Dilema!! Please help with my decision!!

[snickers9246]

We have another appointment at Sick Kids in October, another follow-up with the Opthamologist. I'm still concerned that Holly still has a large soft spot. It's still about 1 inch wide by 3-4 inches long. I wrote down there and asked the nurse co-ordinator if since we were down there if I should bring her to see her PS as well. He had told us that it would take a year to 14 months from surgery for her to heal all the way. I'm just concerned cause the soft spot is still so big, it doesn't seem like there's been any progress in it closing in the past few months.

He told me to let them know the time of Holly's appointment and he would have her scheduled in to see Dr. Phillips. He said it would take a good 12-14 months for it to completely heal as Dr. Phillips had said. Here's my dilema. Should I make an appointment or should I just write back and say thanks and worry about it if it's not healed by Christmas. We live almost 5 hours away (about 4 1/2) and I just thought that while we're there we could get her checked again, but I don't want to be a pain and get an appointment just for him to tell me the same thing, can't do nothing etc. until after the 14 months.

Any suggestions?? Should I not worry so much? Jason said that he thought we should wait, and I said, well, it's not like a special trip, we'll be right there. He agrees with that but I just know that he's very busy and there's probably a lot more serious things he needs to be doing other than checking my peanuts head every couple of months and I don't want to seem neurotic! :crazy

So what do you Mom's think???

[Jennifer]

Ohh, good question! Personally, if I was driving 5 hours, I'd say you might as well see him- even if it's just a quick- yep, it's still there and it's still okay!, at least you'll know.....

[Katie]

Dillon is almost two years post op and still has one, I still worry about his too. Although I will admit, in the past few months it has become smaller. I would definitely request an appointment while you were there! Tell them you understand it can take time but it is still large and concerning to you, and you have nearly a five hour drive to get there. He may end up saying the same thing, but at least you will know he has actually felt it and you will have peace of mind :hugg

[snickers9246]

I wrote him back and gave him our time for our other appointments and told him that I understand that it should be 12-14 months and I'm sorry for being a pest, but she's my baby and I'm worried is all. I may just go there and hear the same thing, but I'm just concerned as it seems to me that it's not closing anymore in the past few months. If they can squeeze us in I would appreciate it as we'll be there in town anyways. I'm just waiting to hear back from him. I really jsut don't want to be a pain in the ass, but I worry too much I guess. :) It'll save us the trip in December though when the weather is horrible and we won't want to travel. :)

[plukids]

I'd go to see him. Even if he does tell you not to worry just yet atleast you will feel like your bases are all covered. You are NOT a pest.....just a concerned parent. If you don't worry about Holly, who will. You are doing an awesome job Mom!!

[craniomommynbaby]

I would say to go ahead and see him for peace of mind. Simon goes back on the 18th of this month to see both surgeons. He last saw them 6 months ago, and I think his soft spots are still the same size. I am curious about their opinion on the matter. I really hope that the word surgery does not pop up in the conversation.

[snickers9246]

I was already told that, that's why I'm worried aobut it!! He said if they did have to repair, it would be to go in and put in a plate of some kind, very minor compared to what she's already been through, but something I don't even want to think about.

[Lauren]

No brainer...if you are there, see him. You wouldn't go to the store two times to buy two things you knew you needed, especially if the store was five hours away. It will take him less than 5 minutes to reassure you. I would absolutely have them fit you in. How many times have you told other parents to "trust their gut"? If you want him to check it, have it checked! I'm glad you emailed him and don't ever feel like a pain. Like Lisa said, if you don't worry about her, who will (I mean, besides all of us of course!)

[mom2mykidos3]

I would go too. Look at this way. Your peace of mind has no cost on it. Who cares if no one else agrees with you. You know what is best for Holly.

[snickers9246]

Thanks guys!! Just waiting for a relpy and an time for the appointment. I hope they do fit us in!! :)

[snickers9246]

Hey! I just got a reply back from the Nurse Co-ordinator..he's so nice, here's how the letter started!

"Good Morning Tracey,
Mom's are supposed to worry, otherwise people will talk. I will ask
Maria to book Holly in to see Dr. Phillips for 10:15 on October 13"

Well I feel better now. I asked him to bump it up to about 11am cause her eye appointments always take about an hour by the time they do the drops and we come back for the tests. It's nice they are so accomodating eh? Makes you glad they're taking care of your child for sure.

[KALEMSMOM]

Woohoo, glad to hear you got an appointment, at least you will have peace of mind.

[ExpatJen]

You should never feel like you are being a pest - the doctor's are there to give advice and no concern of yours is ever likely to be frivolous, is it? I bug Audrey's CS all the time about all sorts of issues and, so far at least, he patiently puts up with it (on a Saturday morning, and on his birthday no less, I had him contact a dermatologist about Audrey's unhealed scar - yes, I am sure he refers to me as "that pain in the #&@ Mrs. C." but I don't care - she's my baby!)

I am very interested to know what your doctor says about Holly's soft spot. Audrey's is about the same size, right on top of her head, and we were told that it will be checked 18 months after the surgery to see if it needs a plate, or bone paste. The impression I get is that they are reluctant to put a plate in because the view is that the dura is strong enough to withstand "normal" injuries. However, a sharp object could do serious damage. Our CS said he only ever put a plate in on a boy who wanted to play sports. As Audrey was older when she had the surgery we are not optimistic about the soft spot going away completely - it just depends on how big it is in the end. I have a feeling it will be something I am going to have to figure out for myself since the doctors seem to think the plates aren't necessary. I do not want to go through another surgery, even a small one, but the spot is, to me, scary.

Good luck with your visits - and have a safe trip!

[plukids]

Hooray Tracey! I am so happy for you! One trip is so much easier. Keep us posted and we'll pray for you guys in the mean time.