Before Botox....and AFTER !!!

Thumb hidden in hand...



Notice how fisted his hand is....



Notice you can't see his thumb...


Now the after pictures....

Thumb out of palm....

Amazing....

Relaxed fingers...

Standing at couch....He was kicking left foot and standing on braced foot !!!

Love that little man !!!!



So what do you think???? I think it is wonderful and these pictures really don't show the "whole" picture because he was more interested in camera than anything else.

So is it working......

     YES !!!! The Botox appears to be working.  He isn't quite 72 hours out from the procedure and his hand is amazing.....He actually opened his hand this morning so I could put on his brace.  It was awesome !!!  I will get some pictures soon so everyone can see the difference !!!  Wooo Hooo !!!!

Botox....

     So we had to be at the hospital at 730.  Ugh.....  So we get there, get checked in and then the waiting started.  We met 3 other families with kiddos who were having Botox also.  Two had had it done prior and Joseph and another little boy were having their first time.  So 9 am comes and goes and we still wait...
     About 1030 we went up to another holding room and wait far a bit longer.  Joseph was very good.  I was very proud of him because he hadn't had any feeings since midnight.  So about 1130 or so we get back into the procedure room.  Get the "speech" from the hospital staff and we try to get an IV in him.....then the screaming begins....The nurse was great.  She felt so bad.  She got the first one but his vein was as big as the needle and it was up against a valve so it wouldn't work....second one she got in too but when it was flushed the vein blew....UGH !!!! So she called in the big guns...LOL.
     Enter Joseph's new best friend.....cue the lights....The next nurse came in and she popped one right in....a little bit of Diprivan and Joseph was asleep....It was kinda weird.  He had been crying so he had tears on his face but he was asleep.  I laid him back on the pillow, kisssed his head and had to walk out of the room....cue the tears...only a few.  He was done and awake in about 20 minutes.  Woke up smiling and laughing, shew !!!
     So he got 10 injections and we should see difference in about 2-3 days.  He will get therapy tomorrow and friday and then several times next week.  Man I hope it works.  The two kids that had had it before were on their third time.  The parents said it really helped so that is great...now we wait and see....Thanks for all the prayers and well wishes.  

PS...Just to add a bit.  They had Joseph hooked up to an oxygen sensor during the IV placement and of course during the procedure.  During the screamfest he maintained his sats above 92 and when he was asleep he was 95-97.  Didn't need any oxygen of course...That's my boy !!!!

A bit about eating and a bit about Botox....

     Lets start with eating !!! So the last week or so Joseph has been really interested in food.  I know CRAZY !!! So it started with kosher salt....His Daddy had made potatoes on the grill and used kosher salt, Joseph wanted it so Tim gave him some potato but Joseph pointed to the salt so Tim sprinkled some on it......Joseph ignored the potato but picked up the salt and put it in his mouth.....I know heart kid....salt.....not good combo but at least he did it on his own and he ASKED for it !!!  So next step.....
     A few days later were are having spaghetti for dinner.  So I made Joseph his plate and sprinkled some Parmesan cheese on it.....again he ignored the true food and went for the cheese.  He had it all over and he probably actually ate 1/2 a teaspoon of it !!!! Crazy taste buds!!!  So lets try something else.....
     A co worker found some freeze dried fruit, pineapple and regular apple.  So I got some a crushed it up...looked like the salt and cheese....yup he ate it !!!  So then a few days ago Tim gave him a potato chip and Joseph had licked it till it was soft.  And then he broke off a small piece and put it in his mouth and CHEWED it !!!!  No gagging...No retching.... AMAZING !!!  Baby steps.....


     Now for the Botox....In the morning we will go to UAB Children's to get injections in Joseph's arm, hand, leg and foot.  He will get somewhere between 8-12 injections.  They are going to use Diprivan/propofol to sedate him, no ventilator.  It is likely he will have oxygen during the procedure and anesthesia will be on standby just in case he needs his airway protected.  Please pray that it goes smoothly and as pain free as possible.....I will update on Facebook when we get news.....

A little more history.....



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 So we came home from the second heart surgery and then celebrated his 1st birthday a few days later.  It was a huge milestone because as you know they said he wouldn't survive to turn one. But he did....
   We continued to have Early Interventions for Joseph.  He was recieving PT, OT, Develpoemental Therapy and Special Instruction.  Prior to his second OHS he LOVED his binkie.  Once he was extubated he didn't want anything to do with it.  he would put toys in his mouth and blankets but that was all.  I started giving him hard thing, pretzels, chips, and cookies. He started to lick them and would occasionaly put it in his mouth.  But that was the limit. And that is about where we are now.  He will scream when we try to feed him with a spoon or offer him a drink of something.  He had a lot of sensory stuff.  He hated to have anything on his hands.  We worked thru that and now he will play in pudding and yogurt.  He will ask for "num nums" but he ends up feeding the cat !!  Oh well, small victories. 
     So now he continues to be 100% tube fed.  He gets his formula but in addition he also gets blended food and juice thru his tube.  So I hope you enjoy reading his journey from button to eating....