- 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
Thursday, July 22, 2010
THE LONG ROAD
Wednesday, July 14, 2010
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!
Tuesday, July 13, 2010
CATCHING UP
ANOTHER DIAGNOSIS?!?!
Sunday, July 11, 2010
SOMETHING ISN'T RIGHT
Sunday, July 4, 2010
HAPPY 4TH OF JULY!
Today I took Aidan & Emmie to the parade with my sister & 2 nephews. It's become tradition for the Lautenschlager's to go to a parade for every holiday. :) We had a good time. The kids waved their flags & Aidan was mesmerized by the firetrucks & police cars. As always, I stood with pride. I am proud of my husband for his service to our country. I am also proud of my grandfathers & their service. I am proud of all of the men & women that have served & are currently serving our country. I am proud of this great country we live in. I am proud to be an American!!
Today is also our Anniversary. 6 years & still going strong!! I always say that Eric & I have lived through more in 6 years than most people have during their entire marriage. During these 6 years, I have spent more than 2 years without my husband (counting deployments & military duty time). On this day it is especially hard for me. It's hard to be alone. I talked to Eric earlier today. It was so good to hear his voice. It's been 2 weeks since I've talked to him. We are all getting anxious for him to come home for his 2 week leave at the beginning of August. As we get closer to the date, I start to feel like a girl in high school waiting to go on a date with her boyfriend. :)
July 4 is a special day for our family. Of course, it is special to us because we are a military family & we honor our country. It's also the day that we celebrate our marriage & the beginning of our little family. I miss Eric & I am feeling a little sad, but it's OK. We are still husband & wife & a family. I am so proud of us & our family.
HAVE A SAFE & HAPPY 4TH OF JULY!!
Saturday, July 3, 2010
TIME TO CATCH UP...EMMIE TURNS ONE
So much has been going on. I've decided to divide it into several different entries for easier reading. Enjoy!
Emmie is now 15 months old!! She turned 1 on Easter. It was a very special day. I felt so much on that day. I was so happy & excited for my girl's special day. I felt proud to have her as my daughter, proud of what she had accomplished & how far we had come as a family. The days leading up to Emmie's birthday were difficult for me. I found myself replaying her birth in my mind, Eric missing Emmie's birth, learning about her diagnosis, the anger, disappointment, sadness...it was hard to escape it. I missed Eric like crazy & I felt sad for Emmie that her Daddy wasn't there to celebrate.
We had a party for Emmie with lots of family & friends. It was a great day! Emmie wore a pink & white party dress with butterflies on it. She looked so sweet!! My mom gave Emmie a very special gift for her birthday. Years ago, my Grandma Joan (my mom's mother) gave me a story called, "Lacey's Pink Party Dress". I think her mother or grandmother passed it down to her. It is the story of a pink party dress that comes to life with the other clothes in the closet. The party dress wants Lacey to choose it to wear to a birthday party. It's very cute & over years it has changed. Grandma Joan personalized it for me. It is so special to me. My mom lost it over the years, but recently found it. She gave it to Emmie on her birthday. Having that connection with the women in our family is a special gift. I can't wait to tell Emmie the story when she gets older.
Emmie loved her cake & playing with her little friends. It's hard to believe she is 1 year old. It's been an amazing journey filled with so many emotions. I am grateful for each & every moment with my girl...Emily Grace, Emmie, Emmie Gracie Girl (as her brother calls her), my Lovie. I am excited to share the rest of the journey with Eric, Aidan, Emmie & all of you.
Who knows where it will take us?
MORE TO COME!!
Wednesday, February 24, 2010
NASCAR & DOWN SYNDROME AWARENESS
Please support this design!! You can vote once a day for the next 4 days. Just click on the link below & then cick to vote for the design.
http://www.sponsafier.com/share/5931
Wouldn't it be so cool to see this car racing around the track!?!?!?! :)
Monday, February 22, 2010
MY OPINION
If you are about to use the "R" word, or some other offensive language, STOP & THINK about my children & other people's children. I know you don't mean any harm, but try to use another word & make a change. That's where it all starts.
Tuesday, February 16, 2010
THE "R' WORD
"I would ask the president to show decency... by eliminating one member of [his] inner circle, Mr. Rahm Emanuel, and not allow Rahm's continued indecent tactics to cloud efforts" to debate important issues, she wrote. The post was titled: "Are You Capable of Decency, Rahm Emanuel?"
She called out the White House for ignoring the incident while groups like the National Down Syndrome Society have condemned the remark. The White House has said Emanuel has apologized for the remark and has called the head of the Special Olympics to apologize, Politico reports.
"The White House remains committed to addressing the concerns and needs of Americans living with disabilities and recognizes that derogatory remarks demean us all," a White House official told Politico.
Nevertheless, Palin compared the remark to racist language. "Just as we'd be appalled if any public figure of Rahm's stature ever used the 'N-word' or other such inappropriate language, Rahm's slur on all God's children with cognitive and developmental disabilities – and the people who love them – is unacceptable, and it's heartbreaking," Palin wrote.
Thursday, February 11, 2010
EMMIE IS SICK!! :(
Thursday, January 28, 2010
QUICK UPDATE
Thursday, January 21, 2010
HELP DOWN SYNDROME AIM HIGH RESOURCE CENTER WIN $5,000...IT'S EASY!!!!
How to vote:
---Go to: http://www.berkshirebank.com/join_the_excitement
---Under the Community Giving! section (bottom right) click "Help Us Give Away $20,000"
---Click on "Vote Here"
---In the "Orgnization" box, type Down Syndrome Aim High (there are too many letters for the full name)
---Address is: 1 Marcus Blvd., Suite 105, Albany, NY 12205
---Fill out your information & Click Vote!
*Voting ends January 31, 2010
*Please help Aim High win this money. They have been so good to our family. Thank you for your support.
Saturday, January 16, 2010
EMMIE'S 9 MONTH CHECK UP
Emmie now weighs 17lbs, 11.5oz & is 27 inches long. She is still being charted on a regular growth chart instead of a Down syndrome growth chart. Emmie is perfectly healthy!!! She is doing really well with eating solids. She is mostly on Stage 2 foods & slowly progressing to Stage3. I try to give her table foods when I can. She is like her Mommy & loves eat!
At her appointment, Emily was also tested for anemia. Her numbers were great & she is not anemic. Emmie also got her polio vaccine & her second dose of the H1N1 vaccine (preservative free). She was very brave & barely cried. She will go back to the dr. for her 1 year checkup.
Any American Idol fans out there? Contestant Maddie Curtis from Virginia spoke about her 4 brothers with Down syndrome. She is the ninth of twelve children. Her biological brother has Down syndrome & her parents adopted 3 other boys with Down syndrome. It was so touching to hear her talk about her brothers. "I think some people are a little skeptical of Down syndrome. These 4 boys bring out the best in every person they meet. They see the world in colors. We need to see the world that way."
Enough said.....
Wednesday, January 13, 2010
BACK ON TRACK!
I had the swine flu over Thanksgiving....NOT FUN!!! I don't wish that on anyone!! It was awful. Thankfully, Eric was home & we were with my parents, so I had a lot of help. Pappy (my stepfather) & I had it at the same time. We both felt like we were dying!!!! So glad that is over!!
Eric came home for 4 days at Christmas & it was wonderful to be a family! Aidan's most favorite present from Santa was a recycling truck & some "emergency vehicles". (I think Aidan is going to be a firefighter when he grows up.) Aidan bought Emmie a pink school bus for Christmas & she loves it. The bus is for an 18 month old, but Aidan had his mind made up.
Eric is back in Seattle training & getting ready to go overseas. We don't have a definite date yet, but he should be leaving in the next week or 2. We talk every day or every few days. I miss him terribly & I feel like half of my soul is gone. Saying goodbye after Christmas was awful. So mch happiness & then so much sadness. It is very difficult, but I am taking one day at a time, focusing on the positve & enjoying my time with the kids. I am going to start putting packages together for Eric. I am sure Aidan will love doing that with me. Once Eric is set up overseas, we will start doing the webcam too.
My friend Julie has been kind enough to organize meals for me..."Meals on Wheels!" She got together with a few of her friends & they have been dropping off food every week. I am so appreciative of this gesture. It is wonderful not to have to worry about what I am going to eat for dinner. It is so important for me to sit down with Aidan at night & have a meal together. We both need that.
We recently had Emmie's Early Intervention IFSP (Individual Family Service Plan) meeting. Basically, every 6 months the team (me, Early Intervention Service Coordinator, Emmie's therapists) meets to check on Emmie's progress & make any changes to her goals/therapy. I decided to increase a few things. Emmie will now get Speech 1x/wk, PT 2x/wk, Special Education 1x/wk & OT 1x/wk. This is ALOT, but I feel it is important. I want to give Emmie everything I can to help her succeed. I also feel because I am home with Emmie, I want to have as much "hands on" time with her therapists. I want to learn as much as I can so I can integrate more into her day. Emmie is now sitting up on her own, reaching up over hear head, tries to clap her hands. She has 2 teeth & I can see the 3rd one coming. My sweet little Emmie Grace...she is the best!!!
I took Aidan to the pediatric opthamologist the other day. Eric & I have been noticing his left eye turning in. Aidan is severely farsighted & because he is trying so hard to focus, his eye is turning in. I must say, after hearing that, I felt like I was kicked in the gut! I know it's only glasses, he is healthy & it is so minor. After everything we have been through: Aidan's special needs, Emmie's diagnosis, the deployment, dr. appointments, meetings....NOW THIS! It doesn't seem to end. Aidan may need a patch or eye drops to help correct the eye, but we are not sure yet. He will go back in 2 months for follow up. I took him to pick out his glasses yesterday & he did great! He wanted blue ones, so that's what he got. He was so patient while the optician measured his eyes & fitted him for the glasses. We had to order them because the prescription is so strong. We should have them next week.
So, that's a brief summary of what the Lautenschlagers have been up to!!! I don't want to overload you. I am happy to be back. I am going to make an effort to keep up with my blog. It's hard to keep up. I hope you will all continue to read the blog, make comments, keep us in your prayers. Thank you for sharing in our life!!!