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!
9 comments:
Jill,
I am first happy to hear that the brace is working for JD. I amglad you are going to get a second opinion. It is usually pretty rare I thought for kids with achon at JD's age to get a shunt, but I could be wrong. Has his soft spot completely closed? Here's praying that surgery is not necessary and if it is, we will all be behind you and the little man 100%!
JD is lucky to have you and Doug. You'll make the right decisions!
The kids are still super cool and adorable at any rate no matter what!
Hugs,
Jill!
I'm with you on the crabbing - that stuff grosses me out!
Good news about the kyphosis and the brace!
I hope your 2nd opinion visit goes well! Caden has his next run of appointments next week ... I'm crossing my fingers for good news!
Trisha
let's hope he doesn't need a shunt! You will make the right decision.
The brace is working Yea! and JD gets breaks...bigger Yea! I'm sorry it was a somewhat rough day at the hospital. I understand that very well. Try to stay positive, see what the test show and of course we will all hope for the best!! Its so hard thinking of all these things that our kids go through. I have a lot to think about in terms of surgeries for Kaela, so I know how scary it is and how sad it can be...but try to take it one day at a time. It's hard not to jump ahead but things will all work out regardless of what happens. Your kids are so cute! I love the pictures. I hope your vacation is great! Can't wait to read all about it and see pictures of those cute kids of yours :)
Beach dances and boats, you guys got it made! Of course since we just got back from vacation, I am missing the beach now. Such good news that the brace is working and I agree that the whole neurosurgery thing is scary. Trace had neurosurgery for hydrocephalus at 8 mos old - athough he didn't get a shunt. We are looking forward (not) to another MRI in the upcoming weeks. Hang in there, and enjoy the kids!
Lets hope no shunt is needed. And if they say it is, PLEASE get a second opinion with a dwarfism expert. We have been this route with Bryan, they told us on Good Friday he had to come in on Sat. for a shunt placement right away. We spent a grueling 3 days on the phone trying desperately to get someone to give a second opinion. We made the decision on our own (after a huge guilt trip from the neurosurgeon - "I won't be responsible for what might happen") to wait for another opinion. From what we have researched and been told, children with achondroplasia RARELY need shunts. Most shunts are placed by doctors who are not familiar with our kiddos anatomy. Do your research, get more opinions, and most of all go with your gut instinct.
Candi
YaYa to Bryan
P.S. I still check every day.
:0)
Thanks Everyone for your help and advice. We have actually had 4 opinions on this case and 2 were for it (one being from Wilmington) and 2 from Boston with Dr's familiar with achon....Everyone has spoke to each other and we are know going to wait for January, get an MRI and make decisions from there. I just don't like it.
HI Jill - Just wanted to say hello -hope you are doing well, I have been talking to your mom and got her signed up on Facebook - having fun keeping up with everyone - Keeping you and the family in my prayers that things turn out for the best with JD - -
It is hard to wait for the medical issues but if he doesn't need a shunt, you'll be glad you waited!!
I wish Knoah's brace was like JD's. It may make it more tolerable to wear!
Let us know how the vacation was!!
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