Mayo Clinic Appointment

Today’s appointment at Mayo went well. Really well.

The neurosurgeon confirmed what we thought and she does have Scaphocephaly. This may not seem like good news but it is to us. Now that it has been confirmed by two doctors, the neurosurgeon and the plastic surgeon (both scrub in for the surgery) we know what we are dealing with. It’s the “what ifs” that have been the scariest part of all of this. The neurosurgeon also reassured us that we do not have to worry about any retardation or developmental delays. Because there is no history of this in either of our families and only the one suture – the sagital suture- is fused we have nothing to worry about. The neurosurgeon also told us that we do not have to worry about brain swelling – at the appointment with our physician she told me to watch for swelling in her brain by keeping an eye on her one soft spot (which I still think is incredibly horrible for a doctor to do. I don’t think that I have ever been so scared, stressed or worried than I have been in the past week while watching for brain swelling in my baby girl.)

The biggest update we have for you though is that after meeting with the doctors we have decoded to go with the other surgery that Tim mentioned earlier, the more invasive open surgery. This will mean that they have  to make a large zig zag cut across her head from ear to ear. This surgery will require a day more in the hospital for recovery but when she is discharged from the hospital her head will look normal, sans the scar. They reassured us that the surgery is far worse for the parents than the child and that she will be back to her normal self in a week to 9 days. Because her skull is still so plyable and soft they will not do the surgery until she is 4 months old. That puts us at a January surgery date. This surgery will be tough but it also means that she will not have to wear a helmet for a year.

We were very impressed with the doctors. The hospital was incredible. All of the staff was so nice and incredibly effiecient. We registered, met with 2 different specialists, Elise had pictures taken of her  head and we scheduled an appointment for a CT Scan for next Tuesday all in an hour and a half.

Tim and I both left the hospital today feeling lighter. I still may break down in tears when I talk about all of this but those tears are manageable now because we know what is going on. We have a plan. We have great doctors taking care of our little girl. It is still scary but we now know that everything will be okay. And that is good. Very good.

5 thoughts on “Mayo Clinic Appointment

  1. Jess

    I’m so glad that the appointment well and that you guys have a plan that can have you worrying a little less in the days ahead! We’re still praying for all of you and sending hugs! Thanks for keeping us all updated! I’m so glad that you guys happen to live relatively “close” to Mayo Clinic while all this is going on.

  2. Uncle Mike

    So happy to hear that things went well. We will continue to send good thoughts your way.
    One of these days we will do a RV trip through you area so we can meet the clan.

  3. Nebraska Lawtons

    Tim and Meg,
    Claudia and I have been praying for you and Elise since Ruthie told us about this last week. We will continue to hold you in prayer. We are thankful for the diagnosis and fully support your choices. Let us know if we can be of help.
    David and Claudia

  4. Rebecca

    Oh wow, Meg, I just caught up reading your blog. I’m sorry you have to deal with this and will pray everything goes smoothly in the future.

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