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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!

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.
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 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!

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!

Thursday, August 20, 2009

My little trooper

Brendan had eye surgery to fix his strabismus in both eyes a week ago. He also had another round of botox injections. This was the shortest amount of time in between injections and I don't see the drastic improvement as I have before. His eyes look so strange now. It could be that the inner corners are still blood red and they cross now instead of drift outward. But that is all normal and his eyes should adjust and look great in a month. He was such a trooper going in for surgery. I explained that he was going to have surgery on his eyes and that he would be at the hospital and he asked "am I going to sleep there?" I said no you will come home a little while after. He said "no I want to sleep there" I asked why and it was because his Pa was sleeping at the hospital. Too cute. He was smiling and walking and chatting it up with all the nurses prior to surgery. 6 hours later I was loading him into his dad's car and he said "can I have a snack?" I was like yup he is fine!! :) He is just such an inspiration. Nothing gets him down. He is happy and funny and enjoys life with all of it's challenges.
We had the Dr. inject botox into his right pecs and other arm muscles this time. He has limited use of his right arm and hand. He uses it to assist his left arm but that is about it. Long sleeve shirts and coats are very difficult to put on and off so I am hoping we see results from this. He already seems to be less rigid and can raise his arm higher than ever before. No need for a long sleeve shirt yet but maybe I should just try it to see the difference :).
So my son just amazes me all the time. He is going to do just fine in life. I can see that already.

Tuesday, June 30, 2009

A difficult year so far...

We have had a tough year. My father almost died after his heart valve transplant and my grandmother just passed away. She had lived with my parents for 2 1/2 years. It has been a very long 4 months since my father's surgery but he is improving slowly. He is just always exhausted, just from walking, and his heart will never fully function like it should. It is very sad to see and it was a very traumatic experience.

Sooo after that I couldn't put Brendan through SDR. I was fully prepared and ready to go through with it but then after almost losing my dad and watching him in a hospital bed for over a week before even waking up was very very hard on me. We didn't know if he was going to pull through and it just makes me think that anything can go wrong and what if Brendan doesn't wake up? I can't imagine anything happening to him so I just have to regain my strength for this difficult surgery. I need to be the one on board 100% and fully prepared for this to emotionally handle the surgery and the post care so the decision weighs on my daily.

On a lighter note Brendan is having a great year. He had botox in Feb and after being very weak for a month or so he has gained a lot of strength and looks great in his walker. He is walking longer distances and seems more confident in it. He turns all over the place and runs down hills in it. It is great to see. He loves being independant. He went swimming all by himself for the first time. We put arm floaties on him and in the pool he went with his stepsister. He floated around the pool 3 times and had a smile on his face the ENTIRE time. It was a great day and I am so glad my hubby talked me into it...I'm a little overprotective-haha. :) He is sleeping well with his braces and even has a new brace that he wears when he is with his father. It is made out of the AFO material and it goes from his hips to his ankles. He legs seem much straighter during the day after he wears it and he seems to be less rigid. So all in all I am happy with his progress this year. He is always smiling and joking these days and is talking up a storm. He can drive me nuts with all his questions but we can have conversations which I treasure. He seems to pick up more words and speak longer sentences by the day. He always makes me so proud!

Monday, January 26, 2009

The new braces he has to wear

Brendan has been wearing one knee immobilizer every night. It hasn't been too bad I alternate the leg and give him a break once a week. He usually sleeps pretty good with it on, sometimes I have to take it off in the middle of the night. Some mornings he wakes up crying and tells me it hurts so I just take it off and stretch out his leg.

So NOW Brendan is supposed to wear TWO knee immobilizers AND a hip adductor while he sleeps. It is awful. The knee braces are these long black foam things that I have to velcro around each leg from right under his hip down to his ankle. The have supports inside that go down his leg on both sides of his knee to keep his leg straight while he sleeps. I hate putting them on especially when he points to his leg and says "break tonight?" and I have to say "nooo not tonight".

After I get both of them strapped on I have to put this triangleular type pillow between his legs which straps around each leg. :( It is awful. How can anyone sleep like that? Not to mention his legs are always bent (which is why he needs the braces on) so he probably has leg spasms all night. He can't always communicate everything so I really have no idea not to mention he has been in pain since birth so he is used to the pain.

He didn't make it long the first night so I took everything off accept for one brace. I felt so bad for him which doesn't always help! So the next night I put on two braces which he made it until around 10:30pm and then I took one off. It doesn't help when you come upstairs to check on your child and he is laying there awake so you ask him if he is okay and he says "my brace hurtin me". It kills me!

DH said I have to leave both on for an entire night or he won't ever get used to it! I cried of course because I know I have to and the pity thing won't help him in the end.

So now I need to keep both on for an entire night and then add the hip pillow.

Life can really suck for him sometimes and that is why SDR sounds better and better all the time!

Friday, January 23, 2009

Decision has been made

We have decided to go ahead with the surgery. He does need to be a candidate but I really have no doubt that he will be since he was when he was 3. I am filling out all the necessary paperwork and sending a video of Brendan to Dr. Park out in St. Louis and then we go from there.
Brendan is having another round of Botox injections on Feb. 12th. They will be injected into his hamstrings and right below his knees. I am also going to ask for a small amount to be injected into his right arm because the last time he had that really helped him gain mobility in that arm which he has maintained! :)
He will most likely be casted (right hip to ankle) after this round of botox to help his right knee contracture. He has to wear knee immobilizers at night now (on both legs) because his knees are becoming very tight and stiff. He also has to wear a pillow (strapped to his legs) that goes in between his legs to keep them apart while he sleeps. I have no idea how he can sleep like that but the kid just does! He is amazing....
So I have a lot on my mind and this surgery is really weighing heavy. I just have to hope for the best and maybe one year from now I will be posting that Brendan has taken his first independant step at the age of 7. Now wouldn't that be the best blog ever?!?!

Tuesday, January 6, 2009


So Brendan's father and I are trying to decide if SDR (Selective Dorsal Rhizotomy) is the right choice for Brendan. His father is all for it while I am nervous about it. It is not something you can take lightly. It is major surgery. Spinal surgery! I don't even know how I have gotten through all of Brendan's surgeries so far but I have so I know I can do it. :)

I need to for him. I know he will want to walk unassisted one day. I know he will want to look 'normal' and be like all the other boys. I know he won't want to rely on me every day (even if he loves it right now) so I need to do this for him. I know that but it doesn't make it any easier. I wish he could just say " Mom I want this" but he can't. Not yet anyway. How do you put your child through all that pain when they can't really understand why?

So that is my dilema right now. Life can be challenging that is for sure.