Songs My Kids Mess Up

Pie hole! Pie hole! It's off to work we go!

We listen to a lot of music in our house. Usually my kids have no idea what the lyrics really are and it can be HILARIOUS to listen to what they are actually singing. Here are a few examples...

"Lately I've been laughing Christmas eve....lately I've been laughing really hard...."  Counting Stars By Brenna
(Real lyrics are "Lately I've been, I've been losing sleep....But, baby I've been, I've been praying hard..."

"Pie hole! Pie hole!" Hi Ho (from Snow White) by Gracie
(Real lyrics are, of course, "Hi ho! Hi ho!")

"I don't care what you're going to do!" Let it Go by Gracie
(Should be "I don't care what they're going to say")

"I got one last prom production. I got one last prom production." Problem by Riley
(Real lyrics "I got one less problem without ya. I got one less problem without ya.")

What song lyrics have your kids (or YOU) misheard?

She's No Geordi

Lt. Commander Geordi La Forge

Grace is now at the age where her disabilities are becoming more noticeable. When we are out in public, normally someone will comment on her hair or how cute she is. Then they pause.

They don't want to stare, but they can tell something is different about her. So far, only two people have come out and made comments about her 'special needs'. Both were very kind, but it still broke my heart.

People can tell my baby is different.

A few days ago at the grocery store, we were picking up some ground beef. The lady working the counter talked to Grace....and then she did 'the pause'. Because of her visual impairment, Grace couldn't tell where the woman's voice was coming from. So while Grace was turning her head, 'scanning' to find the woman, I quickly said, "Oh, she's visually impaired and is trying to figure out where your voice was coming from."

The woman responded, "Oh! My brother is mentally handicapped!"

*Sigh*

 I understand that when people are faced with something different and maybe a little uncomfortable, the knee-jerk reaction is to compare it to something in their own lives. But as this woman rambled on about her brother and the hole in his heart and yada, yada, yada, I just wanted to yell  at her. IT'S NOT THE SAME THING.

It's okay to notice that things are different with my daughter. It's okay to make kind comments about her. It's even VERY okay to ask questions! But please don't lump all disabled people into the same group. Each person is very, very different.

As we were leaving, the woman laughed. "You know, in her lifetime they may be able to do something to help her! Maybe she will end up like that guy on Star Trek with that visor that helps him see!"

"Maybe!" I laughed and turned to walk away.

"Psh, what does she know?" I thought to myself. "Grace is no weird Star Trek character. She's not Geordi La Forge!" 

"She's a kick-ass Captain Kathryn Janeway, damn it!"

Now excuse me, my dork is showing. Let me go tuck that back in. :)

Our Favorite iPad Apps : Grace Edition

Playtime for Grace is very different than it was for Brenna at the same age. I don't know if it's because of her visual impairment or just her personality but Grace has no use for dolls, throws the Little People, and doesn't like stuffed animals. She prefers toys with buttons, lights and especially ones that play music. She loves to play on the iPad and will smoosh her nose right up to the screen so she can see the animations. Here are a few of her favorite apps!

Grace playing on the iPad.

• Sparkabilities -  ($4.99) This app has either flash cards or movies that introduce shapes, colors, counting and just silly noises. It's easily Grace's favorite. She'll be getting other versions of this for Christmas!
• Peek-A-Boo Barn - (Lite Version is FREE; $1.99 for full version) The lite version of this app gives you only three animals, but the full version has thirteen. Grace loves to tap the barn to see what animal is inside and mimic their noises.
•  Fisher Price Apps - (Most of them are FREE!) Fisher Price makes bright and colorful apps with great music that keep Grace engaged. Her absolute favorite is Storybook Rhymes Volume 2. It sings and animates her favorite song, "Row, Row, Row Your Boat".

All of these apps are available for both the iPad and iPhone.

A Grace-full Monday

Saturday night, Grace woke up with a 103 degree fever. I gave her some ibuprofen and rocked her back to sleep hoping it would all be gone in the morning. The next day she still had her fever, was lethargic and irritable. With all of the germs the kids bring home from school, I knew it was probably just a virus. But I also knew that these were the signs of a shunt malfunction.

 After a visit to our pediatrician didn't find anything major, we were advised by our neurosurgeon's office to go to the emergency room. A CT scan didn't find anything wrong with her shunt, but her neurosurgeon admitted her for observation.

To make a very long story short, we spend the night at the hospital. Grace got fluids, antibiotics and lots of rest.

It turns out she was hospitalized for just an ear infection. I felt so silly when they determined that there wasn't anything serious wrong. But from the very beginning of her life, I promised myself that if that tiny voice says, "It could be her shunt", then I will listen to that voice. An ear infection can be cured with a simple antibiotic. Shunt malfunction can mean major surgery.

I'm so thankful it was nothing serious this time!

Diaper Toss

 

This is what happens when Grace gets a hold of the bag of diapers.

Best. Giggle. Ever

Evil Laugh

It's only a matter of time before she takes over the world.

Socks

I loaded up the girls to go pick Riley up from school. It was cold, so I bundled them up, put socks on Gracie's feet and wrapped her in a blanket. Once we got to the school I turned around and saw this:

I found her socks, put them back on her feet and tucked her back under the blanket. A few minutes later, I checked on her again and saw this:

Again, I found her socks, put them back on her (while she was screaming at me) tucked her into the blanket and watched for Riley to come out of the school.

Riley came to the car, so I turned around to greet him and saw this:

Stubborn baby.

In Her Own Time

I love giving (and getting!) books for Christmas. I believe you can never have too many books, especially when you are little! This year I've carefully selected books for the young ones on my list and hope they enjoy them. The book I've picked for Grace is one that I originally picked up at the library and fell in love with it.

Ruby in Her Own Time is about a duck that hatches late, doesn't like to eat and won't swim. Father duck worries that she'll never do these things, but Mother Duck assures him she will "in her own time." And she does!

It's a bit hard to find (I don't want a used copy, but also don't want to pay $40!) but I will find it. There are a few other Ruby books that may be added to our library as time goes by.

I'm sure I don't have to explain why I love this book for Grace. She has delays now, but she can and will do anything she wants....in her own time.

What Gracie Sees

Looking up is something new for Grace. Because of the pressure of the extra fluid in her brain and her low vision, she normally keeps her eyes downcast. Seeing her look up makes my heart sing.

Grace recently had her follow up with the opthamologist. We still don't know how much she can see, but the nystagmus (eye's shaking) and strabismus (eye crossing) is getting better. He asked if I think she is seeing better and I wasn't sure how to answer that. Sometimes I feel like she can absolutely see. Other times she won't look at something that's right in front of her. She seems to see better with her peripheral vision and when it's especially well lit, but tends to hold toys very close to her face often.

Grace looking at her ring. It's hard to know if she does this because she can see them better
this close or if this is just a quirk. She does this frequently.

So many things about Gracie's condition are "wait and see". Will she be able to see normally? Will she need to learn braille? Will she be able to attend school without special assistance? Will she run into things a lot when she starts crawling/walking? There is no guidebook on what to do when your child is visually impaired. No "What To Expect - The First Year with your VI Baby".

Maybe I should start writing one...

Hydro 101 - Causes and Cures and Treatments, OH MY!

In Gracie's case, we know why she developed hydrocephalus. She suffered a severe brain bleed in utero and a blood clot from the bleed prevented the CSF from draining properly. Unfortunately, we have no idea what caused the brain bleed.

 Some cases of hydrocephalus are caused by infection, some by trauma, but in many cases there is no known cause. Most cases (about 70%) are congenital, which means it is diagnosed before or shortly after birth.

There is no cure for hydrocephalus. There is no pill, exercise or magic wand to wave and make it all go away (trust me, I've prayed for one of those!) The only treatment for hydrocephalus is surgical - a shunt is surgically placed in the brain to help drain the fluid. There are three parts to a shunt - the catheter, the valve and the distal end. The catheter is a narrow tube enters the ventricle of the brain. The valve is usually placed outside of the skull (under the skin) and behind the ear. It's job is to control how much fluid is drawn from the brain. The distal end is a long tube that goes down the neck and into the area where the excess fluid will be absorbed.

Grace has an adjustable VP shunt. Since it's adjustable, her doctor can increase or decrease the flow with a magnet instead of having to do surgery. (It's a special, heavy duty magnet - fridge magnets won't affect it at all.) The "VP" refers to the part of the body where the excess fluid is drained. Gracie's distal end of her shunt leads into her abdomen, but in rare cases it can also be fed into the lungs or heart. Grace has a small scar on her belly where they had to adjust the placement of the tubing during her first surgery. If you feel above the scar, you can actually feel the tubing! You can also sometimes see the tubing in her neck if she turns just right, although that is getting harder now that she's getting chunkier.

The really bad thing about shunts is that they are not permanent. They can last 5 minutes or 50 years. In our case, Grace's first shunt lasted 7 months before it had to be replaced. Hopefully her new shunt lasts much, much longer.

Since there is no cure for hydrocephalus, Grace will need her shunt for the rest of her life. This treatment isn't just a one time thing - it's a constant, daily issue of watching for signs of malfunction. It's unexpected hospital stays. The possibility of major surgery looming over her sweet head regularly. Fear of her being hit in the head accidentally.

Grace had her shunt replaced in April and we are just now on the verge of getting the flow right. She's had 19 CT scans in her short life. The radiology department is on a first name basis with us and I have her neurosurgeon on speed dial.

I hate this for my daughter. I don't want this for the rest of her life. But these are the cards that we - and so many other families - have been dealt. I pray daily that they find a cure at some point in her lifetime.

Manic Monday

Over the past weekend, Grace was acting a little fussy. She would be really clingy one minute and just fine the next. We chalked it up to teething and went along our way. Monday morning was a different story. Grace was nearly inconsolable and had a high-pitched cry - almost like a scream. I still wanted to believe it was from teething, but I knew better. One of the signs her shunt is malfunctioning is a high-pitched scream. I called her neurosurgeon who had us come in that afternoon for a CT scan.

By the time we went to get her scan, she was her happy self again. I fully expected the doctor to confirm that it was just teething or other regular baby ailment. Instead we were told that her shunt was over draining, she had a bi-lateral bleed (her brain was bleeding on both sides), her ventricles had collapsed and that she would be admitted to the hospital. I was shocked and so thankful I listened to my gut and had called the doctor. Sally, the nurse practitioner we love, adjusted Grace's shunt to reduce the flow and we waited to be admitted. Since Grace has an adjustable shunt, all Sally has to do is hold an oblong contraption up to Grace's head, then twist a magnet near the shunt. Modern science!

Peek-A-Boo! I will not nap for you!

Twisted in two blankets and all her cords.

Jeff left work to get the older kids and be with us for a little while. Since the kids weren't allowed in the PICU, Jeff took them home and Grace and I settled in for the night. Her neurosurgeon came in to see us and told us that there was NOT a bleed (Thank the Lord!) but her ventricles had collapsed and it would take a while to resolve. He wanted Grace to stay at least one night to be sure that she didn't get sick from the adjustment in pressure in her brain. In the meantime, Grace was causing a ruckus singing, eating the cords and getting all twisted around in her bed. Around 9, I left to run home to grab some clothes and came back about two hours later to find out that Grace had thrown up all over a volunteer that was holding her. Afterwards she was completely fine and slept soundly for a few hours. About 6 AM, we went down for her second CT scan. Her neurosurgeon came in around 6:30 and said that everything looked the same, which is what was expected. He was comfortable sending her home as long as we watched her closely and called if anything changed. We made it home around 9:30 and surprised the rest of the family!

Nom. Nom. Nom.

She's thrown up a few times since being home, mostly after eating solid foods. She's very congested right now and the mucus has made her throw up in the past, so since there hasn't been any fever or  change in temperament we're holding on and keeping in close contact with her neurosurgeon for the time being. She will go back for another CT scan and check up on Tuesday. She will also be fitted for her hand brace and have a second hearing test next week. So pray for all good results and lower gas prices! :-)

So glad to be home!