Friday, July 31, 2009

ONE MORE THING

I wanted to add this earlier, but didn't have enough time. I just want to say how grateful we are for our wonderful Early Intervention team. Emily's therapists & coordinator are so helpful. They are a wealth of knowledge & we appreciate their work so much. Emily is getting everything she needs & so are we. I remember working with Aidan's team & his therapists became part of our family. I feel that happening with Emily's team. Everyone is truly doing their best to help Emily in any way they can. That is priceless!!

THANK YOU!!

EMMIE GETS A WORKOUT

I am writing this entry on our brand new computer & I love it!! The keyboard is like buttah! :)
Emily's Early Intervention therapies are well underway! Here's the latest....

Speech/Feeding Therapy: Roberta sees Emily 2x/month. Our primary focus originally was
cutting down on Emily's feeding time. It was orginally taking her about an hour, sometimes more to eat 4 ounces!! She is now down to 20-30 minutes. What a difference! Now I feel like it doesn't take up our entire day. For quite a while, Emily was only able to use the nipples that we got from the hospital. All of the other nipples that we tried were too difficult for her to use. Emily has graduated from those nipples & is now able to use a regular Dr. Brown's nipple. I only chose the Dr. Brown's bottles because I used them with Aidan & liked them. Emily is doing a great job. We have really cut down on her spit up too. We make sure to give her plenty of breaks during feedings & this seems to help.

During Speech therapy, we also focus on Emily's facial muscles & tongue movement. When she is sucking on her bottle, we give her cheek & chin support. We also look to make sure there is not a gap on the side of her mouth when she sucks. Soemtimes we massage Emily's cheeks & poke one of our fingers in her mouth to get her tongue moving in different directions. All of these techniques will hopefully increase Emily's muscle tone & that will help her when she starts speaking. Roberta is a wonderful therapist & we are so grateful for her help & resources. As Emily gets older, we will increase her Speech therapy sessions if needed.

Physical Therapy: Jill comes for Emily's sessions 1x/month. We recently decided to increase Emily's sessions to 1x/week & that will take place in the Fall. The focus of these sessions is working on increasing Emily's overall muscle tone. She is a floppy baby, so we want to work on making her stronger. I am the perfect Mommy for Emily...I am a dance & Pilates instructor & am so interested in this aspect of Emily's therapy. I feel it is so important for her overall development.

Jill taught us massage techniques that we can do to stimulate Emily's muscles. We also do things like "tiptoeing" along her spine with our fingertips to activate her muscles, joint compressions, & stabilizing her hips when she is on her tummy to give her support for lifting up her upper body.
We recently incorporated a fitness ball into Emily's Physical Therapy sessions. Activities on the ball include: bouncing, rocking front to back & side to side, tummy time, etc. Jill also gave me a great resource on baby yoga. I am so excited to try this with Emily. At some point, we are going to do a few physical therapy sessions in the pool too.

Social Work: For Mommy!! Cathy comes 1x/week. It is so good for me to talk to someone about what we are going through. I feel like I have come so far on this journey in a very short time, but every once in a while, I go through a "down" phase. I think that's typical. Every day is a new step. Sometimes I feel that's all I can do. One day at a time, one step at a time.

I have to sign off. Emmie is getting fussy upstairs & Aidan is due to get off the bus any minute. Just wanted to let you know how therapy is going.

Sunday, July 26, 2009

A BROTHER'S LOVE

Aidan & Emmie....It is so sweet to watch them together. Aidan is such a good big brother. When Emily was born, we were worried that Aidan would be jealous or act out. We haven't had any of that. All we see is the love he has for her. When Emily was in my belly, we talked about her alot, read big brother books to Aidan, let him help get Emily's room ready, & took him to the ultrasounds at the doctor's office. His preschool did a wonderful job preparing for the arrival of his baby sister. They read books, played with baby dolls, & talked about why babies cry. I am so grateful for the help of Aidan's teachers. They made a huge difference.



I want to share a few stories that might help capture how Aidan feels about his little sister. As soon as he wakes up in the morning, Aidan comes tip toeing into our room, looking for his sister. (She sleeps in the cradle in our bedroom.) He often says, "Is Emily awake or asleep?" Then he peeks in on her. If she is awake, he talks to her & puts her mobile on for her. When I tell him to, he pulls the velcro tabs on Emmie's "pink thing". (her swaddler). He helps me take it off.



When Aidan gets off the bus in the afternoon, the first thing he asks is, "Where is Emmie? How is she doing?" He comes right into the house to see her. Lately, he goes right up to her says, "Mommy, tell her big brother is home!" The sweetest....



Emmie's room is girlie & pink...shabby chic with flowers & butterflies. I do my best to keep the room neat & picked up. I want it to look good. It makes me feel good. Every day, several times a day, I find several of Aidan's cars or trucks in Emily's room...under the crib, under the stool, in the crib. Aidan leaves his mark everywhere.



Every time I change Emily's diaper on the changing table, Aidan follows a routine. I have a small step stool in Emily's room that has a vase of flowers on it. I think they are peonies. Aidan takes the vase off the stool & says, "Mommy, let's plant the marigolds in the garden!" I think he calls them marigolds because of the marigolds in Ruby's garden on the cartoon "Max & Ruby". Then he puts the vase on the dresser. Next, he moves the stool over to the changing table, steps on it & watches me change Emmie's diaper. He touches her belly & sometimes he says her belly is talking. Aidan also likes to race his cars up & down the changing table. That stool is always left by the changing table. It gets on my nerves & I have put the stupid thing back in it's place over a million times. It always winds up back near the changing table. I have finally given up on taking Aidan's toys out of Emily's room & putting the stool back where it belongs. It doesn't matter if the room is not picture perfect. It matters that Emily's brother wants to be with her all the time.



When Emily is sleeping or resting in her crib, Aidan likes to take the stool over to the crib. He likes to peek in on his sister & talk to her. He also likes to put her crib toys on for her. One evening, Emmie was in her crib & it was Aidan's bedtime. He wanted to sleep in Emmie's room. He got his pillow & a blanket & we let him campout on her floor, next to the crib. This happened a few times. Big brother wanting to be near his little sister...priceless!!



Several nights during the week, we like to go for a walk around the neighborhood. Aidan always asks, "Can Emmie come too?" Eric takes Aidan swimming at the recreation center & Aidan always asks if his sister can come. He never wants to be without her. When Emmie smiles, Aidan says, "She's smiling. Look at her!" When we tuck Aidan in bed at night, he usually wants his sister to come into his bed for a little while. When Emmie cries Aidan says, "It's ok honey. She wants her bottle. She wants her binky." He often mimmicks the nicknames we call her. He thinks his sister's name is "Emily Gracie Girl!" :)



Aidan is a special & unique little boy. He is funny, smart, cute, curious & kind. He likes to splash in puddles with Daddy after a rain storm. He is obsessed with smoke detectors. He loves cars, trucks, & country music. His favorite movie these days is "Bolt". He gets mad if I do the laundry without him.



The love Aidan has for his sister is amazing to witness. Aidan has no idea that Emily has Down syndrome. When the time is right, down the road, we will tell him. To Aidan, Emmie is his little sister & it's as simple as that. She is just like everyone else. When I see Aidan with Emily he reminds me of that. Part of me feels bad for Aidan because he will never have a "normal"....I hate that word....a "typical"....that's the appropriate special education term....sister. I guess I feel like he might be missing out on something. There's the mother's guilt again!! Maybe it's everyone else that is missing out though. Aidan is a lucky boy to have Emily as his sister. My hope is that Aidan's life & ours will be richer & fuller because of Emily. I can see it already. This little girl has done something amazing to this little boy. Aidan & Emily are bonded for life. As a mother, I couldn't ask for anything more. I love my girl! I love my boy!! Life is good....

Friday, July 24, 2009

I AM STILL HERE!! :)

I did not run away! Our computer crashed & I have limited internet access. We should be getting a new computer very soon. I can't wait to get back online. I have missed writing.

Thanks for your patience!!

Tuesday, July 14, 2009

EMMIE LEARNS A NEW LANGUAGE

Tonight Emily & I attended our first Sign Language class. The class was held at the
Down Syndrome Aim High Resource Center. When I first heard about the class, I immediately signed us up. I know some Sign Language from when Aidan went through Early Intervention, but I thought I could use some refreshing. I was excited to learn something new, but I also felt a little hesitant knowing I would be surrounded by all of the babies with Down Syndrome & their parents. This made me a little uneasy because when I attended the play date a few weeks ago, it really shook me up. It took me days to feel better. Sometimes it's that reality looking right in the face that kills. Well, about fifteen minutes before the class started, Emily & I packed up & headed to the Center. "Here we go", I thought.


When I pulled into the parking lot I was talking to my sister on my cell phone so that distracted me. (Of course, I was using my headset!) When I walked into the Center, I felt really comfortable. Right away I was greeted by Debbie. I met Debbie when I first visited the Center. She reminds me so much of my Aunt Jackie. She feels familiar & put me at ease. Everyone there was so friendly & welcoming. I remembered most of them from the recent play date. I sat down with Emmie & got situated. I felt empowered because I was going to learn something that will help Emily communicate & it will help us communicate with her. Emmie may have a speech delay at some point or need help communicating, so it felt really good to jump right in & learn.

A few minutes later, my new friend Sheila walked in with her husband. Her daughter is a month older than Emily. We connected at the play date & have been emailing back & forth. When I saw her I thought, "There's my friend. She understands exactly how I feel & what this journey is like." I felt a sense of relief.

The class started & we learned many new Signs...."Mommy", "Daddy", "More", "Hello", etc. We also learned some songs & the Alphabet. We learned how to sign someone's name. You sign the first initial of the person's name. So, "E" for "Emily". Then you sign something that is a characteristic of that person or some term of endearment, like a kiss or a heart or the eyes for the person's beautiful eyes. I can't wait to come up with a sign for Emily! :)

Let me tell you about all of the beautiful babies I saw!!! Oh my gosh!!! They were all so beautiful!! Emmie was the youngest & I think the oldest was 2 years old. Their sweet faces!! They were smiling, clapping, crawling, & walking. Emily laid on the floor, wiggled around, kicked her legs, then she spit up all over her blanket. :) All of these babies were filled with life & joy, like any other baby. I sang to Emily & signed to her. She kept watching the instructor & cooing. My Emmie Grace...my heart...my soul...

The class was great. I am SO GLAD we went!! It wasn't hard to be with the group. It was comfortable & fun. I am really looking forward to the next class. I can't wait to show Aidan the Signs. He will love that! He learns Sign Language at his preschool & I know he will love "talking" to his sister. My Aidan Michael.....also my heart...my soul......I have to tell you about my boy!

That will be my next entry. Time for bed. It was a busy day for me & Emmie. We did a mystery shop. (Valet Parking at the hospital! :)) This is one of my crazy side jobs. We also went to buy a double stroller so Aidan & Emily can sit together & go for walks. We went to the store three different times in order to pick the right one!!

As always, thank you for reading!

Sunday, July 12, 2009

FIND YOUR ESCAPE

I am writing this entry for all the moms who have a child with Down Syndrome, however, it really does pertain to everyone. I can't stress enough the importance of finding your escape from the sadness & madness. Yes, sometimes I feel like I am going insane from this crazy life I am living!! How the hell did I get here?!?!?! Even if you don't have a child with Down Syndrome, you know exactly what I am talking about. Believe me, I don't mope around the house because my daughter has Down Syndrome, but it does get to be a little much sometimes on top of everything else.

I find the crazier things get, the more I need an escape. I need something to get me out of reality for a while. We all need that. I can't ever forget what is going on in my life, but a little peace here & there, really helps me. For me, it's working out at the gym, listening to music & singing like a rock star (yes, I am the next American Idol! :)), taking a drive by myself with the radio cranked up, meeting a girlfriend for dinner, gardening, blogging. Sometimes I just sit & enjoy the silence. Right now I am typing downstairs in the office & the peace is wonderful. I feel refreshed after I blog. It feels good to get everything out & to hear such wonderful feedback from all of you.

These things & others take me away from everything that is going on & I cherish them. These days, I find these times are few & far between. I grab them when I can & get lost. With two children with special needs, it is so easy for me to get caught up with pediatrician appointments, developmental pediatrician appointments, phone calls, scheduling Emmie's therapy sessions, attending Emmie's therapy sessions, catching up with my son's teachers, researching special needs, finding resources.....at times it does take over my life!! This is all on top of my regular wife & mommy duties!! Having typical children is very busy & chaotic. Having children with special needs adds another layer. Aidan & Emmie are my world & I do everything I can to better myself as their parent & to better their lives. It is constant! Sometimes I think it would be easier to just let things slide, but that's not good enough. My children need me &t hey deserve better. I am their voice, their advocate. I will not quit.

So, to the Mommies.....Read a book, go for a walk, call a girlfriend, go shopping...
FIND YOUR ESCAPE!! Get away from all the information & every day craziness. You deserve it!!

Going to bed. My afternoon latte is wearing off. Good Night!

Tuesday, July 7, 2009

SMILING EMMIE :)

Emily smiled for most of the day today. She is such a happy little girl. She has discovered our ceiling fan in the living room & she can't stop smiling when it's on. I came back from the gym tonight & Eric called me into the living room. Emily was staring up at the ceiling fan, watching it spin around. She was smiling non stop! It was the sweetest! I am not sure if the breeze was tickling her face or if she just loves how it looks when it spins. She was also cooing. I have to get it on video. She melts me.

That's my Emmie. Pure Joy. All of the time. Every day Emily reminds me to stop & appreciate what I have in my life. It's so easy to get caught up in the every day: bills, laundry, a tantruming
3 year old, cooking, cleaning, appointments, etc. The simplest thing like Emmie's smile makes all the difference. It is infectious.

So, stop what you are doing. Take a look around. Appreciate what you have....& SMILE!!! :)

I am cutting this short tonight. Just got back from the gym & I am wiped out.

Good night!

Wednesday, July 1, 2009

PUNKIN? MONKEY?

We have so many nicknames for Emily.
Emmie
Emmie Grace...Aidan's favorite
Emmie Gracie Girl
Emmie Girl
Pretty Girl
Mommy's Girl
Baby Girl
Gracie Girl...Mommy's favorite
Little Girl
*All of my nicknames have "girl" attached to them. I have no idea why!
Little Bear
Monkey...Daddy's favorite
Punkin
Sweetcakes
Angel

What will we come up with next?

WE ARE SO IN LOVE OUR LITTLE GIRL!! Can you tell? :)

**Emmie gets her 3 month shots tomorrow. Not looking forward to that.