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

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

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!

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!!!

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!