Lots of tears….

Tears of JOY!!!! We had our follow up with the neurosurgeon and craniofacial plastic surgeon today, and they finally gave us the results of G’s ICP monitoring….he does NOT have high pressure in his head, meaning we don’t have to crack his skull open!!!!

At this point we will follow up annually – they will be checking in with us on developmental milestones (we want to ensure he doesn’t plateau) and irritability, as those would be two warning signs of his brain running out of room. Otherwise, he will have MRI/CT scans every 2-3 years to check how things are growing, but at this time, no action needed!

We are so incredibly relieved! We were not expecting such good news either, so this was incredibly refreshing! I was crying from happiness when a nurse came in and saw me crying and was thoroughly confused…she said “I am sorry, I thought they told me to schedule you for next year, but there must have been some confusion…” assuming my tears were from fear and sadness! I had to explain I was just happy and she had the right info and patient 🙂

Speaking of development, G has mastered “mama” at 3 1/2 years old. I couldn’t be more thrilled. The only issue however, is that 90% of that time, he is screaming the word in frustration, sadness, or anger. It’s not a loving “I love you so much dear mama” but “mama why are you doing this to me mama?????”  I love it nonetheless!

Here is a video of G standing so tall and straight today (if you are seeing this in email, you must click to go to the webpage to see the video)

Thank you so much for all the thoughts, encouragement, and prayers. We are truly blessed by the community of friends and family surrounding us, and so thankful for all the love and support!

 

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