Thursday, March 10, 2011

Check Up

Today Scarlett had a neurosurgery check-up.  They checked that her shunt was still set properly (it was), that the incisions from that surgery, both on her head and belly, were healing properly (they are), and that the shunt is doing its job of draining fluid from her brain (it is!).  The main way of checking this is by measuring the circumference of her head.  She has consistently been between 41-41.5cm since her surgery.  This is large for her age and relative to the rest of her, but it is not increasing, so we're in good shape.  We discussed the multiple soft spots on her head; there are a few places where there is no bone underneath.  This is very strange when you feel it, but all babies have soft spots, so it's just another "special" aspect to her.  They expect bone to eventually grow in these places.  If it doesn't, they can do some bone grafts to help it...we'll just wait and see.  They tried to squeeze her in for an impromptu MRI, just for good measure, but there was no opening in radiology, so we will just wait another month.

We got another interesting bit of information today as well: they are monitoring her growth for a head-shaping helmet.  We did a 3D scan to set a baseline by which to monitor.  In the meantime, we are supposed to position her head in a specific way while sleeping (I'm still working out exactly how to do this safely) to help round out her head.  In the long run, I don't feel like it matters what shape her head is, but she may feel differently when she is older.  I can imagine it now..."Mooooommm, how could you POSSIBLY expect me to go to school with a lumpy head?  I can't believe you would do this to ME!  Couldn't you have done SOMETHING?!"  I'm sure it won't be this specific, but you get the picture.  My mom keep teasing that her feisty attitude that has gotten her through so much is not going to just disappear...so if it comes to a helmet, we'll do that too.  Add it to the list!

We're learning more and more the difficulties of spreading her care between two separate hospitals.  We still feel that it was the best choice, since she is getting excellent care in each department, and they are sharing her records freely between each other so that everyone knows what is going on.  It gets complicated when an issue pops up at one hospital that can only be answered by the other.  For instance, when she had the shunt surgery in Oakland, the PICU nurses had to call Stanford to find out what size needle is used in her port (I wrote it down so that we have it next time).  Even harder is that no other doctor has any idea what is going on with her skull bones.  She is all Humpty-Dumpty (a very cute one!) under the skin and is a mystery to anyone who is not her neurosurgeon.  When we were in the hospital last weekend, I noticed a little swelling, and the oncology resident who looked at her quickly admitted that she had no idea if it was normal or not for a baby with such an extensive surgical history.  The further out from surgery we get, the less time we will spend in Oakland, which simplifies the whole process.  We all have our fingers crossed that she keeps making such great progress that we don't need any surgery for a nice, long time.

16 comments:

jennifer said...

There was a blog I read a while back where a mom was debating about getting a helmet for her little guy.. thought I'd share it with you to get another perspective: http://mommybeta.squarespace.com/blogs/2010/11/23/to-helmet-or-not-to-helmet.html

Thinking of you, Chris and Scarlett always!!! <3

Amanda said...

Still praying! My son needed a helmet and I was pleasantly surprised how easy and effective it was. Since he was so little he really didn't notice it--and it was just extra protection during the crawling months. :)

Kate said...

I just wanted to let you know that I am still thinking of Scarlett and praying for healing. I'm glad to hear that the shots are getting a bit easier to bear and that Scarlett's neurosurgery check-up went well.

Amy said...

I just wanted to say thanks for updating us on everythning. I still check the blog almost every single day and I'm sure there are tons of us who do that. It is so inspiring to read about your family's fortitude and spirit, and I often come here when I need a little pick-me-up. Big hugs to you all!

katy said...

I love reading these great updates. I have gotten a co-worker on the prayer team, and she asks me all the time, "How is Scarlett doing?" I'm glad that I can report positive progress. And, as for the helmet -- why not? She won't remember it, and she'll have a pretty, round head when she's grown up!

B said...

Way to go guys! All wonderful news!! She is such a beautiful little sweet pea. Love the future "Mooooom..." rant! Your humor and just going about your life is the best therapy (aside from the brilliant doctors, techs and nurses of course)!
Lots of prayers and hugs and good thoughts your way from sunny (though a little cooler today) San Diego!

Lina Irizarry said...

Hello, I was reading yesterday the post about weight gain and my mind couldn't stop thinking about that. I'm a Dietitian from Puerto Rico, not working here @ San Antonio but nutrition is the same no matter what territory. I'll suggest schedule a meeting with the pediatric Dietitian from the Hospital were She's getting the chemo. I was thinking that maybe If you can introduce juice : white grape & apple (Gerber) and pea size stage 1 baby food ( only fruits) she can get use to the taste of sweets and then you can still introduce others. NG tubes are a good choice bc She needs to be stable for the treatment but why not giving the chance to have other choices (food). That's only me and my thoughts. Im glad to hear that she is doing better everyday. Don't worry about head size or shape I have one "big head" boy @ Home and now @ 4.5yrs it looks pretty normal, LOL.

Anonymous said...

Glad to hear things are going so well. Still in my prayers!!

Anonymous said...

You are all in our prayers. We had a head shape issue with my daughter and the neuro told us to roll up a receiving blanket and tuck it into her swaddle so it would shift her weight. So, she needed to sleep on the left side of her head, so we tucked the blanket in all along the right side of her body (just ran along her back right side) to force her to sleep with weight on that side. It worked well when she was swaddled, but when she started rolling we just unswaddled her arms and swaddled at her chest, so we could keep the blanket tucked nice and safe. Good luck!

Anonymous said...

Glad everything went well! love hearing good news!

Anonymous said...

lots of good advice about repositioning for the head. but if it doesn't work for you (didn't for us) -- a helmet is not bad at all! we have had one with my YDS -- and it has worked wonders.. and look at it this way -- it will protect all those sweet soft spots!! hang in there -- so nice to hear a good report!

Anonymous said...

She is so cute. Dont worry about the tube i only noticed it in a few pics and only after i read about it. She is so cute people will see right past the tube and notice those eyes any way. We will be praying for you and your family.

crystal said...

I just recently found your blog and have read all your posts. Scarlett is a beautiful little girl. And I am praying for you and your family. I am glad to hear good news today.

Anonymous said...

I'm keeping up with this religiously, just haven't had time to comment in forever due to it being tax season.

However, I want to comment on the statement your mom made: "My mom keep teasing that her feisty attitude that has gotten her through so much is not going to just disappear."

I believe there is more truth than we may ever realize to that. Deanna was and always has been, a VERY strong-willed child!!! I have always attributed that to her determination to fight for her life.

I place Scarlett in that league months ago! SHE'S A FIGHTER!!! - Patti H

Rose said...

I'm glad to see that everything is coming along nicely. Its so nice to see a positive turn around on this.

Amie said...

My son is in a helmet right now and it's pretty painless. And he look super cute in it. There is a great BBC group for plagiocephaly but they are all babies in helmets so I'm sure you will find some good info. My son has been in his for 3 weeks and the results are amazing. I hope Scarlett continues to get better.
Amie