Jack was born on December 10th 2009 with the help of a surrogate. We were told to expect an 8 lb plus baby from his 30 week scan but when he was born by elective cesarean section at 39 weeks he weighed 6 lb 10oz and looked tiny. He was my husband’s first child, but I have older children, one of whom who has disabilities and my instincts told me there was something wrong with Jack.
From day one he couldn’t seem to suck on his baby bottle and breathe at the same time. We bought every type of bottle and teat on the market. He screamed constantly and nothing seemed to settle him. At 5 weeks old while in my arms Jack suddenly stiffened arched back went blue around his mouth then went floppy and cried. I cried and rang an ambulance! He did the same in hospital, but we were told that he was breath holding and not to worry. At his 6 weeks check with his health visitor we poured out our concerns which were mainly feeding, crying and him not tracking visually or smiling at this point. She referred Jack to the same pediatric doctor that his sister was under.
Over the next year Jack did not make any developmental progress. He was diagnosed with reflux, cow’s milk intolerance, Microcephaly, hypotonia and Cerebral Visual Impairment, Global Development Delay and Dyskinesea. His sleep was practically nonexistent and we were witnessing multiple types of seizures and choking episodes.
In July 2011 Jack had a gastrostomy fitted so all of his food and drink is passed through a tube directly into his stomach. At the same time he had a surgery called Nissens Fundoplication which has helped his reflux and feeding problems significantly.
In May 2013 Jack had a video telemetry which showed that he had several types of epilepsy occurring frequently while awake, asleep and sub clinically. Following this diagnosis Jack has tried various drug therapies without success and more recently the Ketogenic diet. Unfortunately this too had no control over Jacks epilepsy and he had to come off the diet as it caused him to have Pancreatitis. His seizures this year have been the worst to date and Jack has needed to be induced into a coma twice and placed on a ventilator. He is currently waiting for a vagal nerve stimulator fitting, another drug free therapy which we can only hope will help control Jacks seizures.
This year following Jacks FOXG1 diagnosis in Nov 21014 he has also been diagnosed with Auditory Processing Disorder which means Jacks has multi sensory impairment. He can not process a lot of light and sound at the same time without it causing him seizures or distress.
Jack is 5 now and under a team who are brilliant. He can’t sit up, but he rolls around, makes a huge effort to play with his toys and he laughs a lot. He is very charming and has a smile that lights up the room. Jack has taught us to appreciate every day and not to take life for granted. He may not be able to speak but his smiles and laughs make us believe that he has a whole lot to say in his own way. We are so proud to be his parents.
Jack was born on December 10th 2009 with the help of a surrogate. We were told to expect an 8 lb plus baby from his 30 week scan but when he was born by elective cesarean section at 39 weeks he weighed 6 lb 10oz and looked tiny. He was my husband’s first child, but I have older children, one of whom who has disabilities and my instincts told me there was something wrong with Jack.
From day one he couldn’t seem to suck on his baby bottle and breathe at the same time. We bought every type of bottle and teat on the market. He screamed constantly and nothing seemed to settle him. At 5 weeks old while in my arms Jack suddenly stiffened arched back went blue around his mouth then went floppy and cried. I cried and rang an ambulance! He did the same in hospital, but we were told that he was breath holding and not to worry. At his 6 weeks check with his health visitor we poured out our concerns which were mainly feeding, crying and him not tracking visually or smiling at this point. She referred Jack to the same pediatric doctor that his sister was under.
Over the next year Jack did not make any developmental progress. He was diagnosed with reflux, cow’s milk intolerance, Microcephaly, hypotonia and Cerebral Visual Impairment, Global Development Delay and Dyskinesea. His sleep was practically nonexistent and we were witnessing multiple types of seizures and choking episodes.
In July 2011 Jack had a gastrostomy fitted so all of his food and drink is passed through a tube directly into his stomach. At the same time he had a surgery called Nissens Fundoplication which has helped his reflux and feeding problems significantly.
In May 2013 Jack had a video telemetry which showed that he had several types of epilepsy occurring frequently while awake, asleep and sub clinically. Following this diagnosis Jack has tried various drug therapies without success and more recently the Ketogenic diet. Unfortunately this too had no control over Jacks epilepsy and he had to come off the diet as it caused him to have Pancreatitis. His seizures this year have been the worst to date and Jack has needed to be induced into a coma twice and placed on a ventilator. He is currently waiting for a vagal nerve stimulator fitting, another drug free therapy which we can only hope will help control Jacks seizures.
This year following Jacks FOXG1 diagnosis in Nov 21014 he has also been diagnosed with Auditory Processing Disorder which means Jacks has multi sensory impairment. He can not process a lot of light and sound at the same time without it causing him seizures or distress.
Jack is 5 now and under a team who are brilliant. He can’t sit up, but he rolls around, makes a huge effort to play with his toys and he laughs a lot. He is very charming and has a smile that lights up the room. Jack has taught us to appreciate every day and not to take life for granted. He may not be able to speak but his smiles and laughs make us believe that he has a whole lot to say in his own way. We are so proud to be his parents.