After my last post, Laurie, Roa's OT and Lynsey, Roa's speech therapist and I had a good long talk about how we will approach Roa's therapy time from here on. It was great to get things out in the open about Bryan and my worries and frustrations with Roa's progress in the area of communication. Lynsey was very receptive to my thoughts on therapy and we will be looking continuing with our twice a week session along with possibly adding some private speech therapy weekly. We also talked about all the therapists being more consistent with the routine and incorporate repetition of songs and basic sounds to increase Roa's interest and chances of imitation. We are so pleased with the Birth to 2 staffs willingness to hear us out and attempt to meet our needs. They are very family friendly.
One of the things that has come up with other speech therapists and parents of kids with communication needs is the current use of the Ipad for assistive tech! What an exciting avenue of language that this mainstream instrument can give to people with disabilities. Lynsey wants to start Roa's attempts with the Ipad in January. If things go well, Bryan and I will have to consider purchasing our own Ipad for Roa- not a cheap purchase, by anymeans, but more reasonably priced compared to some communication aids out there. We are optimistic about it!
In other therapy news, Roa's new gait trainer was supposed to be here last Friday, but Reliable Medical mixed up the order and we are once again... waiting. Roa still continues to use the school miniPacer, but we are excited to try the next size up and have Roa's very own GT! Hopefully, soon.... nothing ever goes smoothly, I must say...
January 3, Roa is scheduled for his next round of Botox. We are seeing alot of tightening of his adductors with attempts at sitting. He also has increased tightness of his hands while grasping. We are happy botox is on it's way.
Now, off to research funding sources for an Ipad while my boys nap!.....
Tuesday, December 14, 2010
Tuesday, December 7, 2010
Happiness is... a baby brother
Ok, so Roa hasn't completely been laughing and joyous over little Gunnar's arrival. Honestly, we are getting a little two year old tantrum time and alot of tears over minor things, but that is to be expected.
We are definitely entering the communication frustration stage in Roa's life. He is not yet talking. Not yet even giving us a 'yes or no" verbally or gesturally. We are ALL frustrated and tired of the cry for no and giggle for yes... the scream if we don't understand what King Roa desires.
Roa receives speech/language therapy twice a month through the school district. However, we haven't seen much progress with the therapy. I am an "old school" Early Childhood teacher and feel that motor-based delays should be supported with an oral motor approach along with drill and practice with beginning sounds. The philosophy of today's speech therapy seems to be language-based "give them words, talk to them, and ..wait"
I am not a patient waiter, I guess.
I am frustrated that Roa can identify shapes, animals, objects, colors, even a few numbers. He can follow simple directions and comprehends so much! Yet expressively, he just laughs, cries, screams, and gives us a few occasional sounds and attempts at words.
We've tried the assistive tech. switches and communication board. We tried the picture approach. He's not interested.
Speech therapists and parent of "speech" kids, PLEASE respond and help me sort through my frustation!
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!
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