Starting The Year Over

OK, well, January...not so great. In fact, January SUCKED. So I will NOT be counting January into my year. Nope! Sorry January, you LOSE! As the clock strikes midnight on Jan 31, 2011 and we embark on to Feb 1, 2011...my year will begin!

I know technically this does not change anything, but hey, it makes me feel better. So everything that I had mentioned previously holds true...beginning Feb 1!!!!

These past couple weeks have been super busy! Last weekend I headed back home, to Pismo Beach, for my friends funeral. I still can't believe what has happened. Lots of tears and hugs that day. Melinda was just beautiful, all around beautiful.

Ugh....the struggles with Meghan. Her seizures are still under control, but we are still dealing with teething (2 year molars). This leads to one unhappy, sleep deprived, all around cranky parents child.We finally got around to converting her bed from the crib to a toddler bed since she was continuously climbing out...although more graceful since the first time!Well with this new found freedom she has, she feels that she can take it upon herself to get up at 2:00 am to watch a bit of TV, and seriously protest when made to go back to bed. Hello dear Meghan...you are only 2 years old!

Elizabeth! Minus her serious attitude that she has developed...hello dear Elizabeth...you are only 6 years old...she is doing really good! I actually see improvement with her reading! Thank you God!!!! She did however, lose some ground in Math. So being the type A mom that I am, she goes to a math group, at school, four days a week before school starts. And two days a week she stays after for reading group!! AND, on those two days, she goes over to do friends house and do homework with him! For the first time in months, I feel like she just might make it to 2nd grade (Yes I stress).

Disabled

For the first time ever, I'm admitting that my child is disabled. Ever since Meghan had her drastic regression in development, going from a normal 10 month old baby to being the equivalent of a 2 month old in every aspect, I have always held on to the fact that she is just delayed. My child is not disabled, she is just delayed. When my heart would race with anxiety of her condition, I would tell myself to calm down, she is just delayed. She will catch up. She is just delayed.
About two weeks ago we had our 6 month IDP with our intake coordinator with Alta Regional. At little bit of background, Meghan was accepted in the Early Intervention Program after her set back. Alta mainly used Easter Seals as our vendor for Developmental Therapy, Occupational Therapy, Speech Therapy, and Physical Therapy. All children can remain in this Early Intervention Program until they are 3 years old. At that time, they become the responsibility of the school district to take over all developmental needs in order for them to succeed or develop in life. There is a chance however, to continue services with Alta Regional, if your child is deemed, by their board members, as being severely handicapped or disabled. If this happens, whenever we go up against the school district for her IEP's, we will have an advocate from Alta backing her disabilities and pushing for services if they are reluctant. They also help setting Medical and SSI in place for families.

We got the call from our intake coordinator that the board has deemed Meghan disabled and they will be continuing her case when she turns 3. Bittersweet! Yay, we have an advocate, another voice that will help get Meghan what she needs! A support system that we can turn too. The help with getting signed up for Medical and SSI. BUT, my child, Meghan is disabled. That is hard to swallow. It was hard enough to come to grips with her being so delayed, that accepting the label disability will take some time. And this may not be a permanent disability. If we can keep her seizures under control, and reduce some of her medications, then she may develop leaps and bounds and catch up to her age level. I am very confident by the time Kindergarten comes around, she just may be able to run with the big kids :) So even though Meghan being labeled disabled is bittersweet, I will always continue to hold on to hope that she will overcome it. If not, then that's OK. She is my huggable, luvable, squeezable Meggers and disability or not, I will do whatever it takes to be the best mom ever!! Trying it on for size....My name is Kerri, and I have a child with a disability. Not as hard as I thought!

These poems have helped me immensely through our process: A Magical Poem and Welcome To Holland

Finally A Diagnosis...Sort Of

Tuesday we had an EEG for Meghan. We have seen very little to no seizure activity over these past several weeks, so I was so excited to see what the EEG would look like. Well...not too good. Still abnormal with more spiking on the left side (the more "sick" side) with some on the right. It is hard to say if she is actually have seizures on that side, or if the seizures are firing very close to the right side and just crossing the hemisphere. She had better EEG's when she was on the Steroids, but the overall improvement from the Steroids themselves was very minimal. Minimal enough where he felt that the risks outweighed the benefits. So far, the medication that has worked the best is the Felbatol. Dr Chez was hoping for a better EEG, but was so totally thrilled to hear about her diminished seizure activity.

Meghan has been seizure free, but her balance is so bad. She literally bounces off the walls when she walks down the hall. It is so sad to see her get frustrated from falling all the time. So, starting today, we are reducing her Clobazam and Depakote to see if that will help her. I'm totally nervous. I really hope that we wont see an increase in her seizure activity.

So I spend a lot of time on the Internet researching Epilepsy. About a month back I happened upon Dravet Syndrome. When I read about the onset, seizure progression, triggers, reluctant to medications, and the developmental delays, I could swear this was written for Meghan. So Tuesday I asked the Neuro about her possibly having Dravet Syndrome. He indicated that he was pretty sure that during her genetic testing, the SCNA1 Channel came back normal, which it did. I reminded him that it was indicated that one of her channels came back abnormal. He pulled up her tests and found that she did have an abnormal mutation in her KCNQ2 Channel. He then went on about how the Channelopothy's work and blah blah blah blah (I shut down when it comes to genetic talk). To sum it up...he is confident the she has some form of epilepsy that could be Dravet (because you don't need to have the gene mutation, they can clinically diagnose it) or related to Dravet (undiscovered...still). Hello...where is my kick down doc??? After all, I suggested it...right (LOL).

From here going forward, we are going to continue on our path of treatment of medications. She is responding well to these current medications which is awesome! We will be doing another MRI in hopes to see a reduction in her brain inflammation due to the past Steroid treatment and her lack of seizure activity. We have the Keto Diet in our back pocket if need be. We are also going to more than likely pursue the HBOT (just need to figure out fundraising). Unfortunately our hope that Meghan will outgrow her seizures is diminishing rather quickly. So...we will pick up our boot straps and keep on truckn (I think that's a saying...I get them confused).

What I Never Expected To Know

I know the difference between her Complex Partial, Generalized Tonic-Clonic, and Myoclonic Seizures. I know when she is startled or when she is having Myoclonic Twitches.

I know about Clusters.

I know her Aura's and when she is in a Postictal Stage.

I know her triggers and how to avoid excess seizure activity.

I know that the excess drool sometimes is not do to her cutting molars.

I know way too much about Anti-Epileptic, Anticonvulsants, and Rescue Medications.

I know the EEG process inside and out. I know what abnormal brain waves look like and which side of the brain they are firing from. I know where Lead T3 connects and how to fix it if it comes loose. I know the variations in the Strode Test.

I know what her brain looks like through her MRI's. I know, from the inside, how damaging epilepsy can be. I know where to identify the abnormalities...and I can show you.

I know the difference between an Ambulatory EEG and an EMU.

I know what SUDEP stands for and I fear it. I know what SMEI is and I truly believe she may have this. I know at what point she may go Status in a Seizure.

I know when to breathe easy, and when to call 911.

I can have a conversation with her Neuro Surgeon regarding a Hemispherectomy, Cross-Hemispheric Seizures, Brain Biopsy and know exactly what he is talking about.

I know how to give her shots, take her blood pressure, and monitor for Ketones in her urine.

I know to fear fevers and flu season.

I know what it feels like to hold a sleeping baby all night just so I can feel for seizures.

I know the PICU and Special Care Unit nurses by name.

I know what a Downstream Occlusion is, and I can actually fix it now.

I know the difference between the IV alarm, Respiratory alarm, and Pulse Ox alarm without even looking.

And most recently, I know the finality of Epilepsy.

This is MY Holland, and amongst all of this, I have a precious little girl who loves life! A little girl who thinks all of this is normal. I still hold out hope and pray that this could be a part of our past and that someday we will be seizure and medication free! It's her smiles and hugs, that make all the glitz and glamour of Italy seem so unimportant in life.

November is Epilepsy Awareness Month!!! Please say a prayer for all those who live with this horrible disease.


This is a face of Epilepsy <3

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.

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!!

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:
Crankiness
Ear Poking
Loose Acidic Stools (sorry - tmi)
Bad Diaper Rash
No Appetite
Cranky
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

Verdict:
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.

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!!!

Back To The Drawing Board...

We had another EEG on Tuesday and the improvement was not any better over the one we had two weeks ago. So, we have decided to take Meghan off the Sterroids, and adjust her medicine regime. Currently she is on Vimpat, Depakote, and Clobazam. We are going to take away her Vimpat, keep the Clobazam as is, reduce her Depakote a tad, and introduce Felbatol. Apparently, in some situations where the Depakote works some, but does not completely eliminate the seizures, the Felbatol can go that extra mile and possibly knock out the rest of her seizures. Dr Chez was very happy with her socialization and her trying to mimic new sounds and actions. Yay for that.

We really hope this works. It may take some tweaking to get the medications right, and her blood levels OK, but for her age, we are running out of medicine options. If this combination of medication does not work, then Dr Chez wants to put Meghan on the Ketogenic Diet. In March of 2009, we met with a dietician to go over the Keto diet and what it entails. It is basically an EXTREME Atkins Diet. I guess with the total elimination of glucose and carbs, your bodily naturally will raise the Ketone levels and for some reason they help reduce, even eliminate seizures. So instead of a snack of cheerios, she could have some peanut butter, mixed with canola oil, and topped with some mayonnaise. Yum...I think not. BUT, if this diet will help, then yes, we will do it. Our plan though for now is to get her adjusted to her new medications, get the Sterroids out of her system, then put her on a Gluten Free diet. If all that still fails to help eliminate her seizures, then Atkins here we come (You know I will be chowing pizza in my garage).

Matt and I are also in the process of researching Hyperbaric Oxygen Therapy (HBOT). This is definitely a more homeopathic route and is frowned upon by the some neurologists (ours especially). This therapy we would use in conjunction with her medication. There is no telling if it will totally help her or do absolutely nothing for her. This therapy is SO expensive. We are looking at going 5 days a week for 80 weeks (yes 80) 1 hour a day. Total cost, 10K! Yikes, as it is not covered under insurance. That amount of money is A LOT for us, but really can we put a price limit on what we will do to help get our daughter well. No. SO friends, if you see us out holding a sign to wash your car for donations, please stop...LOL! We are still researching it, looking through medical journals (thank you psychology degree for teaching me how to read those), talking to anybody that has heard anything about it. Right now, we are leaning towards yes.

Meghan is such a strong little girl. She totally brings us so much joy. To say that I love her, is TOTALLY an understatement. I'm so proud of both of my girls.

I feel bad that I never talk much about Elizabeth. She is an ANGEL...well an angel with an attitude...but hey, she is my child :) She is doing so good in first grade. I love listening to her read, and the effort that she puts into her homework. I actually got in trouble from her teacher...LOL. Elizabeth has the BEST teacher! She is retiring this year and I am so blessed that we got her as a teacher. So, when the kids went back to school, they were assessed on their reading. I HAD (there is that darn word again) planned on working with Elizabeth throughout the summer to make sure that she keeps up on her reading. Well, didn't happen. So, based on her reading assessment, she was put into the early reader program which is for the lower level readers. Elizabeth didn't care, but it broke my heart. So, I drilled sight words, letter identification, letter sounds, rhyming words down her throat EVERY night. Matt and I mom shook their heads and told me that I was only going to hurt the situation more. But oh no, I was right, the overachiever Type - A personality, I was right and this was the way to do it. So proudly I went to Elizabeth's teacher so I could take a look at her reading assessment and know what to focus on (well really to add another layer to the homework schedule). I told her what I was doing and she sat there and totally looked at me. She said that I was doing way too much and really Elizabeth only needed help with certain letters and their sounds. So, she wants me to let her do the teaching and I will supplement with sight word identification and her homework papers that get sent home. I felt SO much better talking to her. Love you Ms. Knight!!! I am so so so so proud of Elizabeth! And, oh my, she is growing up so fast!!

The Past 6 Weeks

Oh my goodness...where has the time gone. We have been in a whirlwind of busyness over these past 5 to 6 weeks. Seeing how I took 3 weeks off of work, one would think I should have been able to post an update blog earlier...FAIL!!! So here we go...

The Biopsy
Meghan had her Bilateral Burr-hole Brain Biopsy (that's the official terminology) on Aug 6! This biopsy was going to give us the answer on whether or not she has Rasmussen's or some other form of Encephalitis. Needless to say Matt and I were scared to death for this biopsy. After all, they were going in and taking brain tissue on both sides of my daughters head. The Neuro-Surgeon stated that the right side of her brain looked great! Thank goodness for that. However, he did say that the left side looked very abnormal with a completely different coloring and texture (we sorta knew that with since that is where the damage is). Well after she awoke from her anaesthesia, she was good to go. She was still the same Meghan that we went in with...phew! Well she was missing a couple patches of hair and had some gross looking scars, but she was great. Twenty-four hours later we headed home!!!

Meghan pre-biopsy at 5am!


Meghan during recovery. She actually launched herself forward and hit her head against the bars. Of course...my child less than an hour after brain surgery hits her head!


Looks like we removed her horns instead of giving her a brain biopsy...LOL!



The Waiting
Her biopsy was on a Friday and we were told we would get the results by the following Friday. Luckily, Elizabeth went back to school in which I busied myself with that and doing odds and ends around the house. If I didn't have that to keep my busy, I would have gone CRAZY. SO...Friday rolls around, the 1 week mark, and no call. I picked up the phone and called the Neurologists office! I was told that our Neurologist is out of town and will not return until the following Wednesday!! WHAT!! The receptionist could see that the results were in but there was nobody in the office that I could talk to at that time to get them. Grrr, I was sooo not happy. How dare they go on vacation when I am sitting on pins and needles. So once again...I busied myself through the weekend and tried not to think about it too much...yeah right!

The Call
Monday morning came, I got Elizabeth off to school, came home, and cleaned my kitchen. I walked in my room and saw I had a missed call and a voicemail from the Neurologists office on my cell phone. My heart totally stopped. With shaky fingers I called my voicemail. Our Neurologists Nurse Practitioner called to discuss the results of the biopsy so give her a call back. I HATE PHONE TAG. So I frantically call the office and tell the receptionist that I just missed a call from the NP and had to talk to her right then. Well, she was with a patient but would call when she was done. I'm such a total dork that I told the receptionist that I was going to sit there with my phone in hand and wait for the call...LOL...like she cared. The phone rings, the caller ID said Sutter Neuro...it was time!

The Results
The office nurse called me back as the NP was still busy and she didn't want me to wait any longer for the news...I guess the receptionist did tell them I was sitting there with my phone in hand...Love her!!! She starts going through all the mumble-jumble- over-my-head-medical-neurological-jargon that was in the report. I wanted to tell her so bad to just get to the damn point (sorry-I was totally stressed though). While I'm completely hanging on to each and every word she says (half of which was pointless because I did not comprehend) I hear her say: based on the tissue that was received from the biopsy there is no evidence of any type of Encephalitis in which the diagnosis of Rasmussen's in NEGATIVE. What, really, it's negative...no Rasmussen's...WOOHOO!! She then goes on to state that the abnormal tissue that was taken from the left side is a result of damage quite likely due to prolonged seizure activity. There is no underlying disease or illness that lead to the damage. Can you say that I did this crazy insane happy dance! Finally tears of joy!!!

The Follow-Up Appointment
We went into this appointment on cloud 9! Where ever the road will take us, it is much more brighter than the Rasmussen's road. Well, Neurologists have a way of taking the wind out of your sails. He pretty much has no idea what is wrong. He said that he is going to ask around (the country with other neurologists) to see what diagnoses are out there that resembles Rasmussen's but it is not that. In the mean time, he wants us to start the steroid injections to see how her seizures will react.

The Shots
I was really surprised how well Meghan tolerated the injections. We bought this cream called "Emla Cream" that we put on her leg 40 minutes before we give her the shot that numbs the surface and a few layers below. We keep the cream in place with these Tegaderm patches (expensive little things, but thanks to Ebay, I can get them cheap cheap cheap). The worst part of this process for Meghan is holding her to do the shot. In fact, when we are done with the shot, she sits down on the floor, looks at her leg and giggles. She also hates getting her blood pressure done. This has to be done on a daily basis and usually takes anywhere from 3 to 10 tries to get her to hold still. We have found that if you give her candy while doing this, she will tolerate it better. Probably not the healthiest for her, but for our sanity, it works :) Well, since we do the shots nightly, and the type of steroids they are, she needs to be seen every week by the Neurologist. Since starting the shots, her seizures have decreased to maybe 2 or 3 a day (from maybe 5 to 10 a day). Two weeks after starting the shots (9/7), he did another EEG. He wasn't impressed at all. However, over these last 2 weeks Meghan has engaged more socially with laughing. She will laugh at the T.V. and get really excited. This is new, but it is also appropriate for her age...so it is kinda like which came first, the Chicken or the Egg. So, by reporting this to our Neurologist, he is going to give the steroids 2 more weeks and do another EEG on 9/21. If at that time then he will pull the shots and think of something else to do.

1 full week of Steroids!

2 full weeks of Steroids

3 full weeks of Steroids


Family Matters
It has been an ongoing crazy roller coaster this past month in a half or so. It has been very stressful for Matt and I. My mom and his parents have been there faithfully which is a blessing and Elizabeth just goes with it. Having 3 weeks off was great, but I found it so hard to be a stay at home mom and really missed work actually. So the day to day routine is something such as: get up, get ready, get Elizabeth up and ready, drop her off at school, go to work, come home, dinner (if my mom doesn't do it - Thank you mom :)) homework with Elizabeth, shots, bath's, medication, and finally snuggle time on the couch. If I make it to bed without falling asleep on the couch, it is a huge accomplishment! Some day's go smoother than other's, and some day's just end up in tears...all around.

Like I have said before, this is not the life I had dreamt up. It does not fit with the plan that I had. Letting go of the HAD is the hardest part, but holding on to it hurts the most. I so envy every one's vacations, their happy healthy bounding children, there seemingly smooth life...ugh, I can go on...but it doesn't change my situation. And I know there are other situations way worse than mine and my heart goes out to them. What ever the future holds, I will absolutely do the best that I can, and try so hard to keep my head up and the thoughts positive. There will be tears, oh so many more, but all I can do is push forward.

I hope I can be half the mother as she is the daughter to me. I love her so!


**I really did not mean to get all emotional, but I guess I'm just on a down slope right now**

I will talk to you all soon...way sooner than last time I promise :)


Hugs to everyone!!!

God Won't Give Us More Than We Can Handle...Righ?

Two weeks ago we did some testing on her which ended up to be a 96 hour EEG, an MRI and a Spinal Tap. During the EEG she was having A LOT of Generalized Seizures. Her Neurologist came by to see us after about 24 hours of monitoring and totally changed her medications. The rest of the time went by very uneventful with a lot of Yo Gabba Gabba watching. Finally we reached the end of the 96 hours, they disconnected the EEG, and went on to have her MRI and Spinal Tap. After her MRI, the doctors wanted her stay on IV as she was pretty dehydrated from having to fast that morning. I had left Meghan and Matt at the hospital and headed off to Elizabeth's dance recital. At the end of the recital I got a text from Matt asking to call him when I got home. Call it motherly instincts but I knew right away something was wrong. He NEVER says to call when I get home. So I walk outside of the auditorium and give him a call. He said that neurologist called the MRI tech to see how it looked. The MRI tech reported that the MRI looked worse than the one she had 6 months ago. Our neurologist wanted us to see his partner the following week based on the results. I felt like I was totally punched in the stomach. All of us, including our Neurologist, expected to have no issues with the MRI.

Yesterday we went in for our appointment. Dr Chez is a fantastic Neurologist and one of two certified Epileptologists in CA. I completely trust him with everything I have. He pulled up the MRI that we had two weeks ago and compared it to the MRI from six months ago. The actual damage to the brain that she had on the left side was not worse, which is what we were thinking. However, she has this white hazing that is showing up on both sides of the brain hemispheres. Dr Chez stated that he seeked out two of the best Radiologists to review the MRI with him, one is from the Boston Children's Hospital. The three of them seem to think that what is showing up on the MRI is something called Rasmussen Syndrome. It is an Auto-Immune disease in which her immune system is basically fighting against her brain. WOW...not what we were expecting. Dr Chez informed us that Meghan's case is very complex in which it does resemble this Rasmussen Syndrome however her activity and development does not match what "should" be happening based on the MRI. Meghan is developing, growing and learning everyday. She is more dominant with her right side, and that is what goes against the MRI, as the left side of the brain is more "sick" than the right side.

The only way to confirm if it Rasmussen's is to have a Brain Biopsy. We have a referral in to meet with a Neuro-Surgeon to discuss the pros and cons of the biopsy. Matt and I are already pretty convinced that we are going to go forward with it as we want answers and we want to know what we are up against. Next week we will be starting her on a steroid regime where we will do daily injections of the steroids (pray for Matt as he has a tendency to pass out when he see's needles...LOL). Once we start that we will have to do weekly blood pressure and blood tests to make sure all is OK. Dr Chez said that after about four weeks he should be able to see if the steroids are helping or not. We may move forward at that time with some sort of IV med regime which would consist of Meghan having a port installed in her to regularly administer the meds by IV.

There was some good news that came out of yesterday though. Dr Chez wanted to do an in office EEG to see how her new medications are working. Her EEG actually does look better. So that is great news in that department.

It has felt that we have had nothing but bad news after bad news. This news really sent us reeling. We are holding to the fact that God has a plan and He know what He is doing. And He won't give us anymore than we can handle. He chose Matt and I to be Meghan's parents and I am forever grateful for that. It's not the news we wanted, but that darn smile on her face makes it ALL worth it.

Peaks and Valleys

Since Meghan has started getting seizures, it has been nothing but ups and downs. It has gotten better, she is definitely improving everyday over these past 17 months since her set back. But a part of me still feels really heartbroken at times.

I know that I should count my blessings and be thankful that she has a really good chance of outgrowing them. I know that I should be thankful that she is just delayed and not disabled. I know that I should be thankful that she won't remember everything that she has gone through. But yet I sit and cry at times. Why I ask myself...is it because she's not talking like her other 2 year old friends, is it because she doesn't know how to jump, or sing along to the "itsy bitsy spider" and do the hand movements, or that she is just about a year behind developmentally. I do know for a fact that she is HAPPY, she has FUN, and most of all she is LOVED and gives the best LOVE. Nothing else should matter but yet I find myself in these pity parties, looking at my friends children with a twinge of sadness because Meghan "can't do that" yet.

Even if Meghan will always be challenged with developmental delay's, I just need to grab on to her love and happiness because that is what truly matters. God trusted me with this precious gift. He chose ME to be her mommy and I will not let her down. I have a lot to learn from Meghan. Her strength and determination is amazing. She will teach me how to pull from that strength and rise above. Some days are harder than others.

OK...so my party of pity is over! I will stand up straight, hold my head high, grab my martini and power on through. Wish me luck!

My Daughters Eye's

Meghan is at the age right now when she knows that something is not right. It breaks my heart to look into her eyes when she is having a seizure. The fear and confusion in her eyes breaks my heart. If I could take away every pain and worry that she has, I would in a heartbeat. How do I help her?? How can I make life easier for my baby?? If only I could make everything better for her...isn't that what a mom is suppose to do?

Let's Meet!

Hi! I'm Kerri. I'm 34 years old living in Sacramento with my husband, also my best friend, Matt! We have two awesome daughters Elizabeth and Meghan. Elizabeth was born on October 22, 2004 and Meghan was born March 23, 2008 (Easter Sunday). Also living in my not so large house is my mom Sharyn and our 3 to 5 crazy cats (I will explain all this later).

Matt and I both work full time and cherish the time we actually get to spend together. We love summer!! Sacramento gets to be pretty hot so we take our boat out to the river (usually) to do some wakeboarding and tubing. So when the weather heats up...we are always on the water!

Elizabeth goes to Kindergarten. She loves it, I think for the sake of socializing! She is a great student and really tries hard in school. I'm so proud of her. I seriously have not met a more well mannered kid than her. I guess all the nagging I did when she was little worked out well! Elizabeth does both ballet and gymnastics. She is the stockiest ballerina I have ever seen but she loves it and I love watching her! Elizabeth also had tons of friends who are just awesome! Elizabeth started daycare when she was 5 months old and still is very good friends with those kids (even though we are all at different schools now).

Meghan, my sweet Meggers, where do I start! Meghan can light up a room when she toddles on in! She has also taught me so much about what is truly important in life. When Meghan was 6 months old, she started having seizures. All seemed good, and we plugged away at life keeping her as well as possible to avoid anymore seizures. Three months after her first seizure, she had a really bad one during the night. It was bad enough to cause damage to her left frontal lobe of the brain. She was 10 months old when this happened, and after that seizure she was developmentally set back to a 2 month old. Meghan still has seizures (Partial Complex and Generalized Clonic-Tonic) but are controlled pretty well with medication. We just try to not let her get sick. She still has some delays (especially with Speech) but she is in a Preschool daycare 3 days a week and also goes to toddler gym! She is my rock and I so admire her strength!

I plan on capturing the important, crazy, insane, fun and just down right stupid moments of our life on this blog...both past and future! I gotta say that I am pretty excited to do so. I hope that when the girls are older they can look back on this blog and enjoy it to.