Ugh, some of you know already but we are taking JD to have a MRI this week. I hate doing all the anethesia stuff..etc....but somehow we do it and it gets done.
Our neurosurgeon has informed us that JD head is getting too big ...over the 2nd standard deviation for kids with achon. Ironically, his only sympton is a big head...no tingling, numbness, headaches, lathargic...NOTHING. So, he wants to put in a shunt. ugh ugh. His reasoning, if JD's head gets too big too fast, he can have some serious problems down the road (maybe not tomorrow but maybe 5 years or 10 years away...no one can know for sure) such as memory loss, cognitive issues, plus a big head with a little body, he might fall alot or children will be even meaner than the usual kids.
So, we are getting the MRI to see what is really going on inside and then we are taking him for a 2nd opinion to another great Hospital in Boston, on our Neuro's advice.
I was not taking this well when we heard the news...but it has been 3 weeks of thinking about it and well, we have to go and do what is right for Jonathan. We haven't screwed up yet, so I anticipate we will make the right decision for him with our very trusting doctor. (our DR has chatted with people in DE and we feel confident he has good info for us) I research everything, sometimes too much to make myself feel like I could intern in the neuro floor at one of the hospitals. Thank you all for your kind words that I have received as we go through this process. Having the MRI on Wednesday seems like such a piece of cake (his 3rd one) compared to a shunt...funny how things get into perspective.
In other plans, JD and Anne are dressing as Bumblebee the Transformer and Hannah Montana for Halloween which is my most favorite holiday, and doesn't look like it is either of my kids. No one wanted to wear their costume for a party we went to today. Oh well, I can hope they will still go trick or treating with me.
Happy Halloween everyone!!!!!
{Spring 2023}
2 months ago
6 comments:
We will be thinking of JD on Wednesday. Keep us posted! I can't wait to see the pics of them in their costumes!
We'll be thinking of you guys this week! Trace has had 3 MRIs and had a ETV when he was 9 mos, it wasn't too bad at all. Maybe an ETV could be an option for JD as well? If it is successful, then there are no revision surgeries or foreign hardware. Hugs to you guys and Happy Halloween!
I'm going to stay tuned to hear what the results say from the MRI as well as some cute Halloween pictures. I'll be thinking of you this week.
I don't like dressing up either. We get an extra point on our exam if we wear a costume to class tomorrow. I am almost willing to sacrifice my extra point to not dress up.
I'll check in with you tomorrow, after my exam. I can try to stop by the hospital on my way home. I didn't go to Tufts today because of my cold, didn't want to infect my patients. Hugs(I don't mind virutal ones) to my amazing sister!!!
I will be thinking of you all day tomorrow! I really hope he can avoid surgery. Did his head jump or has it always stayed on the larger curve? It's strange because he has no other symptoms. These kids and their heads. Pres was telling me the back of his head hurt on occasion. (Usually when he wanted attention). I brought it up to Ain who attributed his head complaints to sinus and the massive amounts of stuffiness he has with these tonsils since he is showing no neurological symptoms for decompression (and four to me is old for decompression). But I guess hydro is what they are looking for with JD? I hope that all goes well. Praying for you guys!!!!
You guys are in our thoughts today! We hope that all goes well!
Looking forward to seeing pictures of your adorable kids in their Halloween costumes! Happy Halloween!
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