MEET GLENN
Written by Glenn's Mother
Glenn is born in 2008 after some complications with the pregnancy. He was a very big boy of 4,5 kg, and had low blood sugar that took him to the NICU. The time he was lying on the NICU they found out he could not bear any food in his stomach and vomit all his milk. And did some more research, and found a malrotation with volvulus in his intestines. He needs an emergency surgery in another hospital to save his life. The list of problems grows and found problems with his heart and made an ultrasound to see what was wrong, and found a VSD and an open Ductus botalli and his fontanelle almost fully closed. They were thinking about a syndrome but did not know which one.
Revalidation goes slow as Glenn had problems with drinking his bottle and the hospital placed a feeding tube in his nose. That made Glenn angry so he pulls them out every time! The hospital made a decision to give him a bottle, but that was very hard. Being a very slow drinker Glenn need more than an hour to drink the bottle and then he still vomits almost all of the milk. He did not sleep much at that time and getting more tired and started drinking more slowly. He could not stay in this hospital so took him to the hospital where he was born, but forgot to tell they gave him morphine. Glenn screamed a full night, and did not stop screaming in the first four months. After this horrible time he was turning in a happy little baby laughing all the time. But did not want to roll over on his belly and could roll at his back soon. At the age of eight months Glenn was a very happy boy and could sit on his own. He loves to talk to everyone on his own way. At age nine months he started to say the words (mama/papa and bal) (mommy daddy and bal). We are so happy. Glenn still vomit about 40 till 60 times a day but keeps on growing and happy.
He was sick al lot of times, sometimes ear infections and airway infections that made him asthmatic and we have to take him to the hospital many times. At age 10 months he started turning a little bit blue. But at age 13 months on a vacation he had an ear infection and was turning blue again when he was eating his fruit. There was a lot of panic and we thought he was chocking. When he got his own color back, we called our hospital and they want to exam what was wrong. The EEG that was made after two days was clean so they say it was no epilepsy. We had a very hard time with a lot of being sick and staying in the hospital a lot of times! about 40 till 60 times in half a year he was turning blue! We were freaking out and did not sleep and watch our boy all the time! We saw a pattern and where thinking about epilepsy seizures. After half a year they consult a neurologist and he told us to call when he had a turning blue episode, and took ambulance to the hospital and he got a seizure during the EEG. It was epilepsy for sure!!! We got medicines but he still was sick all the time and had seizures. They also made an MRI of his brain at this time and found all kinds of abnormality’s. The seizures took a lot from him. But he managed to sit on his own at age 15 months and he was a very happy infant laughing all the time and love to cuddle. There was also great news his heart health on his own!! After the seizures we had him screened for different deceases but they did not find anything. The bleu turning seizures stopped at age 3.
He had problems with his ears and hearing so they have to place tubes, but because of his narrow ear canals it was very problematic. After 4 times they had an ear surgeon to fix the job. Glenn had problems with his eyes and they also found problems with his sight in his brain (CVI). Glenn could stand solid and started to try to walk. But after a few moths he did not want to stand and he was crying all the time and losing much weight. He did not want to sit either. So we went to our hospital and we had to stay there. After different testing he had a very huge lactose intolerance (the problem of vomiting all the years). The same time the he got problems with sleeping. Waking up different times in the night and almost the whole night. At daytime he was very tired and not alert. He lost his speech again and had problems to face the day. Our neurologist found out it was epilepsy syndrome like ESES. This was very heartbreaking for us. We keep on fighting for our little man but that where some hard years. It was hard because he was tired. He did not want to play on the ground anymore and he start butting his head against walls and floors.
But he loved sitting on our lap and play. He did not have any speech but we find out he could learn how to speak in sign language. It took us a lot of time but he learned to signed different things. Glenn was starting to be happy again. He is a very easy going kid. He loves everything we do. Always laughing. But since January this year we have a different kid. Glenn is starting to progress. After four years of almost standing still we had our own little miracle. He is alert almost all the time, and started walking in different devises and could walk with our support. The brain is unbelievable. We are so proud of him. He is such a happy kid. He is still facing problems with his stomach and intestines. We are visiting a special doctor for his problem. In march we finally had a diagnose ADNP mutation. This diagnose couldn’t get on a better time for us. The Facebook group for parents is very awesome and feeling like a whole new family. They gave us a great feeling and encourage us to try again to make him walk and talk. Something that made us very grateful, and fill our hearts with joy.
Written by Glenn's Mother
Glenn is born in 2008 after some complications with the pregnancy. He was a very big boy of 4,5 kg, and had low blood sugar that took him to the NICU. The time he was lying on the NICU they found out he could not bear any food in his stomach and vomit all his milk. And did some more research, and found a malrotation with volvulus in his intestines. He needs an emergency surgery in another hospital to save his life. The list of problems grows and found problems with his heart and made an ultrasound to see what was wrong, and found a VSD and an open Ductus botalli and his fontanelle almost fully closed. They were thinking about a syndrome but did not know which one.
Revalidation goes slow as Glenn had problems with drinking his bottle and the hospital placed a feeding tube in his nose. That made Glenn angry so he pulls them out every time! The hospital made a decision to give him a bottle, but that was very hard. Being a very slow drinker Glenn need more than an hour to drink the bottle and then he still vomits almost all of the milk. He did not sleep much at that time and getting more tired and started drinking more slowly. He could not stay in this hospital so took him to the hospital where he was born, but forgot to tell they gave him morphine. Glenn screamed a full night, and did not stop screaming in the first four months. After this horrible time he was turning in a happy little baby laughing all the time. But did not want to roll over on his belly and could roll at his back soon. At the age of eight months Glenn was a very happy boy and could sit on his own. He loves to talk to everyone on his own way. At age nine months he started to say the words (mama/papa and bal) (mommy daddy and bal). We are so happy. Glenn still vomit about 40 till 60 times a day but keeps on growing and happy.
He was sick al lot of times, sometimes ear infections and airway infections that made him asthmatic and we have to take him to the hospital many times. At age 10 months he started turning a little bit blue. But at age 13 months on a vacation he had an ear infection and was turning blue again when he was eating his fruit. There was a lot of panic and we thought he was chocking. When he got his own color back, we called our hospital and they want to exam what was wrong. The EEG that was made after two days was clean so they say it was no epilepsy. We had a very hard time with a lot of being sick and staying in the hospital a lot of times! about 40 till 60 times in half a year he was turning blue! We were freaking out and did not sleep and watch our boy all the time! We saw a pattern and where thinking about epilepsy seizures. After half a year they consult a neurologist and he told us to call when he had a turning blue episode, and took ambulance to the hospital and he got a seizure during the EEG. It was epilepsy for sure!!! We got medicines but he still was sick all the time and had seizures. They also made an MRI of his brain at this time and found all kinds of abnormality’s. The seizures took a lot from him. But he managed to sit on his own at age 15 months and he was a very happy infant laughing all the time and love to cuddle. There was also great news his heart health on his own!! After the seizures we had him screened for different deceases but they did not find anything. The bleu turning seizures stopped at age 3.
He had problems with his ears and hearing so they have to place tubes, but because of his narrow ear canals it was very problematic. After 4 times they had an ear surgeon to fix the job. Glenn had problems with his eyes and they also found problems with his sight in his brain (CVI). Glenn could stand solid and started to try to walk. But after a few moths he did not want to stand and he was crying all the time and losing much weight. He did not want to sit either. So we went to our hospital and we had to stay there. After different testing he had a very huge lactose intolerance (the problem of vomiting all the years). The same time the he got problems with sleeping. Waking up different times in the night and almost the whole night. At daytime he was very tired and not alert. He lost his speech again and had problems to face the day. Our neurologist found out it was epilepsy syndrome like ESES. This was very heartbreaking for us. We keep on fighting for our little man but that where some hard years. It was hard because he was tired. He did not want to play on the ground anymore and he start butting his head against walls and floors.
But he loved sitting on our lap and play. He did not have any speech but we find out he could learn how to speak in sign language. It took us a lot of time but he learned to signed different things. Glenn was starting to be happy again. He is a very easy going kid. He loves everything we do. Always laughing. But since January this year we have a different kid. Glenn is starting to progress. After four years of almost standing still we had our own little miracle. He is alert almost all the time, and started walking in different devises and could walk with our support. The brain is unbelievable. We are so proud of him. He is such a happy kid. He is still facing problems with his stomach and intestines. We are visiting a special doctor for his problem. In march we finally had a diagnose ADNP mutation. This diagnose couldn’t get on a better time for us. The Facebook group for parents is very awesome and feeling like a whole new family. They gave us a great feeling and encourage us to try again to make him walk and talk. Something that made us very grateful, and fill our hearts with joy.
