Wednesday, just 24 hours after his MRI, we were able to meet with a neurologist at our local Children's Hospital- how amazingly fast is that? We were able to get what we are hopeful, is an accurate diagnosis for Asher. He has septo-optic dysplasia. Sounds scary, and it most certainly could be, but in his case, it appears to be best-case-scenario. Both he and Annalise have been cleared of FASD (fetal alcohol syndrome disorder)- which we are surprised and thrilled by. We are guessing the fact that their birth mother had been in jail right up to her getting pregnant may be the reason. Regardless, we are beyond thrilled to be able to cross that "issue" off our list.
What is septo-optic dysplasia? In a nutshell it's a genetic disorder that affects 3 areas: 1)optic nerves (vision), 2)abnormal development of the brain (academic and physical delays) and 3)pituitary issues (being short). In only about 30% of the cases do people have "issues" all 3 areas- Asher is part of this select group. One of the symptoms of this disorder is constant thirst- which he has! We are thankful for an explanation other than diabetes. He will be developmentally delayed/challenged and need lots of help academically. He may need growth hormone therapy to grow. His vision will typically be poor.
What can we do about it? Right now, nothing. We meet with an endocrinologist the beginning of March and he will help us determine what kinds of hormone therapies Asher will need. Physical and occupational therapies are going to start in the next few weeks- the paperwork to get him evaluated has already been submitted. Next week he sees the ophthalmologist for his re-check, and this diagnosis will be a big part of our discussion. Thankfully it seems that his eye condition does not typically degenerate, so there is hope that we may be able to improve his vision with surgery or glasses.
When the neurologist observed Asher, she was astonished at how high functioning he is- how he can run and jump, wants to look at pictures on our phones, how quickly he is learning English, and that he is on the cusp of being potty trained. He seems to be on the less-affected side of this disorder.
It may seem scary- but we are thankful for answers.
We are thankful that this is a diagnosis that gives Asher hope of a future- with help, but a future none the less!
We are thankful that God thinks we are smart enough to learn all about this disorder!
It certainly seems that our family is a good fit for him!
Once again, God's plan is clearly amazing!
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| After having his blood pressure taken- notice the cowboy boots he's rocking? |
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| The Children's Hospital has the best waiting rooms! |
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| Charming the receptionists.... |
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| All done- running around while we waited for our van |
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| They both did super! |
