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Do you shop at Amazon.com or know someone who does? Click on the link below, or any Amazon link in this blog, to help us earn Amazon Credit in order to buy therapy equipment! Anything you order off Amazon counts! Please bookmark Madi, Ramya and Deena's link and pass it on... every order helps! http://www.amazon.com/?_encoding=UTF8&tag=missmadi-20

Wednesday, August 29, 2012

Madi's 2nd Seizure and 3rd Ambulance Ride

Little Miss made sure that we had a VERY exciting day today.  She woke up early throwing up and then went back to bed for a few minutes.  I handed her to David to change my shirt and put in my contacts then heard him screaming for me.  I ran in and he said he thought she was having a seizure (she was).  I held her for a few minutes and then she started responding.  She told me she barfed about 20 times and I cleaned her up with a wet napkin, but I noticed she couldn't move her right arm at all and it was just floppy.  Then she went unresponsive again.  We gave her the seizure meds we were given to stop her seizures but she didn't seem to be responding to them, so we called 911.  She fell asleep shortly after we called them.  They came and checked her out and said she looked good but they recommended we take her in (and we agreed as her right arm was still floppy and her left eye was twitching weird) so they loaded her and I onto a gurney and into the ambulance.  Once we got in the ambulance, she regained function of her left arm. 

The first thing we checked in the ER was her urine and her shunt, both of which came back fine.  They said that she would probably have a "big" MRI and another EEG, but sent the neurologist in to talk with us.  He reviewed her past EEG and said that her abnormal firings are coming from the area of the brain where her shunt enters her grey brain matter.  He said her shunt is working fine, but that any time something abnormal happens to the brain matter or enters the brain matter, it puts you at risk for seizures.  Her body sees her shunt as a foreign object, obviously, so it reacts to it.  He said that there is about a 3% chance of a child seizing from their shunt when it's not actually malfunctioning, and Madi, he believes, is part of that 3%.  So, basically, moving the shunt probably won't help, as we would just be entering a new area of brain matter.  If, at some point, we decided to do a third ventricularoscomy (don't ask me if I spelled that right!!), that would probably take away the seizures, IF it was successful.  He said that the area where the shunt was would still leave a "scar" of sorts, so it may not help, but it would most likely help. 

When I was describing what happened to the neurologist, he said he believes her seizure actually started when she started vomiting.  That would mean she had another abnormally long seizure.  He wants her on anti-seizure meds from here on out for at least a few years.  I'm a more naturally-minded momma, so the thought of more meds makes me want to cry, but so does the idea of more seizures.  He said that he's not concerned about the frequency of them, but more at the length of time they occur for.  He told me that if she continues to have long seizures then it will change that area of her brain over time.  He said the problem comes when a child has had them long-term and becomes a teenager.  They start to have difficulty controlling them and can't always stop them any more.  I asked about how often the medication helps control them, and he said it works in about 65 to 85 percent of children.  The neurologist said that he didn't feel another EEG or MRI were necessary and sent us home.  Madi said he ("the man with the spiky hair" as she called him) was her best friend, because he got her water :).  We have to go back and see him in a few weeks. 

They also checked Madi out to see if she had a stroke, but they are sure she didn't, as she didn't have any facial drooping and she regained function so quickly.  They said temporary paralysis is a side-effect of seizures sometimes.  Though it's not super common, they see it fairly often. 

The other fun was that my phone was mostly dead today when I left in the ambulance and it totally died after I called Madi's OT and told her not to come for therapy that day.  I had grabbed my phone charger, but my phone wasn't working from the hospital, so I couldn't call in or out.  I could have used the hospital phone, but Madi was hooked up to wires and didn't want out of my arms (and was asleep a lot of the time), and I couldn't reach the phone from the bed.  I texted David and asked him to call my parents, but the text didn't go through.  He didn't think to call my parents, so they didn't even know we were in the hospital! 

So that was our fun for the day!  Please keep little miss in your prayers.  She is back to her normal, spunky little self, thank God!  I am also very thankful right now for video baby monitors, and for the fact that she pretty much just still sleeps in my bed.  There are few things greater than peace of mind!



Tuesday, August 28, 2012

Our Little Vacation

We weren't able to get away this year for long (we are saving our money and David's time off for India :)), but we were able to sneak in a little vacation to California to take the kiddos to Seaworld.  It was their first time there, and they loved it!  We stayed in Carlsbad at my parent's timeshare on Thursday  night and Friday night and enjoyed the beach.  On Saturday we headed over to San Diego and on Sunday we went to Seaworld.  We came home Monday, but stopped at Seaport Village on our way out.  It was a really fun weekend (and a good distraction to my wondering how our first India court date went ;)).  Here are some photos:

 
Exploring a cave with momma (he got his cast off on Thursday before we left but needed more time to heal so they splinted him again.  At least now we can swim and bathe again!!)

 
Look mom, I found a snail!



Hanging out with Papa at the beach:
 


 
Sea Lions!

 
Never too big for the Toddlerhawk and cuddle time with momma!  Moments like these don't happen often any more, so I treasure them!

 
Conner's first boogie bording trip!




The beach was COLD!
 

 
Madi made a sand turtle!



Madi was playing her new dollar store guitar and was singing for papa... too cute!!
 

 
Seaworld!

 
Touching the starfish (conner wouldn't hold them)

 
Papa, Grammy, Kyla, Grandad, and Grams all came!

 
Madi loved touching and holding the starfish

 
Madi's new "baby", which she named "Woo Woo Wa Wa Woo Woo Wa Wa", and had to strap in to her wheelchair with her, of course!!

 
SHARKS!




Touching stingrays
 

 
Best of friends!

 
Our new boyfriend

 
Watching dolphins with Grams

 
Dinner with Deana, my birth mom, Lindsay, my half sister, and Nathan, my half brother

 
 
P.S.  As if I wasn't already, I am officially a PRO at cathing on the go!  We were almost never in our room!

Monday, August 20, 2012

The "W" Word

You are chugging along, enjoying your pregnancy, and then bam, you find out your kiddo will be born with spina bifida.  They give you a ton of information about what your child will be like (though really, it's more like a worse-case-scenario that doesn't end up describing your kiddo as much as they say it will), and then you hear the w-word... wheelchair.  For some reason, that word can be the hardest to hear, when really, it shouldn't be at all!  I think when people hear their child will be in a wheelchair, they start to think about all the things they think they won't do.  You start to envision your child sitting on the sidelines, watching all the other kids run and play.  The truth is, though, that a wheelchair should not put anyone on the sidelines.  Sports, marriage, children, driving, college, independent living; it's all possible, wheelchair or not. 

Many times new parents are told their children won't walk, but sometimes doctors are wrong.  No one can predict what your child will or will not do.  Here are a few pictures of children and adults who were never supposed to walk...

















Lots of amazing adults and children use wheelchairs.  A wheelchair is nothing more than a mode of transportation.  It doesn't mean the end of a life, it doesn't mean sitting out during life, and it doesn't change anything about who a person is or what a person is capable of.  Yes, it may mean doing things differently, but a wheelchair doesn't have to slow anyone down.







Here are a few people rocking their chairs...









Then, of course, there will be those like Madi who do a little bit of both...





... and that's ok. 

If you are a new parent and you have been told your child will be in a wheelchair, I am here to say, it's ok.  A wheelchair gives a person freedom.  You child will not be any less perfect or amazing.  It does mean, though, that they will be pretty darn fast ;).

“Being disabled should not mean being disqualified from having access to every aspect of life.
-- Emma Thompson