One tough cookie

We were about 5 minutes from getting into my car to drive to Raleigh to pick up Grandma and then head to Lake Gaston for the weekend.
Then it happened. I was on facebook when I saw it happen. I knew she was going down with a seizure. I half screamed, half let out a gasp. I knew she was going down HARD. I closed and set down my laptop and raced to her. She was SCREAMING. Since I saw her grab her face near her eye, I did a quick check of that area before I let her bury her head into my chest as I did my best to comfort her. “Shh Becca, its okay.” “You’re okay baby, Momma loves you.” “I know that was scary.” All the usual things I say to her. I probably even sang her our song. It took her longer than usual, but in a few minutes she was calming down. Then I cued into something. I could hear the sniffling in her cry. Odd, I thought, she doesn’t usually cry real tears, and never gets the runny nose from crying hard. I pulled her back away from me so I could check her.
Then I saw it, blood. And a lot of blood. I panicked, I admit. My dress was covered, she was covered. I scooped her up and went for a tissue.
I discovered the source of the bleeding. A badly busted upper lip. I put pressure on the lip as best I could with a tissue. Not an easy task with a kid that barely even ever lets you wipe her messy face. She HATES having her head touched in any way, shape or form. I grabbed the phone and called her pediatrician office.
God Bless them. They are so great. I knew the nurse advice line could mean an hour or so before someone calls back, so I took the next logical steps. I pressed the button for appointments and explained to the receptionist what happened and able to be put through to a nurse right away.
I giggle remembering because I explained the situation that she had a seizure and fell. Their first concern of course was the seizure. Was it over. My thought “heck lady seizures are multiple times a day, every day, that is the least of my worries.”
She gave me advice to hold pressure for 20 minutes. I explained it had mostly stopped bleeding by then, it was kind of oozy (you’d get blood when you pressed the paper towel to it. By then I had gone and gotten some paper towels I ran through cold water before bringing to Becca.) As long as it was stopping bleeding, and since it appeared to be fairly surface there was no need for stitches. With a kid like Becca they can’t be done at your local urgent care. Nope, it would require a trip to the ER. PHEW we seemed to have escaped.
I called Grandma and let her know we’d be there a bit later, I needed to keep an eye on Becca for a bit. I told her what happened. I had already long since sent hubby a message (did that while on the phone with the Ped).
Within minutes my resilient kiddo was up and “running” around the house again. She was still wobbly, from the seizure and the trauma. I decided I wasn’t risking a second fall on her fresh wound so I scooped her up and loaded her up in the van.
We got to use her new EZ-On pro vest . This replaces her car seat. It is actually better for her, it means she can have a bit more freedom in the seat (including recline of her back seat.). But she still gets the positioning support to keep her upright and not leaning out of the seat.

my new seat

my new seat

I will say I have since figured out I wasn’t quite using the car’s seatbelt right, but these were taken the day I got her new harness.

Here is Becca’s lip over the weekend.
poor widdle lip

Becca LOVES her boat rides. So much so this was her opinion after the ride was over and it was time to go back to the house.
Notice the GLARE in her eyes. She was one mad little girl.

She had a great weekend though. Swimming and boat rides, and of course being spoiled by PopPop and Grandma.

I took her to the Pediatrician Monday morning just to check her lip. I was worried about infection since it had some funky color to the wound. Thankfully he said mouth injuries “turn all kinds of funky colors as they heal” (yep his words), but it was better safe than sorry and to do antibiotics instead. God Bless a pediatrician who is cautious with Becca.

Her lip looks so much better with each passing day.

She is one tough cookie. Even right after her injury she was grabbing her sippy cup and drinking like nothing happened. That was my clue that we probably didn’t need the ER trip after all!

All this being said with how awesome she is, and how quickly she is healing I went ahead and have gotten her in to the Orthotics company to order a new helmet. I know her helmet from last year was a bit snug anyhow, so it was time for a new one. I decided to move on to the hard shelled helmet with a face bar. Her little mouth is too precious, and must be protected. She has far to many seizure events lately where she just gets very off balance and stumbles around. We aren’t simply fighting drop seizures anymore.

Please continue to pray for Becca as this demon called LGS continues to change and keeps us on our toes.


Godzilla girl is loose in the house

Becca has this growling noise she makes, very deep in the throat. We call her “Godzilla girl”. She had made this noise for years when she is happy or excited. It is her way of expressing herself. Lately she has taken to doing it for hours on end, the better part of the day, every day. Gets kind of old – quick!
I am pretty sure it has to do with her not tolerating one of her seizure medications. It has been worse since we went up on the dose.
Like any good parent I was calling her doctor about this. Trying to get them to adjust the dose or give her something to help relax her. We had to do a med, Clonidine, when she first started the Onfi to help with her behaviors. We did a TINY dose at night for about a month and didn’t need to continue.
So naturally I wanted to revisit this medication. I had zero luck contacting her Neurologist and was eventually advised to take her to the ER. I’m not kidding, they actually told me to take her to the ER.
So I did – we were already at Duke at the Children’s Health center when this bit of advice was given, so I just pushed her on over to the ER. There she was quickly treated and they agreed to reduce her Onfi and give a RX for clonidine. (See this Duke Neuro – was it REALLY that hard to do this over the phone with me, or get the PA to spend five minutes with us to give us this??)
Overall her growling was a bit better for a few days. She is going strong as I type this, but I’m doing my best to block her out. (she is also happily playing too)

Other than our mis-adventures dealing with Duke we have had a great summer so far!
Last weekend we went up to Lake Gaston and spent the weekend with my dad, Jacky and another family relative, Cathie (she is my dad’s cousin, and a very close family member).
We had a GREAT long three day weekend. We all go there Thursday night and had fun fun fun! Thursday when it was Jacky, Becca and I we went out for a swim. Becca loved her new float I rigged up
I took a regular big kid/adult float ring and had sewn straps around each side to attach in a pair of swim shorts. This gave her a seat in the ring – much like the baby ring floats have. We added in her life jacket to give her a bit more torso support.



Pretty much the height of relaxation for her! We also had multiple boat rides (a favorite of Becca). She got to ride on my dad’s new golf cart
and we had more birthday celebration (Becca just turned 8!!!)
All in all it was a great mini vacation. Just what we needed!
I guess even Godzilla needs a vacation now and then.

Oh – the Monday after we got back she had her 2nd IVIG infusion. It was a LONG day up in the day hospital at Duke, but she was great the whole day. I’m so excited about this treatment. IVIG is being used to help treat her seizures. It is greatly reducing her daily number of seizures.