Face of hope

Face of hope
Courtesy: TIffany Kay Photography

Friday, July 5, 2013

Independence Day 2013

We had a fairly busy weekend last week and had just started "recovering" from it when I noticed Meagan had a bump on her head.  It wasn't huge, but it was new.  Figuring it was just part of her dissolvable sutures I sent a picture to her NSG and let it go.  As Sunday went on, though, I noticed an even larger lump appear on the other side of her forehead.  This one was large, tense and puffy.  It appeared to be fliud, but almost felt too tense to truly just be fluid.  I sent another picture to Dr. R and he said to watch it, take daily pictures, and come in Wednesday for a quick check up just to be sure.  He said if her behavior changed at all to take her to the ER.

When I first noticed her forehead bumping out

Still bumping out but in a good mood still

Notsomuch anymore. Mad mad Meagan! 

Sure enough, Monday night, about 3 hours after I talked to Dr. R Meagan started screaming. Screaming and crying incessantly. She also stopped taking any bottle which typically she at least does to fall asleep.  She also started to have a few small seizures, something we haven't seen in over a month.  I waited for over an hour and finally after a few hours of non stop crying, we decided because of her new puffy head we should take her in.

This face pretty much describes Meagan's Monday and Monday night

It's always that debate back and forth - to take her or not. It's so hard to tell with these kids sometimes.  I got to the ER around 9pm Monday night.  Of course we didn't have to wait. A screaming kid who is shunted with a puffy head gets you a fast pass to a room.  They did a CT scan and shunt series to check things out.  All in all the shunt looked ok, and her CT scan looked fine as far as her ventricles. But she did show some tissue puffing out beyond the skull line. (ew).  The ER doctors wanted to keep Meagan for observation because of this, and also because she had two seizures while in the ER - but, I decided against that.  There was obviously no clear answer, so I figured if nothing showed absolutely emergent, we would stick with seeing Dr. R on Wednesday and just go home.  I also told them she had a follow up EEG already scheduled for Wednesday as well - so there was no need to keep her for that.  They reluctantly let us go home, and I was glad.

Wednesday came and Meagan's head was even larger.  We got to Dr. R's office around lunch time.  He looked at her head, at her scan, and sat back a bit.  He said he thinks that for now we wait and see.  His guess as to what is going on is that Meagan actually has had new brain tissue growth. Which is a good thing. But because the front of her head is still lacking much skull bone, it has pressed out that way in an odd manner. He said she still has a dissolvable protein band that is right in that same area so it's probably pushing some of the tissue outward since it can go that way. Dr R said hopefully over the next few months, that band continues to dissolve, and her tissue can settle back in and the skull bones will continue to grow and close properly around her brain.  If by chance they don't, she would need a second craniotomy to put in a plate and help close things up so the brain is protected.

Yay for brain, but, weird!!

After that appointment, we went over to Meagan's Neurologist.  She got hooked up for her EEG.  She really did well. Once they stopped messing with her to put on the wires, she calmed and actually took a little nap. She was a rock star considering the day she'd had and how awful she'd been feeling! We should get the results in about 4-5 days. And frankly, there shouldn't be any surprises. We already know she has seizures, and we already know that (mostly) her meds are doing a good job controlling them.

Rock star girl through it all!

I was really glad how things turned out because we had family coming in town for the 4th.  Brian's aunt and uncle had some work in the area and so they decided to stay with us for the week. They also ended up bringing Brian's youngest brother with them who is near them for school so it was nice to get to spend time with him too.  It worked out to be really helpful for me because they stayed with the older girls while Meagan had her appointments all day Wednesday.

The 4th turned out to be a great day.  We got to cook together, hang out, dance, sing, and just have a really good time.  Brian and his uncle cooked ribs and Brian got to use his fathers day gift (dutch oven) for the first time to make his famous southern green beans.  There was also twice baked potato and apple pie.  It was rainy out but that didn't matter.  There was country music blasting in the kitchen, the girls outside splashing around in puddles with umbrellas, and Brian enjoying what he loves doing best - cooking - alongside his uncle and brother while his aunt and I played with the girls and helped prep.

Reilly and Kaitlin helping with the twice baked potatoes

Brian's southern green beans - YUM! 

Brian and Uncle R prepping the beans and ribs 

Anna enjoying a dance with Aunt JA 

A little rain doesn't stop Maura and Kaitlin from going outside! 

Brian and his youngest brother, T, prepping potatoes 

The girls designed their own "show" for the 4th of July.  Since it was rainy and we wouldn't be going to any fireworks, they decided to put on their own show for us.  They hand made fireworks pictures they hung up on the wall.  They put together a little choreography to a song (of all things Justin Bieber - gag) but it ended being really super cute. I was impressed how they worked together and came up with their own dance.  They also did a few patriotic songs and our National Anthem (with some impromptu key changes..haha .. but hey, at least my 8 year old knows the words.  A lot of adults can't even say that!)  The girls also made some paper flags for props and got the 4th of July spirit going.   Gotta love the creativity of kids!

Good job on the words Reilly (warning: random key changes) :)

The girls special choreography they designed (sorry about the song) :)

So all in all our 4th of July week turned out wonderfully! We had a little rough start to the week with Meagan, but I was really glad it ended up being mostly good news.  I mean, leave it to my kid to grow brain out of the front of her head. Sigh. Meagan just always has to do things her own way... show off :)  But, the positive is definitely the fact that we have new growth at all...now we just need it to settle back where it needs to be. So until then of course I'm going to be a little bit of a crazy woman protecting the front of that head.   I guess just another way Meagan is certainly independent in her own way (as is Maura who if you notice in the picture, obviously dressed herself for Independence Day... oh well, at least she took the theme to the fullest extent).  We hope everyone had a Happy 4th of July! We certainly enjoyed ours and are ever thankful for God's blessings to our family and this great country.

Meagan sporting her 4th of July outfit from Uncle R and Aunt JA

My 4th of July gaggle 

Finally got smiles out of my girl last night!