Brendan had botox injections yesterday. I think this is the 7th time but honostly I have lost count. We used to go to Boston for Botox but recently have became involved with an amazing neurologist here in RI. She is one of the only Dr.'s in our state who administers the botox and she has been extremely helpful over the past year. Brendan was very nervous days prior to his injections. This was the very first time he was anxious about going to the hospital. He is getting older and understands everything. He also listens to EVERYTHING anyone is saying and sometimes I am not mindful of that. He does well once you explain everything to him. I think he was nervous because just 6 months ago he went to the hospital for botox injections, double eye surgery, and an echocardiogram. I am sure he remembers that day!
He is put under anesthesia for the procedure which always has me on pins and needles until he is awake. I think that was his 11th time being under and it NEVER gets any easier. I really need to remember he vomits after anesthesia and not while he is in the hospital....oh no....it has to be on the drive home! Yes he had juice and banana all over himself, his booster seat, and my van. Oh Brendan. He tried to get it into this miniscule bin they gave him to hold. I am pretty sure not even a drop made it in. But what can you do. My husband cleaned the car while I cleaned Brendan, his booster, and winter jacket. :)
He was out of it for a few hours and all he wanted to do was eat! He snapped out of it after a popsicle and then ate all of his soup. He was back to himself 3 hours after he woke up so that was nice. He is very loose which is always strange. I can swing him around my hip with ease to carry him around. He also had some injections in his right arm and pecs which makes getting a shirt on and off a breeze! Too bad they didn't stay like that forever but I'll take it. We can work on range of motion and building muscle mass and more control over the next few months. He seems to always improve!
Thankfully for us Botox works for Brendan. We just don't know how much longer it will. He is a troooper as he always is and he keeps on going day by day wihout ever asking WHY? He just doesn't know yet that not every child goes through what he goes through and I will keep it that way for as long as I can.
I always wonder how much more I can endure. I will never know that answer I assume. He needs hip surgery to remove some screws in the very near future and then he will need a sedated heart cath which will reveal what needs to be done to close those stubborn holes in his heart. I may know how much I can handle if they tell me my boy will require open heart surgery. I may need a therapist at that point! But for now I will keep my head high and try and keep those tears away because we made it through another stressful day.
It was Thanksgiving day back in 2002. I was only 23 years old and my life forever changed on that day. I had a placental abruption and Brendan was born at 33 weeks. He lost oxygen during delivery due to incompetent care but was a fighter and turned 17 this year. My journey in life over the past 17 years took many turns I was not expecting but I try to stay strong and have my husband by my side even when I am not.
Wednesday, March 3, 2010
Monday, January 25, 2010
SDR update
Well after a few new Dr. appointments we have been told that SDR is not for Brendan. A specialist in MA feels that once we take away all of Brendan's tone he will actually regress and not progress. Some children with CP rely on their tone to be mobile. Brendan happens to be one of those children which is very unfortunate. I guess it is somewhat bittersweet because SDR is not something I wanted to put my child through and wasn't even sure if I was mentally strong enough to actually go through with it but in the end it seemed like it would make Brendan's future easier and less painful.
We still haven't given up completely. We can still fly to St. Louis and listen to what Dr. Park has to say regarding the surgery. We are also going to try a baclofen pump trial to see how Brendan's body would really act without having any tone. The procedure is a spinal tap and risks are involved but at least we will have a better sense at what SDR would do to his body.
Unfortunately we have to wait a while before trying the pump trial. Brendan only weighs 39 lbs which is on the small side. He also has 2 surgeries coming up. He needs to have screws removed from his hip that have been in since his right hip osteotomy in December 2007. He risks infection since they have to take them out of his bone. He also needs to have the 3 holes in his heart closed. He will be having a sedated heart cath in July which will determine if my little boy needs open heart surgery or if his tissue can handle a MUCH less evasive and simpler procedure to close the holes. Obviously his little body can only handle so much in a year so we have to make those two surgeries priority. He tends to lose weight after surgery as well so he will be even smaller. He dropped to 27lbs after his hip surgery.
So many decisions all the time for my little man. I haven't even gotten to his cortical visual impairment update but that will have to be another day.
I will try and post new pictures soon. He is getting tall and very hard for me to lift as I am only 5'1"!! I am fortunate that he doesn't weigh very much yet!! :)
We still haven't given up completely. We can still fly to St. Louis and listen to what Dr. Park has to say regarding the surgery. We are also going to try a baclofen pump trial to see how Brendan's body would really act without having any tone. The procedure is a spinal tap and risks are involved but at least we will have a better sense at what SDR would do to his body.
Unfortunately we have to wait a while before trying the pump trial. Brendan only weighs 39 lbs which is on the small side. He also has 2 surgeries coming up. He needs to have screws removed from his hip that have been in since his right hip osteotomy in December 2007. He risks infection since they have to take them out of his bone. He also needs to have the 3 holes in his heart closed. He will be having a sedated heart cath in July which will determine if my little boy needs open heart surgery or if his tissue can handle a MUCH less evasive and simpler procedure to close the holes. Obviously his little body can only handle so much in a year so we have to make those two surgeries priority. He tends to lose weight after surgery as well so he will be even smaller. He dropped to 27lbs after his hip surgery.
So many decisions all the time for my little man. I haven't even gotten to his cortical visual impairment update but that will have to be another day.
I will try and post new pictures soon. He is getting tall and very hard for me to lift as I am only 5'1"!! I am fortunate that he doesn't weigh very much yet!! :)
January 2010
WOW it is 2010. It looks strange, it sounds strange. I can't believe how fast time is going by. Brendan is 7 years old. He is constantly telling me "mommy I'm so big, I'm not little anymore, right?" He loves getting big. He has been doing very well lately. He is always progressing in his speech. He is talking in fairly clear sentences. He is correcting his own words that sound a bit off. He can say the sound F for the first time this past week. It is very exciting. He still needs a reminder but if you ask him to say a word that starts with f...he can!!! It brings tears to my eyes. He has come so far. At the age of 2 he said one word, bye. That is because he loved when therapists and doctors were done and he would shout BYE!!! I am pretty sure (my memory is fading) that he didn't say much more until the age of 4. He could say a few words here and there but not much so to think at age 7 he would be speaking (fairly clear) full sentences is truley amazing. I am thankful he is always progressing in all areas.
He is getting stronger and stronger as the years go by and he loves it! He now asks to put the forks on the table for dinner so I hand him 5 forks and while in his walker, he holds onto those 5 forks and walks to the table and puts a fork at each place. As I see him struggle to walk around each chair and get that fork onto the table he has the biggest smile plastered on his face. You can tell he is so proud of himself. He likes to 'help' make dinner and lunches. Now his helping is constantly wheeling over my toes in that walker or eating everything we take out for lunches but he loves it and it makes him feel big. He can now open the dishwasher and fridge doors in his walker without falling onto the floor. He can flip on and off light switches without struggling. This only too a few weeks to master. I don't even get nervous he will crash to the floor anymore. He is getting confident and strong and I love it!!!
I just can't believe he is 7. That just sounds so old. I think of the past 7 years and how difficult some days have been, how much he has been through, how much he has endured, and of course how much he has progressed. He is always such a trooper. He is a fighter and he gets through every procedure and surgery without much setback. He is the type of child who flirts with all the nurses in his scrubs and is smiling and walking around in his walker thinking he owns the place until he is put under. He is amazing!!
He is getting stronger and stronger as the years go by and he loves it! He now asks to put the forks on the table for dinner so I hand him 5 forks and while in his walker, he holds onto those 5 forks and walks to the table and puts a fork at each place. As I see him struggle to walk around each chair and get that fork onto the table he has the biggest smile plastered on his face. You can tell he is so proud of himself. He likes to 'help' make dinner and lunches. Now his helping is constantly wheeling over my toes in that walker or eating everything we take out for lunches but he loves it and it makes him feel big. He can now open the dishwasher and fridge doors in his walker without falling onto the floor. He can flip on and off light switches without struggling. This only too a few weeks to master. I don't even get nervous he will crash to the floor anymore. He is getting confident and strong and I love it!!!
I just can't believe he is 7. That just sounds so old. I think of the past 7 years and how difficult some days have been, how much he has been through, how much he has endured, and of course how much he has progressed. He is always such a trooper. He is a fighter and he gets through every procedure and surgery without much setback. He is the type of child who flirts with all the nurses in his scrubs and is smiling and walking around in his walker thinking he owns the place until he is put under. He is amazing!!
Monday, November 16, 2009
SDR Selective Dorsal Rhizotomy and my suddenly dare devil son!!
Well it is time to focus on our decision again for Brendan having SDR. The results are amazing. I need to figure out how to post some video clips of children who have had SDR. The surgery seems like a miracle. I realize it will take years and a ton of therapy to see the results we are hoping for but the results that can be obtained are almost unimagineable. I keep having dreams of Brendan standing up and walking on his own. I love those dreams. I have never seen my child stand up tall. I don't even know what he would look like without being hunched over with his knees bent. I hope one day I can see this vision with my own eyes! I have never been able to get a true height on him because the Dr.'s don't lay him down and measure him like an infant anymore. We just guess. I know he is getting very tall because at my wopping 5'1" frame he is getting very difficult to carry. He stands right below my chest when I hold him up and that isn't even standing tall. They grow so fast!
He is becoming a very daring little boy lately. He actually fell off the couch and out of his walker twice this weekend. I think his vision has improved since his strabismus surgery this past August. He has found the light switches in our house and he seems to be much more aware of his surroundings all of the sudden, in turn creating my dare devil son.
He has never been able to lift one arm off his walker and now he is doing this and turning on and off a light switch. AMAZING! He is also enjoying opening and closing the dishwasher. Well this is how he fell out of his walker not once but twice! The first time I cought him but I wasn't fast enough the second time. He has no balance and once his mind has any sort of emotion his arms tighten up especially at the elbow. He has absolutely no reflexes so his arms never protect him against a fall which often means his head is what hits first. :( Luckily his back hit the wheel on his walker first and then his head lightly bumped the ground as he slipped out of my arms. BUT I am happy that he is getting out of his comfort zone and actually trying to do these things. I am also happy that he has gained some muscle mass to be able to do this things. Holding himself up in that walker with one arm is a massive feat!! I am so proud of him but I envision many more bumps and bruises down the road. He is a mad man in his walker. He has no fear. He will yank it over bumps and curbs and anything in his way without realizing that it may tip over with him in it. This has also happened and is not a pleasant site to see! BUT he is a boy and that is what boys do and how happy do you think it makes me to be able to say something like that!
He is becoming a very daring little boy lately. He actually fell off the couch and out of his walker twice this weekend. I think his vision has improved since his strabismus surgery this past August. He has found the light switches in our house and he seems to be much more aware of his surroundings all of the sudden, in turn creating my dare devil son.
He has never been able to lift one arm off his walker and now he is doing this and turning on and off a light switch. AMAZING! He is also enjoying opening and closing the dishwasher. Well this is how he fell out of his walker not once but twice! The first time I cought him but I wasn't fast enough the second time. He has no balance and once his mind has any sort of emotion his arms tighten up especially at the elbow. He has absolutely no reflexes so his arms never protect him against a fall which often means his head is what hits first. :( Luckily his back hit the wheel on his walker first and then his head lightly bumped the ground as he slipped out of my arms. BUT I am happy that he is getting out of his comfort zone and actually trying to do these things. I am also happy that he has gained some muscle mass to be able to do this things. Holding himself up in that walker with one arm is a massive feat!! I am so proud of him but I envision many more bumps and bruises down the road. He is a mad man in his walker. He has no fear. He will yank it over bumps and curbs and anything in his way without realizing that it may tip over with him in it. This has also happened and is not a pleasant site to see! BUT he is a boy and that is what boys do and how happy do you think it makes me to be able to say something like that!
One Dollar at a time
You may have noticed that I have added a donate button to Brendan's blog. We are asking those who are interested in helping Brendan walk donate a dollar. These dollars are only going towards Brendan's future surgery which requires money for plane tickets out to St. Louis, surgery costs, future therapy costs, and any future equipment needed for him to ambulate. I have set up a paypal account in his name and he has his own email. Helpbrendanwalk@gmail.com
Having disabled child requires money you would never imagine spending. His father and I have spent $1,000's just on new walkers for him. He needs special sneakers to fit over his leg braces that cost $65 each which he now wears a hole through in his toes just in a few months. We are lucky to have great insurance that covers most other expenses but these added expenses add up very quickly.
So on top of these we need to get Brendan to St. Louis!!! He needs to get evaluated by Dr. Park one last time and I need to be by his side taking diligent notes. Today's plane tickets cost $828 round trip for just Brendan and I to fly to St. Louis. We also need a place to stay for one night and probably a rental car. So as you can see those expenses are unaffordable for us right now. Obviously I will go into debt if need be for my son's future but a little help would be greatly appreciated.
We will need to fly to St. Louis at least 3 times over the next couple of years.
This is why I am asking for a little help. Something I NEVER do. I want to be able to make this surgery a possibility for Brendan. He deserves it.
Thank you in advance to anyone who decides to donate their dollar!!! :)
Having disabled child requires money you would never imagine spending. His father and I have spent $1,000's just on new walkers for him. He needs special sneakers to fit over his leg braces that cost $65 each which he now wears a hole through in his toes just in a few months. We are lucky to have great insurance that covers most other expenses but these added expenses add up very quickly.
So on top of these we need to get Brendan to St. Louis!!! He needs to get evaluated by Dr. Park one last time and I need to be by his side taking diligent notes. Today's plane tickets cost $828 round trip for just Brendan and I to fly to St. Louis. We also need a place to stay for one night and probably a rental car. So as you can see those expenses are unaffordable for us right now. Obviously I will go into debt if need be for my son's future but a little help would be greatly appreciated.
We will need to fly to St. Louis at least 3 times over the next couple of years.
This is why I am asking for a little help. Something I NEVER do. I want to be able to make this surgery a possibility for Brendan. He deserves it.
Thank you in advance to anyone who decides to donate their dollar!!! :)
Friday, October 30, 2009
Having a Sad day today
Today we had a meeting with all of Brendan's therapists and special ed teacher. Unfortunately my fears have been confirmed. Brendan is not learning as he should and his brain is the problem. I knew it all along and I realized we would struggle but I am not sure I realized we would already struggle in Kindergarten. He is having a very hard time recognizing letters and numbers. Forget about writing, we are far from the feat. His teacher said Brendan is her most challenging student yet. This sadden's me. I guess in the back of my mind I just assumed he had a lack of attention span or wasn't motivated but everyone is saying the same thing...it is his brain. If it is his brain there is nothing we can do but try our best and hope he can learn.
Will he ever write? We don't know. Will he ever read? We don't know. I won't give up on him, never in a million years. It is just hard to realize that the next 12 years are going to be a struggle for everyone, maybe even harder than I thought.
They might be wrong. Maybe he will prove us all wrong. I know there are computers he can use and he doesn't HAVE to write but reading??? I hope he is able to learn to read.
It is hard to see his stepsister who is two years younger spelling and sounding out words and writing all her letters as we speak them to her. He can't even draw a circle. Well he is getting better at the circle and he almost made one the other day which I was very proud of!!
I just had to vent today because I feel sad and am very teary-eyed. He is my boy who I want everything for and I am not able to give him everything. It hurts to see him struggle especially when there is nothing I can do but love him and accept him. Most parents can look into their child's future but with Brendan you have to take it all day by day. I will never know and can not imagine what one year from now will be like. I just have no idea. I know I will be better by tomorrow, I don't often feel sad for long.
He has come such a long way and I know he will continue to do so. I just worry as all mothers do for my imperfect son is perfect to me!
Will he ever write? We don't know. Will he ever read? We don't know. I won't give up on him, never in a million years. It is just hard to realize that the next 12 years are going to be a struggle for everyone, maybe even harder than I thought.
They might be wrong. Maybe he will prove us all wrong. I know there are computers he can use and he doesn't HAVE to write but reading??? I hope he is able to learn to read.
It is hard to see his stepsister who is two years younger spelling and sounding out words and writing all her letters as we speak them to her. He can't even draw a circle. Well he is getting better at the circle and he almost made one the other day which I was very proud of!!
I just had to vent today because I feel sad and am very teary-eyed. He is my boy who I want everything for and I am not able to give him everything. It hurts to see him struggle especially when there is nothing I can do but love him and accept him. Most parents can look into their child's future but with Brendan you have to take it all day by day. I will never know and can not imagine what one year from now will be like. I just have no idea. I know I will be better by tomorrow, I don't often feel sad for long.
He has come such a long way and I know he will continue to do so. I just worry as all mothers do for my imperfect son is perfect to me!
Monday, October 5, 2009
Serial Casting
We made it through with flying colors! Brendan spent 4 weeks with both legs serial casted. He had a new set of casts put on each week. He picked blue every single time. The last set he was convinced to have one be red...I heard it took lots of convincing!! :) He did fantastic. He is such a trooper as always. He never complained. He slept through the night and walked everywhere in his walker.
The last set was taken off today and I have never seen his ankles so loose. He stood up in his walker and his right foot was flat on the ground!!! It was a great sight to see. Off he went down the hallway and I could see his heels coming down towards the ground much farther! I am so happy we decided to do this.
We are also going to bring him for extra therapy for the next month. Just once a week but it is with the PT who did the serial casting. (and I am sure it will be better than the therapy he gets at public school!). I am really hoping he will benefit from this long term.
His right hand is also doing much better after some Botox injections. I am very happy I was adamant about using botox in that area. They always want to focus on his legs but he needs to be able to use his right hand as well! His is learning how to grip with it and he seems much more comfortable. Shirts are much easier to get on and off. I am very happy with the results. It is always nerve wracking at first because mobility is lost in a way. He uses his tone to do things and when the tone was gone so was the use of his hand. He couldn't hold a cup or even close his fingers BUT he is working on it and improving!
He is doing very well lately and I am so proud of him (as always). He is communicating more and more everyday. He is really thinking about what he is asking and what he wants to know. For instance; while riding Toby at hippotherapy he kept asking to go outside but it was pouring so he couldn't. The PT brought him over to the barn door to show him the rain and Brendan said to me "mommy after Toby can we go out there?". This is huge for Brendan. Those brain waves are working and continue to create new pathways. He may be globally delayed but he is getting there and I love it!
The last set was taken off today and I have never seen his ankles so loose. He stood up in his walker and his right foot was flat on the ground!!! It was a great sight to see. Off he went down the hallway and I could see his heels coming down towards the ground much farther! I am so happy we decided to do this.
We are also going to bring him for extra therapy for the next month. Just once a week but it is with the PT who did the serial casting. (and I am sure it will be better than the therapy he gets at public school!). I am really hoping he will benefit from this long term.
His right hand is also doing much better after some Botox injections. I am very happy I was adamant about using botox in that area. They always want to focus on his legs but he needs to be able to use his right hand as well! His is learning how to grip with it and he seems much more comfortable. Shirts are much easier to get on and off. I am very happy with the results. It is always nerve wracking at first because mobility is lost in a way. He uses his tone to do things and when the tone was gone so was the use of his hand. He couldn't hold a cup or even close his fingers BUT he is working on it and improving!
He is doing very well lately and I am so proud of him (as always). He is communicating more and more everyday. He is really thinking about what he is asking and what he wants to know. For instance; while riding Toby at hippotherapy he kept asking to go outside but it was pouring so he couldn't. The PT brought him over to the barn door to show him the rain and Brendan said to me "mommy after Toby can we go out there?". This is huge for Brendan. Those brain waves are working and continue to create new pathways. He may be globally delayed but he is getting there and I love it!
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