Wednesday, October 24, 2012
Tuesday, October 23, 2012
Closing the Gap (aka Clearing the Grand Canyon in a Single Bound)
It has been a few weeks since my last post. Since that time, we have had another round of ABM with Pati in Lino Lakes. Things went well this 5 day-10 session round. Roa responded so well to the motor patterning working on rolling, moving to sit from lying, getting from knees up to his wheelchair and using his arms more in reaching. We have seen one big earthquake that registered- Roa is doing some walking with support at his shoulders, not supporting him under his armpits like usual. This is a great step.
So, along with that, Kelly, PT at Courage Center has lent us a Gator reverse walker with forearm supports. Roa is doing some nice slow steps with it. His arms are not strapped down, his trunk is unsupported. Praise God! This is good. Baby steps towards walking.
Roa also has been using some spontaneous words. "Go, Up, Out, All (for all done), Ha (for Hi)" This is also so good.
His therapists at Functional Kids and Conductive Ed. have commented on how motivated he is to follow motor commands and sit and stand up with more stabilty.
Are these changes from the Anat Baniel Method with Pati? We are unsure, but it is definitely a sign to continue down this path.
Another sign for a path less taken, Pati mentioned that she thinks the Masgutova Method and reflex integration work would be very beneficial for Roa. Thus, like a lightening bolt from God himself, we know that this is something we need to start saving for. Another method of hope not covered by insurance.
Which leads me to the Closing the Gap conference we attended this past week. This conference, held in Bloomington, MN is one of the largest assistive technology conferences in our country. Vendors are there toting their wares from apps, to power chairs, to smartboard programs, to weighted blankets.
Roa tried a power chair controlled with head movements and love it! Tooled around the booths, smiling away. We also played forever with a smartboard program that lit up with butterflies, colors, and music at Roa's slightest touch. Roa also tried a smart little floor wheelchair called a ZipZac. Basically a Bumbo chair/ Childrite seat on wheels, it allowed Roa to wheel around on the floor with other kids.
So yes, we saw the wonders of the special needs world, things that would make Roa's life alittle easier, a little different, a bit better. But for a fee, a cost, a copay, an investment. EVERYTHING in CP land costs big. From therapies to bath seats. From pencil grips to van ramps, a large chunk o' change is required.
And, I'm tired of requesting for donations. It is humbling to rely on the kindness of family, friends, and strangers-that-care to provide for your child's needs. As we enter yet another money sucking therapy venture, it is impossible to ask for more from people who have given already. At this point, those that want to give have done so. Those that don't want to give, won't. Simple.
It is hard to stomach some days, the thoughts that the parents in Typical Land look for donations for hockey fundraisers or boy scout camps. Parents that save for trips to Disneyland during school breaks instead of driving 20 minutes to Closing the Gap. We parent of CP Land do cartwheels when we get a $10 donation that covers a meer 6 minutes of therapy. Typical Land parents throw $10 out the window at McDonald's without giving it a second thought.
I have hear many recommendations that we apply for aid. We have. We are the Middle Class. We don't qualify. When Bryan lost his job we received aid. Since his return to work, that aid ended.
So we strolled around the vendor's booths at Closing the Gap, realizing that Our Gap is H U G E. We are as far away from the ZipZac chair as we are from Disneyland.
Am I whining? Yes. It is unfair that Roa has to go through all this just to be a kid. It is a bummer that we have a $1600 copay for dental care this month along with trying to save for December's ABM round, and possible a new walker in the near future. Top all that with my continued course work studying CranioSacral therapy that is an additional bill. I think we deserve the right to whine.
We don't like to look for hand outs to help our son. We would love to supply everything his little heart desires to live a happy life just as we do for Gunnar. But the gap in price between Gunnar's Go Deigo Go Trike and Roa's Rifton Walker is a far as my misty eyes can see.
So, along with that, Kelly, PT at Courage Center has lent us a Gator reverse walker with forearm supports. Roa is doing some nice slow steps with it. His arms are not strapped down, his trunk is unsupported. Praise God! This is good. Baby steps towards walking.
Roa also has been using some spontaneous words. "Go, Up, Out, All (for all done), Ha (for Hi)" This is also so good.
His therapists at Functional Kids and Conductive Ed. have commented on how motivated he is to follow motor commands and sit and stand up with more stabilty.
Are these changes from the Anat Baniel Method with Pati? We are unsure, but it is definitely a sign to continue down this path.
Another sign for a path less taken, Pati mentioned that she thinks the Masgutova Method and reflex integration work would be very beneficial for Roa. Thus, like a lightening bolt from God himself, we know that this is something we need to start saving for. Another method of hope not covered by insurance.
Which leads me to the Closing the Gap conference we attended this past week. This conference, held in Bloomington, MN is one of the largest assistive technology conferences in our country. Vendors are there toting their wares from apps, to power chairs, to smartboard programs, to weighted blankets.
Roa tried a power chair controlled with head movements and love it! Tooled around the booths, smiling away. We also played forever with a smartboard program that lit up with butterflies, colors, and music at Roa's slightest touch. Roa also tried a smart little floor wheelchair called a ZipZac. Basically a Bumbo chair/ Childrite seat on wheels, it allowed Roa to wheel around on the floor with other kids.
So yes, we saw the wonders of the special needs world, things that would make Roa's life alittle easier, a little different, a bit better. But for a fee, a cost, a copay, an investment. EVERYTHING in CP land costs big. From therapies to bath seats. From pencil grips to van ramps, a large chunk o' change is required.
And, I'm tired of requesting for donations. It is humbling to rely on the kindness of family, friends, and strangers-that-care to provide for your child's needs. As we enter yet another money sucking therapy venture, it is impossible to ask for more from people who have given already. At this point, those that want to give have done so. Those that don't want to give, won't. Simple.
It is hard to stomach some days, the thoughts that the parents in Typical Land look for donations for hockey fundraisers or boy scout camps. Parents that save for trips to Disneyland during school breaks instead of driving 20 minutes to Closing the Gap. We parent of CP Land do cartwheels when we get a $10 donation that covers a meer 6 minutes of therapy. Typical Land parents throw $10 out the window at McDonald's without giving it a second thought.
I have hear many recommendations that we apply for aid. We have. We are the Middle Class. We don't qualify. When Bryan lost his job we received aid. Since his return to work, that aid ended.
So we strolled around the vendor's booths at Closing the Gap, realizing that Our Gap is H U G E. We are as far away from the ZipZac chair as we are from Disneyland.
Am I whining? Yes. It is unfair that Roa has to go through all this just to be a kid. It is a bummer that we have a $1600 copay for dental care this month along with trying to save for December's ABM round, and possible a new walker in the near future. Top all that with my continued course work studying CranioSacral therapy that is an additional bill. I think we deserve the right to whine.
We don't like to look for hand outs to help our son. We would love to supply everything his little heart desires to live a happy life just as we do for Gunnar. But the gap in price between Gunnar's Go Deigo Go Trike and Roa's Rifton Walker is a far as my misty eyes can see.
Tuesday, October 9, 2012
Off to school, Off the market, Off the mark
School certainly agrees with Roa. The therapists and teachers at school are kind enough to share photos of his day and he looks so strong. So big. So engaged.
I cannot say that he is excited to go each day. Not that he doesn't want to go, he is just kind of non-emotional about it.... about everything.
Roa is just calm and spacey after this round of botox. It really had us worried. We were getting the "Is he tired?" question from everyone!
Botox/phenol had that affect this round and that is hard. We like to see our happy, overly emotionally expressive boy. This calm, sinking-into his chair, zoned out Roa is sad. It makes us question if it is the right choice for our family. For Roa. Yes, we see better sleep, better sitting, easier gait. But it makes him zoney, drooly, and just depressed. Is it worth it? We have to decide. Oh, all the decisions we are forced to make.
He is getting a bit more animated as the weeks since the procedure go by. Last night at Special Olympics at the YMCA, he was loud and giggling again. Our boy is coming back.... until the next round of loosey-goosey injections... :(
Another tough decision, our house is off the market. We had a signed offer back in August, were arranging for the big move out, and the beginning of our building process and then the buyer backed out of the deal. We haven't had any movement on it since. The market is poor right now and nothing moves in the cold season, and so, we will wait and pray, and renovate, and relist come spring. Carrying Roa upstairs, downstairs, in and out, is just a form of exercise we will do another year. Freedom of mobility in our home for Roa will have to be limited for a while longer. We have no choice in that matter, so we will trudge on.
This week we start round three of Anat Baniel/Feldenkrais method with Pati in Lino Lakes. We are nervous, anxious, excited for the sessions to start. Will we see improvements in his motor skills? Will we see enough to warrent the continued draining of our savings? That is the tough part. We want to do what is the very best for Roa's development, for his future independence. But EVERYTHING in CP land costs so much! Most of the things we do have hefty copays, are out of pocket cost, or require time and travel expense. Money, money, money. You don't want it to hinder your fight, but in some situations our hands are tied.
There is another form of therapy, the Masgutova method, a neurosensorimotor method that focuses on reflex integration that we are very interested in. New to the United States orginating in Russia, this therapy form is available through a once per year camp in the Twin Cities.
Cost to the family? $4,500 for a 5 day camp.
Benefit of integrating Roa's primary reflexes that inhibit him from rolling, working with hands together in midline, etc? Priceless
Chance to just try this new form of therapy to see if it improves Roa's motor skills? Risk that it won't work for us? Still worth every penny
Chance that we can raise that kind of money by this summer for the camp? Totally up to God and Roa's Angel squad....that being YOU!
Thank you for your continued support in Roa's battle through this monster called Cerebral Palsy.
I cannot say that he is excited to go each day. Not that he doesn't want to go, he is just kind of non-emotional about it.... about everything.
Roa is just calm and spacey after this round of botox. It really had us worried. We were getting the "Is he tired?" question from everyone!
Botox/phenol had that affect this round and that is hard. We like to see our happy, overly emotionally expressive boy. This calm, sinking-into his chair, zoned out Roa is sad. It makes us question if it is the right choice for our family. For Roa. Yes, we see better sleep, better sitting, easier gait. But it makes him zoney, drooly, and just depressed. Is it worth it? We have to decide. Oh, all the decisions we are forced to make.
He is getting a bit more animated as the weeks since the procedure go by. Last night at Special Olympics at the YMCA, he was loud and giggling again. Our boy is coming back.... until the next round of loosey-goosey injections... :(
Another tough decision, our house is off the market. We had a signed offer back in August, were arranging for the big move out, and the beginning of our building process and then the buyer backed out of the deal. We haven't had any movement on it since. The market is poor right now and nothing moves in the cold season, and so, we will wait and pray, and renovate, and relist come spring. Carrying Roa upstairs, downstairs, in and out, is just a form of exercise we will do another year. Freedom of mobility in our home for Roa will have to be limited for a while longer. We have no choice in that matter, so we will trudge on.
This week we start round three of Anat Baniel/Feldenkrais method with Pati in Lino Lakes. We are nervous, anxious, excited for the sessions to start. Will we see improvements in his motor skills? Will we see enough to warrent the continued draining of our savings? That is the tough part. We want to do what is the very best for Roa's development, for his future independence. But EVERYTHING in CP land costs so much! Most of the things we do have hefty copays, are out of pocket cost, or require time and travel expense. Money, money, money. You don't want it to hinder your fight, but in some situations our hands are tied.
There is another form of therapy, the Masgutova method, a neurosensorimotor method that focuses on reflex integration that we are very interested in. New to the United States orginating in Russia, this therapy form is available through a once per year camp in the Twin Cities.
Cost to the family? $4,500 for a 5 day camp.
Benefit of integrating Roa's primary reflexes that inhibit him from rolling, working with hands together in midline, etc? Priceless
Chance to just try this new form of therapy to see if it improves Roa's motor skills? Risk that it won't work for us? Still worth every penny
Chance that we can raise that kind of money by this summer for the camp? Totally up to God and Roa's Angel squad....that being YOU!
Thank you for your continued support in Roa's battle through this monster called Cerebral Palsy.
Wednesday, October 3, 2012
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