All-
We have really unfortunate news to report. We received a call yesterday that Jake's hand surgeon hurt his back and they have to postpone his surgery on November 7th. As of now they have no idea as to when a new surgery can be scheduled and they were already working on January scheduling. Jake has his head surgery in January so unless something works out he will have to wait till spring to have his first rather than having his second and final hand surgery. We are very distraught by this news and frustrated with everything we have faced lately including a liver scare with Luke and now he has to go the hospital for a GI probe next week. We will keep you posted as to what happens next but please think good thoughts and help us receive the stroke of good luck we really need.
Love,
Lance and Sam
Wednesday, October 24, 2007
Monday, October 1, 2007
Intro Post
Jake Sidney Reiss and Luke Rae Reiss were born on May 27th, 2007. Within minutes of their birth in the delivery room, we realized something was different about Jake, something that we would soon find out would change his path and our lives forever. Jake was diagnosed with Apert syndrome which is a rare genetic mutation in approx. 1 in 200,000 births that when it occurs causes fusion of the hands and feet as well as premature fusion of the sutures in the skull. Due to this condition, Jake will face many surgeries to alleviate the many characteristics of this disorder.
Apert syndrome is primarily characterized by specific malformations of the skull, midface, hands, and feet. The skull is prematurely fused and unable to grow normally; the midface (that area of the face from the middle of the eye socket to the upper jaw) appears retruded or sunken; and the fingers and toes are fused together in varying degrees.
Children with this disorder are affected in other ways besides the physical characteristics that are common across the syndrome. Some have normal intelligence while the majority are a little slow with an IQ around 100, and then a small minority have more extreme mental challenges.
Jake so far has impressed the many doctors that have met with him and they are encouraged by what they see. Other families with Apert children have also commented on Jake having a seemingly mild case. We are encouraged and so far he has been on par with developmental milestones. We can only hope as one Dr. mentioned, that Jake will be in the upper echelon for this disorder.
We plan on using this as an effective way for family and loved ones to keep up to date with Jake's recovery from his many surgeries and his general progress. We encourage all to visit the blog for updates especially during his surgeries so we can update everyone without having to retell his story over and over again.
Jake's first surgery will take place in Boston by the world renowned surgeon Joseph Upton. Upon meeting Jake, Dr. Upton fulfilled our first dream by informing us he could give Jake five fingers on each hand and make this happen in only two surgeries. Previously, we were told he would only have four fingers and it would require 10 surgeries.
We are committed to giving Jake the best medical care he can receive and as you can see already we are willing to travel if it means the best doctors will work on Jake.
Lastly, we welcome you to Jake's blog and we know the journey ahead will be long and challenging but we invite you to share in the experience and propel Jake to great heights through all of our collective positive thinking.
Apert syndrome is primarily characterized by specific malformations of the skull, midface, hands, and feet. The skull is prematurely fused and unable to grow normally; the midface (that area of the face from the middle of the eye socket to the upper jaw) appears retruded or sunken; and the fingers and toes are fused together in varying degrees.
Children with this disorder are affected in other ways besides the physical characteristics that are common across the syndrome. Some have normal intelligence while the majority are a little slow with an IQ around 100, and then a small minority have more extreme mental challenges.
Jake so far has impressed the many doctors that have met with him and they are encouraged by what they see. Other families with Apert children have also commented on Jake having a seemingly mild case. We are encouraged and so far he has been on par with developmental milestones. We can only hope as one Dr. mentioned, that Jake will be in the upper echelon for this disorder.
We plan on using this as an effective way for family and loved ones to keep up to date with Jake's recovery from his many surgeries and his general progress. We encourage all to visit the blog for updates especially during his surgeries so we can update everyone without having to retell his story over and over again.
Jake's first surgery will take place in Boston by the world renowned surgeon Joseph Upton. Upon meeting Jake, Dr. Upton fulfilled our first dream by informing us he could give Jake five fingers on each hand and make this happen in only two surgeries. Previously, we were told he would only have four fingers and it would require 10 surgeries.
We are committed to giving Jake the best medical care he can receive and as you can see already we are willing to travel if it means the best doctors will work on Jake.
Lastly, we welcome you to Jake's blog and we know the journey ahead will be long and challenging but we invite you to share in the experience and propel Jake to great heights through all of our collective positive thinking.
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