Hi my name is Whitney I am so glad we found your blog about Owen we have been desperately looking for answers for our boy Mateo born Jan 2011 with Achondroplasia. Owen's story of how he came into this world is so exact to our boy Teo. He was born 2 months early and in the NICU for almost 2 months and has since been on oxygen at home. To our understanding he was/is on oxygen still because of sleep apnea. At his 2nd sleep study the neonatologist told us that he has some type of airway obstruction either in his throat or his nose and reffered us to make an apt with ped specialists. His apts were set up for Sept. 29, 2011. Aug. 20,2011 he stopped breathing at home I rushed him to the hospital. The doctor said all he thought that maybe the obstruction was getting worse and sent us home. Same day about 6 hours later he turned blue and stopped breathing and we had to give him rescue breaths. Since then we arrived at Doernbecher Hospital in Portland, Oregon. Mateo had Surgery on his Foramen Magnum on Aug. 25, 2011. The Neurologist know that the "blue episodes" are seizures but are trying to figure out what medicine will control them and what may be causing them. Mateo had seven seizures this morning they started at 2am and the last one he had was at 10am before they gave him his current seizure medicine. He is taking Keppra and Lacosamide(Vimpat) and are trying Tegretal today while taking away the Vimpat. Neurologist can see he has hydrocephalis but say it is mild and not pooling. We are still concerned that it is/has been a problem currently for Teo. I have heard that commonly in Achondroplasia hydrocephalis does not pool and with MRI does not look like a problem. He was seen by an Optimologist who checked his eyes for pressure just to make sure the hydrocephalis was not tributing to some/all of these issues. No pressure was found but we still have a feeling the hydrocephalis may be a problem and we just dont realize. Teo is also having swallowing issues but ENT says nothing was seen with the scope. We have been at Doernbecher for almost 3 wks now and Docs say to expect another 2wks so they may try to get seizures under control. Everytime he stops breathing I cant breathe. It is so hard to sit back and wait for medicines to work while watching him go through these "blue episodes." We have been researching as much as we can but no real answers ever appear. Please let me know if you have gone through similiar issues or know of anyone who has. Thank you for reading this- I will try to find your blog again but just in case I hope it is okay to leave my phone #1-541-787-0275 Whitney
My son had a rocky start to this world. Days before our son he was born, doctors diagnosed him with lethal skeletal dysplasia and was given a life expectancy of minutes to hours. Fortunately, the doctors were wrong. He has since been diagnosed with Achondroplasia, the most common form of dwarfism. Owen is a little person. To read more about Achondroplasia follow the link.
Where are we now?
Owen is healthy and thriving. He is exceeding expectations according to his doctors and physical therapists. Most impressive of all he started walking at 13 1/2 months! As a lifetime member of Little People of America, he attended his first National Conference in June and has already made several LP friends in his area. He enjoyed a brief amount of fame when his story was featured in the Flint Journal. Otherwise we are an average family living day to day with our extrordinarily cute son.
Catherine cmerciez@comcast.net Dan danbobwright@yahoo.com Owen All contact will be handled through mommy and daddy until such time that Owen can speak (or use a computer, whichever comes first).
3 comments:
And I thought I was going to see something about adorable Owen. Good luck this season on your fantasy football!!!
Hi my name is Whitney I am so glad we found your blog about Owen we have been desperately looking for answers for our boy Mateo born Jan 2011 with Achondroplasia. Owen's story of how he came into this world is so exact to our boy Teo. He was born 2 months early and in the NICU for almost 2 months and has since been on oxygen at home. To our understanding he was/is on oxygen still because of sleep apnea. At his 2nd sleep study the neonatologist told us that he has some type of airway obstruction either in his throat or his nose and reffered us to make an apt with ped specialists. His apts were set up for Sept. 29, 2011. Aug. 20,2011 he stopped breathing at home I rushed him to the hospital. The doctor said all he thought that maybe the obstruction was getting worse and sent us home. Same day about 6 hours later he turned blue and stopped breathing and we had to give him rescue breaths. Since then we arrived at Doernbecher Hospital in Portland, Oregon. Mateo had Surgery on his Foramen Magnum on Aug. 25, 2011. The Neurologist know that the "blue episodes" are seizures but are trying to figure out what medicine will control them and what may be causing them. Mateo had seven seizures this morning they started at 2am and the last one he had was at 10am before they gave him his current seizure medicine. He is taking Keppra and Lacosamide(Vimpat) and are trying Tegretal today while taking away the Vimpat. Neurologist can see he has hydrocephalis but say it is mild and not pooling. We are still concerned that it is/has been a problem currently for Teo. I have heard that commonly in Achondroplasia hydrocephalis does not pool and with MRI does not look like a problem. He was seen by an Optimologist who checked his eyes for pressure just to make sure the hydrocephalis was not tributing to some/all of these issues. No pressure was found but we still have a feeling the hydrocephalis may be a problem and we just dont realize. Teo is also having swallowing issues but ENT says nothing was seen with the scope. We have been at Doernbecher for almost 3 wks now and Docs say to expect another 2wks so they may try to get seizures under control. Everytime he stops breathing I cant breathe. It is so hard to sit back and wait for medicines to work while watching him go through these "blue episodes." We have been researching as much as we can but no real answers ever appear. Please let me know if you have gone through similiar issues or know of anyone who has. Thank you for reading this- I will try to find your blog again but just in case I hope it is okay to leave my phone #1-541-787-0275 Whitney
Whitney email Address: getfitweb@gmail.com
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