Threeboysandachickie
Make a Wish trip mommy
- Joined
- Apr 2, 2012
- Messages
- 230
This is a pretty depressing way to start Luke's pre trip report. Please keep reading. I cant wait ti introduce you to the new and improved LUKIE BEAR, age 8
Hi! I am holly mom to four wonderful kids aged 11-6, two wild hugemongus dogs and wife to my wonderful hubby Tom. Tom pretty much earns money for me to spend on beformentioned family members! Ssssh do not tell him though, it might make him feel as if we only love him for his cash, in all truth he is the most important of them all. He is the glue that holds the family together. Our three boys were perfection until Luke was 8 months old. Ok, they are still perfection, just different. Our life fell apart in mere seconds at lukes 8 month well baby check. I started explaining what a perfect baby Luke was. Never cried. Entertained himself in his bouncy seat for hours, was just a very happy go lucky guy. He's on schedule. In walks nurse with mmr shot. Sigh biggest regret of my life. I Sign off on the shots and left.
Two weeks later and we were back to the office with a different baby. No longer happy, no longer making eye contact and having severe stomach cramps. I was Armed with a videotape of my Luke. dr sat down and said, so you son is having gas tummy pains? I said no they are not tummy pains please watch. Two seconds later, the dr walks out of room with the tape leaving us speechless for 10 minutes. We sat, and waited. What is wrong with my precious baby? And NOW that I am expecting again.(dd#4) Troubles pour into our household in droves this first year. Finally the pediatrician walks back in and says he has an appointment set up for us at the university hospital neurology department.
In the car we go, crying my eyes out. We still have no clue what what could be wrong with Luke. We were met by a nursing crew and taken into a private lounge. We were informed that Luke is getting MRI, CAT scan, and a PET scan. Also they glued transmitters all over his head to measure brain activity...the nurses begin to explain that we are here for a long haul. The conversation begins and all i can think is ****excuse me what did you say??? ******SEIZURES...which turn into SEVERE brain malfunction. Luke is finally labeled West Syndrome or infantile spasms disorder. As parents the darkness sets in and and we think thats it. That' our sons chance at life is limited and fear sets in that my pregnancy could be at risk also, so genetic testing also begins.
Prognosis
In cases treatment of West syndrome is relatively difficult and the results of therapy often dissatisfying; many children ( up to 90%) suffer severe physical and cognitive impairments, even when treatment for the attacks is successful. This is not usually because of the epileptic fits, but rather because of the causes behind them (cerebral anomalies or their location or degree of severity). Severe, frequent attacks can (further) damage the brain.
Permanent damage often associated with West syndrome include cognitive disabilities, learning difficulties and behavioural problems, cerebral palsy (up to 5 out of 10 children), psychological disorders and often autism (in around 3 out of 10 children).
As many as 6 out of 10 children with West syndrome suffer from epilepsy later in life. Sometimes West syndrome turns into a focal or other generalised epilepsy. Around half of all children develop Lennox-Gastaut
Luke is one of the 90% who suffer from severe mental and behavioral problems. He also still has seizure activity. The brain damage he suffered has caused him to be vision and hearing impaired. This causes him to appear as a severely autistic child. He is not diagnosed as autistic, but easily could be. He is moderately ID. But, he is a gloriously happy boy who loves life! He is in no pain ( actually due to brain damage feels little to no pain reception), and is happily able to recognize his mom, dad, and siblings. He loves to pay games with us, and really enjoys attending our local amusement park. He also adores swimming and horseback riding.
Thank you for finding and following along on Luke's story!
Hi! I am holly mom to four wonderful kids aged 11-6, two wild hugemongus dogs and wife to my wonderful hubby Tom. Tom pretty much earns money for me to spend on beformentioned family members! Ssssh do not tell him though, it might make him feel as if we only love him for his cash, in all truth he is the most important of them all. He is the glue that holds the family together. Our three boys were perfection until Luke was 8 months old. Ok, they are still perfection, just different. Our life fell apart in mere seconds at lukes 8 month well baby check. I started explaining what a perfect baby Luke was. Never cried. Entertained himself in his bouncy seat for hours, was just a very happy go lucky guy. He's on schedule. In walks nurse with mmr shot. Sigh biggest regret of my life. I Sign off on the shots and left.
Two weeks later and we were back to the office with a different baby. No longer happy, no longer making eye contact and having severe stomach cramps. I was Armed with a videotape of my Luke. dr sat down and said, so you son is having gas tummy pains? I said no they are not tummy pains please watch. Two seconds later, the dr walks out of room with the tape leaving us speechless for 10 minutes. We sat, and waited. What is wrong with my precious baby? And NOW that I am expecting again.(dd#4) Troubles pour into our household in droves this first year. Finally the pediatrician walks back in and says he has an appointment set up for us at the university hospital neurology department.
In the car we go, crying my eyes out. We still have no clue what what could be wrong with Luke. We were met by a nursing crew and taken into a private lounge. We were informed that Luke is getting MRI, CAT scan, and a PET scan. Also they glued transmitters all over his head to measure brain activity...the nurses begin to explain that we are here for a long haul. The conversation begins and all i can think is ****excuse me what did you say??? ******SEIZURES...which turn into SEVERE brain malfunction. Luke is finally labeled West Syndrome or infantile spasms disorder. As parents the darkness sets in and and we think thats it. That' our sons chance at life is limited and fear sets in that my pregnancy could be at risk also, so genetic testing also begins.
Prognosis
In cases treatment of West syndrome is relatively difficult and the results of therapy often dissatisfying; many children ( up to 90%) suffer severe physical and cognitive impairments, even when treatment for the attacks is successful. This is not usually because of the epileptic fits, but rather because of the causes behind them (cerebral anomalies or their location or degree of severity). Severe, frequent attacks can (further) damage the brain.
Permanent damage often associated with West syndrome include cognitive disabilities, learning difficulties and behavioural problems, cerebral palsy (up to 5 out of 10 children), psychological disorders and often autism (in around 3 out of 10 children).
As many as 6 out of 10 children with West syndrome suffer from epilepsy later in life. Sometimes West syndrome turns into a focal or other generalised epilepsy. Around half of all children develop Lennox-Gastaut
Luke is one of the 90% who suffer from severe mental and behavioral problems. He also still has seizure activity. The brain damage he suffered has caused him to be vision and hearing impaired. This causes him to appear as a severely autistic child. He is not diagnosed as autistic, but easily could be. He is moderately ID. But, he is a gloriously happy boy who loves life! He is in no pain ( actually due to brain damage feels little to no pain reception), and is happily able to recognize his mom, dad, and siblings. He loves to pay games with us, and really enjoys attending our local amusement park. He also adores swimming and horseback riding.
Thank you for finding and following along on Luke's story!
hysical, occupational, speech, itinerant hearing, vision,and orientation mobility. He also had feeding terapy, the state finally brought in. Deadblind specialists to help train them on how-to work together with Luke. Things were definitely looking up! Luke learned how to walk and have fun. He can manuver himself around in well lit areas without help. He loves life! We were happy the seizures were slowing down and the sensory integration seemed to help him cope with situations.
I am also a case manager for the Intellectual Disabilties waiver so work with a lot of different disabilities but I swear the mom job is a lot harder.... So there is my depressing story but cant wait to share our trip stories for some optimism 
We just did our's today. I was beyond excited!!! Now to wait....aaaahhhhh!
So excited for you guys. It is coming up fast! How many days are you there through MAW? If we are able to extend we will. We will be there 7 days but 2 days will be travel days as we are coming from the west coast so we will arrive late the first day. I have no idea when we would be leaving the last day. Plus, I don't think we will be able to afford to go back to Florida let alone Disney World anytime soon! So we want to get the most out of the trip we can. Have fun planning! 
