Friday, April 8, 2011

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

Tuesday, April 5, 2011

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!! :)

Monday, April 4, 2011

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.)