So the mixed bag that is Botox I spoke of in the last post, include the impact on smaller muscles. I will never do Botox on my sons hand again! He lost so much of his fine motor skills I cried a few times I the months proceeding the procedure. He went from having a nice pincer grasp and the ability when instructed to pick up small items like m&ms with 2 fingers. Amazing, if you knee how much therapy and everything else that went I to working on this for 2.5 years. Well one week post op no pincer. E Botox was supposed to help his thumb and stop ringman and tallman from tucking in. Well instead it affected pointer.
Pointer was not able to stay straight and was itself tucking in. So we went to using an overnight brace to stretch him fingers in an open position. We saw an OT both through EI and our insurance once a week each to help regain this skill and the ability to have control over this very important finger. We worked on weight bearing, doing wheelbarrows around the house. Leaning. Over peanut balls and supporting his weight si righty as he colored or did puzzles with lefty, etc...
Pincer is still not here bit I have great hopes for his second round of Constraint therapy that starts next week. Connor does have great skills and use of his right hand and arm and has been building muscle by climbing and doing a lot of obstacle course and PT. Which the two amazing PT's that have come into our lives in the last few months have made a world of difference for him. That will be another post.
Tuesday, October 21, 2014
Orthotists- I Shake my fist at you!!
Wow it has been a while since I posted. Time seems to move so fast. When last I wrote Connor was getting his second round of Botox. Well that was a mixed bag. I guess everything we do is either going to be reactive or proactive. The Botox was definitely reactive. It helped immediately stop Connor's foot from turning inward due to hits gastrocneumeus muscle getting to tight.
When we had it done we supposedly had a new foot AFO and night brace on the way. It took Well into July to have that delivered. Which pissed me off terribly. Botox only lasts 3 mons and within those three. Onths is your opportunity to train and build muscles to prevent or minimize spasticity once the Botox wears off. I thought I was getting a jump on things having Connor measured and fitted I. Late April for the braces and we would have them ready to go the second week of June right after the Botox injections. What was I thinking!
I need to remember the following issues next time that seem to arise for many families looking for timely orthotics.
The doctor needs to send the clinical notes over before the orthotist will order anything even though they are more then happy to measure your kid and sit on those measurements for months before this happens.
The orthotist a office will never call you to tell you this is why there is a delay.
The orthotist a office will wait to do anything until they have insurance approval.
They will never suggest you pay out of pocketed wait for reimbursement. You need to suggest this as a possibility.
Despite waiting for months for insurance approval to actually even begin making the brace, The insurance may not even pay ( this was the case for Connors left orthotic since it was not considered custom, WHAT).
They also will suggest that paying out of pocket will take up to a year to be reimbursed.
So it is now October and in august I brought back Connors left orthotic it was creating sores for him and cost over $100 that the insurance would not pay despite all we went through and the orthotist waiting on approval, which I mistakenly thought was for both orthotics. Had I known then what I know know I would have taken Connor to Shoe Train and just bought him his left orthotic for $38 and been able to leave the store with it. Now we are still getting bills for the the thing which I brought back to the orthotist on august 7th. They are saying it was custom and I am telling them it was within the manufacturers return period and it is not custom. I wonder how long this will drag out. They will win this in the short term though. We have to periodically go to the orthotist to fix his ill designed overnight brace and before they see you the office makes you pay any outstanding bills.
Anyhow that is our orthotics saga.
When we had it done we supposedly had a new foot AFO and night brace on the way. It took Well into July to have that delivered. Which pissed me off terribly. Botox only lasts 3 mons and within those three. Onths is your opportunity to train and build muscles to prevent or minimize spasticity once the Botox wears off. I thought I was getting a jump on things having Connor measured and fitted I. Late April for the braces and we would have them ready to go the second week of June right after the Botox injections. What was I thinking!
I need to remember the following issues next time that seem to arise for many families looking for timely orthotics.
The doctor needs to send the clinical notes over before the orthotist will order anything even though they are more then happy to measure your kid and sit on those measurements for months before this happens.
The orthotist a office will never call you to tell you this is why there is a delay.
The orthotist a office will wait to do anything until they have insurance approval.
They will never suggest you pay out of pocketed wait for reimbursement. You need to suggest this as a possibility.
Despite waiting for months for insurance approval to actually even begin making the brace, The insurance may not even pay ( this was the case for Connors left orthotic since it was not considered custom, WHAT).
They also will suggest that paying out of pocket will take up to a year to be reimbursed.
So it is now October and in august I brought back Connors left orthotic it was creating sores for him and cost over $100 that the insurance would not pay despite all we went through and the orthotist waiting on approval, which I mistakenly thought was for both orthotics. Had I known then what I know know I would have taken Connor to Shoe Train and just bought him his left orthotic for $38 and been able to leave the store with it. Now we are still getting bills for the the thing which I brought back to the orthotist on august 7th. They are saying it was custom and I am telling them it was within the manufacturers return period and it is not custom. I wonder how long this will drag out. They will win this in the short term though. We have to periodically go to the orthotist to fix his ill designed overnight brace and before they see you the office makes you pay any outstanding bills.
Anyhow that is our orthotics saga.
Monday, June 9, 2014
Botox Round 2 and beach week
We just got back from a week in the Outer Banks and the we all had a much needed vacation. It was nice to have a hiatus from all the appointments and running around. We relaxed on the beach, played in the sand, flew a colorful kite, built drip castles, played in the pool, and relaxed in the hot tub. We fit a lot into the week. That sort of relaxation only comes around once a year and it has to last us to next year.
It was nice we even had the grandparents join us and lots of fun was had by all. Since we rent the same house as last year Thomas was much looking forward to playing in the pool at the house with the legs, as he described it. Everyday thomas would tell us he wanted to stay 7 more days. If only we could... We took the kids bikes so they could ride them to the beach. Also Connor has given up the stroller so I wanted to make sure when he got tired he would have some wheels.
T.J. And Pappy made some adjustments to Connors tricycle to keep his feet on the peddles. This has been an ongoing issue for us. I tried Velcro to no avail. I tried tying with shoelaces. I went to a bike shop to get some help with toe clips. I know Kettler tricycles have them so I wanted to check them out. They told me they wouldn't fit. So I bought some new kids peddles and straps for them. Well they didn't fit either. Well the guys finally figured they would do some engineering and drilled holes and used bungee to straps to hold his feet on. That worked. For two days. It was good while it lasted. Back to the drawing board.
Tomorrow is Connors second round of Botox. I am excited and nervous. He is doing so well so I am scared it might hinder his progress. But he has been developing a very abnormal gait because of tone in his foot that is causing it to turn inward. A big tripping hazard. In addition he is still not striking his heal when he walks and his hamstrings are tight. He has a hard time straightening his right leg out when sitting. So it is time to do more Botox. His arm and hand are doing better the. His leg and foot but still tone is kicking in and making things harder for him. I am nervous about the affects on his hand but hopeful for those on his leg and foot. Go figure. He just has made so much progress, so much that I think some would not be able to notice an issue with his hand at all. But I notice how difficult some things are. When he holds a cup his two fingers have a hard time opening up and one of his thumb muscles is pulling his thumb downward.
We have plans for intensive OT and PT afterward infants and toddlers will be sign him 1 x each per week and then OT and PT each at children's National Medical Center. Connor also has a transition class for Infants and Toddlers to schedule in that busy week.
yes that vacation was much needed and I will think fondly of it in the coming weeks!
It was nice we even had the grandparents join us and lots of fun was had by all. Since we rent the same house as last year Thomas was much looking forward to playing in the pool at the house with the legs, as he described it. Everyday thomas would tell us he wanted to stay 7 more days. If only we could... We took the kids bikes so they could ride them to the beach. Also Connor has given up the stroller so I wanted to make sure when he got tired he would have some wheels.
T.J. And Pappy made some adjustments to Connors tricycle to keep his feet on the peddles. This has been an ongoing issue for us. I tried Velcro to no avail. I tried tying with shoelaces. I went to a bike shop to get some help with toe clips. I know Kettler tricycles have them so I wanted to check them out. They told me they wouldn't fit. So I bought some new kids peddles and straps for them. Well they didn't fit either. Well the guys finally figured they would do some engineering and drilled holes and used bungee to straps to hold his feet on. That worked. For two days. It was good while it lasted. Back to the drawing board.
Tomorrow is Connors second round of Botox. I am excited and nervous. He is doing so well so I am scared it might hinder his progress. But he has been developing a very abnormal gait because of tone in his foot that is causing it to turn inward. A big tripping hazard. In addition he is still not striking his heal when he walks and his hamstrings are tight. He has a hard time straightening his right leg out when sitting. So it is time to do more Botox. His arm and hand are doing better the. His leg and foot but still tone is kicking in and making things harder for him. I am nervous about the affects on his hand but hopeful for those on his leg and foot. Go figure. He just has made so much progress, so much that I think some would not be able to notice an issue with his hand at all. But I notice how difficult some things are. When he holds a cup his two fingers have a hard time opening up and one of his thumb muscles is pulling his thumb downward.
We have plans for intensive OT and PT afterward infants and toddlers will be sign him 1 x each per week and then OT and PT each at children's National Medical Center. Connor also has a transition class for Infants and Toddlers to schedule in that busy week.
yes that vacation was much needed and I will think fondly of it in the coming weeks!
Friday, January 3, 2014
Infants and Toddler review
So as busy as we have been I have been dreading January. Connor has a review coming up for Infants and Toddlers on the 14th. He has been doing so great using two hands for lots of things. Often I have to think about which hand he is using. His thumb still gets stuck sometimes and how he holds his wrist often needs correcting with Kinesio tape. I am actually more concerned lately about his walk. His heal has not been hitting the floor most of the time now. And he has spent a lot more time with shoes off with the holidays and I know that has not helped at all. On the 8th he will get an overnight orthotic to help stretch his heal cords. I am hoping this helps with walking. Today alone he tripped 4 times.
But my concern is that he has been hitting all his goals for I&T and they don't think they can justify seeing him as often as they do. To be fair though the testing they do does not take into account quality of movement only if he is doing it. So he gets points for using a pincer even if he only does it with his left hand. He get points for walking, jumping and running even though he does it atypically. So we have been warned that PT may disappear and OT will get scaled back considerably. It might disappear.
Our OT told us the only way she thinks she can stay on is because of the life skills section of the test. Connor is not dressing and undressing himself the way a two year old would. He doesn't pull off socks and shoes and put arms in his shirts or pull them off the way a two year old should. If this is what allows us to keep our OT then great but I think it is just a lack of opportunity that is the problem. I usually put Connor's braces and shoes on in the morning and we keep them on till the evening. They are double knotted. Not much opportunity to put on and take off socks and shoes.
Our therapy schedule has been so much a part of our lives I wonder what we will do with more time. Also I am so scared that Connor will lose ground.
But my concern is that he has been hitting all his goals for I&T and they don't think they can justify seeing him as often as they do. To be fair though the testing they do does not take into account quality of movement only if he is doing it. So he gets points for using a pincer even if he only does it with his left hand. He get points for walking, jumping and running even though he does it atypically. So we have been warned that PT may disappear and OT will get scaled back considerably. It might disappear.
Our OT told us the only way she thinks she can stay on is because of the life skills section of the test. Connor is not dressing and undressing himself the way a two year old would. He doesn't pull off socks and shoes and put arms in his shirts or pull them off the way a two year old should. If this is what allows us to keep our OT then great but I think it is just a lack of opportunity that is the problem. I usually put Connor's braces and shoes on in the morning and we keep them on till the evening. They are double knotted. Not much opportunity to put on and take off socks and shoes.
Our therapy schedule has been so much a part of our lives I wonder what we will do with more time. Also I am so scared that Connor will lose ground.
Christmas
Of course the boys have been super excited about Christmas. Thomas gets IT this year. He knows he has to be good to get presents. And we had an Elf "Elfie" keeping an eye on the situation. I totally recommend getting one of these. It is nice to be able to remind them that they are not being good for me but for Elfie and Santa. Both Thomas and Connor enjoyed looking for where Elfie was hanging out each morning. The boys were into preparing for Santa to. They went shopping for everyone on their list. I was trying to convey Christmas is more then just getting stuff it is also about giving. So in the spirit they picked stuff out at Kohls for everyone on their list.
Aunt Pat made beautiful blankets for the boys. They loved them and are still dragging them everywhere with them.
Connor got in a lot of bimanual therapy with all the unwrapping.
Love his expressions.
Thanks Aunt Stacey!
Pappy made the boys a "Widget" which we will continue to add to. The idea was to get a lot of the toys up higher to get Connor to stretch and Thomas to have fun with.
the widget at work.
A scooter board to race down the kitchen.
Connor's favorite was the firetruck tent.
We made a checklist for the night before. Which included napping,
cleaning up toys, vacuuming, making cookies for santa, and leaving
carrots and dip out for the reindeer.
The boys made out like bandits. And lots of stuff to motivate Connor's during therapy.
Trip to PA and Australians were here
Connor is growing so fast and becoming a very opinionated young chap. lol. I think his slogan for the last year would be "I can do it", if he had to choose one. He has been back to clicking the buckles together on the high chair and on his seatbelt. He stopped doing this when we started KKI in Sept. but evidently he has not lost the skill.
We have been pretty busy the last two months.
The boys got to visit some family friends in PA and sit on their quad and play with the tractor. As well as feed some horses.
We had friends, Kerrie and Frank and their kids Thomas and Alyssa,from Australia come visit for 2 weeks. Not long enough. The kids fell in love with all four of them. Thomas 12 and Alyssa 10 taught Thomas and Connor some Australian. Gday mate...
We had lots of fun with our Australian friends. We went to the zoo, the aquarium, National Harbor's ICE festival, and the Air and Space museum and a tour of the Capital building. Needless to say naps went out the window.
Connor made friends with the National Capital Police. They gave him and Thomas an official patch to.
Then we all went to NY to meet up with my girlfriends. Kerrie used to live with all of us 14 years ago. So it was quite a reunion and our group had really expanded in the past decade and a half.
The boys were so sad to see Kerrie and her family go. But we have promised that we will visit them in Australia once the kids are a couple years older. We can't wait another 14 years that is for sure.
We have been pretty busy the last two months.
The boys got to visit some family friends in PA and sit on their quad and play with the tractor. As well as feed some horses.
Tuesday, October 29, 2013
Using two hands more and more
Connor has been using both hands to climb up the slide at PT and in the backyard. He holds a bin of trains and takes it from room to room in the house with 2 hands. It is so much easier to hold his right hand when walking since his arm is easier to extend. And when we go pick up or drop off Thomas at school he has been using righty to hold onto the railings in the school. The only thing I have noticed is that sometimes the way he holds onto an object is not correct. (like a the object completely in his palm.) Something we have to work on. We got his report form KKI with all the end results and we are very pleased with how far he has come. Not that we needed the report to tell us that. We see it everyday.
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