Friday, October 29, 2010

So Sad

Epilepsy sucks! In fact, it blows! It's a nuisance and a constant worry in our lives everyday. But for so many people that I have met, and read about, it's so much more than just a nuisance.

My heart is so heavy for Gracie's family, at Gracie's Journey, as Gracie went to Heaven last Saturday. She fought so hard against a devastating seizure disorder. I never got the opportunity to meet this precious child, but in her 3 months, she has touched and impacted my life more than anything. I fell in love with her the first time I read her story and saw her adorable picture.

Please pray for Gracie's parents as they search to find comfort in their lives.God couldn't have chosen more loving or wonderful parents for Gracie.

Friday, October 22, 2010

I Became A Mother 6 Years Ago Today

My baby is 6 today!! Happy Birthday Elizabeth!

Taking on the job of motherhood was an enormouse change for me. I was married, owned my home, had an exceptional job...but it still turned me over and pretty much dumped me on my head. I struggled with motherhood at 28 even with the love and support of a husband. I want to recognize, hug, shout out, put it on the biggest billboard ever that all you single mothers and or fathers out there, you all are amazing. I am in awe of the strength that each of you carry everyday!! God Bless you all!!

Parenting...hands down...the hardest job in the world. But when they curl up in your lap at the end of the day or give you those big bear hugs and tell you they love's moments like these that make every gray hair and wrinkle worth it!

I love you Elizabeth!!! Happy Birthday gurlfriend :)

Friday, October 15, 2010

On Paper

Meghan is 2 1/2 years old. 30 months!! On paper, according to her most recent developmental progress report from Easter Seals, she is:

Gross Motor Skills: 15-18 months
Fine Motor Skills: 12-15 months
Communication Expressive: 12-15 months
Communication Receptive: 12-15 months
Cognitive Abilities: 18-21 months
Social Emotional Development: 21-24 months
Self Care: 21-24 months

We still have a road ahead, but I cannot thank our therapists from Easter Seals and all the help and support from Alta California Regional Center for everything they do!! They are all such a blessing!

Thursday, October 14, 2010

Going Back...I Wish I Could

I go through phases of epilepsy research. There are times that I cannot absorb enough information and other times I PHYSICALLY cannot make myself look into epilepsy. I guess 2 years later, it is still a bit surreal. Well this past week I have had my face in the computer reading blogs, researching websites and emailing new friends who share the world of epilepsy with us. I have gained a plethera of information and I have formed quite a list for Dr Chez (sorry doc). During my research, I did happen upon a type of epilepsy called Status Epilepticus. Meghan has had this quite a few times. Whenever she goes into a Generalized Tonic Clonic, she can never pull herself out of them on her own. It takes high doses of Diastat and Ativan, to the point of intubation, for them to stop. But reading about this brings me back to an event that, to this day almost 2 full years later, physically hurts my heart to think about.

In January of 2009, Meghan got some random virus which ended up in double ear infections. Matt and I took her to the after hours clinic where she ended up going into a Status Epilepticus seizure. The doctor sent us over to the ER, which was just on the other side of the parking lot. We got right in, X-rays, CT scan, blood...the whole nine yards. They admitted us that night into the special care unit as she was being monitored. On the second day, the doctor came in and said that she can go home. She still had a fever, and was still apparently sick, but they did not see anymore seizure activity. That night we put her to bed. My mom told me that maybe we should stay up with her, but I said that she would be OK. She has not had anymore seizures. So off to bed we went. I got up the next day, got ready and went to work. At 8:30 that morning my mom went in to get Meghan up as she usually didn't sleep that long. Meghan was completly unconcious and unresponsive. She was breathing, but she wouldn't wake up. She was 10 months when this happened, and when we got back from the hospital after that episode, she was equivilent to a 2 1/2 month. That night she had a Status Epilepticus seizure that honestly probably lasted 3 to 4 hours, thus causing her brain damage.

This event will haunt me forever with the "if only's".

Since I have read so many personal experiences, I don't blame myself much anymore for Meghan's epilepsy or seizure condition (since we don't have an actual diagnoses yet). I did go through that and it sucked. I have really worked on having a better attitude about it, and I think it has worked. I was talking to my friend yesterday about a mutual friend of ours who's daughter has epilepsy. She said something like "I don't understand. There are so many parents who are crack heads or meth heads and have perfectly healthy children. Here are you guys who did everything right in pregnancy and look what happened." Awe friend, I have said that to myself a hundred times in the past, talked to God about it wanting that explained. But here is where I know I have grown as a mother and I am so damn proud of myself. Instead of responding with "It's not fair. I did do everything right." I responded "But could those parents care for children like ours. Not in a million years." For me this is a HUGE breakthrough. I can do this, and I am so proud of my Meghan that she has been so patient with me while I journeyed to this point. Thank you my Meggers!!

Thursday, October 7, 2010

Just Normal Kid Stuff

As a parent with a child who has a medical condition, it seems like we never get the opportunity to just sit, relax and just watch our children. There is always some sort of scrutiny and or assessment going on when I watch her play. Was that a seizure, are her meltdowns a side effect of the medication, can I call her change in play progression in her development, and so on and on. I feel like I am always on a heightened sense of alertness with her.

Dr Khan, one of our neurologists, thought it was amazing how well I can spot her seizures. We went in for a 72 hour EEG. Along with the leads on her head, the entire test is video recorded (always fun trying to sleep under the watchful eye). He would see me play with her on the bed and then I would push the seizure button. He visually could not see the seizures but the EEG patterns picked it up. I am just so used to spotting them.

So, the past week or so, Meghan has been cranky, not wanting to eat, screechy, completely unhappy and unsettled. So I analyze and compare her symptoms to what I think could be going on. And it goes something like this:

Meghan's Symptoms:
Ear Poking
Loose Acidic Stools (sorry - tmi)
Bad Diaper Rash
No Appetite
Waking up through the night (ugh)

My Diagnoses's (yes...plural):
Steroid Withdrawal
Vimpat Withdrawal
Adjusting to the Felbatol...still
Maybe showing an allergic reaction to the Felbatol

A Tooth!!!

Not just a tooth but a 2-year molar. I had to laugh. Something so normal and I completely missed it. Hello...wouldn't that be anybody's first guess!! I guess it just goes to show that with a child who has a medical condition, sometimes the normal is so abnormal for us parents.

Tuesday, October 5, 2010

Cautiously Optimistic

On Friday October 8 will be two years exactly that Meghan had her first seizure. Oh how I remember that day. She had her well baby check that day and got her 6th month immunizations (the final dose of the previous two immunizations). I also opted to get her the flu shot. We are not big on the flu shot, but with the girls being in daycare and Elizabeth previously having it without any problems, I went ahead and got Meghan hers. I went back to work that day after the appointment but totally had this urge to just want to be at home with her. The evening came and everything was uneventful! Meghan, being 6 months of age, liked to look at herself in the mirror. So my mom had her up on the bathroom counter and Elizabeth kept turning the light off on them. Every time she would turn it off and on, it would scare Meghan and she would jump. It was pretty funny actually. Well, they left the bathroom and my mom carried her into the kitchen. It was then that my mom noticed that she was continuing to do that "startled type" of jump or twitch. She called me in and I watched her. I have NEVER seen a seizure in my life or really gave seizures a second thought for that matter. But all it took was maybe two twitches, but the look in her eyes and the propped open mouth, I knew it was a seizure.

Poor Matt was on the bed talking on the phone to his sister down in LA. I ran in the room, yelled at Matt to get off the phone, call 911, Meghan was having a seizure. Really, poor guy, I have never seen panic and confusion like that in him. As we were waiting for the ambulance to come, Meghan let out this laugh that completely sounded like it was inhuman...seriously!!! I still get chills remembering that laugh. The paramedics came, confirmed that she was having a seizure, and we loaded up and headed to the hospital. In the ambulance, they actually had to give her an adult dose of Ativan because the seizure wouldn't stop. After a few days in the hospital, a normal EEG and MRI, we went home hoping that it was just single event.

Here we are two years later still looking for a known amongst all the medical craziness. It has always been 1 step forward and 2 steps back. But today, for the first time in 2 years, I feel like we have taken 2 steps forward, and not a single stumble backwards. I'm cautiously optimistic because I have learned that you can't jump full on into a celebration because the celebration may only be short lived. However, you bet I am doing my little happy dance in my cautiously optimistic phase!!!

So why you ask...the Felbatol is working!!!!! We have reduced her seizures on average from about 30 a day to maybe 2. We don't know what her EEG looks like, or what an MRI will show, BUT, the seizures are decreasing! That's a start and it was enough to even make Dr Chez excited (seriously that takes a lot). We are adding a little bit more Felbatol to her medicine regime to see if we can clean up the straggling seizures and we will go in for an EEG in a few weeks. I pray that this continues to work because her seizures have been so hard to control with the medication. Time will tell though.

Meghan's last Steroid shot is tomorrow...woohoo!!! She is actually starting to look normal again. Thank you all for your thoughts and prayers.

In a matter of 4 weeks on the steroids, Meghan went from this...

To this!!!

Eight Years!!!!!

I am so totally proud to announce that today is mine and Matt's 8 year Wedding Anniversary!!!! Matt is such a wonderful husband and truly my best friend. Looking back at our life, it hasn't really gone exactly as we had planned. I mean really who sits down with their new spouse and say "Let's see, we want to keep our debt level just barely below constant stress, let's throw in a water pipe breakage in which this would lead us to put brand new plumbing throughout the house, we want the neighbors behind us to constantly heave stuff in our back yard and try to shoot the squirrels with homemade blow gun darts. Oh, and those darts will sporadically litter our yard thus making us do a walk through prior to letting the kids out. Kids, lets plan for a special needs child that will truly test our marriage to the very last straw...but it will be great!" I can go on and on, but I DO have to say that I am truly blessed with EVERYTHING we have. It has had it's bumps, and there will be so many more bumps, but when I snuggle in his arms at night and he holds me tight, I feel that WE can take on the world by ourselves. It is the best feeling EVER. Happy Anniversary Matt <3>

Every year, the Monday before our anniversary, Matt will send me a dozen red roses and a white rose for every year we have been married to work. Every time I look at then I get this ridiculous grin on my face!!