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Michael Jr.'s Cranial Stenosis Journey

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Kenai, AK
Michael Jr.'s Cranial Stenosis Journey

My sweet little boy Michael was recently diagnosed with Lambdoid Cranial Stenosis this is his story.

01/16/2024

It's been awhile since I posted. So here is a quick update. As the doctor's warned us we are getting follow up CT scan soon. It appears Michael has ridging on the top of his skull. It seems the helmet did minimal changes to his skull and now as his brain grows it it causing his skull to be misshaped. He will need to be monitored until he is 4 and may still need surgery. Will post upon getting his next ct what they tell us. Other than that Michael is a wild toddler who loves to get into everything. He is happy and is a fun child.

06/25/2023

Been awhile since I posted.
Michael had an appointment last week. He is a healthy happy boy. His head is still misshaped. They are monitoring him closely because he still has severe torticollis and it can cause ridging where his head is still not fused shut.They don't seem concerned he has a flat head and keep reassuring us he will grow into his head. He is going to physical therapy and does not like it one bit. However, I have seen improvement. At 18 months they will reevaluate and let us know where and what to do next if there is anything at all.

** Note the slight tilt in his head. Although it does make for cute pictures like he is posing.

05/02/2023

Quick update. Meeting with a neurologist Friday. Here's to good news.

04/23/2023

Quick update on Michael. Michael has out grown his helmet. So we had a ct scan to determine if we need another helmet. His head is still extremely mis-shaped. He is also experiencing something called silent seizures. We are following up with a neurologist in a couple weeks to see what steps to take next.

03/21/2023

My amazing boy is one!!! Yay!!! With that we had his year child well check. Michael Jr. is a happy healthy big boy.

As for his health the doctor has not approved the complete removal of his helmet. His torticollis is still moderate and he needs to continue physical therapy. There is a slight chance of ridging, if we take him off of the helmet to soon and that would mean surgery. So, he has to be monitored for another year. His head is changing shape and the helmet is working. This is a slow process but we are on the right path. I'll keep everyone posted as we get news.

03/11/2023

Update..... Michael has been cleared to wear his helmet only at bedtime. I can tell you, he is absolutely thrilled. Yay!!!

02/10/2023

Another head scan and adjustments to the helmet. Hopefully, we only have a few more months of the helmet left.

01/14/2023

Quick update. We had a follow up on Wednesday. Michael has gone from 13% asymmetry to 9%. Our goal is less than 5%. Good news is we are in the clear and there is no need for surgery. I'm overwhelmed with joy. He will need to wear the helmet for another 3 to 5 months and he should be a fixed healthy boy. Yay!!!

12/10/2022

This amazing little fellow had his 1 month post helmet therapy check up today. He went from having a 13% asymmetrical head to having an 11% asymmetrical head. Meaning the helmet is working and decreases his need for surgery. We have another follow up at the beginning of next year and may be in the clear. Yay!!!

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Kenai, AK
99611

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