So Rojo's Journey finally has a Facebook Page! If you are on Facebook, please "like" us for more photos and updates.
I also got around to starting my Craniosacral Therapy business website. I hope to reach parents of children with special needs. Parents like myself and Bryan who are searching for anything that might help their child's development and are willing to give CST a try.
http://www.tinylightbodybalancing.com/
Sunday, January 19, 2014
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.
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