Alex's Surgery

As scary as any surgery is especially on your child, brain surgery just has that extra level of concern.  On the flipside, we are so grateful for the sacrifice people have made to become skilled surgeons and nurses so that things like a Chiari Malformation can be corrected.  This disorder is most often present at birth although it may or may not cause symptoms.  At its basic level, it is where some of the brain stem slips down into the spine column where it is not suppose to go.  Surgery puts things back where they should be to prevent permanent damage to the brain and to functioning.

And if your child does have to have surgery, so happy to live close enough to Primary Children's Hospital--a regional hospital with world renown care for children.  Alex had the same doctor for her surgery that Carter had last year so that was another blessing.

These photos were taken by Jessica and shared with her permission:

Before surgery:  Alex's main symptoms had been headaches from time to time, but also very frequent scratching of the base of her neck.  That had been going on for almost a year, but in the past few months, Alex started saying that it felt like "bee stings" on the back of her neck.  Because of their experience with Carter and learning about Chiari Malformation, they recognized it as a possible symptom and spoke to their doctor who agreed to order the MRI.  So grateful for all of those things falling into place...

even though knowing that surgery would not be easy....and waiting a month for the surgery was no fun either.

Surgery went well according to the doctor but he said that it was one of the most "tightest Chiari that he has seen in quite awhile."  It required some cauterizing of the brain stem but that should have no impact on her as it is "extra" tissue with no use.

The first 48 hours she felt pretty sick with headaches and nausea.

Finally she ate a bit of muffin on Thursday and was able to keep it down.

And she got a wagon ride outside for a little visit on the grounds of the hospital. Thursday evening I got to visit for a couple of hours and got to hold her as we watched "Bow-toons Shorts" with Minne MOuse.

Smiles on Friday as she is starting to feel better...

and home Friday evening.

We were there in Syracuse when she got home and her brothers and sister were so excited to see her (Ezri was already asleep.)  Alex and Carter had a sweet moment between them as Carter shared the card she had made for Alex and they hugged and said they loved each other.  Twins are a fun thing to watch growing up.

Here is the card Liam made.  Unfortunately, I didn't get a picture of the one Carter made.

So grateful for the good care she received and for her recovery!

For those of you are the more medically inclined or may have a child with the similar dx--here is a picture of the actual surgery site--stitches!  I think it is so amazing that they are able to preserve so much of her hair and that they don't have to wrap up her whole head during recovery.  Those things make the whole experience a little less traumatic for kids (and the people who love them.)

Don't look if you don't like this type of stuff!!