View Full Version : Off to NYC
11-10-2008, 11:42 AM
So we are getting ready for tomorrow. We have to leave out at like 3:00am to drive to fly to NYC. LONG day ahead of us. We probably won't be home until 10:00pm or after and MIL is in town to watch Reagan...so I will update you guys as soon as I can.
Logan had her appointment with Baby Net this morning. We should know something about that on Wednesday.
Got a call from Dr. Abbott's office this morning saying that he might not be able to meet with us tomorrow..but that if that happens it will be his nurse practioner and Dr. S. At this point that HAS to be okay. You know.. Hopefully he will make it! I pray that he does.
So we are off LATE tonight .. or EARLY tomorrow morning! Our appointment is at 11:30 am. Oh I hope the day goes smoothly!
Thanks for all the support ladies!!!!
11-10-2008, 11:44 AM
:hugg Best of luck tomorrow!!!! I'll be thinking about you guys all day, I hope everything goes smooth for you and Logan.
Hope your trip is safe and thorough and the Dr is able to make the appt. We'll be praying for you guys.
11-10-2008, 12:11 PM
Good luck Amy! I am praying for easy travels and a great appointment! HUGS!
11-10-2008, 12:19 PM
Amy, good luck tomorrow!!!! I hope you finally get some good answers to all your questions and that Logan has a nice, QUIET trip. Can't wait to hear your update!!!!
11-10-2008, 02:50 PM
best of luck, hope you get all the answers you desperately need! can't wait to hear about it!
11-10-2008, 03:12 PM
Best of luck Amy!! I will pray that your travels are safe and that your day goes smoothly! I hope you finally get all the answers you are looking for. Are you flying to and from NY in the same day?
Can't wait to hear your update after you get home!
11-10-2008, 03:15 PM
11-10-2008, 03:38 PM
I emailed Dr. S about Dr. Abbott potentially not being available for our appointment and how is that going to work, we wanted him to read the MRI, etc.. Dr. S emailed me back within the hour and said "we will be able to get everything done one way or another."
I spoke with Dr. Abbott's nurse and she said that he might be in emergency surgery in the morning. She said that she would be there and that she already spoke with Dr. S and that everything will be fine...that if we have any questions when we leave, she will have Dr. Abbott call us- if he can't make it. And she added that she has been his nurse for 20 plus years.
Mindy, yes we are flying up for the appointment and then flying back the same day.
Thanks for the prayers and well wishes!!!
11-10-2008, 04:17 PM
Sending big hugs for your trip! Safe travels! Look forward to hearing what you find out.
11-11-2008, 12:52 PM
Thinking and praying for you guys today! I hope you get some concrete answers and I hope Logan does okay on the plane ride. Can't wait to hear back from you.
11-11-2008, 12:57 PM
I pray that everything goes well for you guys today and you finally get some answers!! :hugg :hugg
11-11-2008, 07:15 PM
Good luck Amy..hope all went wll today
11-11-2008, 11:17 PM
I'm thinking of you guys!!! I hope everything went smoothly. Fill us in when you get a chance!!
11-11-2008, 11:21 PM
I'm guessing its late there now, hope you survived! Can't wait to hear!
11-11-2008, 11:23 PM
I hope the trip went well. Can't wait to hear what you find out. :hugg and :pray
11-11-2008, 11:29 PM
Just checking in. Hope everything went well today and you got some answers.
11-12-2008, 12:53 AM
Keep us posted!! Hope it was a sucessful trip!
11-12-2008, 09:53 AM
Amy - are you back? Would love to know how your trip went when you're able to share.
11-12-2008, 10:02 AM
We're all on pins and needles! Hope to hear something soon!! (of course we're hoping for good news!)
11-12-2008, 10:07 AM
I'm just checking in for an update. I've been praying for y'all for safe travels and for a good report. I hope to hear something soon.
11-12-2008, 10:19 AM
We are back..tired..but all in all it went smoothly! Logan did awesome on the plane. She was so exhausted that she fell asleep! But, I know that that is not what you are wanting to hear about..so..
We did not get to meet with Dr. Abbott and Dr. Staffenberg at the same time. Dr. Abbott was in surgery, so we met with him around 1:30pm. So first our meeting with Dr. S. Dr. S said that Logan' head reminds him of another little girl, Olivia, and that he is going to get me in touch with her mother. He said everything about Logan reminded him of her. He said that Olivia is going to be published one day because she too is not the typical metopic and that they believe something with the squamosal sutures is involved as well. That their headshape is not normal but that it can't be fully explained just by the metopic suture. He said that the squamosal sutures are not typically associated with cranio at this time. He said that because of where they are located you can not tell with out operating, getting in and seeing them-doesn't show up well on x-ray or CT scan. Oh..the squamosal sutures are at the ear. He said the Logan, and Olivia, have the pinched temples, shadowing, narrow and long from the ears forward and a bossy forehead. To use his word, a "dolphin" forehead that comes out. He said that this is because the brain is pushing it out forward since it can't go back (because of the squamosal stuff). He said that Olivia did end up with surgery. He said that basically they monitored her over several months and that she started to have issues and they did the surgery. Same surgery for typical cranio..CVR/FOA. I asked him if it was normal for Logan's symptoms to come and go. He said that I needed to ask Dr. Abbott, but that it made sense that if Logan did not have enough room and was going through a period that her brain was trying to grow..that it would be worse during that period. (FYI..Logan does seem to be doing better these days.) So hearing that he said that he was okay watching her for a couple more months to see what she does. He said that they do the same surgery up until age 2..so we had time. He said after that it is more complicated. He said that we should journal and take pictures of her every Sunday while she is in the bath with her hair wet. Then we will see where we are at. I asked him how he thought she would grow with this..cosmetically..and he said that we had no way to know for sure. So he was going to try to come back when we could meet with Dr. Abbott..but it didn't work out. BUT, by the time we got home last night he had already emailed me to make sure that I got everything that I needed out of the appointment.
Met with Dr. Abbott. Dr. Abbott said that he saw nothing in Logan's MRI..nothing that would indicate ICP or that the brain did not have enough room right now. BUT, said that it is entirely possible that Logan did have ICP weeks ago. He said that your brain goes through growth spurts too and that if Logan did not have enough room for her brain to grow..that it may have caused pressure and that her body used this pressure on the brain to "blow" the skull plates out to make room. He said that that would account for the coming and going of her symptoms (which did seem to indicate ICP). He said that this last time was probably so bad and lasted so long because the brain was growing so rapidly then.(And her head did have big changes during that time.) He said the good news about that is that she is not, from what he can tell on the MRI and by looking at her- we all know she is not severe, that the pressure is not constant. He said that the other good news is that her brain is almost done growing so the worst may be behind us and we may never see those things again. He said that now we are more sensitized to it and that if it happens again, he would put in a pressure monitor to check. He said that that is a 15 min surgical procedure and about two to three days of our time. He said he would do that first. He said that if it does happen again or she regresses and doesn't get stuff back, that we should do the monitor and that if we can not find anyone in our area that wants to do it, to call him and he will find a doctor near us to do it..for him. He said that he would not do surgery on Logan at this point..not for cosmetic reasons or for potential ICP. He too said that we had time ...up until age 2 to see how she grows and develops, etc..
So I DID get answers, but still don't have closure. My gut is telling me that Dr. S is thinking surgery. But then Dr. Abbott said he wouldn't at this time. I think that if Logan had gone up there a few weeks ago when she was so bad that both docs would say surgery. But now that she is doing a little better...the thinking is why not wait and see what happens. Like Dr. S said, if it happens again then we all know that she needs the surgery.
I do have some questions for Dr. S. I plan to email him. He was VERY interested in the shape of Logan's head and this other little girl that they are going to publish eventually. SO what does all that mean. I will ask.
Edit to add- I just looked up the squamosal suture and actually I misunderstood him. They are at the ear ...so it wouldn't allow the back of the head to grow..which is why you have the long part from the ears forward and the bossy forehead...the brain grows out more there. I emailed him a few questions..
11-12-2008, 10:53 AM
Oh my goodness....first of all I'm glad she did good on the plane, to me, it sounds like she would benefit from surgery (my opinion only) Dr. S sounds wonderful...it sounds like he's going to stay on top of this for sure. Just do as he said, keep a journal, pictures and watch.
11-12-2008, 11:07 AM
I'm glad your trip went well, but oh boy, how confusing! The good thing is that the brain is not showing any signs of ICP on the MRI. I can totally understand the coming and going of the symptoms, as Isaac's symptoms do the same thing. I'm glad that nothing "extra" showed up on the MRI. That is very interesting about the girl with the same headshape. I'm glad you're going to continue to ask Dr. S all the questions you have. I'm praying that the worst is over for Logan and she won't have any more symptoms! (((hugs)))
11-12-2008, 11:54 AM
Wow! Dr. S sounds wonderful! I hope that Logan is out of the worst of it and doesnt' get anymore symptoms.
I kinda agree with Janet though, it seems to me that she would benefit from surgery even though she is classified "mild".
Best of luck. Keep taking pictures. I really hope she gets better and doesn't get ICP again.
11-12-2008, 11:59 AM
Wow! Sounds like a fantastic visit! It has to be comforting that both doctors said the ICP could come and go...for me, I would be relieved I wasn't going crazy! :) It sounds like, although you have to wait, it won't be a super prolonged time before you have definitive answers!
11-12-2008, 12:07 PM
Holy WOW!!! Sound like you had a very fruitfull NYC trip!!!! Lots to take in though... I agree, it sounds like she would benifit from surgery if the ICP symptoms pop up again. I'm glad Dr. S is taking the symptoms seriously!!! Nothing worse than being poo poo'd about things you know are going on with your child that aren't "normal". Good job Mommy!!!!! Keep us posted!
11-12-2008, 12:51 PM
Well glad they explained it fully. I like the idea of taking weekly pictures....no guessing at whether it looks better or worse one week from the next.
11-12-2008, 02:58 PM
Welcome back! I'm so glad that Logan behaved herself for you on the plane. That must have been great. As for the visit, even though you didn't come back with concrete answers as to what the future will be, at least now you have a definate plan. Keep taking those pics, monitor her symptoms, and go from there.
I remember seeing a post by another mom whose baby had closure of the squamosal suture at birth. The head shape was weird, but after surgery, the baby looked amazing! I'll try to find it.
11-12-2008, 03:25 PM
Glad it went well! I hope this ride is over for Logan too!! But it's good to know that you can do the icp monitering if needed.
11-12-2008, 07:50 PM
Glad it was a good trip and Logan went well. Maybe no definite answers but at least you have some idea what you're dealing with. Do they want to see you again in a certain amount of time, or is it dependent on the photos and symptoms you send through?
Must have been an emotional and stressful day both physically and mentally, hope you're getting a chance to relax a bit today!
11-12-2008, 08:24 PM
wow...what a trup!! Sounds like you are starting to get some answers...sorry you did not get a 100% for-sure answer! I AM SO HAPPY that Logan seems to be getting better! You deserve some good rest now!
11-13-2008, 12:22 AM
Glad to hear Logan did good on the plane, I know that was a big worry for you. Also very glad to hear that you got a lot of your questions answered although not 100% closure as you were hoping for. It will be hard to watch and wait for another year. I agree with the coming and going of symptoms, we go through that as well. It never fails that as soon as we have an appointment he is doing well, no wonder the docs look at us funny when we come in. I so wish I could take Jimmy to see Dr. Staffenberg but flying him 3000 miles across the country to see yet another doctor will not fly with my husband or finances or job right now. I hope you are all rested up from your trip and Logan's slip on the tile.
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