MRI and doctors appointments

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!!!!!

Rambling on about this and that....

Hello, geez, a week has gone by and I haven't blogged : ) and no one said anything. :)

Lots are happening here at our Bungalow. We started going to a dance on Friday nights with the kids in the beach parking lot. This really nice guy sets up his DJ stuff and plays all kinds of kid related music! The adults make a circle and the kids just dance away til the sun goes down. What a way to spend a nice night on the beach. Anne has taking a-liking to Miley Cyrus and Neil Diamond's "Sweet Caroline", JD is into just watching his buddies dance to "you got to move it"...good times.

JD dancing with Daddy


In other news, we caught our first crab on the boat. Well, yes,we got a crab trap (ew, for all that know me well) and we set the trap down into the water with only the best bait in town (ritz crackers, JD told us they would work) and after 3 quick tries in the water and one really long one (If I remember correctly, like an hour and 1/2) we caught our first crab...ew ew ew, but Anne and JD loved it. Again, I disgress into how fun it is to be a kid.



On other notes, we did some rounds of Doctors appointments yesterday that left me feeling a bit sad and happy at the same point. JD's ortho appointment went well, his kyphosis is down to 31 degrees and his wedging of L1 vertebrae is down to 28 and looking fabulous!!! The brace works. The doctor even used the term "you can give him some breaks"!! What I never give the kid breaks...he wears it all waking hours, ok, if you want to be technical not on the boat, too hard with the lifejacket and all....but a REAL break...YIPPPPIEEE! I love this part of our day. I was hoping for the brace to come off all together, but I should be thankful that the brace can be "breaked" here and there. The kids were so good for such a long 6 hours at the hospital, thank god Nanny came and had a limbo cane!!




So, off to other news. The neurosurgeon......notice the dots...I hated it here. JD's head is bigger than it should be all of a sudden he is off 1cm, now to AH parents, that doesn't seem alot but to us LP parents, 1 cm??? I thought immediately, measure again Dr. H. He did and got the same measurement....ugh again. He asked a bunch of questions...does he vomit? no. Headaches? no. Fatigue? no. Digression of movement? certainly not the kid doesn't stop playing sports!!! (thank god) Speech issues? again, he is half me, the kid doesn't keep quiet....so all in all, the doctor went back and forth, hmmmm CT scan, another MRI....SHUNT? what did he just say Shunt? Not my boy. Could this just be a random spot in his life? Should we wait a few months to see? Geez, I am rambling now aren't I? Are you still reading this? yikes. So, he decides along with me (my Mom was with me entertaining the kids) to wait 6 months and we will perform his 2nd MRI to see what is happening with his fluid and his foramen magnum. Scary stuff if you ask me. I really don't like all this talk of a shunt, it scares me to death and quite honestly, when I think of it, it makes me sad :) No pity though, I just want JD to be happy and if putting a shunt in his brain does that well, I will try to be strong and do it. Ugh. Doug and I have decided to get some more opinions from maybe Baltimore at Johns Hopkins. I am calling them tomorrow when I can say Shunt without being sad. JD is JD, happy as a clam for now, he is really smart (if I don't say so myself) and I will keep my head up for him and enjoy him being this way. Dr. H said that if he stays this way and doesn't get bigger, then we might not have to shunt him. God, I hope that is the case. Is it a bad trait to think the worst? Then if they say no shunt, I will think it is even better!!! Ok, so let's hope he stays the same or smaller (does that happen?)

Oh boy, this goes down as one of my rambling posts. That is what these are for right?

I forgot to mention for an extra special treat, we took the kids (Nanny and I) to the Boston Commons for a swan ride! We read the book "Make Way for Ducklings" and the kids were on the hunt for Mr and Mrs Mallard. We found them!!! It was a really nice day at the park and just the put the mind at ease kind of place to go after crazy hospital junk...Thanks Mom for coming! The kids took some silly pictures sitting on the ducks, but they are hilarious so I posted them. See kids are fun!







We are off to a week's vacation with the kids! I cannot wait. I need the rest and time to think. All is good. Both of my kids are healthy and super happy so, what more can I ask for?I will add pictures of our trip when we return. Happy Week!