At birth I noticed something wasn't right.
Fast forward to January 2016 after several rounds of genetic testing, many blood draws, evaluations, MRIs, specialists, feeding therapy, swallow studies, orthotics, glasses...... You get the idea
We have have an answer it is called 15Q11.2 microdeletion syndrome. We decided to have the other two boys tested and they two have this syndrome. Because all three have it it can be assumed one of us is a carrier as well. We don't know who, but I am almost positive that Dan is the carrier...why?.....because I am far to perfect. HAHA. Seriously it doesn't really matter. If you really want to know we will allow you pay for the genetic testing to find out. Let us know.
So you ask what is 15Q blah blah blah? A set of genes comes from mom and a set from dad. This error happens on the 15 chromosome on the Q arm, or bottom long arm, at place 11.2. Because this is a small deletion it is called microdeletion. They are able to measure the amount of missing information. The test is called a Microarray for Landon's test, the other two had a FISH test. A less expensive test as they know what area on the genome to look for any abnormalities. If you google it you will not find very much. This is what the geneticist told us to read.
There is wide range of symptoms, from nothing at all to Austism, ADHD, developmental delays, hypotonia, speech delay, learning disabilities, feeding issues, behavioral issues.......
Benjamin has ASD, ADHD, learning disabilities.
Grayson has ADHD, learning disabilities and behavioral issues.
Landon has stuff going on too.
So what does this all mean? Treatment is symptomatic. They will continue to struggle in school. Things like math, reading, and writing that come so easy to some, will challenge my children until the day they die. Behavior issues are our norm. Somethings are noticeable others are not. People will continue to misunderstand them, people will continue to think we are bad parents, life will continue.....I will continue to advocate for them, push for inclusion, push for awareness. People will continue to talk behind my back, say hurtful things, and not include us in their lives.
Life will go on.........
We have have an answer it is called 15Q11.2 microdeletion syndrome. We decided to have the other two boys tested and they two have this syndrome. Because all three have it it can be assumed one of us is a carrier as well. We don't know who, but I am almost positive that Dan is the carrier...why?.....because I am far to perfect. HAHA. Seriously it doesn't really matter. If you really want to know we will allow you pay for the genetic testing to find out. Let us know.
So you ask what is 15Q blah blah blah? A set of genes comes from mom and a set from dad. This error happens on the 15 chromosome on the Q arm, or bottom long arm, at place 11.2. Because this is a small deletion it is called microdeletion. They are able to measure the amount of missing information. The test is called a Microarray for Landon's test, the other two had a FISH test. A less expensive test as they know what area on the genome to look for any abnormalities. If you google it you will not find very much. This is what the geneticist told us to read.
There is wide range of symptoms, from nothing at all to Austism, ADHD, developmental delays, hypotonia, speech delay, learning disabilities, feeding issues, behavioral issues.......
Benjamin has ASD, ADHD, learning disabilities.
Grayson has ADHD, learning disabilities and behavioral issues.
Landon has stuff going on too.
So what does this all mean? Treatment is symptomatic. They will continue to struggle in school. Things like math, reading, and writing that come so easy to some, will challenge my children until the day they die. Behavior issues are our norm. Somethings are noticeable others are not. People will continue to misunderstand them, people will continue to think we are bad parents, life will continue.....I will continue to advocate for them, push for inclusion, push for awareness. People will continue to talk behind my back, say hurtful things, and not include us in their lives.
Life will go on.........
3 comments:
This is difficult news, but glad you have some answers. You are a fantastic advocate for your children, and they are blessed to have you and Dan as their parents.
Julie - Thank you for sharing this. Continued prayers for you; especially for His peace.
Awareness is the key! It helps for you to know but also to share with others to make them aware. Not that everyone will understand because they won't. People want and think everything can just be "fixed"! Instantly! We know that isn't the case. That's why your the momma bear and you protect,advocate and Love! Life is complex and sometimes more complex for some! I think you have wonderful boys, each one unique! That is how it's suppose to be. Each of our kids has their own identity and they do not want to be compared to or have to compete with their own siblings. I'm just finding your Blog so I hope to follow along on your journey. God Bless You!
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