The fight for answers resumes...

I've just about had it! Seizures are back in full swing just as if we never tried any other measures to control them. We've been trying various amounts and types of medical cannabis since late December to no avail. Last week Izabelle pretty much went into status for three days. Diastat and Adivan failed to stop them quickly. We were told to up pharmaceutical meds again by our neurologist. We have noticed that Izabelle has been coming down with low grade fevers consistently for weeks. We had every test in the book done to rule out infection. No infections or anything irregular about her bloodwork or urine analysis. 

Today we visited Dr. Smith for a Genetics consult. The day started out with a grand mal at home. Izabelle had a second grand mal in the car on the way there. I had to administer diastat on the side of the highway. It was another first for me. I left her unconscious in the back seat and continued driving her to the appointment. I had already called the neuro office and knew that if anything else happened that we would be in good hands. When I arrived, I called the doctors office and asked for a wheel chair to transport Izabelle inside. 

She slept through most of the appointment. Dr. Smith will be looking at Izabelle's chromosomes and DNA more closely. I may also go through with some testing myself. I'm also relieved that Dr. Smith will also be doing a whole metabolic panel as well. Not one doctor has recommended this and I hope we learn something! I have also requested another MRI and may be doing some spinal fluid testing for neurotransmitters in the future.  Tomorrow we go see a neurosurgeon regarding the VNS implant. I hope it's an easier day of traveling. 

Epilepsy Awareness Day

Thursday was Epilepsy Awareness Day! 

Our family made sure to wear purple! Did you?

I'm not alone!

Over the past two weeks Izabelle has been predicting her own seizures. Some are false alarms, some are lightning fast complex partials and a few times Izabelle notified me just in time to catch her as she went into a grand mal. Yesterday, Izabelle had 18 moments when she thought she was going to have a seizure during the day. As we were getting ready for bed and picking out pajamas, Izabelle bolted in front of me, stood and stared at me and said abruptly, "I'm going to have a seizure!" I yelled to her father to come right away because I could see that this time it was going to be a big one. Dale ran toward us, stood behind Izabelle and assumed such a rehearsed position of locking his arms under Izabelle's to hold her up until she goes limp enough to fall or be lowered to the ground. We both sat with her on the carpeted floor as her entire body jerked over and over again rhythmically...eyes dilated and sunk in. I always brush my hands across Izabelle's face, hold her hands and wait for the calm. Dale stayed with us the whole time.  This one knocked her out. It was like her brain had been saving abnormal electrical bursts for that moment in time. She was so drained. We put her to bed early. 

I thought we had made it through the storm. I thought that we had ended our pattern of threes... But bam at 2am there was another... At four another... I ran for the diastat. Dale positioned our little girl and I administered it like a pro. No hesitation at all. After she was settled, I laid down in bed, snuggled close to my life partner, my heart was racing, my nerves leaving me restless... I woke up and felt dead and broken... I can't believe I lived like that for months in the fall...

Truly parenting medically fragile children takes a toll on the caregivers body and mind. It made me into an insomniac and culminated into full blown PTSD. I'm working on taking better care of myself. I went to work a bit late. I'm going to bed early tonight. I'm so glad I'm not alone now. This was meant to be. Thank God she helped bring us back together. I've got the best partner in the world to help me raise and fight for this beautiful child! 

Our spirited child :)

This spirited child doesn't let seizures hold her back!

She is silly and oh so funny!

She is theatrical and creative!

She is mischievous!

She is loving and compassionate! 

She is an athlete!

She is a beautiful gift!

She is musical just like her parents!

And.. She is bad-ass! 

Letter to Senator Johnson

Hello Senator Johnson, 

We have met through RSU 12, as I am the GT coordinator and teacher there. 

In addition, I am raising a disabled seven year old child with refractory epilepsy. It is my intention to speak with or write a letter to a Maine senator or house representative regarding Maine's failing healthcare system and it's negative affect on working families. I, along with many other hard working Mainers have been faced daily with the decision of wether to continue working or stay home and take care of our disabled children. Our family has been promised up to 24 hours of in home nursing from the Department of Human Services. We have been fighting for a year to find someone. This is not only due to a dysfunctional health care system, but also to a possible pediatric nursing shortage. I am amazed at what disabled adults in this state are getting for behavioral and medical services meanwhile, funding for disabled children are being cut. Please let me know what I can do to be an advocate for other families like ours in the beautiful state of Maine. 

Thanks for your time, 

Sincerely, Rachel S. Hamlin

I'm not just mad, I'M PISSED OFF!!!

I am fed up with DHHS, I'm fed up with nursing companies, I'm fed up with private companies that have stopped offering pediatric services because of lack of FUNDING (yea, including MOBIUS, down the street)! I'm fed up with being told that there isn't a soul to service my child within any agency in Maine. I'm sick of hearing NO!

We have had Mainecare since April of 2014. Sequel Care of Maine and Maxim health have been looking for a nurse for Izabelle since then. Not only do they publish our need within their company, but they also send it out to every single nursing company within the state.

I called Kristine Bennett from the Epilepsy Foundation of New England two days ago to see if she had any other ideas for in home care. She called the state on my behalf...

I heard from them today. It is clear that the DHHS and private companies are NOT on the same page. Every piece of info the state worker gave me on the phone was either conflicting with what I already knew or related to something I have done over and over again.

What am I supposed to do?

Knock down the door of every freaking nursing company in Maine?

What's the point, when they have already gotten a message that we have needed someone since last year and not sent anyone our way? PLUS... I found out today that the state doesn't even recommend leaving pediatric patients alone with RN's... What the hell!!!

It also turns out that Izabelle's most recent medical eval is 6 months old. She was doing better six months ago... now were are up to 6-7 GRAND MALS a week... her condition has worsened.  I have a letter from her neuro to prove it but... agencies won't re-evaluate Izabelle unless they have a nurse waiting to take our case. Kristine Bennett from the Epilepsy Foundation of New England said herself that there is a NURSING SHORTAGE in Maine.

The most frustrating thing is that I know first hand how much our state does for disabled adults...

shame on them for not even doing half of it for children!

It's just sad...

Of course I thought we would have a 'normal' morning: I'd get ready to go to work, get Izabelle ready for school, bring her to her aunts for before care and get to work on time... 

Umm...Nope.

Yea, RIGHT!!! 

This time I got Izabelle dressed for school and just as I was going to instruct her to put her backpack on... 

BAM!!! Grand Mal seizure! 

I've had so much pressure recently at work regarding my attendance... I've used all my sick time and from now on, time off is unpaid. 

Dale and I worked out a system. He will work part-time until the summer so he can be present most days of the work week so I can be present even if there is seizure activity. Now I know I will always make it through Monday, Thursday and Friday at work. Tuesdays and Wednesdays we are both working.

Because of all this pressure to be at work on time and keep good attendance...I had to leave Izabelle's side during her postictal period this time.

I literally left her laying passed out cold on the floor on top of my school bags: 

I felt awful. Like a traitor. 

All I did was get my coat on, grab meds and finish packing my school bag...but it felt unnatural and wrong not to be able to wait for my child to come back to me from the unknown. 

I like to hold her and cradle her like a tiny babe when she's recovering from a seizure. 

I hold her... hold her until she can mutter just one word to let me know:

she's back. 

But today... I didn't have that luxury.

I woke my daughter as much as possible, out of her deep 'sleep' and somehow... Was able to get my kid downstairs and out the door. 

She could barely stand. 

I saw my neighbor as I used a safety grip under Izabelle's arms to guide her to the car... 

It was just all wrong! 

Every bit of this feels like I'm going against my maternal instincts.

I cried on and off throughout the day...

I've realized that I'm afraid...

That each seizure takes a little bit of my daughter away...

And I may never get who 

she 

once

was 

back.