Life's WHAM'S

Life is a funny little thing at times. You can just mosey on through life and then ...WHAM...you are hit upside the head with something! As kids I think the WHAM was being grounded or having to live by your parents rules...hence why we all couldn't wait to grow up. As adults though...the WHAM'S are too numerous to list and we are left doing the mental (or really) head slap questioning why we ever wanted to grow up! I chuckle at this then catch myself turning around and telling Elizabeth (sounding just like my mom) growing up is not all the glory you think it is.

So at this point Christmas is a mere 33 days away. The ending of another year...phew. BUT this year was so very different for me. This year has changed me as a person, touching and moving the very being that I am, more than any other year or even decade for that matter.

Christmas can either be the most joyous time of year or stressful time. In simple terms, my Christmas's have evolved as follows:

Kid Years: oh my gosh, do I have the most presents under the tree...I truly hope so (sorry sis's)
Teenage Years: I wonder how much my friends are spending on me so I know how much to spend on them...and hopefully I have some darn good presents under the tree.
College Years: friends, don't buy me anything cuz I can't buy you anything. Mom...I really need this and that.
Married With A Double Income Years: I am going to buy the most awesome presents for everyone! This is so frykn awesome!!!
Married With A Double Income and Children Years: oh my...am I still paying for last Christmas. Family and friends, don't buy us anything we can't afford to exchange. BUT...the stress of the making sure the girls have the latest and greatest thing!

So you see I had lost track of the true meaning of Christmas and fell into the trap of the Holiday being solely material. I mean how can we be happy if we don't have the best of the best. I'm a Christian and fell into that horrible trap where I dread the greatest Holiday ever!!! So, as Christmas has been quickly approaching my anxiety level has been out of control. After all our expenses have been crazy this year (new roof, gutters, outside house paint) so I have been seeing what income is going to come in going forward and what money I can pull from each paycheck from now until Christmas.

Well thank you God for the simple conversation I had with a 7 year old that truly WHAMMED me in the face. Elizabeth became friends with a girl (she is 7) last year in Kindergarten who actually lives just down the street. They had moved in about 5 years ago but we never met them. Starting this last March, Elizabeth and her friend have been playing together regularly. We have gotten to know who her parents are and truly have built a friendship with them. The nicest family EVER! What is awesome is that they are a family of 5 living on one income. The mom stays home and cares for the kids (13, 7, and 5) and the house! You seriously cannot find a family that has a bigger heart than them. Elizabeth's friend is ALWAYS grateful for everything! If you do the simplest thing for her she always smiles and it is always accompanied by a big thank you and a huge hug. So not like Elizabeth. I'm so sad to say that Elizabeth is easily one of the most ungrateful kids I know when it comes to materialistic things. I don't blame her for this...I blame us!

So back to the conversation with Elizabeth's friend, I asked her what "Santa" brought her for Christmas last year. With the biggest smile EVER...she said that he brought her the new Tinker Bell movie. I sat there waiting for more...and Elizabeth bluntly said...that's it!!! WHAM...hello what have I created in Elizabeth??!! Here is a child that got a movie from "Santa" who was and still is extremely excited...and here was MY child who couldn't believe that "Santa" only brought her that. I have honestly gone wrong over these years. I have built everything around the material things in life.

So with some sole searching, Christmas isn't going to be what it has always been. It's not the amount of presents or how much you have spent. It's about truly understanding the meaning of Christmas and holding on and loving each of your loved ones. In less than a week I have gone from being completely stressed about Christmas to so very excited. Sure, Elizabeth and Meghan will have presents under the tree and deliveries from "Santa"...but it won't be like the past years. That is not what Christmas is about!

I have always been a strong independent person in life. I guess you can also throw in stubborn. But this past year I have had some amazing life changing moments. These life changing moments have not been from amazing speakers, sophisticated family members, or anyone of that nature. They solely have come from an amazing 3-month old angel Grace (and her parents) who I never had the honor of meeting, my amazing 2 year old Meghan, and the conversation of Elizabeth's 7 year old friend. WOW...I have years and years on them, but they have the heart and soul on me. Thank you to you three. You have made me more of a person than I ever was in my 34 years.

This Thanksgiving and Christmas, stop and think who has touched your lives and give thanks and love to them. Sometimes the people you least expect to truly change your life are the ones that will EVER make the biggest impact.

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