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So sorry to EVERYONE for not posting yesterday. I was the one who fell asleep with Gavin. I took him in our bed and stayed with him trying to put him to sleep. Turns out I fell asleep instead and he got off the bed, all by himself apparently, to go find daddy!
Today started off super again and Gavin only woke up once last night. We drove to therapy and sat in the parking lot watching his cartoons on his portable DVD player. He actually said to me again, "lets go mommy." I said where? "In there", he said, pointing to therapy! Awesome!! So we went in. It is really super the way that they perform pediatric therapy. It is all through play so Gavin just thinks he is there to play with friends. I am a little bummed that I am not getting as much video as I had planned because Gavin works better when he cannot see mommy.
During the time I have been there, I have learned a lot more about how to help him at home. Today for home therapy we turned a folding patio table into a ramp, Gavin pushed toy cars down the ramp all with his left hand!! Amazing. All by himself. He is such a proud boy too! I am amazed it kept his interest so long. He has been using his left arm for everything. I say arm and not hand because we see gross motor but not really fine motor. He is however, starting to extend his fingers out, That is huge because when you have spastic cerebral palsy it is very hard to let go of objects placed in your hand. This is the first time Gavin's fingers have shown this type of promise!
Gavin is getting stronger by the day on his left side! Today in the waiting room he kept saying, "watch this mommy!" and he would jump up and down and turn in circles! Everyone there loves him and he loved everyone. Well, mostly the girls! One girl therapist specifically. She isn't even his therapist but she always takes the time to bend down and talk with him. He kissed her today. He is so funny!!
Another therapy I did at home today was to place a very small object in play dough and have him try to get it. It is often successful because the object is held down by the play dough while he moves his arm over it. He lands his hand just right to grasp the play dough and then we practice letting go. I guess it would be like if you or I had a tool and we where trying to grasp something with it, It is an extension of us when we use it but, we do not have complete control of it. His arm is moving his hand but he has very little control of his arm and almost none of his hand. We are trying to strengthen he weak muscles now that we have weakened his spastic ones with Botox and trying to create new pathways in his brain for using his left side. That i my understanding from a mom perspective. I am sure the doctor version is way more confusing but that is what I understand from talking with them.
Anytime he eats is therapy too. He starts off very hungry and motivated to try because he wants to eat! Once he is too frustrated we just feed him. Most of the at home therapy is common sense. Just get him to use lefty for everything. To pick out cloths, food, etc. We may not be as precise as the therapists but that is o.k. we are mom and dad and they say just get him using it and they will fine tune the rest. With his typical arm casted he is willing to try. Before he wouldn't even want to. Because of that the left arm is 2" smaller in diameter around the bicep. Hopefully he can build up his muscles on that arm and shoulder now!
Gavin has not seemed upset by the cast at all. We went into this with the understanding that if it was too upsetting for him we would cut it off. With almost one week down we are going strong! He has only asked us to remove it once. We said no and explained why. He said,"o.k." Wow, that was easy. The only real issue or challenge is at night. He is a thumb sucker and when he wakes up and realizes he cannot suck it he really waked up and starts yelling. The dentist does want him off the thumb so maybe we can kill two birds with one stone here! LOL Just a thought!
Well, I should go. Lot's to do. I have to set out food and cloths. Areic is playing with Gavin. We have really done this as a team. It would be so hard to do alone! Thank you so much to friends and family for the support and kind comments!! This may not be the end all solution but is is making a huge difference in Gavin's life. There is no end all solution to cerebral palsy. However, Gavin has a lot of love and support and will do very well in life!! Providing your child can tolerate this type of therapy, I strongly believe it will benefit them greatly
Thursday, January 27, 2011
Tuesday, January 25, 2011
1/25/2011
Hello all,
Today was a super day. Last night not so much. Gavin is having trouble sleeping in the cast and we are having trouble sleeping now too as we brought him in our bed. We worked so hard to get him to sleep in his own bed, After all of this we will probably have to start over again with him sleeping on his own. He is actually sleeping fine but keeping us up with his constant movement. What does that kid dream about? American Ninja Warrior? LOL.
Anyway, the most important thing is him getting his proper sleep because he is the one who has to do all the hard work. Areic is getting him back to sleep while when he wakes so I will not be too tired to take him on the 45 min. therapy ride there and 45 min. back trip every morning. I am Taking him to all the therapy, doing the at home therapy, and feeding and bathing Gavin. Areic is cleaning the house, getting us food, doing the laundry, and helping in the middle of the night. It is working very well.
We left the house at 07:30. He went to therapy for a few hours and did outstanding!! We then went to St Joseph's Hospital to do a follow up with the Dr. who injected the Botox in Gavin's arm. She was extremely happy with the results this time. It worked so great this time! I wish I had pictures or video today but, Gavin refused to work or get off my lap while I was watching. The min. I walked out he began to cry. Literally thirty seconds later I heard him laughing and working. When they told me he was all done I went back to retrieve him only to find him holding a ball in his left arm and flirting with a young girl therapist. Ya, that is the Gavin I know!!
Still havimg trouble with utube. Areic will have to help me load my previous video. The rest of the day Gavin was in great spirits. He is eating a lot more. With my help he held a hamburger and milk tonight at dinner with his left arm/hand. He reached for Mr. potato heads hat and knocked it off after his second attempt! He pet the neighbors cat by moving his left arm toward her and placing his hand on her. Then he kissed her. My sweet little boy is asleep on the couch in his wonderful daddy's arms. All is is good. All is right! Night everyone.
Today was a super day. Last night not so much. Gavin is having trouble sleeping in the cast and we are having trouble sleeping now too as we brought him in our bed. We worked so hard to get him to sleep in his own bed, After all of this we will probably have to start over again with him sleeping on his own. He is actually sleeping fine but keeping us up with his constant movement. What does that kid dream about? American Ninja Warrior? LOL.
Anyway, the most important thing is him getting his proper sleep because he is the one who has to do all the hard work. Areic is getting him back to sleep while when he wakes so I will not be too tired to take him on the 45 min. therapy ride there and 45 min. back trip every morning. I am Taking him to all the therapy, doing the at home therapy, and feeding and bathing Gavin. Areic is cleaning the house, getting us food, doing the laundry, and helping in the middle of the night. It is working very well.
We left the house at 07:30. He went to therapy for a few hours and did outstanding!! We then went to St Joseph's Hospital to do a follow up with the Dr. who injected the Botox in Gavin's arm. She was extremely happy with the results this time. It worked so great this time! I wish I had pictures or video today but, Gavin refused to work or get off my lap while I was watching. The min. I walked out he began to cry. Literally thirty seconds later I heard him laughing and working. When they told me he was all done I went back to retrieve him only to find him holding a ball in his left arm and flirting with a young girl therapist. Ya, that is the Gavin I know!!
Still havimg trouble with utube. Areic will have to help me load my previous video. The rest of the day Gavin was in great spirits. He is eating a lot more. With my help he held a hamburger and milk tonight at dinner with his left arm/hand. He reached for Mr. potato heads hat and knocked it off after his second attempt! He pet the neighbors cat by moving his left arm toward her and placing his hand on her. Then he kissed her. My sweet little boy is asleep on the couch in his wonderful daddy's arms. All is is good. All is right! Night everyone.
Monday, January 24, 2011
Jan 24th. CIMT Therapy. The cast goes on!
Hello all. Gavin woke up in a super good mood at six. We let him attend Pre-School one last morning before the therapy starts. Gavin loves school!! He took a nap right after lunch and we drove him to the orthopedic surgeon to get his cast.
So we showed up at the therapy office and the doctor came in. he told us that he does not agree with this type of therapy. Everyone has an opinion!! We assured him we have done all of the research. We assured him if it was too hard on our son we would not continue. We also told him this is the second time we have done this and we saw results. He appeared very surprised as I explained to him the origin and history of CIMT. After I was done he actually said that maybe our son will change his mind on this therapy and be a resource for other parents. Now that is what I am talking about!!
Gavin was extremely good. Not even a tear as he received his cast. He cried last time but he is a big boy now! Almost three. We are able to explain things to him seems very smart!
Immediately after his cast he started a therapy session with his regular OT. He didn't even try to use the casted arm! He immediately used his left! WOW! He pushed cars down a ramp, put pegs on a board, and little bannannas in a monkey's mouth! The therapist was helping him a lot but that is the point. We want him to be as successful as possible with his affected hand so he does not get frustrated and give up, The therapist was amazed to see tricep extention on the very first day. Gavin is a really determined kid though!
After therapy we took him to the park so he could just be a kid. Taking a bath was a challenge with a cast. Areic made a sponge bath sound fun so we did a sponge bath and acted like it was the best bath ever!! LOL.
At dinner Gavin put some food up to his mouth with his affected hand and a lot of help. He became very frustrated so we fed him mostly by hand. A lot of the therapy is to be done by us at home but we do not want to burn him out the first day and he was starving. So after using his hand a while we helped.
After dinner we played and went over colors. He was being a typical boy and banging the cast on all the furniture so we wrapped it in bed foam! Areic is playing with him until bedtime.
we are getting up early for more therapy! Take care........
So we showed up at the therapy office and the doctor came in. he told us that he does not agree with this type of therapy. Everyone has an opinion!! We assured him we have done all of the research. We assured him if it was too hard on our son we would not continue. We also told him this is the second time we have done this and we saw results. He appeared very surprised as I explained to him the origin and history of CIMT. After I was done he actually said that maybe our son will change his mind on this therapy and be a resource for other parents. Now that is what I am talking about!!
Gavin was extremely good. Not even a tear as he received his cast. He cried last time but he is a big boy now! Almost three. We are able to explain things to him seems very smart!
Immediately after his cast he started a therapy session with his regular OT. He didn't even try to use the casted arm! He immediately used his left! WOW! He pushed cars down a ramp, put pegs on a board, and little bannannas in a monkey's mouth! The therapist was helping him a lot but that is the point. We want him to be as successful as possible with his affected hand so he does not get frustrated and give up, The therapist was amazed to see tricep extention on the very first day. Gavin is a really determined kid though!
After therapy we took him to the park so he could just be a kid. Taking a bath was a challenge with a cast. Areic made a sponge bath sound fun so we did a sponge bath and acted like it was the best bath ever!! LOL.
At dinner Gavin put some food up to his mouth with his affected hand and a lot of help. He became very frustrated so we fed him mostly by hand. A lot of the therapy is to be done by us at home but we do not want to burn him out the first day and he was starving. So after using his hand a while we helped.
After dinner we played and went over colors. He was being a typical boy and banging the cast on all the furniture so we wrapped it in bed foam! Areic is playing with him until bedtime.
we are getting up early for more therapy! Take care........
Sunday, January 23, 2011
First Post 2011. CIMT
Hello all! Been trying to keep up our blog but with a full time job and all the therapy I hardly find the time. I laugh since so many people asked me to update it this year. It shows four followers but, apparently there are several secret stalkers! LOL!
So much has happened since the last blog. Gavin is walking, running, and jumping! He will be three in March and has really started talking a lot more. We do not always understand all of his speech but, if we consider what is going on around us then we can usually figure it out.
I am off work for eight shifts to take Gavin to an intense therapy. It is called Constraint Induced Movement Therapy. They cast the normal arm of the child and force them to try to use the affected arm. We originally got him into the program in Alabama but decided to stay closer to home. Historically, Gavin is a horrible traveler.
We have tried this therapy before with excellent results. Gavin did not even know he had an arm until the first round of CIMT. Now we want to try to get him to use his affected arm as a helper arm.
What is a helper arm? When a child has cerebral palsy they have damage to their brain. His left side is the affected because there is damage to that side where his motor control is in his brain. There is actually nothing wrong with his arm or leg but it receives a poor signal from his brain. As a result his left side is weaker, smaller, and only has gross motor function. A helper hand/arm will probably have no fine motor skills. We hope to train it to hold down paper when he writes, hold an calculator, things like that.
I will be blogging about the experience and progress. I will be setting up movies on utube and facebook as well. I will be doing this because of the several other moms that I know who have children with Hemiplegic Cp like Gavin. I want to help them decide if this is right for their children.
There are several people who do not believe in this type of therapy and do not believe it is proven. I am a true advocate of this therapy because I have seen first hand what it can do. Also, there is enough research that insurance companies help to pay for a portion of it. It was originally developed by Edward Taub. He cut half the brains out of monkeys to see if they could regenerate. They did! He tried it on adult stroke patients. It worked. Recently it been used on children with Hemiplegic CP. It works!! So when Gavin is older and able to travel better we will be making the trip to Alabama. For now we will be making a local choice of therapists. This therapist is amazing but, we definitely want to go to the source.
Tomorrow will be a long day. The cast goes on. Take care...
So much has happened since the last blog. Gavin is walking, running, and jumping! He will be three in March and has really started talking a lot more. We do not always understand all of his speech but, if we consider what is going on around us then we can usually figure it out.
I am off work for eight shifts to take Gavin to an intense therapy. It is called Constraint Induced Movement Therapy. They cast the normal arm of the child and force them to try to use the affected arm. We originally got him into the program in Alabama but decided to stay closer to home. Historically, Gavin is a horrible traveler.
We have tried this therapy before with excellent results. Gavin did not even know he had an arm until the first round of CIMT. Now we want to try to get him to use his affected arm as a helper arm.
What is a helper arm? When a child has cerebral palsy they have damage to their brain. His left side is the affected because there is damage to that side where his motor control is in his brain. There is actually nothing wrong with his arm or leg but it receives a poor signal from his brain. As a result his left side is weaker, smaller, and only has gross motor function. A helper hand/arm will probably have no fine motor skills. We hope to train it to hold down paper when he writes, hold an calculator, things like that.
I will be blogging about the experience and progress. I will be setting up movies on utube and facebook as well. I will be doing this because of the several other moms that I know who have children with Hemiplegic Cp like Gavin. I want to help them decide if this is right for their children.
There are several people who do not believe in this type of therapy and do not believe it is proven. I am a true advocate of this therapy because I have seen first hand what it can do. Also, there is enough research that insurance companies help to pay for a portion of it. It was originally developed by Edward Taub. He cut half the brains out of monkeys to see if they could regenerate. They did! He tried it on adult stroke patients. It worked. Recently it been used on children with Hemiplegic CP. It works!! So when Gavin is older and able to travel better we will be making the trip to Alabama. For now we will be making a local choice of therapists. This therapist is amazing but, we definitely want to go to the source.
Tomorrow will be a long day. The cast goes on. Take care...
Saturday, February 13, 2010
Gavin's Road to Walking!!
On therapy on Friday, Gavin did outstanding!! He took a total of 10 unassisted steps here and there throughout therapy!! He is really close!
Later that day we took him to check his brace on his leg and possibly fit him for a new brace called the Kiddie Gate. He is so tiny that he has to wait to get a kiddie gate until he grows into the smallest size. Ya, he is my kid alright LOL. So I finally have a bit more of an understanding of why it is so hard for Gavin to walk. He has spasticity in one of his leg muscles and that is from a bad signal from his brain caused by his brain injury. That I knew. What I did not know is that the opposing leg muscle has low tone. Not normal tone . It would kind of be like your bicep and tricep fighting one another. Although this bothered me to understand exactly why I thought about it. Funny that sometimes I think that if I understand something it will make me feel better but that is not always the case. After thinking about it I couldn't believe that he is almost walking! That he WILL walk. What an amazing guy he is! When he is older I can tell him that even at two he had the will of a lion to accomplish things!! So even though it is so hard for him and I hate to watch my little bot struggle I believe it will make him into a great and humble individual. No matter how hard he has to try or how much therapy he does he always has a ,"hi" and that very slightly crooked little million dollar smile!!!
Later that day we took him to check his brace on his leg and possibly fit him for a new brace called the Kiddie Gate. He is so tiny that he has to wait to get a kiddie gate until he grows into the smallest size. Ya, he is my kid alright LOL. So I finally have a bit more of an understanding of why it is so hard for Gavin to walk. He has spasticity in one of his leg muscles and that is from a bad signal from his brain caused by his brain injury. That I knew. What I did not know is that the opposing leg muscle has low tone. Not normal tone . It would kind of be like your bicep and tricep fighting one another. Although this bothered me to understand exactly why I thought about it. Funny that sometimes I think that if I understand something it will make me feel better but that is not always the case. After thinking about it I couldn't believe that he is almost walking! That he WILL walk. What an amazing guy he is! When he is older I can tell him that even at two he had the will of a lion to accomplish things!! So even though it is so hard for him and I hate to watch my little bot struggle I believe it will make him into a great and humble individual. No matter how hard he has to try or how much therapy he does he always has a ,"hi" and that very slightly crooked little million dollar smile!!!
Friday, February 5, 2010
2/5 Gavin's First 3 steps!!!!
WOW! I decided to try to keep up with the blog and now I am glad I did! I took Gavin to see his new physical therapist today. It is the second time he has met her. Areic took him last week. He has seen her around for months because his OT is in the same building. We walked in and Gavin said hi to her and was perfectly happy going off with her to work! I could not believe how fast he took to her! Of course he is a flirt and he loves pretty girls! LOL
I was secretly watching them for an hour through a mirror. All of a sudden Gavin took three steps all by himself before leaning over and sitting down! My eyes filled with tears! All I could think was thank god they are all right. He is going to walk. They tell me he will but a mom has to see it.
After the session she told me she believed he would walk by about two more months! She thinks by the time he is five he will run. Although he will always most likely wear a brace she feels it will be very subtle that he has issue with his leg. We all know his arm is most affected. She also noticed how smart he is! That's my boy! He was so tired after all that and he took a nap after eating a huge lunch.
When he woke up we went to the zoo for two hours. We rode the train and the sky ride. He was not even scared up high! He kept narrating all the animal sounds and we passed over the different animals! He pointed to the ones he did not know and expected mama to fill him in! He hated the petting zoo. Apparently, the animals look good from far away and on paper but, he wants no part in an up close and personal relationship! So funny! We left with a place mat that says Gavin and had a bunch of animals on it. He looked at it the whole way home making all the sounds for me!
Great Day!!
I was secretly watching them for an hour through a mirror. All of a sudden Gavin took three steps all by himself before leaning over and sitting down! My eyes filled with tears! All I could think was thank god they are all right. He is going to walk. They tell me he will but a mom has to see it.
After the session she told me she believed he would walk by about two more months! She thinks by the time he is five he will run. Although he will always most likely wear a brace she feels it will be very subtle that he has issue with his leg. We all know his arm is most affected. She also noticed how smart he is! That's my boy! He was so tired after all that and he took a nap after eating a huge lunch.
When he woke up we went to the zoo for two hours. We rode the train and the sky ride. He was not even scared up high! He kept narrating all the animal sounds and we passed over the different animals! He pointed to the ones he did not know and expected mama to fill him in! He hated the petting zoo. Apparently, the animals look good from far away and on paper but, he wants no part in an up close and personal relationship! So funny! We left with a place mat that says Gavin and had a bunch of animals on it. He looked at it the whole way home making all the sounds for me!
Great Day!!
Thursday, February 4, 2010
Gavin is almost 2!!!
As usual I have the best intentions but the worst amount of availability to keep up with this blog!
So what in the heck is going on with Gavin these days? Gavin is doing amazing! He holds down a busy schedule and has evolved from our baby boy to our toddler, Gavasaurus!!!
He completed the forced movement therapy on his arm. He can give you a high five, touch light switches on and off, and touch things with his left arm and hand! It is still very awkward but, it is so amazing! Prior to that therapy we NEVER saw him use it let alone use it when being asked!
Gavin's therapists and neurologist all believe Gavin is very close to walking. He spends most of his free time cruising the furniture and the walls! He opens and closes door for hours while walking around them supporting himself with the handle! He pulls up on everything to attain a standing position and walks circles around the coffee table. He has stood for a min. unsupported before sitting down. His legs are very strong we are just working on balance.
Gavin has Botox in his hand, arm, and leg to break up the spasticity. He has a brace on his leg and foot to help keep his foot in a good position.
Gavin is a very bright little boy! He is measuring out cognitively at this time at 21 months old! He is delayed physically but really catching up! He has a pretty good vocabulary and is starting to string two words together! His words although not all perfect include, more, dada, mama, bear, hi, bye, nana(banana), bath, open, up, down, on, bug, block. His animal sounds include a tiger, pig, dog, cat, duck, cow, elephant, snake, and his favorite is a Horse! He sings too! lalala,adaada,lalala
Gavin loves to feed ducks, slide down slides, take wagon rides, practice riding his scooter, take baths, play with his toys, practice walking, look through his books, wrestle with his dada, cuddle with his mama, listening to music, and hang out with his grandpa!
Gavin is such a sweet and happy little guy! He is so social and bright! We cannot take him anywhere without him greeting everyone and anyone with a smile and a hi! Once he charms his way into their lives he tells them I am his mama! He just melts my heart. He is always told how very handsome he is! He is a huge flirt! Although he does have that occasional toddler temper and meltdown. The terrible two's are upon us! He knows what he wants and when he wants it.
So what does the future hold for Gavin? We are currently tryimng to get him in a three week therapy that will cast his arm again. This will be more intense and longer each day than the previouse therapy. It will be out of state where they invented this therapy. The 6 week casting we did here where he saw a therapist twicw a week showed us such great results we are encouraged to try the better one. He will work three hours a day with a therapist. There is another where he will work 6. We just have to see which one we can get him into.
So what about fun for Gavin? Areic decided to take us all on vacation!!! We have not been on vacation in forever! My birthday is in Feb, Gavin's is in March. Areic's is in April. So Areic great idea is to take us all to DISNEYLAND!!!! YAY! If anyone deserves to go to Disneyland than I believe it is Gavin the hardest working little therapy guy I know!!! Ahhh I am so excited!
As usual I will try to keep up this blog but, who knows!!! LOL
So what in the heck is going on with Gavin these days? Gavin is doing amazing! He holds down a busy schedule and has evolved from our baby boy to our toddler, Gavasaurus!!!
He completed the forced movement therapy on his arm. He can give you a high five, touch light switches on and off, and touch things with his left arm and hand! It is still very awkward but, it is so amazing! Prior to that therapy we NEVER saw him use it let alone use it when being asked!
Gavin's therapists and neurologist all believe Gavin is very close to walking. He spends most of his free time cruising the furniture and the walls! He opens and closes door for hours while walking around them supporting himself with the handle! He pulls up on everything to attain a standing position and walks circles around the coffee table. He has stood for a min. unsupported before sitting down. His legs are very strong we are just working on balance.
Gavin has Botox in his hand, arm, and leg to break up the spasticity. He has a brace on his leg and foot to help keep his foot in a good position.
Gavin is a very bright little boy! He is measuring out cognitively at this time at 21 months old! He is delayed physically but really catching up! He has a pretty good vocabulary and is starting to string two words together! His words although not all perfect include, more, dada, mama, bear, hi, bye, nana(banana), bath, open, up, down, on, bug, block. His animal sounds include a tiger, pig, dog, cat, duck, cow, elephant, snake, and his favorite is a Horse! He sings too! lalala,adaada,lalala
Gavin loves to feed ducks, slide down slides, take wagon rides, practice riding his scooter, take baths, play with his toys, practice walking, look through his books, wrestle with his dada, cuddle with his mama, listening to music, and hang out with his grandpa!
Gavin is such a sweet and happy little guy! He is so social and bright! We cannot take him anywhere without him greeting everyone and anyone with a smile and a hi! Once he charms his way into their lives he tells them I am his mama! He just melts my heart. He is always told how very handsome he is! He is a huge flirt! Although he does have that occasional toddler temper and meltdown. The terrible two's are upon us! He knows what he wants and when he wants it.
So what does the future hold for Gavin? We are currently tryimng to get him in a three week therapy that will cast his arm again. This will be more intense and longer each day than the previouse therapy. It will be out of state where they invented this therapy. The 6 week casting we did here where he saw a therapist twicw a week showed us such great results we are encouraged to try the better one. He will work three hours a day with a therapist. There is another where he will work 6. We just have to see which one we can get him into.
So what about fun for Gavin? Areic decided to take us all on vacation!!! We have not been on vacation in forever! My birthday is in Feb, Gavin's is in March. Areic's is in April. So Areic great idea is to take us all to DISNEYLAND!!!! YAY! If anyone deserves to go to Disneyland than I believe it is Gavin the hardest working little therapy guy I know!!! Ahhh I am so excited!
As usual I will try to keep up this blog but, who knows!!! LOL
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