SEIZURES, SEIZURES & MORE SEIZURES!!!!!

This past week I took Emily to Albany Medical Center for a follow up appointment with her neurologist. He determined that the new medication he put her on (Lamictal) is making the seizures worse. Emmie is now having 20something seizures each day!! Over the next several weeks, we have to wean her off the Lamictal, then wait a week, then start a new medication called Depakene. I am really getting my education on meds! I forgot to add that Aidan had to go with us to the appointment because wouldn't you know it, on the same day as Emmie's appointment, Aidan didn't have to go to school. It was kindergarten screening day at his elementary school so kindergarteners didn't have to go. Lovely! :( I also forgot to add that Eric couldn't go to the appointment because he has only been back to work for 2 months & he didn't have enough time to take off. He used it when we all had the stomach bug. Great! :( So, Aidan & Emmie & I waited in the lobby, thankfully for a very short time. I remembered to bring our portable DVD player & a movie for Aidan. I even remembered headphones! I filled his bookbag with cars, trucks & snacks. Aidan was well behaved during the appointment. He was glued to "Tugger the Jeep", one of his favorite movies about an Army jeep that wants to fly. (Yes, we love vehicles in this house! :)) The doctor also wanted Emmie to get her blood drawn. She will need to do this periodically while she is on the Depakene to get her liver levels checked. After the appointment with the neurologist, I trekked down to the blood lab with Emmie & Aidan. I pushed Emmie in the stroller & Aidan followed, carrying the DVD player. Aidan was in awe of the nurses & all the paraphernalia. Emmie screamed her guts out as the nurse drew her blood. It was not easy for me to see her go through that, but we got through it. After the blood test, the three of us took a walk to the Dunkin' Donuts in the hospital. Mommy needed a latte!! Then we headed over to the gift shop so Aidan could pick out a new vehicle for being such a good boy. He always remembers where the gift shop is. It's kind of sad that he's been there that many times with his little sister. Aidan picked out a school bus & we were on our way. Our journey with Epilepsy has been long & frustrating. We are coming up to a year with Emmie's diagnosis. I feel like we have done everything we can with Emmie's current neurologist & it is time for a second opinion. I took Emmie to her pediatrician a few days ago & she is helping us start the process to go to Children's Hospital Boston. I have heard rave reviews from Emmie's therapists, the Epilepsy foundation & friends in the Down sydrome community.We have no idea how long it will take to get an appointment...weeks? months? Who knows. I am so excited just to get the process started. Roadtrip! Boston, here we come!! Time to get Aidan ready for swimming lessons. He'll go to lessons & Emmie will get therapy in the daycare. Aidan will shower & get in his jammies after lessons, we'll pick up a Happy Meal on the way home, then bedtime for everyone!! I am such a multi-tasker!! :)

EMMIE'S SCHEDULE...OYE!!!!

A few months ago, Emmie's Early Intervention team (me, her therapists & Service Coordinator) met for Emmie's Individual Family Service (IFSP) Plan Meeting. These meetings occur every 6 months while Emmie is in Early Intervention. The purpose of these meetings is to discuss Emmie's progress & to propose new goals for her to work towards. At the meeting, I decided to increase Emmie's services. I want to give her every ounce of help I can. As of now, Emmie's therapy schedule is as follows:
Speech: 2x/wk

Special Ed.: 3x/wk

Physical Therapy: 3x/wk

Occupational Therapy: 2x/wk

That's a total of 10x/wk!!! We took off our front door & have installed a revolving door. :) There are days when one therapist is coming & another is going!! :) It is a crazy schedule & alot to keep track of, but it's all for Emmie & I know it's the best for her. With all of the therapies, dr. appointments, phone calls, etc., Mommy could use a secretary & an assistant! :) At first, the thought of so much therapy, made my head spin, but now I've gotten used to it & it is working really well. Emmie's therapists are wonderful & have become part of our family.

Emmie's therapy sessions last from 30-60 minutes, as much as she can handle. We are seeing some progress, but she has definitely regressed in some areas since the seizures began. Emmie can stand & take a few steps with assistance, but she is not ready to walk on her own yet. She does not talk. We get some sounds here & there, but no real communication. I know I need to be more consistent with signing. I'll add that to my to-do list! I know in time, Emmie will start accomplishing more, but at times I find myself getting impatient. I want her to walk now! I want her to talk now! I want that connection with her now! I play those moments in my head over & over sometimes...how it will feel when she takes those first steps towards me, when she looks at me & says, "Mama". What a sweet day that will be!!! Until then, we wait.

Emmie is in her crib right now & is supposed to be napping. I hear her tapping her empty bottle against the crib. I am afraid she is starting to ditch her naps. They are hit & miss these days. Not sure if it's from her medication or maybe she's outgrowing them. I hope not!!

Earlier today, one of the aides in Aidan's classroom sent me a picture (on my phone) of him eating his lunch. He was enjoying a cupcake that I sent in his lunchbox. It was part of the batch I made yesterday for World Down Syndrome Day....3/21. I decorated them blue & yellow (the colors for Down Syndrome Awareness). We brought some down to the Down Syndrome Aim High Resource Center & shared them with our friends there. It was a day to celebrate our little girl & the something "extra" she has given us. Love you, Emmie. XOXO

Gotta run. I think Emmie just threw her bottle out of the crib. I think she's trying to tell me something. :)

GOOD READING!

In my "spare" time, I am reading 2 wonderful books that are really helpful & informative. I am laughing as I type this because if you know me, you know I DON'T READ!! My ADD kicks in & I just can't do it. I enjoy browsing through Pottery Barn & Land of Nod magazines, but this Mommy doesn't do books!! These are grabbing my attention & I look forward to a little reading time every night.

Shut Up About Your Perfect Kid: A Survival Guide for Ordinary Parents of Special Children
by Gina Gallagher & Patricia Konjoian

Married with Special-Needs Children: A Couple's Guide to Keep Connected
by Laura Marshak & Fram Prezant

Just wanted to pass this info. along. Hope it helps someone!

WHERE HAVE I BEEN?!?!

I'm here!! I'm here! I feel awful that I haven't posted an entry since.....I can't even remember when! Life has been busy (that's an understatement) & part of me has been in & out of a funk. Life with 2 special needs children & a deployment will do that to a person. There were many days when talking about it or writing about it made it worse & all that mattered was getting through the day. I have learned to accept those days as part of the process. It comes & goes & it's OK. What's important is...I'M BACK!!!



Eric returned safe & sound from the deployment in early December. We have been adjusting to family life again. It was wonderful to be together for the holidays. The kids are loving the time with Daddy...snuggling & playing. I think many people have the idea that life is back to "normal" (I hate that word!) around here & my husband is back so life is great! It is, but we are in transition mode & we are taking it one day at a time. I need to remind myself that my husband was in a war zone for a year...sometimes I felt like I was in one too! :) We'll get there, one day at a time....



Emily is still struggling with seizures, she is on 3 medications daily & gets medicine 6 times/day. She recently stayed over night in the Epilepsy Monitoring Unit at Albany Medical Center & the neurologist was able to officially diagnose her seizure disorder....Atonic Seizures or Drop Seizures. These seizures consist of a brief lapse in muscle tone that are caused by temporary alterations in brain function. Emily drops her head really hard & strong, sometimes falling over.

The seizures are brief, only lasting about 15 seconds. The seizures itself do not cause damage, but the loss of muscle control can result in injury because of falling/hitting her head. This has happened to Emily numerous times. We are in the process of getting her a helmet to protect her head. That was not an easy step for me. Ugh! We already get the stares because our daughter has Down syndrome. Let's add a helmet to the mix!!! Oye! I'll do whatever I need to do for Emily.



We are also getting her an adaptive stroller...like a wheelchair, but it looks more like a stroller. This will give Emily a lot more needed support. I am acutally getting excited about the stroller. We are waiting for approval from the insurance companies. We should have it in a few weeks. We ordered a pink one & that makes me happy. :)



Aidan is doing great in kindergarten! The year is flying by & I feel so blessed to be home & be able to share in so much of his first year of school. He just completed an art project with Daddy over the weekend. They made bongo drums for an Art Museum that his school is having. Very sweet!!



I hear Emily playing with a squeaky toy in the playroom. She is saying, "Da da da" in a sweet, soft voice. I don't get many sounds from my little girl, but when I do, the world stops for a moment so I can take it all in.



I promise not to be so absent from the blog. Also, the pictures on the blog are very outdated & I am clueless about how to update them. Like I always say...it's about the words.



I'm about to make another entry.....See, I told you I was back!! :)

THE LONG ROAD

It's been several months since Emmie started having seizures. She has been on 2 medicatons....Zonisamide & Clonazepam. Emmie started out having 10-15 seizures/day, then she dropped down to 6-7/day. After several adjustments, increasing the dosage & changing the times the meds were administered, we finally hit 0!!!! I think the angels in heaven sang for a few days. :)

After we reached the "sweet spot" (that's what I call it), the neurologist wanted to leave the meds & the dosage right at that point. Emmie's med schedule was as follows:

• 6:00am...2 wafers Clonazepam..these wafters dissolve in Emmie's mouth
• 6:30am...1 capsule Zonisamide...the capsule is opened & poured into a juice bottle
• 9:30am...1/2 Clonazepam wafer
• 2:00pm...1/2 Clonazepam wafer
• 5:00pm...2 capsules Zonisamide

Whew! That is 5 times/day!! How do I remember all of that, you might ask? Well, it's become routine & I have a very good memory. Plus, when it comes to my kids, it's hard to forget something so important. The hardest thing is remembering to bring the medication with us when we leave the house. I can't tell you how many times we have been several miles away from the house & I have to turn around & come back to get the meds...frustrating!!

About a week ago, the angels stopped singing. Emmie started having seizures again...4/5 times/day. The dr. said this could happen as the Clonazepam can have a "honeymoon" period. It's different for every child, so it's hard to say how long that period will last or with some children when they hit the "sweet spot", that's all they need. That's the hardest part...not knowing. I want to know how this will all turn out. When will the seizures stop? Will Emmie need meds forever? Will she outgrow the seizures? Unfortunately, it doesn't work that way. There is no way of knowing. We just have to let it play out & roll with it....the story of my life these days!!

I spoke with the dr. a few days ago & he increased the Zonisamide. Now, at 6:30am, Emmie gets 1 1/2 capsules. Every time we do an increase, I get sick to my stomach. I hate putting all this medication into her little body. I know it's helping her, but it's not easy for me. We just started the increase today. I pray it will get the seizures under control again.

Emmie has a follow up appointment with the neurologist in a few weeks. Aidan is at school & Emmie is napping. Time to get a few things done while I can.

MOMMY CONTINUES HER EDUCATION

After all that has gone on in my life thus far, I feel like I have earned much more than my Bachelor's & Master's degrees combined! My real education started after I had children. I want to share some information on Epilepsy with all of you. I feel it is important to know what Epilepsy is & what Emily might be experiencing when she has a seizure. With both of my children, I have committed myself to educating myself on their needs as well as the people around them. I've learned so much about reading an EEG, Infantile Spasms, MRIs, medication, synapses, the list goes on & on. I really don't need to learn anymore vocabulary words, please. UGH!

Epilepsy is a general term used for a group of disorders that cause disturbances in electrical signaling in the brain. Like an office building or a computer, the brain is a highly complex electrical system, powered by roughly 80 pulses of energy per second. These pulses move back and forth between nerve cells to produce thoughts, feelings, and memories.

An epileptic seizure occurs when these energy pulses come much more rapidly-as many as 500 per second for a short time-due to an electrical abnormality in the brain. This brief electrical surge can happen in just a small area of the brain, or it can affect the whole brain. Depending on the part of the brain that is affected, the surge of electrical energy can cause: changes in a person's sensations or state of consciousness or uncontrolled movements of certain parts of the body or of the whole body.

Epilepsy is also known as a seizure disorder because the tendency is to have recurrent seizures.Epileptic seizures vary in severity and frequency, and even in the time of day they occur.While some people may experience no more than two or three seizures during their entire lifetime, others will have several seizures in one day.

EMMIE'S SEIZURES: Emily has approximately 10 seizures/day...visible ones anyway. I am starting to see a pattern of several seizures in the morning, very few in the afternoon/evening. Lack of sleep or interrupted sleep will cause Emmie to have more seizures. During a seizure, she jerks her head & arms abruptly...up to 5 or 6 times in a row. That is considered 1 event, or 1 seizure. The events are fairly short, lasting about 5 seconds or so. If she ever has a seizure that lasts 5 minutes, I have emergency medication to give her. It's been an adjustment for me to remember to carry her meds on me all the time. We went camping last week & I forgot them. That was stressful!

Emily can have a seizure at any time: sitting, playing, eating, when I'm holding her or when she's in her highchair or the bathtub. Once in a while she loses her balance. It is possible that Emily could outgrow her seizures, but only time will tell. My wish for Emmie is that her seizures completely stop NOW & that her development will not be affected anymore than it already has.

The kids are in bed. Time for me to hit the couch, break out the ice cream & watch

So You Think You Can Dance!

17 days til Eric comes home for his 2 week leave!! WOOHOO!! :)

CATCHING UP

FYI...These last few entires are about what has been going on the past few months. I am trying to get caught up to where we are now. Bear with me.