Wednesday, June 27, 2012

EEG Results and new med

Waverly had another EEG today at UVA.  It was ordered by her previous pediatric neurologist, who is now no longer at the practice.  We really liked him, especially since he helped resolve her Infantile Spasms, so I was nervous about getting a new neurologist since we liked the old one so much.  But, in this week we have already gotten two phone calls from him personally.  That's a good doc in my book!  (Apparently, when you call and say your baby has had 17 seizures in the past month where she's stopped breathing, you get really fast and personal attention!) 

The results from her EEG were pretty comparable to her last few.  She has really high amplitude with high spikes, and it's very disorganized.  That's to be expected and is normal for her.  They didn't capture any seizures, but she was only hooked up for a short time.  So, no change in her EEG reading. 

In the meantime, we are adding a new seizure medication to the list.  She'll be starting Topamax to see if we can resolve all these nasty seizures she's been having.  As of last night, she's had 18 breath-holding seizures.  That's 18 times that we have seen our baby blue, that we have begged God to give her one more breath, that we have had to run to her side and watch her eyes roll back and forth. 

Please pray that this new med will work, and that she will not have negative side effects.  One of the biggest side effects from it is difficulty in regulating body temperature, so please pray especially for that, especially since it's summer time and heating up.  We don't have central air conditioning, but we do have window units, so pray that she stays cool enough inside.  It will also mean that we have to limit her time outside, so if anybody wants to come and take the kids out in the evenings when we will have to keep her inside, please let me know! 

Sunday, June 24, 2012

Vacation pics!

We were so blessed to be able to enjoy a family vacation this year!  Last year hubby and the big kids got to go, but Waverly and I stayed home since she'd just gotten out of the NICU and I wasn't comfortable with traveling with her (I was just learning how to care for her at our home!).  But this year, with LOTS of preparation and planning, we were able to make the trip down to the beach.  It literally took me weeks of calling (DME, hospital down there, preparation to make sure we had all the machines, prescriptions, etc. we needed, etc.), so by the time it was time to leave, I was ready! 

Our oldest got to ride down with her grandparents and great aunt, so it was just hubby, middle child, Waverly, and myself.  That worked out great, and both of the kiddos did wonderfully.  Waverly slept most of the way, and even J took a good nap.  Isn't he adorable?

Johnny's parents have a trailer that they store down at the beach, so we stay in a campground.  Here is a picture of our campsite. 

It was five sites away from the pool, which K absolutely loved the most.  You can see the pool area (fence) to the left.  Beyond that on the horizon is the beach.  It was within walking distance. 

We enjoyed a lot of time relaxing, swimming, reading, playing, and eating!  We all enjoyed lots of snuggles from Waverly, and she enjoyed being a beach bum!

 This is her after swimming in the pool, all wrapped up in a towel. 
 Here she is in her new neck ring.  It's a WaterWayBaby ring, and was really neat.  It basically keeps her head up and afloat, and lets her body enjoy the water.  It was neat to see her "weightless" in the water.  I was able to see her move and stretch in ways I've never seen before.  She's always enjoyed her bath time, but had never been in a pool.  I hope to be able to take her swimming more often and maybe even have some hydrotherapy sessions. 
 K and I enjoyed lots of time at the pool together.  Every moment she could get, she was in the water.  She's never had swimming lessons, but you'd hardly know.  She's all over the pool, even doing flips!  What a big girl!  She really loved swimming with Waverly too!

In all, Waverly did really well on vacation.  She did have 6 seizures during the week, mostly while sleeping in the middle of the night or early morning.  We have an appointment for an EEG this coming week, so hopefully we will be able to see what's going on in there, and have a plan for what to do about all these seizures coming back.  We are so thankful for the Lord's grace and blessing to us in such a wonderful time.  More pics to come!

Tuesday, June 12, 2012

Three's NOT the Charm

Last night Waverly had a terrible night of seizures.  Three to be exact.  That's three times she stopped breathing, three times of seeing my baby blue, three bouts of shaking and the ensuing twitching that occurs afterwards until she is able to drift off to sleep.  Last night, three was NOT the charm for us.  It was scary.  I stayed up most of the night watching her.  So today I went ahead and set up her ambu bag, hooked up to oxygen, to lay right beside her head as she sleeps.  So that if it happens again, we are all set to force oxygen into her lungs.  Because even though she's got oxygen going in through her nasal cannula, and we turn it way up when she's seizing and not breathing, if she's not moving any air it's not getting into her body.  So we will have to bag her.  

I'm not sure what last night was about.  She's been on her new antibiotic for this UTI since Saturday.  And she's fine during the day.  Please pray that tonight is a better night for her, that we won't have to "bag her" or take her to the hospital, that these seizures would TAKE A HIKE! 

Saturday, June 9, 2012

Another UTI

On Wednesday I decided to take a urine sample from Waverly into the doctor to get tested, even though she'd had a urinalysis just last week.  Since she was cathed twice last week on Wednesday, I figured it was good to check again, especially since she was still having so many seizures.  They had checked her urine last Thursday but since she was still seizing, I went ahead and took another sample in.

I talked to the doctor yesterday, and her urine did grow bacteria again.  I'm a little confused because she has been on a prophylactic antibiotic since her last UTI, so she should have been protected, but apparently it didn't work, so now she's got another one.  That's about all the info I have.  I should hear from them today a little more info, like what it grew and if the antibiotic she's on will treat it.  In the meantime, we have upped her prophylactic antibiotic to a full dose.  I'm not sure if we'll be seeing a urologist now since she's obviously still having troubles or what. 

Thursday, June 7, 2012

99.8% Rolling Over!

Would you just look at what our girl can do?!?  She worked so hard last week, and got allllmost all the way rolled over.  She got that little bit of her shoulder stuck under her, but for all intents and purposes, she made it!  We are SO proud of her!  Keep working baby girl and you'll get better and better!

Tuesday, June 5, 2012

More Seizures

Waverly continues to have about one big, bad seizure each day for now.  We still don't know why or what's causing them.  We received an ambu bag from our medical equipment company, which can hook up to oxygen and has a mask to seal over her mouth and nose and, when squeezed, will force air into her lungs.  It's basically like giving mouth-to-mouth, but with straight oxygen.  Talk about an ominous thing to be sitting on your bookshelf in the main living area.  Sheesh. 

Please pray for these seizures to stop.  I was worried that maybe it was from too much stimulation, but even on days when she's been just at home and quiet, she's still having them.  We are supposed to be leaving for vacation pretty soon (yes, I said that out loud, but don't worry, we have ninjas staying in our home while we're away...), and I am nervous about her having them while away from home. 

Saturday, June 2, 2012

Random Update

Waverly has had 4 seizures in 8 days.  That's too many times of seeing your baby blue and not being able to do anything about it.  I'm feeling a little weary from things lately.  I think all the long, extra appointments, coupled with the seizures, are weighing heavy on me the past few days.  That added to the rest of normal, everyday life is sometimes just a lot to handle. 

I get tired of being so functional, of powering through all that is needed and necessary, and just want to sit down and, well, I'm not sure.  I don't know what normal is anymore, and I don't desire normal since I'm not even sure how to define it and since I know the richness that life can be.  But the richness of life means that it's hard.  The sweet is oh so sweet; the bitter is oh so bitter.  And to be honest, experiencing both the highest of highs and the lowest of lows, while rich and fulfilling, is draining.  Does that make any sense? 

Please don't worry.  I am ok, just expressing how things can be some times.  It's just been catching up with me these past few days.

In other news, Waverly had an appointment with the GI doctor on Thursday.  We are trying to figure out what new formula to switch her to that our DME (durable medical equipment) company carries and that's best for her.  He also ordered her to have a mineral oil enema and a stimulant suppository if she doesn't have a bowel movement in 24 hours.  So we gave her both on Thursday, and after tons of poop, her tummy was SO much less distended and her o2 sats were much better.  Wow!  Of course, she didn't go yesterday, so I don't know if this is going to become a regular thing or not.  I hope not though! 

We also did a urinalysis that day, which was clear.  Not much else to report on her test from Wednesday either.