As Matt has grown up and we have gotten to know him as a person,
we have found that we just love him more and more each day.
we have found that we just love him more and more each day.
Matt's story
Matt is a vibrant 4 year old boy. He gets really excited about ice cream and chips. He prefers carrots to broccoli. He could listen to music for hours, and likes to add actions or a dance to the tune. He laughs with his whole body, not just his mouth. He loves balls – kicking them, hitting them, throwing them, rolling them. He also loves playing with his toy cars. Swimming is his passion. Matt is really full of life.
We obviously didn’t know this when he was born and the first year was very overwhelming and frightening. Our antenatal care highlighted that there were concerns but no-one could say what was wrong. Matt was diagnosed with Rubinstein Taybi within hours of his birth. Fortunately the paediatrician and geneticist both told us to focus on our baby and not the syndrome, take one day at time, and help him reach his potential. This gave us strength to keep going. Matt stayed in the NICU for 3 weeks as he learned to suck and swallow. Initially he received his feeds through a nasal-gastric tube. Slowly, very slowly, we helped him drink from a bottle. It would take him up to an hour to drink his feed, but we were thrilled he could manage.
The first year of Matt’s life seemed to be filled with numerous appointments and tests. The major health issue was his gastro-oesophageal reflux which meant he vomited up a feed at least once a day. He struggled to gain weight. His over-sensitive gag-reflex in his mouth didn’t help matters. Constipation also plagued him as soon as he went off breast milk. He also suffered severe lung infections. He has been very healthy since he turned one, with no more lung infections. The reflux also diminished by the time he turned 2. He remains on medication for constipation.
Matt was born with angled thumbs and undescended testes. Just after he turned one year old, he underwent surgery to correct these two issues. We also investigated tethered spinal chord. The MRI showed that he has a low lying chord, and the neurosurgeon believes it not to be tethered.
Matt started neuro-developmental physiotherapy at 3 months and has been attending this ever since. This has very helpful to Matt’s gross motor development. We had a speech therapist assist us with helping him learn to eat and to desensitize his gag reflex. Matt took a long time to become adept at eating solids, it was a real journey in patience. Today he is able to eat most things, but still struggles to eat meat.
Knowing it was likely Matt’s speech would be delayed, we enlisted the support from a speech therapist who could help us with Alternative and Augmentative Communication. This included teaching Matt (and us) sign language and a method called PECS which is all about using pictures for communication. Matt surprised us by using both methods to show us how much he understands. Today he is using over 100 signs and he has also started saying words. At the moment he is mainly saying the ends of words, e.g. “ook” for book.
Matt attends a small play group 3 mornings a week which he absolutely loves. The teacher has been so open to including him. We are now starting to explore what options are available for Matt in terms of Grade R and school. We are going to be working with an Educational Psychologist to assist us in finding the best educational place for Matt. It does feel a bit overwhelming, but we are once again taking things one day at a time.
It has been a tough journey and there have been times when we felt despairing. Our faith in Jesus has given us strength to stand when we felt like falling. Our family and some of our friends have stood by us with practical and emotional support. As Matt has grown up and we have gotten to know him as a person, we have found that we just love him more and more each day. His joyful character brings such joy to our lives. Through him God has taught us about what life is really all about – love.
To get to know more about Matt, visit our blog www.matthewtooke.blogspot.com or email us at [email protected]
We obviously didn’t know this when he was born and the first year was very overwhelming and frightening. Our antenatal care highlighted that there were concerns but no-one could say what was wrong. Matt was diagnosed with Rubinstein Taybi within hours of his birth. Fortunately the paediatrician and geneticist both told us to focus on our baby and not the syndrome, take one day at time, and help him reach his potential. This gave us strength to keep going. Matt stayed in the NICU for 3 weeks as he learned to suck and swallow. Initially he received his feeds through a nasal-gastric tube. Slowly, very slowly, we helped him drink from a bottle. It would take him up to an hour to drink his feed, but we were thrilled he could manage.
The first year of Matt’s life seemed to be filled with numerous appointments and tests. The major health issue was his gastro-oesophageal reflux which meant he vomited up a feed at least once a day. He struggled to gain weight. His over-sensitive gag-reflex in his mouth didn’t help matters. Constipation also plagued him as soon as he went off breast milk. He also suffered severe lung infections. He has been very healthy since he turned one, with no more lung infections. The reflux also diminished by the time he turned 2. He remains on medication for constipation.
Matt was born with angled thumbs and undescended testes. Just after he turned one year old, he underwent surgery to correct these two issues. We also investigated tethered spinal chord. The MRI showed that he has a low lying chord, and the neurosurgeon believes it not to be tethered.
Matt started neuro-developmental physiotherapy at 3 months and has been attending this ever since. This has very helpful to Matt’s gross motor development. We had a speech therapist assist us with helping him learn to eat and to desensitize his gag reflex. Matt took a long time to become adept at eating solids, it was a real journey in patience. Today he is able to eat most things, but still struggles to eat meat.
Knowing it was likely Matt’s speech would be delayed, we enlisted the support from a speech therapist who could help us with Alternative and Augmentative Communication. This included teaching Matt (and us) sign language and a method called PECS which is all about using pictures for communication. Matt surprised us by using both methods to show us how much he understands. Today he is using over 100 signs and he has also started saying words. At the moment he is mainly saying the ends of words, e.g. “ook” for book.
Matt attends a small play group 3 mornings a week which he absolutely loves. The teacher has been so open to including him. We are now starting to explore what options are available for Matt in terms of Grade R and school. We are going to be working with an Educational Psychologist to assist us in finding the best educational place for Matt. It does feel a bit overwhelming, but we are once again taking things one day at a time.
It has been a tough journey and there have been times when we felt despairing. Our faith in Jesus has given us strength to stand when we felt like falling. Our family and some of our friends have stood by us with practical and emotional support. As Matt has grown up and we have gotten to know him as a person, we have found that we just love him more and more each day. His joyful character brings such joy to our lives. Through him God has taught us about what life is really all about – love.
To get to know more about Matt, visit our blog www.matthewtooke.blogspot.com or email us at [email protected]