Another update on Olivia

I just call a call from Children's in St Louis. The soonest an ENT there can get her in is next Tues, May 6th. They said they are fine with her waiting that long to be seen and we should just keep an eye on her and take her to the ER if she starts having breathing problems (nice!) Her appt will be a consultation, NOT surgery. They will schedule surgery after her appt that day. Also, after her appt she has to see the cardio again for repeat Holter monitoring.

Field Trip

Friday was the twins field trip to Springfield and, thanks to Kevin, I was fortunate enough to go with them. It was a BLAST & we had such a great time. It was so nice spending one on one time with Kyra and Emma.

We started our day off at the Dickerson Park Zoo & had a sack lunch when we were done. Then, we were off to the Discovery Center and from there we went to Incredible Pizza for dinner & games.

A few pics of our day :)

The bus ride....

BEST FRIENDS :)





At the zoo









Discovery Center



We need one of these at our house!!!









Their favorite thing @ Incredible Pizza

another bump

Poor Miss Kyra. She took another knock to the head last night :( I should've known better than to get Miss Accident-Prone a pair of flip flops, but there ya go. We got home last night and she got tripped up, fell and hit the corner of our old entertainment center (now being used to house toys)

We called the on-call neurologist at Children's in St Louis and she said as long as she was acting like herself and pupils were dilating, she didn't recc a trip to the ER as they might want to do a CT and the risk of radiation are higher than what we might learn, esp since she's scheduled for a 2nd MRI this coming Saturday.

A pic of our little bruiser....

this crazy roller coaster

This crazy roller coaster ride we're on just keeps presenting us with new twists and turns.

When Kev took Livy to the ENT, he forgot to mention her heart problems. SO, when the ENTs office called me to set up surgery, I made sure they were aware of what was going on. They called me back and said before DrH would perform the surgery, we'd need to have Livy's cardio fax a release for surgery to them.

I called the cardio and was told someone would call me back. Several hours went by with no call, so I phoned them. I was told by her nurse that the cardio was reluctant to sign such a release, but wouldn't tell me why. She told me she'd continue to 'work on it' but couldn't promise me a release would be sent.

I called a couple of times yesterday (from my field trip with Ky & Em) and was FINALLY given some information. Apparently, they pulled her chart to give to the cardio for her to review, so she could send the release. In reviewing it, and then asking another specialist to look it over, they came to the conclusion that she's not to have surgery.

For those that don't know/remember Olivia has an intermittent heart block at night. What this means is when she falls into a deep sleep her heart stops working (kind of like sleep apnea) and only when she wakes up (which she does SEVERAL times a night) does her heart return to normal. Obviously, under general anesthesia, she won't have the luxury of waking up when she falls into the heart block.

We were told that specialist, as well as an ENT at Children's in St Louis is reviewing all of her current info (everything from ped, cardio, ENT, etc.) and if they agree the cyst needs to come out, they will only give the OK for a surgeon at Children's to perform the surgery as they're better equipped for what will (not might) happen.

I'm stressed. To. the. max. This was a HUGE concern of mine all along...what happens when she doesn't wake up? Her cardio acted like no big deal, see ya next year, go on with life as normal. Obviously, that's not the case. I just thank God that she hadn't had an emergency before all this came up and I am SO glad I knew that I needed to give them this information.

Please pray for Livy. We don't know what's going to happen. The specialist finally received all of her info right before closing yesterday, so we won't talk to them again until Monday.

now for a Livy update - surgery

Olivia is having surgery to remove the cyst in her throat on Monday, Apr 28. The ENT is not convinced that it *is* a thyroglossal duct cyst. He says it appears to be a bit low to be that. Whatever/wherever the cyst is, it needs to be removed & biopsied.

a little sunshine

So, I had to share a little sunshine in the midst of the rain :)

It's nothing big, but something that made me happy and appreciative nonetheless.

When the kids & I got home last night, Kevin told me that he was going to take off work Fri and stay home with the boys, so that I could go with Kyra & Emma on their field trip!!! He knew how badly I wanted to go and I'd already told the girls I was going before their teacher asked siblings not to attend. I didn't have anyone to watch the boys, so I wasn't going to be able to go. I love him so much. I know it seems like such a small thing, but it's a really big thing to me.

I love you, honey!

2nd MRI

is scheduled for May 3rd.

results are in...

Good news is that there are no tumors or growths. Bad news is that we all have cerebral fluid surrounding our brain. Well, a portion of Kyra's has been blocked off (most likely caused by the damage done by her fall/concussion in Zuni - which is also when the headaches started - they've just gotten worse and more frequent) The blockage is stopping the fluid from flowing freely and is causing pressure which is causing the migraines.

She is having another MRI that will just check the fluid flow to confirm the diagnosis and we'll go from there, but we're looking at surgery.

I'm drained. To the point I almost feel emotionless. Your thoughts and prayers have meant alot.

still waiting

Just wanted to update you all, as some of you have checked in and are waiting with us (thank you, btw)

Unfortunately, we don't have the results yet. I just called back to leave my cell ph # as a call back since I'm getting ready to take the girls to soccer (it's 20min til 2) and I was told that as of 11:50 the MRI hasn't even been read by the radiologist!!

While I'm frustrated, it does make me feel better about earlier since the dr obviously wasn't going to call with bad news because there was no news to give.

Just waiting......

Deep breaths

I called the ped neuro's office this morning to get Ky's MRI results. I was told by the nurse that our dr would have to call me back. I keep telling myself that it's normal, standard procedure. Hoping to hear soon....

Rain

You know the saying 'when it rains, it pours?' Well, we're feeling quite flooded.

It's been a crazy couple of mths around here! We've been busy with school stuff, volleyball, soccer & a bunch of health issues.

In January, Olivia passed out at school and had some heart testing done ordered by her ped cardio. We're keeping an eye on her and having a re-eval next year.

Kyra has been having migraines for awhile, but they've increased in intensity and frequency so she saw a ped neuro at Children's in St Louis. She's currently on migraine meds (Propranolol and Imitrex) and has an MRI scheduled for April 19th. (Had her MRI - get the results on the 21st. Meds not working, dosage was doubled)

Olivia lost her first tooth. Brent got stitches.

Yeah. We're ready for a break.

HOWEVER, we saw several little in-patient children while we were at Children's Hospital that reminded me even with what we have going on we are SO incredibly lucky.