Alex weighed in at 156.1 pounds at our visit.... a growing boy, lol. WOW... considering he weighed 115 back in January... then 98 when we left Shands..... 130 when we left Brooks Rehab. He hit puberty right smack in the middle of all this... now weighing more and taller than me! Growing boy :0) In his evaluation at Wolfson's, the Botox has proved to be a success with much more range of motion in most places except his hips. Doctor wants me to consider a baclofen pump, another surgery, where they place a pump inside his stomach which continuously feeds the baclofen throughout his body. He takes the medication by mouth now, however I was told the majority of that is going to his brain and not the body, therefore they think the pump would be more beneficial to all parts of his body via the pump. Alex is NOT SO keen on the idea of another surgery.... needless to say, we are leaving all options open at this point and considering all aspects to help out the recovery. We may explore other options before opting with another surgery as I surely don't want to put him under any more duress if we don't have to. He has been put back on his ADHD meds, today will be the first day of taking them... hoping this helps with his attention issues, especially during school lessons and hoping it controls his appetite. The brain still does not tell him when he is full, therefore he constantly wants to eat...... and eat.... and eat, lol. Before this happened the medication would make him not want to eat so I am hoping that it has the same effect now, lol. He also was given a med for frequent urination, something else we are going thru and have been since this happened. Every time he drinks something, he feels the need to go and if he drinks a full drink.... he will be going forever over and over. The doctor explained this as when something like this happens, the brain goes back to thinking the bladder is the size as it was when we were born....uuuuuuuuuummmm not so big right! Explains everything we have been going thru, lol! It's no fun having to take him to pee every 10-30 minutes and a little inconvenient at most times, lol. We can't even get thru a full hour of therapy without a pee break. Any who.... we got meds to control this yet I feel like it has worsened the case, lol. Making a call today to see what's up with that.
Alex has been doing great with his walking with the quad cane.... we practice more and more everyday ... taking more and more steps for longer periods of time. He loves to show out and is really excited that he has come so far. He told me that he thought he would never be able to walk again..... so you can imagine how excited he is. Funny story to share with you before I close out... on our way home from the doctor visit, I decided to stop at McDonalds for him, get some lunch for him and grab me a movie from the red box :0) So I go inside, leave him in the backseat of the car, running with radio on.....I'm at the counter ordering his food when all of a sudden I hear a HORN.... blaring at random beats.... I'm thinking it can't be my car... Alex is in the backseat, can't walk or reach the horn in the front seat right? I continue to wait for my food, horn still going off now at like a rhythm to a song, lol... I see customers getting up staring out the window to see where it;s coming from.... ok, I'll bite... let me look too and see what the heck is going on,lol. YES IT WAS MY CAR.... YES IT WAS ALEX.... he had his cane taking it from the back seat to the front and pushing the horn.... OMG... little turkey! He was cracking up in my car to himself while he pulled this little trick of his off! The people inside thought it was a dog in a car because they couldn't see anyone in the front seat, lol! Excuse me... that's just my kid, in the backseat with his cane and a brain injury making a funny, lol! My little trickster with a great sense of humor...THANK YOU GOD! I have to admit... it was funny considering I had ruled him out in my mind of not being able to pull that off, ha! jokes on mom!
Sir Alex is calling me now.... wanting his choc chip pancakes of course.... closing for now. Therapy today... some school... lot's to do! Hoping to get some videos up today of his therapy so stay tuned.
PEACE~LOVE~N~THUMBS UP!
Lisa
Alex has been doing great with his walking with the quad cane.... we practice more and more everyday ... taking more and more steps for longer periods of time. He loves to show out and is really excited that he has come so far. He told me that he thought he would never be able to walk again..... so you can imagine how excited he is. Funny story to share with you before I close out... on our way home from the doctor visit, I decided to stop at McDonalds for him, get some lunch for him and grab me a movie from the red box :0) So I go inside, leave him in the backseat of the car, running with radio on.....I'm at the counter ordering his food when all of a sudden I hear a HORN.... blaring at random beats.... I'm thinking it can't be my car... Alex is in the backseat, can't walk or reach the horn in the front seat right? I continue to wait for my food, horn still going off now at like a rhythm to a song, lol... I see customers getting up staring out the window to see where it;s coming from.... ok, I'll bite... let me look too and see what the heck is going on,lol. YES IT WAS MY CAR.... YES IT WAS ALEX.... he had his cane taking it from the back seat to the front and pushing the horn.... OMG... little turkey! He was cracking up in my car to himself while he pulled this little trick of his off! The people inside thought it was a dog in a car because they couldn't see anyone in the front seat, lol! Excuse me... that's just my kid, in the backseat with his cane and a brain injury making a funny, lol! My little trickster with a great sense of humor...THANK YOU GOD! I have to admit... it was funny considering I had ruled him out in my mind of not being able to pull that off, ha! jokes on mom!
Sir Alex is calling me now.... wanting his choc chip pancakes of course.... closing for now. Therapy today... some school... lot's to do! Hoping to get some videos up today of his therapy so stay tuned.
PEACE~LOVE~N~THUMBS UP!
Lisa
