In June, Terry and I brought Jack into NYU for an MRI. We stayed over that night with a friend of mine Louise in the city. The MRI went ok. It wasn't scheduled until 3pm and a 2 year old with no food until 3 was not fun!!
The next day we met with Dr. Wisoff at 10:30. We got to the office at about 10 and were going to eat some breakfast, but he took us right in. Who knew a Dr. could be EARLY???? He is amazing! We got to view the MRI results with the Dr. and the results were truly amazing. His cyst has gone down 50-60% in size!!! He has no more midline shift and a little bit of fluid around the front of his skull, but it looked like it was going down. His head size also went down 2 centimeters in size. Dr. Wisoff was very very happy with the scans and how Jack has been doing. We couldn't have been happier.
Since then Jack has been continuing with his therapy every day and doing really great. We LOVE his therapists, and he seems to be making gains regularly. We have been taking Jack to the beach or Mimi's pool as much as we can. Jack just loves the water. He sits all the way up to his neck in the water at long beach, and has no fear of the water at all (which scares us to death). Jack is happiest outside playing on the swingset or playing in the water!!
Our next step is just to continue with Jack's therapy, and go for another MRI in December. I have a picture of the recent MRI on my old phone. Once I get it off of there I will post it. You can visually see the difference in size.
I will try again to be better with my updates!!
Hi, Erica,
ReplyDeleteI found your website after frantically searching the internet after my little guy (almost 1 year old) was diagnosed also with a large arachnoid cyst. Thank you so much for the insight and for sharing your experience. I am so happy to hear that Jack's results were so great! How wonderful! I can imagine the relief that you and your family feel. It is tough to decide what to do, and we are now faced, too, with the fenestration. If you ever want to correspond, please let me know. Sincerely, Adriane N.
Hi Adriane!
ReplyDeleteI am sorry I didn't see this sooner. Like I said I am not a great blogger. I hope everything turned out ok with your little one and he is doing well!! We are coming up on our 6 month post-op check in a week!! So crazy! Jack is doing really well, we are very happy with his results. Feel free to email me if you want to, ejmcsweeney@yahoo.com
Best,
Erica