Raisin' Dreams for Riley

Riley was born with congential hydrocephalus (fluid buildup on brain) and periventricular(right lateral ventricle did not form properly) luekomalacia (lack of white matter in brain) on 12/8/09. They have done alot of test and cannot figured out what caused it all. We didnt know about any of this until a week before he was born. I went thur 26 hours of labor then due to lack of oxygen to self and he was getting strained they decided to do a c-section. At a week old he had a VP Shunt put in his head to control his brain fluid drainage.They used to check his shunt every 6 monthts to make sure it is working properly, now w new doctor in atlanta we go only yearly! still making lots if in between doctor checkups! trying to keep them close together so we can have them sane day or next and we stay the night in Atlanta (which gets expensive)! Then at six months old the old neurologist diagnosed him with quadriplegic cerebral palsy.At that fact, we had to see it on a speech therapy perscription. His doctor at the time never came out and told us about the cerebral palsy, needless to say we change neurologist. At 12 months he had to have dual hernia surgery and then also his circumcision. So far we haven't had to undergo any other surgeries, but as he grows he may have to have multiple surgeries to correct his hips, legs, & feet.
Riley has his dual strabismus surgery on April 13, 2012. The surgery went great but the next 6 hours at the hospital were terrifying!' He was in so much pain an couldn't thoroughly see yet and eyes felt like sandpaper, he would get himself so upset he turned purple on me twice finally they gave him more pain med to knock him out n rest it off a little more.. So he n I laid n the hospital bed and I watched him the whole time! My heart was in so many pieces and mind going crazy. My mother was w me and I have to say she held up well... I did the bet I could but no mom can handle that situation without letting it out once! I walked outside and just let it out for a brief minute and back n I went ! Finally Riley was ready to be home ! So that we did! He healed beautifully and eyes look just as perfect as can be! Hope to not have to have the surgery again. Most the time there's not many revisions unless situation in eyes is really bad! Then is may take two to three surgeries for correction! Right now nothing but Botox schedule as far as surgeries! Riley is growing and doing great , definitely working hard!

Riley started school this past year and absolutely loves its! Goes every day from 12-230! Hoping next year will be full time so I have a better chance of finding wok to work around his schedule! Riley is receiving therapy at can do but has limited visits do we are also doing in school pt,ot & speech .. We finally got to get him a communicating device called a dynovox and we love it but still getting used to it so are the teachers and therapist! Living in a small town doesn't help the situation!


Riley still is not able to walk, talk, feed himself or hold his own drinks. He turkey shows he has so much talent and definitely a big heart! My baby isn't much of a baby anymore... He will be 4 this December!! Wow! Where has time gone!!

His neurologist is very great to us and Riley will be starting his Botox injections in November ,we will be going up to Atlanta ga for that and will do mothly checkups with his neuro doctor after....please keep him and our family in all prayers!! (Botox has been going great really seeing muscle loosening w improvement all around using legs!) we are going every 3 months and seeing neurologist in between! We have really come a long way in the past two years so I needed to update his page!

Riley still needs some adaptive equipment for home and school. Medicaid only paid for part of the equipment needed for him to prepare for walking and such. Communication with him is hard but with time using dynovox I believe we will come a long way with it in the next couple years! Theres only certain people that knows what his wants are and thats because he is so routine. He is starting to use his hands more and more but it too is a process. We hope to raise money to be able to pay for other pieces that go to his equipment so it can be used properly.
He also needs adaptive learning stuff for his special needs and that stuff is very expensive. He will be very hard to potty train so will be in diapers for a good while, so we go thru a lot of still baby supplies. He does not thouroughly swallow things good so every eating time is a mess, we go through many bibbs! But he loves his food!! Doctors say he's still so underweight but the youngin is over 36 inches tall!! He going to be long and lanky!! Unlike me of course!! I'm sure he will shoot right on my me ! He is such a well spirited child and truly gifted inside and out! He has worked so hard to get to where he's at now! He is picking up objects more and doing a lot more standing and being in his walker just can't get it moving yet! His day will come I ga lots of faith he will be running everywhere ! I won't tell him to stop either! I just got him involved with a group at www.whoirun4.com parents and runners check it out!! They do fabulous work or people with special needs!!

The travel is also expensive. His pediatrician is local all the others are over four hours away. We live in south georgia and the resources are slim to none. Out traveling is to Atlanta and Augusta now. Just about every month we are traveling to some sort of appointment! our goal in life, for Riley to get to live as normal of a life as any other child!

We strive for his well being, and we know the good lord put this upon my family and i for a reason. He only allows what he knows we can handle.

So in closing,
I ask for you for your thoughts & prayers, and any possible donations to aid this child to be able to get the therapy he needs, and theadaptive stuff so he too can grow and learn just as every other person in this world does! God bless to you all!!

Brittany Leggett (Mom)
Michael Leggett (Dad)
  • Anonymous 
    • $226 
    • 105 mos
  • David Hirsh 
    • $25 
    • 106 mos
  • JAMES MILLER 
    • $500 
    • 107 mos
  • Anonymous 
    • $282 
    • 107 mos
  • Cliff 
    • $100 
    • 107 mos
See all

Organizer

Brittany K Stossmeister-Leggett 
Organizer
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