yet they are not integrating. Thus, Roa has difficulty rolling over, reaching toys in midline, sitting, eating, etc....
Since the camp, Roa has begun to flip over to his belly from his back! This rolling pattern is huge in our life! Especially arm-righting! He remains on his tummy to lay and watch TV or reach out to toys. He is just more solid in his trunk and maintains belly time play for longer with head control. He has also opened, grabbed and gotten food off the plate and into his mouth with minimal assistance! WOW! Great things happening with MNRI!
Since the camp, our life has changed as we are embark on an individualized program designed by Dr. Svetlana Masgutova, herself. For about 3 1/2- 5 hours per day (spread out from wake to sleep), we work on reflex exercises. Roa is accepting them so well!
We have taken a break from other therapies so that we can focus on this. We feel that strongly about the progress we are seeing and the peaceful, body-alerting response we are getting from King Roa, himself.
It is very encouraging and gives us such great hope that Roa can battle through the brain injury that affects his every move. Thank you Dr. Masgutova and your team for an eye-opening experience we needed so much!
Blogger Mom
Rojo's Journey has taken a backseat lately as I have started blogging for EasyStand! Check out my blog posts at
http://blog.easystand.com/
I write about our life experiences in CP land, similar as I do here. Enjoy and thanks for following me!
http://blog.easystand.com/
I write about our life experiences in CP land, similar as I do here. Enjoy and thanks for following me!
Sunday, July 14, 2013
Tuesday, June 25, 2013
Blow the Man Down
Yesterday was Roa's birthday. He had a super busy day of preschool in the morning with cupcakes and song. Followed by speech and OT in the afternoon with snacks and song. He was beat after his big day and we had naptime followed by dinner and playtime with Daddy and then,... the much anticipated presents and Birthday Brownies.
When presented with the candle-lit treat, Roa was so pumped up. We sang the song, mom took some pictures, and Gunnar helped blow out a few of the candles. Daddy, not giving up on the Birthday boy, kept prompting that blow and POOOOF. Out went a candle!
To many of us, blowing out a candle is no big deal. Alot of people wouldn't even think of the fact that this very task is hard work- a combination of mouth and lip muscle control, paired with abdominal and lung strength to exhale, head control to aim and put that fire out.
Roa did it.
Not on his first, second, third, or fourth birthday... but this one- number 5!
We have waited, practiced, therapeutically approached this very task for years.
He did it.
One of the many things to come for our Hero Roa. One more thing to check off the developmental list that grows with each birthday, but one more check, none the less.
Blow away, lil champ! Blow them all away!
When presented with the candle-lit treat, Roa was so pumped up. We sang the song, mom took some pictures, and Gunnar helped blow out a few of the candles. Daddy, not giving up on the Birthday boy, kept prompting that blow and POOOOF. Out went a candle!
To many of us, blowing out a candle is no big deal. Alot of people wouldn't even think of the fact that this very task is hard work- a combination of mouth and lip muscle control, paired with abdominal and lung strength to exhale, head control to aim and put that fire out.
Roa did it.
Not on his first, second, third, or fourth birthday... but this one- number 5!
We have waited, practiced, therapeutically approached this very task for years.
He did it.
One of the many things to come for our Hero Roa. One more thing to check off the developmental list that grows with each birthday, but one more check, none the less.
Blow away, lil champ! Blow them all away!
Monday, June 24, 2013
Friday, June 21, 2013
Update, Thank You for your Patience!
So many changes. So much news.
As I sit down to blog with my cup of coffee and a quiet house around me, I breathe a deep breath.
Hello, old friend!
The Thayers have sold our home, survived closing, packed, and moved into a townhouse rental. We will be here for around six months as we wait for our new home to be built. Handicap accessible. A home for Roa where he can move around in his gait trainer, wheelchair, etc., with some independence. A new home where the yard is flat, the garage fits a wheelchair van, and the only stairs lead to the basement for storage. It will be grand.
Our rental is nice. Still a two-story with bedrooms up, but we can swing it. The beauty of this unit is that it accepts pets, does short term leasing, and has a playground and pool right off our patio! The kids are in heaven! I worried about the action, but it is pretty quiet and people are friendly. We are also on a nature preserve which includes part of Birch Lake. There are woodsy, marshy walking paths and boats on the lake. Peaceful and inviting. Just what we needed, a sort of get-away.
Which leads to my next subject... our Beasty cat, liking her outdoor time, was let out in the night and enjoyed her frolics. However, she has not returned for over a week! ;( We have called vets, animal control, told townhouse staff and neighbors, but we wait.
Roa loves the pool! It's so good for him. School has ended and he has begun his summer therapy sessions which include~ Occupational Therapy, Speech, Physical Therapy, Music Therapy, and Preschool. The end of the school year was a flurry of packing and moving so finding a new PCA was not on the top of my To-Do list, but God has a plan and Lindsay entered our lives!
Laura, Roa's amazing Phyical Therapist, had a student shadowing her and asked if she would be interested in PCA work. Lindsay is a true gem! So open to learning about Roa, helping our family, partaking in Preschool and therapies. We are truly blessed to have her this summer. Roa and Gunnar, both love her! Welcome, Lindsay to Team Roa!
Roa had his Gillette visit to check his Botox-phenol progress and we left with smashing reviews! Dr. Gormley is impressed with Roa's muscle tone changes, his increased trunk control, and flexibility. A hip x-ray was performed and showed that Roa's hips are that of a typically developing child. This is HUGE in the Land of CP! (picture cartwheeling momma here!) We pat ourselves on the back for this, as we keep Roa so active and moving that hip issues, so common in CP, just can't affect him.
We continue to wait for his powerchair order. Wait for insurance kinks and our application for TEFRA (fee-based Medical Assistance) to pass the County. So we wait on the vehicle as well. We will do a new trial with a few different walkers to see which one gives Roa the support he needs to keep cruising.
This summer we also await Roa's Masgutova Method 5-day camp in July and continued Hippotherapy in August.
On another positive note, Roa's fundraiser was a big success! So many giving friends, family and even caring strangers! We feel so fortunate to have the love of Karl, Vickie, Travis, and others who helped make it all happen and run smoothly! A much overdue THANK YOU is coming, but consider this blog a BIG HUG from Rojo! The funds raised will help with to costs of a wheelchair van and powerchair copay.
I'm so happy to give you another glimpse of our life. I LOVE those of you who comment, contact me via email or facebook and show you care. This is a tough battle everyday and it helps to know we have people out there praying for us and keeping the faith.
Rojo will continue to do great things. Keep watching, reading, and you will be a part of the magic!
As I sit down to blog with my cup of coffee and a quiet house around me, I breathe a deep breath.
Hello, old friend!
The Thayers have sold our home, survived closing, packed, and moved into a townhouse rental. We will be here for around six months as we wait for our new home to be built. Handicap accessible. A home for Roa where he can move around in his gait trainer, wheelchair, etc., with some independence. A new home where the yard is flat, the garage fits a wheelchair van, and the only stairs lead to the basement for storage. It will be grand.
Our rental is nice. Still a two-story with bedrooms up, but we can swing it. The beauty of this unit is that it accepts pets, does short term leasing, and has a playground and pool right off our patio! The kids are in heaven! I worried about the action, but it is pretty quiet and people are friendly. We are also on a nature preserve which includes part of Birch Lake. There are woodsy, marshy walking paths and boats on the lake. Peaceful and inviting. Just what we needed, a sort of get-away.
Which leads to my next subject... our Beasty cat, liking her outdoor time, was let out in the night and enjoyed her frolics. However, she has not returned for over a week! ;( We have called vets, animal control, told townhouse staff and neighbors, but we wait.
Roa loves the pool! It's so good for him. School has ended and he has begun his summer therapy sessions which include~ Occupational Therapy, Speech, Physical Therapy, Music Therapy, and Preschool. The end of the school year was a flurry of packing and moving so finding a new PCA was not on the top of my To-Do list, but God has a plan and Lindsay entered our lives!
Laura, Roa's amazing Phyical Therapist, had a student shadowing her and asked if she would be interested in PCA work. Lindsay is a true gem! So open to learning about Roa, helping our family, partaking in Preschool and therapies. We are truly blessed to have her this summer. Roa and Gunnar, both love her! Welcome, Lindsay to Team Roa!
Roa had his Gillette visit to check his Botox-phenol progress and we left with smashing reviews! Dr. Gormley is impressed with Roa's muscle tone changes, his increased trunk control, and flexibility. A hip x-ray was performed and showed that Roa's hips are that of a typically developing child. This is HUGE in the Land of CP! (picture cartwheeling momma here!) We pat ourselves on the back for this, as we keep Roa so active and moving that hip issues, so common in CP, just can't affect him.
We continue to wait for his powerchair order. Wait for insurance kinks and our application for TEFRA (fee-based Medical Assistance) to pass the County. So we wait on the vehicle as well. We will do a new trial with a few different walkers to see which one gives Roa the support he needs to keep cruising.
This summer we also await Roa's Masgutova Method 5-day camp in July and continued Hippotherapy in August.
On another positive note, Roa's fundraiser was a big success! So many giving friends, family and even caring strangers! We feel so fortunate to have the love of Karl, Vickie, Travis, and others who helped make it all happen and run smoothly! A much overdue THANK YOU is coming, but consider this blog a BIG HUG from Rojo! The funds raised will help with to costs of a wheelchair van and powerchair copay.
I'm so happy to give you another glimpse of our life. I LOVE those of you who comment, contact me via email or facebook and show you care. This is a tough battle everyday and it helps to know we have people out there praying for us and keeping the faith.
Rojo will continue to do great things. Keep watching, reading, and you will be a part of the magic!
Monday, May 13, 2013
Saturday, April 13, 2013
Rockin With Rojo Benefit Concert
Join us.....
Rockin With Rojo Benefit Concert
Saturday May 11th 2:00 to 11:00 pm
The Historic Trempealeau Hotel
Downtown Trempealeau, WI
Come one, come all to a day of music, food, and fun for the whole family! Proceeds for the concert will go to assist with Roa's therapy, equipment, and care costs.
A variety of live bands, food, door prizes, and silent auction!
Bring a friend or two! Can't wait to see you there!
Rockin With Rojo Benefit Concert
Saturday May 11th 2:00 to 11:00 pm
The Historic Trempealeau Hotel
Downtown Trempealeau, WI
Come one, come all to a day of music, food, and fun for the whole family! Proceeds for the concert will go to assist with Roa's therapy, equipment, and care costs.
A variety of live bands, food, door prizes, and silent auction!
Bring a friend or two! Can't wait to see you there!
Thursday, April 11, 2013
Debbie Downer
I don't want to be a Debbie. One of those moms that blah blah blah on and on about how much our family goes through. The "life isn't fair, we deserve help" sect of Special needs families that seem to only see the bad in all of this.
It's hard to not be a Downer. I fall into that trap of despair and grief often. When Bryan travels for work and I'm hustling through the snow (in April!) to get the boys loaded for therapy, when PCA number 10,000 quits (by email) because her load is too great, when I see Roa's eyes filled with longing as he watches Gunnar ride his trike around the house.
But that is not why we live this life.
We were put on Earth to lift others up. Not to cry "woe is me" and try to get what is mine. Roa doesn't have that attitude. Why should I?
Roa continues to amaze us with his positive attitude. He giggles when he goes potty. He laughs hysterically when his brother jumps on him to wrestle. He concentrates so intensely when trying to feed himself, hold his marker, or get that water to Swampy on his iPad. He is simply heroic. To everyone he encounters.
I am so grateful for the gifts of money people have donated toward Roa's life of therapies, equipment,doctors, clinics and hospitals. Having people give of themselves to better his life is more priceless then I can put into words. We are forever grateful and pay it forward when we find some extras at the end of the bills.
One loving family friend from my childhood called me. (A call out of the blue means so much). She expressed her joy of watching Roa develop via the blog. She cried with me about our grief and worries of the future. She donated some money and expressed how happy she was to be a part of "Team Roa". Because she knew someday we WILL do something great to help others that are afflicted.
Mark My Words.... We will do just that.
So I'm not promising that I will not pull a Debbie now and again. After all , CP is no walk in the park (terrible pun). But take my pain, put into words on this blog, and use it to change YOU. Read through my complaints and allow it to inspire you to be true change in someone's life.
Debbie attitude or not, each day I wake up as the someone who is promising to help others as God wants of all of us.
My constant reminder to do better, to be better is King Roa.
Let him (or some other little champ) be yours.
It's hard to not be a Downer. I fall into that trap of despair and grief often. When Bryan travels for work and I'm hustling through the snow (in April!) to get the boys loaded for therapy, when PCA number 10,000 quits (by email) because her load is too great, when I see Roa's eyes filled with longing as he watches Gunnar ride his trike around the house.
But that is not why we live this life.
We were put on Earth to lift others up. Not to cry "woe is me" and try to get what is mine. Roa doesn't have that attitude. Why should I?
Roa continues to amaze us with his positive attitude. He giggles when he goes potty. He laughs hysterically when his brother jumps on him to wrestle. He concentrates so intensely when trying to feed himself, hold his marker, or get that water to Swampy on his iPad. He is simply heroic. To everyone he encounters.
I am so grateful for the gifts of money people have donated toward Roa's life of therapies, equipment,doctors, clinics and hospitals. Having people give of themselves to better his life is more priceless then I can put into words. We are forever grateful and pay it forward when we find some extras at the end of the bills.
One loving family friend from my childhood called me. (A call out of the blue means so much). She expressed her joy of watching Roa develop via the blog. She cried with me about our grief and worries of the future. She donated some money and expressed how happy she was to be a part of "Team Roa". Because she knew someday we WILL do something great to help others that are afflicted.
Mark My Words.... We will do just that.
So I'm not promising that I will not pull a Debbie now and again. After all , CP is no walk in the park (terrible pun). But take my pain, put into words on this blog, and use it to change YOU. Read through my complaints and allow it to inspire you to be true change in someone's life.
Debbie attitude or not, each day I wake up as the someone who is promising to help others as God wants of all of us.
My constant reminder to do better, to be better is King Roa.
Let him (or some other little champ) be yours.
Wednesday, April 10, 2013
Wednesday, March 13, 2013
Acceptance
This photo is from Roa's last day of Conductive Education. Yes, I wrote last day. It makes me so sad to say but we are discontinuing this part of Roa's weekly routine. Paige, Roa's PCA, resigned. She was PCA number 9 in our life. We are tired of training. Tired of interviewing, asking of they can commit for one year or so, and then receiving a resignation notice. Usually the reason is the work is too much. A few moved on to real world jobs. We hire college girls because they like the experience and work for $10 per hour. If we would go through and agency, we would pay $13-20 per hour. This is an out of pocket cost to us. Plus gas to get to The Plus Center. Plus the cost of the CE session itself.
Everytime we get a new PCA, I have to train her in our home and Ors has to train her at the center. Ors is done training our people. We would have to pay for his staff to assist Roa and that cost would add up fast with gas and session fee.
So, we chose sadly to give up the Conductive session twice a week.
It feels like another door closed. It feels like another hope of mobility shredded. Depressing, yet reality.
We are in the process of trying power chairs and looking at vehicles. Roa enjoys the joystick and is building confidence at school maneuvering around his friends. We are starting to accept that this will be Roa's main mode of movement. We are working with the ARC of MN to apply for TEFRA- the form of MA we pay the county to be on. The middle class curse.
We will continue with therapies- OT, PT, Speech that our insurance covers plus squeeze in horseback riding, aquatics time, and ABM sessions as funds allow. We put a large portion of money given through donations to the upcoming Masguatova Method Camp in July. Praying this method of reflex integration helps Roa find movement on the floor with more ease.
We are discouraged. Grief and acceptance is setting in. But we still try to find the light.
Thank you to the wonderful donations from loving family and friends.
Thank you to my dear friend Karl Wallin for planning and organizing a fundraising concert on May 11 at the Trempealeau Hotel in Wisconsin. The extra donations will help us continue with adaptations to make Roa's life and ours a bit easier.
Most of all, thank you to Christine, Aunt Vick, Lori, grandpa Al, and Daisy for giving Bryan and I respite. Every time you take care of Roa (and Gunnar) so that we can get away for a breather, clean the house, etc.,you are giving us a true gift! You all aid without question and we love you for it.
I recently had a nurse at one of our numerous appointments say, "We never get time away from our kids either". She had typical developing children, age 2 and 4. I held my tongue but wanted to say, " until you cannot leave a room without your non-verbal , non-mobile child crying out to you..... Until you have to spoon feed every bite into that child's mouth.... Until you have to place that child in a sitting position to then, hand over hand play,... Until that time..... You can keep you comment to yourself."
Thank you to those of you who get it.
Everytime we get a new PCA, I have to train her in our home and Ors has to train her at the center. Ors is done training our people. We would have to pay for his staff to assist Roa and that cost would add up fast with gas and session fee.
So, we chose sadly to give up the Conductive session twice a week.
It feels like another door closed. It feels like another hope of mobility shredded. Depressing, yet reality.
We are in the process of trying power chairs and looking at vehicles. Roa enjoys the joystick and is building confidence at school maneuvering around his friends. We are starting to accept that this will be Roa's main mode of movement. We are working with the ARC of MN to apply for TEFRA- the form of MA we pay the county to be on. The middle class curse.
We will continue with therapies- OT, PT, Speech that our insurance covers plus squeeze in horseback riding, aquatics time, and ABM sessions as funds allow. We put a large portion of money given through donations to the upcoming Masguatova Method Camp in July. Praying this method of reflex integration helps Roa find movement on the floor with more ease.
We are discouraged. Grief and acceptance is setting in. But we still try to find the light.
Thank you to the wonderful donations from loving family and friends.
Thank you to my dear friend Karl Wallin for planning and organizing a fundraising concert on May 11 at the Trempealeau Hotel in Wisconsin. The extra donations will help us continue with adaptations to make Roa's life and ours a bit easier.
Most of all, thank you to Christine, Aunt Vick, Lori, grandpa Al, and Daisy for giving Bryan and I respite. Every time you take care of Roa (and Gunnar) so that we can get away for a breather, clean the house, etc.,you are giving us a true gift! You all aid without question and we love you for it.
I recently had a nurse at one of our numerous appointments say, "We never get time away from our kids either". She had typical developing children, age 2 and 4. I held my tongue but wanted to say, " until you cannot leave a room without your non-verbal , non-mobile child crying out to you..... Until you have to spoon feed every bite into that child's mouth.... Until you have to place that child in a sitting position to then, hand over hand play,... Until that time..... You can keep you comment to yourself."
Thank you to those of you who get it.
Wednesday, February 20, 2013
The View From Here
Bryan is in Kansas for work. Just a one night, two day trip, but it leaves me running and my boys having to enterain themselves a bit more. Not a big deal, I manage with the help of family and friends to come and break the day up on these frigid, no outside play days.
This morning as I scurried around the kitchen, getting breakfast dishes cleaned up and sneaking in a few sips of coffee, I glanced into the family room and had that guilty, sad feeling rush over me.
Gunnar was at play with his Duplos, Ipad, and Baby Jaguar. Up and down. In and out of the room he moved, busy at play.
Roa, on the other hand, was lying on the floor, tugging on the strings of his helium "Get Well Soon" balloons, still alive from his hospital stay.
Poor Roa, I thought. The poor kid is stuck doing the same things over and over when we are not there to help him play.
But then, I thought for a moment,... and slipped quietly into the room to join him on the rug.
The balloons were floating above us, bobbing up and down with each pull on the ribbon. The morning sun was reflecting light from the balloons onto the white, textured ceiling. Millions of little light beams were dancing in rainbow hues across the ceiling. Red, yellow, green, blue... I could see them all.
As I looked to my right, I could also see the reflection of the balloons in the fireplace glass, which lit up with the bouncing balloons. This of course did not go unnoticed by my observant little boy, as Roa looked from the ceiling, to the balloons, to the fireplace.
And to further add to my amazing moment of spying on play, I noticed that Roa wasn't just moving the balloons, spastically with a body that just did it's own thing.
Roa was purposely twitching the ribbon of the balloons to make the colors move, blend or freeze.
Play with Purpose.
What parents and Early Educators take pride in.
Roa was doing just that.
So next time you glance at a "special child", whether they are laughing to themselves, repetitively lining up or banging on toys, or simply watching a toy spin or move. Do not be quick to pity or judge.
They own their personal play.
From the view I took today, Roa was blooming where he was planted.
This morning as I scurried around the kitchen, getting breakfast dishes cleaned up and sneaking in a few sips of coffee, I glanced into the family room and had that guilty, sad feeling rush over me.
Gunnar was at play with his Duplos, Ipad, and Baby Jaguar. Up and down. In and out of the room he moved, busy at play.
Roa, on the other hand, was lying on the floor, tugging on the strings of his helium "Get Well Soon" balloons, still alive from his hospital stay.
Poor Roa, I thought. The poor kid is stuck doing the same things over and over when we are not there to help him play.
But then, I thought for a moment,... and slipped quietly into the room to join him on the rug.
The balloons were floating above us, bobbing up and down with each pull on the ribbon. The morning sun was reflecting light from the balloons onto the white, textured ceiling. Millions of little light beams were dancing in rainbow hues across the ceiling. Red, yellow, green, blue... I could see them all.
As I looked to my right, I could also see the reflection of the balloons in the fireplace glass, which lit up with the bouncing balloons. This of course did not go unnoticed by my observant little boy, as Roa looked from the ceiling, to the balloons, to the fireplace.
And to further add to my amazing moment of spying on play, I noticed that Roa wasn't just moving the balloons, spastically with a body that just did it's own thing.
Roa was purposely twitching the ribbon of the balloons to make the colors move, blend or freeze.
Play with Purpose.
What parents and Early Educators take pride in.
Roa was doing just that.
So next time you glance at a "special child", whether they are laughing to themselves, repetitively lining up or banging on toys, or simply watching a toy spin or move. Do not be quick to pity or judge.
They own their personal play.
From the view I took today, Roa was blooming where he was planted.
Wednesday, February 6, 2013
Potty watch working!
So we purchased an Angry Birds watch for Roa to wear to tell us when it is potty time. First day, I told him all about it- if you gotta go look at your watch, bite it, whatever! He laughed, bit his watch, I put him on the potty and he WENT! This kid is so smart! Proud Mama moment!
Joystick overjoyed !
I found this toy at Lakeshore learning. What an awesome way to practice joystick skills for the powerchair we will be getting! Roa is addicted! So neat!
Friday, January 25, 2013
Flu Blues
Roa is in the hospital. Getting an IV and meds after a few days of the flu. That gag reflex kicks in and nothing stays down! Prayers for a quick recovery!
Monday, January 21, 2013
Thursday, January 17, 2013
Wednesday, January 16, 2013
A Letter of Apology
Dear parents of students from my teaching days,
I am writing this to apologize to you. For what, you may ask? Oh, so many things.
I know that I thought I did my best for you and your child. I planned the lessons and adapted them to suit your child's unique needs. I carried through with the activities and noted progress. I recorded areas of need and goals for the future. I wrote you notes and emails reporting about the day and gave you ideas and "homework" of things which still needed improvement. Conferences, homevisits, and IEP meetings.
But then I went home.
I went home to a clean, tidy house to eat a calm quiet dinner, watch some TV, and head to the gym for "me time". I went for long walks with my dog. I went to sleep and slept allllll night long....8 whole hours, and then returned to school the next day to teach your child. Refreshed and ready for the workday stretch but always ready to head back home by the end of the day.
I got to leave. I got Alone Time. I had time to ponder all the issues your child had and how WE were going to work on them. I had private time to think about new ways to involve YOU in the development of your child. After all, parents NEED to be involved.
Boy, was I blind.
I was not a parent then. I was not the guardian of a child with special needs.
I was clueless.
I throw around terminology and hurtful words- Like REGRESSION, and INDEPENDENTLY, and WITHOUT PROMPTING....without a second thought.
I didn't realize how these words can cause worry and sadness.
Due to MY full plate, I would forget to send a note home to tell about the day. Or I would cancel a homevisit due to a busy schedule. I didn't think about the fact of how important those things were to you. How you looked at a note as a glimpse of possibility. That the homevisit was a time you could relax and be "hand off" for a moment. to celebrate a little milestone, or to vent about your fears and concerns
I promised you assistive tech. and communication strategies and didn't follow through due to time constraints or limited resource or some other excuse. I lectured about the importance of charting for potty training or behavior issue and sometimes helped you develop a plan. But mostly I just threw ideas at you to sort out, games and activities for you to fit in your already hectic day, and lists of things that needed work.
Sadly, I left feeling proud of myself. Look at me, the-all-knowing-Oz of Early Childhood development. I had done MY job, now let's see if these parents follow through...
Yes, I judged.
I didn't know then what I know now.
Now, I am getting a cool lesson in reality. I am a struggling mother caring for two little boys while my husband works. I chauffeur to appointments and sit in waiting rooms. I hurry home to get dinner on the table and laundry done while there is crying from the next room. Crying for attention from a child who cannot help himself.
My dinners are spent with one child on my lap while spoon feeding the one who cannot feed himself.
I am sleep deprived because one child sleeps next to me for part of the night and the other wakes for hours on end. My alone time is in the driver's seat of a car or when someone volunteers some respite.
I receive the notes from school, doctors and therapists and try to soak up the positives while wincing from the negatives. When those notes or emails or phonecalls do not come, I am anxious and wondering what I missed.
I'm on the phone setting up appointments or interviewing PCA candidates. I'm dealing with questionnaires, developmental inventories rating my son's life. I sort through insurance and bills.
I read the goals and plans that are set for my son. I tear up when I hear the words regression or delay. I look at those benchmarks and strive to do better. To be a better mom. To help my son meet those standards. I swear I will work harder.
But then, I need to sleep, or take a shower( while someone cries in the bedroom next door) I need to be a wife and friend. A playmate and just a mom to my kids.
And so I feel like a failure.
I feel probably like how you felt... back when I sat in that meeting and told you all the things your child couldn't do, or should do, or maybe, possibly.... someday... might be able to do. Helpless and defeated.
So for that, I apologize to you, parents-of-past-students. I did not walk in your shoes. I did not feel your pain.
And now. I know.
I am writing this to apologize to you. For what, you may ask? Oh, so many things.
I know that I thought I did my best for you and your child. I planned the lessons and adapted them to suit your child's unique needs. I carried through with the activities and noted progress. I recorded areas of need and goals for the future. I wrote you notes and emails reporting about the day and gave you ideas and "homework" of things which still needed improvement. Conferences, homevisits, and IEP meetings.
But then I went home.
I went home to a clean, tidy house to eat a calm quiet dinner, watch some TV, and head to the gym for "me time". I went for long walks with my dog. I went to sleep and slept allllll night long....8 whole hours, and then returned to school the next day to teach your child. Refreshed and ready for the workday stretch but always ready to head back home by the end of the day.
I got to leave. I got Alone Time. I had time to ponder all the issues your child had and how WE were going to work on them. I had private time to think about new ways to involve YOU in the development of your child. After all, parents NEED to be involved.
Boy, was I blind.
I was not a parent then. I was not the guardian of a child with special needs.
I was clueless.
I throw around terminology and hurtful words- Like REGRESSION, and INDEPENDENTLY, and WITHOUT PROMPTING....without a second thought.
I didn't realize how these words can cause worry and sadness.
Due to MY full plate, I would forget to send a note home to tell about the day. Or I would cancel a homevisit due to a busy schedule. I didn't think about the fact of how important those things were to you. How you looked at a note as a glimpse of possibility. That the homevisit was a time you could relax and be "hand off" for a moment. to celebrate a little milestone, or to vent about your fears and concerns
I promised you assistive tech. and communication strategies and didn't follow through due to time constraints or limited resource or some other excuse. I lectured about the importance of charting for potty training or behavior issue and sometimes helped you develop a plan. But mostly I just threw ideas at you to sort out, games and activities for you to fit in your already hectic day, and lists of things that needed work.
Sadly, I left feeling proud of myself. Look at me, the-all-knowing-Oz of Early Childhood development. I had done MY job, now let's see if these parents follow through...
Yes, I judged.
I didn't know then what I know now.
Now, I am getting a cool lesson in reality. I am a struggling mother caring for two little boys while my husband works. I chauffeur to appointments and sit in waiting rooms. I hurry home to get dinner on the table and laundry done while there is crying from the next room. Crying for attention from a child who cannot help himself.
My dinners are spent with one child on my lap while spoon feeding the one who cannot feed himself.
I am sleep deprived because one child sleeps next to me for part of the night and the other wakes for hours on end. My alone time is in the driver's seat of a car or when someone volunteers some respite.
I receive the notes from school, doctors and therapists and try to soak up the positives while wincing from the negatives. When those notes or emails or phonecalls do not come, I am anxious and wondering what I missed.
I'm on the phone setting up appointments or interviewing PCA candidates. I'm dealing with questionnaires, developmental inventories rating my son's life. I sort through insurance and bills.
I read the goals and plans that are set for my son. I tear up when I hear the words regression or delay. I look at those benchmarks and strive to do better. To be a better mom. To help my son meet those standards. I swear I will work harder.
But then, I need to sleep, or take a shower( while someone cries in the bedroom next door) I need to be a wife and friend. A playmate and just a mom to my kids.
And so I feel like a failure.
I feel probably like how you felt... back when I sat in that meeting and told you all the things your child couldn't do, or should do, or maybe, possibly.... someday... might be able to do. Helpless and defeated.
So for that, I apologize to you, parents-of-past-students. I did not walk in your shoes. I did not feel your pain.
And now. I know.
Monday, January 14, 2013
Thursday, January 10, 2013
Terrors, Startles, and Fears
So life is moving along as usual and then one day, both boys decide naptime is for babies. No more naps in beds for the Thayer duo.
Not a happy momma. Busy, Busy momma. With two exhausted boys by nightfall.
Gunnar gets giddy wild in the afternoons but won't settle down to sleep.
Not in his bed.
Not in mine.
Not on the couch.
Not on the floor.
Not with the TV on.
Not with it off.
Not with music.
Not with a fox.
Not in a box.
Roa gets off the school bus, half asleep with his head hanging, but S C R E A M S bloody murder when I lay him down on his bed. If on the couch, he just giggles, kicks, and moves to get down... aka. fall off.
Which leads to our next issue...
Roa is crying hysterically at bedtimes again. Scared to be alone, scared of something, startling, afraid to fall,....?? We don't know. He is also waking up in the night screaming and crying like he is afraid. Hearts a-pounding in the night for Dad and Mom.
We see this happening in the car too at times that he might be tired. Reaching out arms and legs,...fighting to grab and balance.
F r e a k s u s o u t !!!!!
Well, it also scared the bus driver to bits! Yesterday, she pulled up to the house honking and waving. She thought Roa had had a seizure. She decribed the same type of thing we see- waving arms, crying, screaming, scared eyes. She said, "It's like he saw something that scared him!"
What do we do with this behavior? He doesn't tell us what is wrong. He doesn't even "thumb pick" to give us a hint. Just gives us his sad eyes and lip out.
Another CP mystery. Hopefully it is something positive, like he is working through that darn startle reflex and ATNR reflex that won't let go!!!
Prayers for answers! Please!
Not a happy momma. Busy, Busy momma. With two exhausted boys by nightfall.
Gunnar gets giddy wild in the afternoons but won't settle down to sleep.
Not in his bed.
Not in mine.
Not on the couch.
Not on the floor.
Not with the TV on.
Not with it off.
Not with music.
Not with a fox.
Not in a box.
Roa gets off the school bus, half asleep with his head hanging, but S C R E A M S bloody murder when I lay him down on his bed. If on the couch, he just giggles, kicks, and moves to get down... aka. fall off.
Which leads to our next issue...
Roa is crying hysterically at bedtimes again. Scared to be alone, scared of something, startling, afraid to fall,....?? We don't know. He is also waking up in the night screaming and crying like he is afraid. Hearts a-pounding in the night for Dad and Mom.
We see this happening in the car too at times that he might be tired. Reaching out arms and legs,...fighting to grab and balance.
F r e a k s u s o u t !!!!!
Well, it also scared the bus driver to bits! Yesterday, she pulled up to the house honking and waving. She thought Roa had had a seizure. She decribed the same type of thing we see- waving arms, crying, screaming, scared eyes. She said, "It's like he saw something that scared him!"
What do we do with this behavior? He doesn't tell us what is wrong. He doesn't even "thumb pick" to give us a hint. Just gives us his sad eyes and lip out.
Another CP mystery. Hopefully it is something positive, like he is working through that darn startle reflex and ATNR reflex that won't let go!!!
Prayers for answers! Please!
Tuesday, January 8, 2013
Appear
ROA WENT POTTY AT SCHOOL!
How is that for a headliner!!
We are so proud of Roa! Potty training is a scary uncertain thing with CP. We didn't know if he would be able to relax enough to release while on the pottychair. We don't know if he has the muscle control to hold it and go on the toilet instead of the diaper, but HE DID IT!
That boy continues to amaze us.
Last night at Special Olympics, Roa was in Rockstar mode. Conquering that obstacle course like he owned it (with Mom and Dad supporting him, just trying to keep up!)
We also did some scarf throwing and catching and I cannot believe the control he mustered to open up his hand and release the scarf and then try and catch it as it floated down.
Amazing. Hopeful. Promising.
Roa is starting to move around the gym at school with some independence in his gait trainer. He is beginning to steer in the right direction.
Eat. Drink. Eat. Eat. Eat. Drink. His Ipad commands us at mealtime as he requests what he wants next using his Ipad as his voice. Total control. Total understanding that he has some power over his life.
Powerful. Amazing. Hopeful.
All these little things we take in and thank God for the miracles that dwell in Roa. They are in there... we just have to be patient and wait for them to appear.
How is that for a headliner!!
We are so proud of Roa! Potty training is a scary uncertain thing with CP. We didn't know if he would be able to relax enough to release while on the pottychair. We don't know if he has the muscle control to hold it and go on the toilet instead of the diaper, but HE DID IT!
That boy continues to amaze us.
Last night at Special Olympics, Roa was in Rockstar mode. Conquering that obstacle course like he owned it (with Mom and Dad supporting him, just trying to keep up!)
We also did some scarf throwing and catching and I cannot believe the control he mustered to open up his hand and release the scarf and then try and catch it as it floated down.
Amazing. Hopeful. Promising.
Roa is starting to move around the gym at school with some independence in his gait trainer. He is beginning to steer in the right direction.
Eat. Drink. Eat. Eat. Eat. Drink. His Ipad commands us at mealtime as he requests what he wants next using his Ipad as his voice. Total control. Total understanding that he has some power over his life.
Powerful. Amazing. Hopeful.
All these little things we take in and thank God for the miracles that dwell in Roa. They are in there... we just have to be patient and wait for them to appear.
Wednesday, January 2, 2013
Dragons, Cake, and Christmas Trees
Christmas! Christmas! Christmas! What a busy, stuff yourselves, get little sleep or exercise time of the year!
Roa had a wonderful holiday. Anything would beat last year with his holiday hospital stay with severe flu. But this season was nice with many family gatherings, lots of presents, and our own tradition of Birthday Cake for Jesus on Christmas Eve. Roa loves birthday celebrations!
How to Train your Dragon is the hit this year with Roa. Sant brought him the movie and his own toy Dragon! Roa was pretty pumped!
Being off routine was tough for Rojo. He missed school and his friends. It gets boring for him all day at home with mom. We only had two speech/OT sessions and one session of Conductive Ed.
It was great to send him on the bus today. Off to school and back to fighting the fight.
On a positive note, Roa was vocal this break. More imitation and some spontaneous words.
We also starting potty training. Gunnar is also excited about that and has gone on the potty so that is motivating to Roa. Now we wait for the excitement to wear down so he can actually relax enough to go. Oh the mysteries of Cerebral
palsy..... They just keep coming!
Roa had a wonderful holiday. Anything would beat last year with his holiday hospital stay with severe flu. But this season was nice with many family gatherings, lots of presents, and our own tradition of Birthday Cake for Jesus on Christmas Eve. Roa loves birthday celebrations!
How to Train your Dragon is the hit this year with Roa. Sant brought him the movie and his own toy Dragon! Roa was pretty pumped!
Being off routine was tough for Rojo. He missed school and his friends. It gets boring for him all day at home with mom. We only had two speech/OT sessions and one session of Conductive Ed.
It was great to send him on the bus today. Off to school and back to fighting the fight.
On a positive note, Roa was vocal this break. More imitation and some spontaneous words.
We also starting potty training. Gunnar is also excited about that and has gone on the potty so that is motivating to Roa. Now we wait for the excitement to wear down so he can actually relax enough to go. Oh the mysteries of Cerebral
palsy..... They just keep coming!
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