Hello from the Sorenson home! I have been meaning to get back to blogging; however, time has been very limited. With 2 active children, there is never enough time for anything it seems.
About 3 weeks ago we were finally able to get Colton into see the geneticist and developmental pediatrician.
He has been diagnosed with Smith-Magenis Syndrome. He is missing a portion of his chromosome 17.
It is a syndrome that is not very common. 1 in 25000 are diagnosed. The only way to diagnose the syndrome is through extensive chromosome testing. Just like anything, there are different levels of diagnosis. Colton has a moderate to minor deletion. The syndrome has a series of symptoms that apply to Colton; however, some of the more major medical conditions do not seem to be present. The biggest battles that are apparent right now for him is his behavioral issues, developmental delay, speech delay, sleeping issues and sensory issues. We have 6 more hours of consultation with therapist before we start his speech therapy, occupational therapy, and physical therapy. He has actually been in programs receiving similar treatments since he was 2; however, now we will be going through independent therapy as well as the therapy he is currently getting at school. The fun begins!
It is a blessing to know what we are dealing with now. For the past 4 years it has been a guessing game and very hard to deal with certain issues with him because I did not understand what was going on. Now I have a game plan. Some days are more challenging than others. We are working through it though. When we started battling certain challenges with Colton, my wonderful pediatrician put it to me this way, "God gave me Colton for a reason!" He only gives special children to special people that he knows can handle it. Some days I actually wonder. Colton at times requires an unmeasurable amount of patients, and those who know me....well, do I need to say more.
He is about 2 years behind on his speech and about 1 year behind on his cognitive understanding. His fine motor skills are behind and due to hypotonia, his physical skills need some fine tuning. I am confident that with therapies and prayer, everything will turn out just as it should.
With that being said, please add our family to your prayers. Pray that Colton does well in his therapies and give him patients with me too. I know that the Lord does not put more on your shoulders than you can handle.
Thought I should bring y'all up to date on what has been going on with Colton. Thanks for your friendship and support! One of the other characteristics of this syndrome is an endearing, affectionate personality.....wow what a wonderful thing to be blessed with! All will turn out fine. I have absolute peace about it.
Suzanne
