Friday, November 19, 2010
Big Brother Roa
Gunnar Thomas Thayer was born on Saturday, November 13, 2010. Roa Jo is a proud big brother!
Friday, November 5, 2010
Halloween Fun!
Thursday, November 4, 2010
The world viewed from my back
I was lying on the floor today with Roa. Looking at the world as he does- lying on his back. I encourage you to give it a try.
I looked out the window at the trees without their leaves, blowing in the wind. I looked at the legs of the couch and ottoman, noticing stray toys and dust bunnies underneath. I see the sleeping Molly dog, lying next to me. I see the shadows moving on the wall and the ceiling.
I thought that my position on the floor was relaxing for a bit. But, I would tire of it day after day. Tire of viewing people walking at me sideways, tire of watching the TV sideways as well.
Roa still doesn't roll over. Still needs us to help him up to standing and walk with him. Still needs help getting into a sitting position and remain that way through propping with pillows and blankets.
Looking at Roa's 2 year view of the world on his back today, really made me think about how he deserves to fuss and yell when we leave him lying to attend to some task in the house. If he complains when I leave to go to the bathroom or change the laundry load, I need to think in his shoes.
I too would scream if I was forced to lay on my back watching the world go by when all I want to do is get up, chase my dogs, run around the tree in the wind, and LIVE a life standing up.
I looked out the window at the trees without their leaves, blowing in the wind. I looked at the legs of the couch and ottoman, noticing stray toys and dust bunnies underneath. I see the sleeping Molly dog, lying next to me. I see the shadows moving on the wall and the ceiling.
I thought that my position on the floor was relaxing for a bit. But, I would tire of it day after day. Tire of viewing people walking at me sideways, tire of watching the TV sideways as well.
Roa still doesn't roll over. Still needs us to help him up to standing and walk with him. Still needs help getting into a sitting position and remain that way through propping with pillows and blankets.
Looking at Roa's 2 year view of the world on his back today, really made me think about how he deserves to fuss and yell when we leave him lying to attend to some task in the house. If he complains when I leave to go to the bathroom or change the laundry load, I need to think in his shoes.
I too would scream if I was forced to lay on my back watching the world go by when all I want to do is get up, chase my dogs, run around the tree in the wind, and LIVE a life standing up.
Monday, November 1, 2010
Sandman comes... and goes
Yep. We are still struggling with sleep around the Thayer house. We continue to guess as to why Roa wakes up fussy and crying in the night for hours at a time. We continue to say, " maybe it's molars coming in...." maybe it's the new backpack carrier we are using for our nightly walk (he loves it!).... maybe the new sleep med, Doxepin, is giving him a tummyache as we increase the dose...are his muscles tight any where... did he nap too long today....
We have consulted with Dr Garcia, Sleep God. We have played around with the dosing. We wake. We struggle. We cry. We carry on... tired but not defeated. We will figure it out!
Roa continues, however to be his delightful self in the daytime hours. Gait trainer champ, kicking the ball down the street each day.
He has taken to making marks on paper with markers and does such nice job holding the marker!
This weekend, I began working diligently to help Roa to not only get food in his little hands, but to then make it enter the mouth!! He is getting better at it- fighting through the primitive reflex to turn his head away from his hand.
Baby steps, Baby steps.....
We have consulted with Dr Garcia, Sleep God. We have played around with the dosing. We wake. We struggle. We cry. We carry on... tired but not defeated. We will figure it out!
Roa continues, however to be his delightful self in the daytime hours. Gait trainer champ, kicking the ball down the street each day.
He has taken to making marks on paper with markers and does such nice job holding the marker!
This weekend, I began working diligently to help Roa to not only get food in his little hands, but to then make it enter the mouth!! He is getting better at it- fighting through the primitive reflex to turn his head away from his hand.
Baby steps, Baby steps.....
Tuesday, October 12, 2010
Update after a break from the blog
Hello Fans of Roa! I've had a couple friends and family ask "what's happening with Roa, why aren't you blogging?" So here we go.... The Roa/ Thayer Family update:
I am almost 34 weeks along now in my pregnancy and have been blessed with a fairly easy time of it these last few months. Thank you, Lord! Roa is pretty accepting that Momma isn't as physically able to carry and move him around as much as I used to. We do alot of floor play and play at his floor table, stander, or high chair. I catch a nap when he naps, thus my computer time is pretty limited to email catch up. But, I will try to do a weekly update.
With the gorgeous fall that we are having, we get out twice a day to walk the street in the gait trainer. Roa is doing so well moving in his trainer! It has been such a nice activity for us to walk up and down the street, greet the neighbors, kick his ball, and kick through the autumn leaves! 2 hours of our day is spent on our walk. Roa is really building up nice endurance and goes such a distance! Now we have to teach him how to move with more independence and steer himself.
With winter creeping up on us, we are looking into gait trainer options as his current Pacer, borrowed from the school district, does not move through snow (or wet leaves, we've discovered). We are hoping Rifton Co. will help us find a nice solution for continuing our outdoor walking throughout the Minnesota winter!
Besides contacting Rifton, we are also in connection with the LiteGait Co. to see about renting a LiteGait system to continue Roa's treadmill training at home. Roa continues to do the training on the treadmill at Courage and is doing so great! Check out LiteGait on Facebook and see our boy's video! I was very pleased to find out via a LiteGait rep. that we wouldn't have to purchase the expensive piece of therapy equipment outright, but could look at renting. Things are falling into place!
Roa has botox injections on September 3rd and things went very well! Dr. Gormely choose to do a smaller amount in the hamstrings, larger amount in the adductors, and a bit in Roa's thumbs. Roa is reacting well to the botox amounts and is grasping objects with more confidence as well as sitting for a few minutes with independence. Nice changes.
On a negative note, Roa continues to battle with sleep causing many rough nights for the Thayer clan. We finally broke down and revisited the Gillette sleep specialist, Dr. Garcia, last week. Upon our discussion with him, he shared with us that he thinks that Roa's sleep issues are biological in nature rather than behavioral or muscular. He thinks we have established a great bedtime routine and are consistent with the schedule (pat, pat on our backs!) and that Roa's brain is not letting him shut down to allow cycled sleep patterns.
Thus, we are trying a sleep medication, Doxepin, in a small dose. It is not a long lasting drug, so shouldn't affect his daily life or make him drowsy. It has very limited side effects. We were very thankful that we didn't have to go with the harsher drug choice of Valium or Baclofen.
Roa is on 4 nights with the medication. He takes it like a champ at bedtime with his snack and has been sleeping until about 3:30ish when he then needs only a position adjust or diaper change. He then wakes at his usual time of 5:30/6:00ish, BUT has been going back down the last few days to wake for the day between 7 and 8:00!!!! HEAVEN!!
We pray that this positive effect continues and Roa will make some nice gains developmentally with the additional sleep.... And.., make life a bit easier for the creaky ol bodies of Ma and Pa Thayer!
We have begun our school year session of Early Childhood Family Education class. This year, we are attending the Tuesday evening session so that Bryan can be a part of things and can take Roa after I have the baby. Roa LOVES school this year!! Running around the playground in his gait trainer, kicking balls at gym time, fingerpainting like a madman! He squeals and giggles during the group songs and activities and listens so quietly at story time. Daddy and I are so very proud of our boy!
Roa is the youngest one in the group of about 10. There is one other child with special needs in the group this year, a 4 year old little girl with a hearing impairment. It is really nice to see. The teacher, Janet, is very nice and tries to include Roa in everything given his physical differences. ECFE is such a wonderful program! We are impressed.
Roa continues to have weekly home-based Occupational therapy. He has speech therapy twice a month, Physical therapy, twice homebased/month, weekly at Courage and also has EI teacher services once per month. We have taken a break from ABM for the fall but continue with Craniosacral once per month. Dr. John and his chiropractic magic is apart of Roa's routine 3 times a month and also has helped with sleep.
We continue to travel weekly to Burnsville for Conductive Education with Ors and wish we could do more! Tomorrow, Laurie and Lynsey, Roa's OT and Sp/L therapists, are joining us to check out the amazing results of CE! I am excited to have them see all the things that Roa does with independence while working with Ors!
Gotta run, nap time is over for King Roa and he beckens! Nice to be "in touch" with my blogger family again!
I am almost 34 weeks along now in my pregnancy and have been blessed with a fairly easy time of it these last few months. Thank you, Lord! Roa is pretty accepting that Momma isn't as physically able to carry and move him around as much as I used to. We do alot of floor play and play at his floor table, stander, or high chair. I catch a nap when he naps, thus my computer time is pretty limited to email catch up. But, I will try to do a weekly update.
With the gorgeous fall that we are having, we get out twice a day to walk the street in the gait trainer. Roa is doing so well moving in his trainer! It has been such a nice activity for us to walk up and down the street, greet the neighbors, kick his ball, and kick through the autumn leaves! 2 hours of our day is spent on our walk. Roa is really building up nice endurance and goes such a distance! Now we have to teach him how to move with more independence and steer himself.
With winter creeping up on us, we are looking into gait trainer options as his current Pacer, borrowed from the school district, does not move through snow (or wet leaves, we've discovered). We are hoping Rifton Co. will help us find a nice solution for continuing our outdoor walking throughout the Minnesota winter!
Besides contacting Rifton, we are also in connection with the LiteGait Co. to see about renting a LiteGait system to continue Roa's treadmill training at home. Roa continues to do the training on the treadmill at Courage and is doing so great! Check out LiteGait on Facebook and see our boy's video! I was very pleased to find out via a LiteGait rep. that we wouldn't have to purchase the expensive piece of therapy equipment outright, but could look at renting. Things are falling into place!
Roa has botox injections on September 3rd and things went very well! Dr. Gormely choose to do a smaller amount in the hamstrings, larger amount in the adductors, and a bit in Roa's thumbs. Roa is reacting well to the botox amounts and is grasping objects with more confidence as well as sitting for a few minutes with independence. Nice changes.
On a negative note, Roa continues to battle with sleep causing many rough nights for the Thayer clan. We finally broke down and revisited the Gillette sleep specialist, Dr. Garcia, last week. Upon our discussion with him, he shared with us that he thinks that Roa's sleep issues are biological in nature rather than behavioral or muscular. He thinks we have established a great bedtime routine and are consistent with the schedule (pat, pat on our backs!) and that Roa's brain is not letting him shut down to allow cycled sleep patterns.
Thus, we are trying a sleep medication, Doxepin, in a small dose. It is not a long lasting drug, so shouldn't affect his daily life or make him drowsy. It has very limited side effects. We were very thankful that we didn't have to go with the harsher drug choice of Valium or Baclofen.
Roa is on 4 nights with the medication. He takes it like a champ at bedtime with his snack and has been sleeping until about 3:30ish when he then needs only a position adjust or diaper change. He then wakes at his usual time of 5:30/6:00ish, BUT has been going back down the last few days to wake for the day between 7 and 8:00!!!! HEAVEN!!
We pray that this positive effect continues and Roa will make some nice gains developmentally with the additional sleep.... And.., make life a bit easier for the creaky ol bodies of Ma and Pa Thayer!
We have begun our school year session of Early Childhood Family Education class. This year, we are attending the Tuesday evening session so that Bryan can be a part of things and can take Roa after I have the baby. Roa LOVES school this year!! Running around the playground in his gait trainer, kicking balls at gym time, fingerpainting like a madman! He squeals and giggles during the group songs and activities and listens so quietly at story time. Daddy and I are so very proud of our boy!
Roa is the youngest one in the group of about 10. There is one other child with special needs in the group this year, a 4 year old little girl with a hearing impairment. It is really nice to see. The teacher, Janet, is very nice and tries to include Roa in everything given his physical differences. ECFE is such a wonderful program! We are impressed.
Roa continues to have weekly home-based Occupational therapy. He has speech therapy twice a month, Physical therapy, twice homebased/month, weekly at Courage and also has EI teacher services once per month. We have taken a break from ABM for the fall but continue with Craniosacral once per month. Dr. John and his chiropractic magic is apart of Roa's routine 3 times a month and also has helped with sleep.
We continue to travel weekly to Burnsville for Conductive Education with Ors and wish we could do more! Tomorrow, Laurie and Lynsey, Roa's OT and Sp/L therapists, are joining us to check out the amazing results of CE! I am excited to have them see all the things that Roa does with independence while working with Ors!
Gotta run, nap time is over for King Roa and he beckens! Nice to be "in touch" with my blogger family again!
Tuesday, September 14, 2010
Journey Into a New Stage
On Saturday, the Thayer family attended our church fall festival. It was a beautiful day and the event was hopping with families and activities. So many kids were running around with balloons, painted faces, and corn on the cob. Heaven to Roa!
We didn't bring Roa's gait trainer, as we didn't know what to expect for the festival layout. That was a mistake! As I said, kids were running everywhere and dancing to the band.... our Roa was NOT happy to be in his stroller, apart from things.
I have to say, this was possibly the most heart-wrenching moment of my life, aside from Roa's day of official diagnosis. As we sat at the picnic table with Roa in his stroller, I felt utterly beaten. Roa was laughing as two children chased each other around with a big blow-up bat. He arched in his stroller and looked at me longingly with eyes that said, "Come on, Mom! Let me GO!" Such joy in watching those other kids. Such frustation in being trapped in a body that doesn't cooperate.
I cried. Literally, broke down in front of the entire parish picnic and sobbed.
Bryan was great. "It's okay. Cry!", he said. "It is NOT fair!" My strong husband supported me while attempting to entertain our irriated son. He got Roa out of the stroller and helped him walk over to the children and the band stage and Roa was then, happy.
I sat there, with all the joyous family interactions around me, in pain. But, what a perfect place to pray and curse. Why God? Why my son? Will he know freedom of movement? Will he know friendship? Will he resent us when he can't join a group of kids at play? Will he be cursed with the ability to mentally process the fact that he is so very different? Does he already know that he can't do so many things that other kids can?
Bryan and I realize that we have hit a new stage in Rojo's journey. He is no longer the baby who stays home with Momma and is visited by "playmates" in the form of therapists. He isn't the wide-eyed observer in a playgroup setting, happy to just watch other kids at play.
He is now a little boy. Ready to run, laugh, and chase. He wants to be a part of activities going on around him and can't without help from us. Will he understand that we do all we can to include him? But yet, will WE do all we can to make him involved while being able to hold in the tears, fight the pain in our hearts that make us question EVERY DAY.... Why my son?
We didn't bring Roa's gait trainer, as we didn't know what to expect for the festival layout. That was a mistake! As I said, kids were running everywhere and dancing to the band.... our Roa was NOT happy to be in his stroller, apart from things.
I have to say, this was possibly the most heart-wrenching moment of my life, aside from Roa's day of official diagnosis. As we sat at the picnic table with Roa in his stroller, I felt utterly beaten. Roa was laughing as two children chased each other around with a big blow-up bat. He arched in his stroller and looked at me longingly with eyes that said, "Come on, Mom! Let me GO!" Such joy in watching those other kids. Such frustation in being trapped in a body that doesn't cooperate.
I cried. Literally, broke down in front of the entire parish picnic and sobbed.
Bryan was great. "It's okay. Cry!", he said. "It is NOT fair!" My strong husband supported me while attempting to entertain our irriated son. He got Roa out of the stroller and helped him walk over to the children and the band stage and Roa was then, happy.
I sat there, with all the joyous family interactions around me, in pain. But, what a perfect place to pray and curse. Why God? Why my son? Will he know freedom of movement? Will he know friendship? Will he resent us when he can't join a group of kids at play? Will he be cursed with the ability to mentally process the fact that he is so very different? Does he already know that he can't do so many things that other kids can?
Bryan and I realize that we have hit a new stage in Rojo's journey. He is no longer the baby who stays home with Momma and is visited by "playmates" in the form of therapists. He isn't the wide-eyed observer in a playgroup setting, happy to just watch other kids at play.
He is now a little boy. Ready to run, laugh, and chase. He wants to be a part of activities going on around him and can't without help from us. Will he understand that we do all we can to include him? But yet, will WE do all we can to make him involved while being able to hold in the tears, fight the pain in our hearts that make us question EVERY DAY.... Why my son?
Wednesday, September 8, 2010
Babble
Roa is doing alot more exploring of his mouth and sounds. We are so hopeful that it will lead to full blown speech in the years to come. This video shows just a glimpse of the sounds we are hearing. Roa, of course, doesn't perform so well for the camera! ;)
Mealtimes and toothbrushing times are when we hear the most. We tease him by saying, "Gross, are you spitting out your food?!" Which usually leads to giggles and more "talking". We are trying to take advantage of these times to really "wake up" that mouth.
Subscribe to:
Posts (Atom)
Mom and Me
