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!! :)