Katie
01-28-2007, 07:07 PM
http://pic16.picturetrail.com/VOL696/2675511/5342196/68381205.jpg http://pic16.picturetrail.com/VOL696/2675511/5342196/68381198.jpg
Dillon Douglas was born on June 25, 2004. He was the baby we had waited years for! I couldn't have asked for a smoother or easier labor and delivery.
He has quite a long story which I keep a journal for, so I will try to keep this short and sweet.
Dillon's aunt and cousin were both born with craniosynostosis, so we knew that there was a chance he could be born with it as well. We knew right away he was a different and special baby, but there were concerns other than his headshape immediately after birth so it wasn't brought up until the next morning.
Dillon was jaundiced before he was 24 hours old so he was being kept nice and toasty under billie lights. His hemoglobin was also low, and he was not able to keep food down. Somehow during all that we forgot about other possibilites until the neonatologist came to talk to us and advised us he was bringing in a genetecist to see Dillon. He explained to us that the folds over the inside of Dillon's eyes, and having only one crease in the palm of his hand were cause for concern (both usually symptoms of Downes syndrome). During that time we advised the neonatologist of the family history of what appeared to be Pfieffer Syndrome.
When Dillon was five days old, he was still being treated for jaundice and was anemic. The genetecist came in that day and he was officially diagnosed with craniosynostosis after an X-ray of his skull showed that his right coronal suture was fused. the initial chromosomal testing all came back normal. We got to take our little man home that afternoon and began to enjoy the fun and challenges of being a parent.
We had begun to make arrangements for an appointment with a neurosurgeon, but at three weeks old, Dillon was back in the hospital because the anemia became significantly worse, life threaningly so. Our appointment with the neurosurgeon wasn't for another month, but Dr. Zakalik actually took time while he was on vacation to come in and examine Dillon while he was in the hospital. He immediately noticed metopic ridging in addition to the right coronal fusion. He recommended Dr. Ian Jackson as a craniofacial surgeon to do Dillon's surgery with, so we set up appointments with him as well.
The next couple of months were a long roller coaster of emotions and waiting. Dillon had a 3D CT done, which ended up showing bicoronal and metopic craniosynostosis. His surgery date was set for November 16, 2004, when he was 4.5 months old.
The anesthesia team came for Dillon at roughly 8AM that morning. time seemed to stand still the whole day. Surgery was over around 3PM, and it was about 7:30 PM before we could see Dillon. I don't think anything or anyone could have prepared us to see our little tiny baby hooked up to all those machines, with bandages wrapped around his head. that was when we broke down and cried. He was kept sedated for the first day and a half, and the swelling peaked at about 48 hours. the surgery was on Tuesday, and we went home Friday. Dillon was not keeping any food or fluid down, so he went back in for another day of observation. He recovered with amazing speed, and seemed to be a much happier baby now that there was more room for his brilliant little brain to grow. I have a full entry about his surgery in his journal. You can read it by clicking here (http://www.craniokids.org/blog/?p=68)
http://pic16.picturetrail.com/VOL696/2675511/5751166/73786641.jpg http://pic16.picturetrail.com/VOL696/2675511/5751166/73786665.jpg
Yeah! After the waiting and stress, we were finally on the other side! However, because Dillons case was multisutural and syndromatic, we were told from the start he would need at least one more surgery. Dillon's genetecist feels strongly that he has Saethre-Chotzen Syndrome, and after researching, it seems to fit him more than other syndromes. His next surgery will be anytime between now and before he starts kindergarden. The longer his head can grow before it's done, the less chance of a third surgery for him.
Dillon is a very intelligent little man, his problem solving skills are fabulous. Almost too good, it gets him in to trouble :giggle He does have some minor gross motor delays, some fine motor delays, and a severe speech delay (due in part to a mild hearing loss) which he is currently in therapy for. None of these concerns are going to cause permanent issues for him, he is a hard working and determined young man who doesn't let anything slow him down. He is amazing, he has never stopped smiling and has taught the adults around him what true strength really is. :adore
http://pic16.picturetrail.com/VOL696/2675511/7012671/92659795.jpg
http://pic16.picturetrail.com/VOL696/2675511/11955322/193338215.jpg
Dillon Douglas was born on June 25, 2004. He was the baby we had waited years for! I couldn't have asked for a smoother or easier labor and delivery.
He has quite a long story which I keep a journal for, so I will try to keep this short and sweet.
Dillon's aunt and cousin were both born with craniosynostosis, so we knew that there was a chance he could be born with it as well. We knew right away he was a different and special baby, but there were concerns other than his headshape immediately after birth so it wasn't brought up until the next morning.
Dillon was jaundiced before he was 24 hours old so he was being kept nice and toasty under billie lights. His hemoglobin was also low, and he was not able to keep food down. Somehow during all that we forgot about other possibilites until the neonatologist came to talk to us and advised us he was bringing in a genetecist to see Dillon. He explained to us that the folds over the inside of Dillon's eyes, and having only one crease in the palm of his hand were cause for concern (both usually symptoms of Downes syndrome). During that time we advised the neonatologist of the family history of what appeared to be Pfieffer Syndrome.
When Dillon was five days old, he was still being treated for jaundice and was anemic. The genetecist came in that day and he was officially diagnosed with craniosynostosis after an X-ray of his skull showed that his right coronal suture was fused. the initial chromosomal testing all came back normal. We got to take our little man home that afternoon and began to enjoy the fun and challenges of being a parent.
We had begun to make arrangements for an appointment with a neurosurgeon, but at three weeks old, Dillon was back in the hospital because the anemia became significantly worse, life threaningly so. Our appointment with the neurosurgeon wasn't for another month, but Dr. Zakalik actually took time while he was on vacation to come in and examine Dillon while he was in the hospital. He immediately noticed metopic ridging in addition to the right coronal fusion. He recommended Dr. Ian Jackson as a craniofacial surgeon to do Dillon's surgery with, so we set up appointments with him as well.
The next couple of months were a long roller coaster of emotions and waiting. Dillon had a 3D CT done, which ended up showing bicoronal and metopic craniosynostosis. His surgery date was set for November 16, 2004, when he was 4.5 months old.
The anesthesia team came for Dillon at roughly 8AM that morning. time seemed to stand still the whole day. Surgery was over around 3PM, and it was about 7:30 PM before we could see Dillon. I don't think anything or anyone could have prepared us to see our little tiny baby hooked up to all those machines, with bandages wrapped around his head. that was when we broke down and cried. He was kept sedated for the first day and a half, and the swelling peaked at about 48 hours. the surgery was on Tuesday, and we went home Friday. Dillon was not keeping any food or fluid down, so he went back in for another day of observation. He recovered with amazing speed, and seemed to be a much happier baby now that there was more room for his brilliant little brain to grow. I have a full entry about his surgery in his journal. You can read it by clicking here (http://www.craniokids.org/blog/?p=68)
http://pic16.picturetrail.com/VOL696/2675511/5751166/73786641.jpg http://pic16.picturetrail.com/VOL696/2675511/5751166/73786665.jpg
Yeah! After the waiting and stress, we were finally on the other side! However, because Dillons case was multisutural and syndromatic, we were told from the start he would need at least one more surgery. Dillon's genetecist feels strongly that he has Saethre-Chotzen Syndrome, and after researching, it seems to fit him more than other syndromes. His next surgery will be anytime between now and before he starts kindergarden. The longer his head can grow before it's done, the less chance of a third surgery for him.
Dillon is a very intelligent little man, his problem solving skills are fabulous. Almost too good, it gets him in to trouble :giggle He does have some minor gross motor delays, some fine motor delays, and a severe speech delay (due in part to a mild hearing loss) which he is currently in therapy for. None of these concerns are going to cause permanent issues for him, he is a hard working and determined young man who doesn't let anything slow him down. He is amazing, he has never stopped smiling and has taught the adults around him what true strength really is. :adore
http://pic16.picturetrail.com/VOL696/2675511/7012671/92659795.jpg
http://pic16.picturetrail.com/VOL696/2675511/11955322/193338215.jpg