WHO WE ARE IS YOU!!

Recently, the kids & I participated in a video at the Down Syndrome Aim High Resource Center. We had so much fun & the end result is sweet & inspiring!!

Click the link below. You will need to click on the video to play it.

http://www.vimeo.com/channels/keniscope

ANOTHER BIRTHDAY GIFT!!

Yesterday, on Emmie's birthday, I got a call from a receptionist at Children's Hospital Boston. We got approval from our insurance company to take Emmie to see the neurologist there. In that moment, the angels were singing!! :) The phone call couldn't have come on a better day. :) We got an appointment for next week! . I was surprised since I thought it might take us weeks to get an appointment. I have spent the day talking to people at the hospital regarding insurance information, Emmie's records, etc. I headed down to Albany Medical Center to get copies of the discs of Emmie's EEGs & MRI. I have been told that the dr. in Boston may want to redo the tests, but she will need to examine the ones that were already done. We have decided to take Aidan with us. We are going to head to Boston the day before Emmie's appointment & do something fun...Children's Museum or Aquarium. Eric will take care of Aidan while I take Emmie to the appoinment the next day. I was able to get us a room at a hotel right next to the hospital. I didn't want to worry about traffc & getting to her appointment on time. We can walk to the hospital from the hotel. Aidan loves traveling & hotels, busses & trains. He is going to have so much fun!! I am very excited about our trip & I am feeling very hopeful. Maybe, just maybe this dr. will be able to help Emmie. My little girl has been through so much & I am ready for all of this to be over. It has been a long road & it may continue to be long, but somehow I am finding the strength to be optimistic. It has been stressful & exhausting for all of us. Some days I feel like the life has been sucked out of me. I hate seeing Emmie on all this medication, having seizures, falling, bumping her head....Maybe we'll get the answers we've been looking for. Time to get Aidan off the bus!! It's a rainy day here & he was so happy to wear his fireman raincoat & rainboots. That's my boy!! :)

2 YEAR CHECK UP

Emmie had her 2 year check up today. She got her polio & rubella vaccines & also had to get a blood test. She gets a blood test every year to check her thyroid level.s Thyroid problems can be very common in children with Down syndrome, typically it's hypothyroidism.

The pediatrician updated us on the situation with Children's Hospital Boston. We should be getting approval from our insurance company either today or tomorrow. The pediatrician's office already sent Emmie's file to Boston. I have to call Emmie's neurologist & get her discs sent of her EEGs & MRI...any testing that was done. The neurologist in Boston may decide to redo all of the testing, depending on what they see on Albany's images. It doesn't sound like the wait is too long for an appointment in Boston, just a few weeks!! I AM BEYOND EXCITED!!! I also found out that through Medicaid we can get reimbursement for travel, lodging & food. What a help that will be!! I am grateful.

Emmie has had a cold on & off for almost a month now, chest & nasal congestion. Her immunity is low & when she gets sick she takes a long time to get well. The pediatrician is treating her for a sinus infection, so she is starting antibiotics today. Great! Now, she will probably have diarrhea & get a yeast infection. We've been down this road before. I hate giving her more medicine, but we need to get rid of this nasty sinus infection. The humidifier & nasal saline drops are not helping.

I am grateful for Emmie's pediatrician & all of the resources that are available to Emmie & our family.......Aim High, the Epilepsy Foundation, Medicaid, Northeast Mobility(where we are getting Emmie's adaptive stroller & helmet), Emmie's Early Intervention Service Coordinator & Therapists....the list goes on & on!! Most of all, I am grateful for a happy, healthy, beautiful girl!!

SWEET PEA EMILY

Aidan & I have discovered a new song we like to sing to Emmie....

"There's a girl, a girl, next to me. She's sitting 2 chairs down. She's cute. As cute as can be & sweet. As sweet as a pea. As sweet as a pea can be. Sweet pea, Emily!!! :)"

That's our girl!!! :)

HAPPY BIRTHDAY TO EMMIE!!

Emmie turns 2 today!! Early this morning, I recalled my solo drive in the early morning to the hospital while I was in labor. Eric was on his way from military duty. I delivered my baby girl with a dear friend by my side. Eric arrived 15 minutes after Emmie entered the world. We got the shock of our lives when we were told that Emily had Down syndrome. We thought our lives were over. Little did we know that the beautiful girl we were holding would make our lives so much better. Emmie has opened up our eyes to a whole universe we never knew existed. A life that was so unfamiliar to us has become familiar, natural, "normal". Who would've thought?!?!

We celebrated Emmie's birthday this weekend with our family & friends. Her birthday reminded me of the many "typical" things that Emmie isn't doing yet: talking, walking, waving goodbye, drinking from a sippy cup, etc. I have to remind myself that these things will come & where Emmie is now is right where she is supposed to be. Her milestones are different & some day soon it will be Emmie's turn to do all of those "typical" things. For now, we wait & celebrate our little girl for who she is & everything she has given us.

In lieu of gifts, we asked friends & family to make a donation to either the Down Syndrome Aim High Resource Center or the Epilepsy Foundation in Emmie's honor. Everyone was very generous. Emmie received some wonderful gifts & several donations were made. Emmie's favorite gift came from Mema (my mom)...a rocking horse that makes a galloping noise & neighs. This gift is appropriate because of my mother's life long love of horses. She grew up on a horse ranch & now owns, trains & sells horses & gives riding lessons. She has been determined to pass on her love of horses to at least one of her children. Neither one of us got into it though. Aidan & Emmie have developed an interest. When we visit my mom, you can find the kids in Mema's barn helping with feeding, grooming, walking & riding the horses.

When Emmie got Mema's gift we decided we needed to name the horse. After all, Mema's horses all have cool names....Sundance, Choo Choo Charlie, Black Magic. Aidan wanted to give the horse a name that starts with "F". He did this because he loves "firetrucks" & "firefighters" & they both start with "F". We came up with the name "Fiona!" When Emmie hears "Fiona" neigh, she gets so excited!!! Her arms start flapping, the giggles come & she reaches for "Fiona". Sometimes she crawls over to her & pats her. Maybe Mema found her cowgirl after all. :)

Last week I learned to sign the "Happy Birthday" song to Emmie. I sing & sign it to her. She loves it! She smiles & waves her arms around. The connection is amazing & I want more, more & more!!!

Tonight Aidan chose to skip his swimming lessons so we can have a family dinner for Emmie. We are making her birthday brownies for dessert. Aidan will help me bake when he gets home from school.

"Happy Birthday to you. Happy Birthday to you. HAPPY BIRTHDAY TO EMMIE GRACE!! Happy Birthday to you!!!! " (We'll be singing, signing at dinner tonight.)

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.

ANOTHER DIAGNOSIS?!?!

A few days later, I got a call from Emily's pediatrician & she said that Emily's EEG showed abnormal brain activity/seizure activity. She referred us to a pediatric neurologist. He ordered another EEG. After the second EEG, we went to see the neurologist. He was very concerned that Emily could be having Infantile Spasms. These are a specific type of seizure seen in infants & children. With these seizures comes developmental regression & a specific pattern on the EEG. These seizures can be very serious & need immediate treatment that can include hospitalization to administer medication, which can include a daily injection. I was so completely overwhelmed with this information. Before we went to the appointment I was thinking, "Emmie has seizures, just give her some medication". If it were only that easy!!!

The doctor decided to admit Emily into the Epilepsy Monitoring Unit (EMU) for 24 hours at the hospital. During this time Emily would have constant EEG & video monitoring. The goal was to catch as many seizure events as possible. Every time I saw an event I was supposed to press a button & a doctor or nurse would check Emily & also mark the EEG. The doctor would then compare the video with the brain activity on the EEG.

This situation was extremely overwhelming for me. I was worried about Emily. I wanted Eric with me! I needed his help making decisions for our little girl. I needed his support & I wanted us to go through this together. I was worried about Aidan. What was I going to do with him? Who would stay with him? He already worries about Daddy being away & gets nervous when he is away from me for too long. Luckily, Aidan was in school at the time so I didn't have to worry about him during the day. I am so grateful to my mom for coming to help out. Mema to the rescue! She stayed with me & Emmie in the hospital. She also stayed overnight with Emmie. I thought it would be best to stay with Aidan & get him to school the next day. The regular routine is always best for him. He was worried about his sister. I told Aidan that Emmie was getting a check up. I took him to visit her at the hospital so he could see that she was OK.

Once again, Emily had to have 22 electrodes glued to her head. This time the nurse used a paste & an air gun to get them on. It was very traumatic for Emmie, me & my mom. Our sweet, happy girl was screaming at the top of her lungs & crying her little heart out. It was heartbreaking to watch. It wasn't hurting her, but the noise terrified her & she felt some pressure on her head.

After Emmie was hooked up the nurse put a blue backpack on her. This contained all of the wires & helped to keep them out of Emmie's way. Emmie was able to move around, eat, sleep, sit up & we were able to hold her & put her on the floor. She looked like she had a head wound from the war with a big gauze bandage wrapped around her head & all of the wires coming out. My poor girl!! Emmie was still her happy self.

The hospital had a room where we could check out toys for Emmie. A clown stopped by for a visit & made a purple rose for Mommy. Therapy dogs came by to cheer us all up. In a small way, it helped to make the situation a little better.

During Emmie's stay, my mom & I found ourselves pressing the button more times than we wanted. TOO MANY SEIZURES!!! Emmie had about 20 seizures while we were there. We learned that Emmie was having more seizures than we thought. There were times when she would stare into space...seizure! Sometimes she made a snorting noise...seizure!! Sometimes she would make funny faces...seizure!!! not all of the episodes were visible. After consulting with 4 other doctors, the neurologist concluded that Emily was not having Infantile Spasms & diagnosed her with Epilepsy...a kick to my gut!! Another thing on my plate..the worry, the stress, more appointments, another diagnosis...dear God!!! WHY???? Why my little girl? She already has so much working against her. Please don't give her something else!!!!!!!

The doctor prescribed a medication for Emily, Zonisamide, 25 mg, once/day. The medication would hopefully get the seizures under control & ultimately stop them. It sounds so simple, right?!?! Little did I know this would only be the beginning of a very long process.....

SOMETHING ISN'T RIGHT

About 3 months ago, Emily's therapists & I noticed that Emily was having periods of jerking her upper body, several times in a row. Her arms would jerk upward & her head would nod slightly. There didn't seem to be a trigger for the episodes. They would happen while she was sitting on the floor, in her highchair, in my arms, during therapy sessions, whenever, wherever. At first the episodes were fairly infrequent, but then started to increase to approximately 10/day. I took Emily to the pediatrician & after I described & demonstrated the episodes to her, she ordered an EEG (Electroencephalogram). The test would measure Emily's brain activity. The doctor was looking for any abnormal brain activity/seizure activity.

Within days, I was at the hospital with Emily getting her EEG done. Emily had to be sleep deprived for the test. The key was to get her to sleep during part of the test so they could record her brain activity while she was awake & asleep. I had to keep her up late the night before & wake her early the next morning. As always, Emily was a trooper!! When we arrived at the hospital, the technician hooked up 22 electrodes to Emily's head with a paste. Emmie was so patient. She laid down & I sat in a chair next to her, rubbed her hand & talked to her. She had a hard time getting to sleep so the tech swaddled her in a blanket & rubbed her cheek with a cotton ball, that did the trick.

During the test, the technician & I started talking about our families. I told her about Eric's deployment & my 2 children with special needs. I always feel it's important to share my story. I don't complain or want people to feel sorry for me. I always feel like we can all learn something from each other & the only way to do that is to listen & share. It's important for us as human beings to know that we are all going on the same journey, but on different paths. In one way or another, we all experience the same things.

Prior to the test, the tech had asked me how often Emily has these episodes & when they started. She was simply gathering information for Emily's file. In the middle of the test, she asked these same questions again. In my heart, I knew something wasn't right. Why would she ask me the same question again???

After the test was over, I asked the tech if she could tell me what she saw on the test & she said she couldn't. As she walked Emily & I down the hallway, she put her hand on my shoulder, gave a little squeeze & said, "You take care of yourself & that little girl". My heart sank & I knew something was really wrong with Emily. I tried hard to think that maybe I was reading into it. I am always the drama queen & I always look for the deeper meaning of things. Deep down, I knew something wasn't right with Emily.

HAPPY 4TH OF JULY!

How many of you know the reason we celebrate the 4th of July? I asked my 8 year old nephew today & he said, "Fireworks". Good one, Drew. :) The holiday celebrates America's adoption of the Declaration of Independence on July 4, 1776. On this day, colonies declared their independence from Great Britain. I think many people forget the real meaning of the holiday & its importance in our history. It's much more than BBQs, parades, & a day off from work.

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!!

TIME TO CATCH UP...EMMIE TURNS ONE

Wow! It's been so long since I've written. Life has been extremely hectic, to say the least!! The stresses of the day to day routine along with the emotional stress has been catching up with me. There are days when I want to run away from it all, but somehow I manage to keep on going. My little boy & girl give me the strength. One look at them & I know I have no other choice than to keep on going. This Mommy runs on Dunkin' too!! :) Those of you that know me know that I go to Dunkin' Donuts every day, sometimes twice a day for my 'lil pick me up.....an Iced Caramel Latte Lite...even Aidan knows what Mommy likes!) Whatever works, right?!?!

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!!

NASCAR & DOWN SYNDROME AWARENESS

NASCAR is holding a contest for a special design car & this Down syndrome Awareness design has been entered.

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!?!?!?! :)

MY OPINION

Emmie is napping & Aidan is busy playing. I want to take a moment to respond to the "R" word entry that I posted. First, I want to thank Kristin for posting a comment. I appreciate your honesty & respect your opinion. I have been guilty of using the word myself when referring to a situation or an inanimate object.

Since having two children with special needs, I have become more aware of the language that I use. I am not going to go off on some rampage about the "R" word, but I want to ask all of you to BE MINDFUL & RESPECTFUL! It sounds so easy to do, but I think some people get caught up in the moment & don't realize that their words are hurtful to others. I also ask that if someone is using that word & you are offended by it, SPEAK UP & tell them that you are offended by it or you don't like the word & ask them to use a different word.
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.

We are off to get Aidan's glasses fixed. He has huge scratches on one of the lenses & we have to get it replaced. He has been doing a great job & wearing his glasses all day!! He also been using the potty for 2 days now!! NO MORE DIAPERS!! There is a big boy living in this house. GO AIDAN!!! :) We went to WALMART at 8:00 this morning to get a special potty prize. :) Let's hope this continues.

HAVE A GREAT DAY EVERYONE!!

Find something to be grateful for each & every day. Today I am grateful for: Aidan & Emmie, the sunshine, my mom, my husband, good friends, my gym membership, my iced latte, Emmie's therapy....so much to be grateful for!!!!

THE "R' WORD

Emmie has been on Augmentin for 6 days & is starting to feel better. She has some diarrhea from the antibiotic, but that is a common side effect & will pass.

Aidan is on vacation from school this week. I am trying to keep him occupied every day. Today he got 1 of his shots for kindergarten (he was very brave & keeps admiring his band-aid), went to the library & shoveled snow. Aidan was such a big helper! I gave him 50 cents for helping me. He put it right in his piggy bank...just like his Mommy!! :)

I have been so busy, I haven't had a chance to post anything about all the Sarah Palin buzz.

If you don't know what I am talking about, let me fill you in....(This is only part of it. There has been another incident recently...more on that later.)

This was taken from CBS news:

"Former GOP vice presidential candidate Sarah Palin called for President Obama to fire his chief of staff, Rahm Emanuel, because of an offensive comment he reportedly made. At an August strategy session of liberal groups and White House aides, the Wall Street Journal recently reported Emanuel told liberals they were "F-ing retarded" for planning to air attack ads against conservative Democrats opposed to health care reform. Palin, whose youngest child has Down Syndrome, said in a Facebook note that "our president is doing himself a disservice by seeming to condone Rahm's recent sick and offensive tactic."

"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.

What are your thoughts? Was Rahm Emanuel out of line? Should he be fired? What do you think about the "R" word? I want to hear your thoughts. Let's get the dialogue rolling!

Time for this Mommy to hit the couch & get in some TV time! Good night everyone!

EMMIE IS SICK!! :(

It's been a rough few days with Emily. She has been very cranky & fussy & just "off". This is not Emmie at all. I have just been chalking it up to having a cold & teething. Last night she was up for 3 hours last night wih a runny nose, cough, crying, very uncomfortable. It was a long night & morning came very early for all of us. This is not easy to do alone. The only thing that pushes me through is knowing that Aidan & Emmie need me to be strong & be there for them, no matter how tired I am or how stressful the situation is.

Emmie had therapy this morning & she still wasn't herself. She was very hot to to the touch & cranky. I called the Dr.'s office & they got us right in. She had a fever of 103 & has an ear infection in her right ear. She is on antibiotics for 10 days. She has been so sleepy all day. My poor sweet girl, I hate to see her like that. She will have 2 doses of the antibiotcs in her today, so hopefully in a day or 2 she will be back to her happy self.

Luckily Aidan & I have stayed healthy. He has been doing such a good job with his new glasses. He looks so handsome in them. It's definitely an adjustment for him & for me too.

We are doing OK here. We hear from Eric about once a week. I have missed his calls a few times & that is frustrating. He has been extremely busy. His days are very long & stressful. This afternoon I had a little breakdown. Aidan saw me crying & he asked why I was upset. I told him that I miss Daddy very much. He said, "It will be OK. Dad will be home soon. He is saving people." That made me cry harder. My sweet boy! I hugged him so hard & it felt so good. Now, we just pick up, move on & get through the day the best we can. Tomorrow is another day.

Emmie's coughing, gotta run. Let's hope tonight is a good night.