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| Elias without his helmet with his big brother. |
Genetics testing
The genetics testing was done to see if Elias has a syndrome that is related to his head condition. All the research Sean and I have done pointed to Elias not having a syndrome but we're not doctors so we went.
We had a really nice resident doctor who was specializing in pediatrics. Dr. James (I only remember his first name) was sent in before the "actual" doctor to ask me some questions about our family tree/genetic makeup. I really should have prepared more for this "test" because I had to think of any disease or illness that had ever happened in my or Sean's family. Never the less, I think I got most of the information that was important for the doctors to understand our genetic makeup. I was also asked some awkward questions which I think the resident was trying really hard to be kind about. One of the questions was "Is there a chance that you are related to Sean?" Nope, definitely not.
Once we were done with the first doctor, the second one came in. (Unfortunately, I forget his name. He said it a couple of times and I still didn't get it. Also, I shredded my medical papers for Elias so if it was on there I have no proof of it. Lets call him Dr. G for Genetics) Dr. G was also very nice. He asked me if I had done any research on Elias' condition and after I replied yes, he continued to tell me that Elias' condition usually has significant physical signs if it is a syndrome. The signs include his fingers and toes are fused together as well as a large nose, which Elias has neither of those. There might be more conditions that relate to the syndrome but the previous examples are the most noticeable.
So just like that, we were cleared from the syndrome. Dr. G told me that it is unlikely that Elias has a syndrome dealing with Craniosyntosis and that sometimes these things happen. He did note that Elias' sclera (whites of his eyes) were grey. Dr. G said that likely Nathan had it as a baby and that it will change to white as he grows. No need for concern. We were told that we didn't need to do any follow up appointments but could always come back if in the future Elias showed signs of developmental problems.
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| Can you tell they are related? Sean is on the right. What a cutie!! Elias definitely has Momma's chin. |
Follow-up Appointment with Neurosurgeon (Serletis)/Plastic Surgeon (McGregor)
The follow-up appointment with Dr. McGregor and Dr. Serletis was short. Dr. McGregor checked Elias' head and was really happy with the progress. She told us that we also didn't need to follow up with her anymore. (So we dropped two doctors in one day!) Dr. Serletis will still follow us as Elias continues to grow. We might also be seen by Dr. Ross, who is a neurosurgeon. I didn't ask why we are seeing different neurosurgeons but my guess is that we will see whoever is available at the time.
Star Scan
The last appointment was a star scan. Elias wasn't very cooperative for this scan as the bigger he gets the more he wants to wiggle. He doesn't like his head to be held but enjoyed looking at himself in the reflective surface of the machine. I might bring a mirror next time so he can distract himself and hopefully will stay still.
This scan was for comparative reasons. Next helmet fitting appointment I should get the results of how his head has changed from before he had his helmet, post surgery, to now. Hopefully I will get a picture and show you the results.
Up Next
- Continue helmet adjustments to make sure everything is going well - about every 3-4 weeks
- Follow-up appointment with Dr. Serletis or Dr. Ross - end of October
A big thank-you goes out to my Father-in-law, Dave! He came into the city to look after Nathan while I took Elias to the appointments. Although the appointments went smoother than expected, I was glad to not have to "drag" a three year old around the hospital all day.
