Wednesday, September 30, 2009

Happy Birthday, Emma!

You are 2! I can't believe how much has happened in the last year - You are One Busy Girl!

You have changed so much in the last year and we are all so proud of how much you have accomplished. Here are just a few of the things you were up to this year:
  • Lifting up your head and turn it from side to side without throwing your body around
  • Learned to sign "more" and "all done"
  • Received a cochlear implant, had it activated and are playing with your voice. Finnegan and Julia are your favorites to talk to!
  • Know a lot of what we are saying - for example, when you slump over and we tell you to sit up without any visual clues, you sit up straight!
  • Love, Love, Love to read books! Playing with puzzles, blocks and bubbles are also some of your favorite activities.
  • Learned to give high and low fives!
  • Started riding your pony Mercedes and learned to like the farm (thank goodness for the goats!)
  • Reach out for anything and everything that we put if front of you so you can check it out
  • Can sit *unassisted* for several seconds at a time and can sit with very minimal assistance for a very long time
  • Started trying to crawl
  • Started eating more foods - with birthday cake as the most recent food you like!
  • Learned to use switches effectively and are using them to help with your language development
  • Took lots and lots of field trips! With your car seat now facing forward, you don't start to fuss in the seat unless you've been in it more than 1.5 hours, which makes us want to take you everywhere! This year you went to the beach, had sleepovers at your grandparents houses without Mom and Dad, saw Sesame Street Live!, went to the Blue Rocks games a few times and made a lot of trips to museums, the zoo and the aquarium. You love to go out and people watch!
  • Like to make a lot of noise in Church - and look around at all the people and smile while you are doing it! - and know that we will not shush you at all.
I'm working on making a slideshow of all the highlights of your 2nd year, but didn't finish it yet! I'll have it done soon so that you can show it to everyone. We LOVE you SOOOOO MUCH, Emma! Happy birthday, sweetheart!

Although we will have a little family party for you on the weekend, we wanted to do something special to celebrate your actual birthday. So, you helped Mommy and Julia make a cake for your birthday dinner. You insisted on frosting it yourself and just loved playing in the cake and eating it while you were frosting it. I think it turned out to be the most beautiful cake I've even seen. It made me so happy to see you enjoy your cake so much!

Video that simulates hearing loss

Over at Kidz blog, Cristin posted this video for Deaf Awareness week. Apparently, the week was last week but I didn't know about it which just means that we are having too much fun to notice that it is deaf awareness week.

After you look at this video, if you want to know what it sounds like to use a cochlear implant to access sound for deaf people, you can click on this link for simulations.

Monday, September 21, 2009

Why I Blog

I originally started this blog as a way to keep track of what is happening in our lives. I've always wanted to keep a journal and have started and stopped over the years but never really have the time to write consistently. I type much faster than I write and I thought of keeping an electronic journal but only gave that a half-hearted effort. The idea of an online blog appealed to me so that I could journal about the girls' milestones, easily include digital photos and video, and keep family and friends updated on Emma's progress.

I became familiar with blogger by visiting the blogs of (mostly) Moms of special needs children. I visited some blogs so frequently that I started to "follow" them so that I could be informed of new posts - you can see the blogs I follow in the panel to the right. In reading these blogs I met kindred spirits, found inspiration, and learned a lot about alternative medicine options. And, to be honest, in the beginning I found that reading the blogs was sort of a "Chicken Soup" for my soul.

I started leaving comments with my online community and people found their way over here to check out my blog. I'm now at the point where I want to help pay it forward - to provide information learned on our journey that others might find helpful, so I created posts on craniosacral therapy, therapeutic riding, and equipment. These posts were meant to keep family and friends updated and also to provide information to other parents in a similar situation. I will also contribute to Tara's Kidz blog as a way to share our journey with more parents and also spread the word on preventing CMV birth related defects to a larger audience.

As I expand the focus of this blog you might notice more posts meant to share with my online community included among all our family happenings. I think you'll find them a nice complement to my blog.

Wednesday, September 16, 2009

The Day After

Yesterday was a BEAUTIFUL day and the girls and I hit the road to visit Chris's parents who were vacationing at the beach. We left the house around nap time and I thought the girls would nap on the way, but I was completely mistaken - not a closed eye in the car! The afternoon and evening were packed with pool time, beach time, walk and dinner time without so much as a wink of sleep for either girl. Here are some photos from our day out.

Although the girls fell asleep immediately when we hit the road for home, they were still very tired this morning when I woke them up. In fact, I'm not sure that Emma fully woke up before she started her morning AV therapy session. Here are some photos, what do you think?

Tuesday, September 15, 2009

Kidz Blog

Tara is an amazing mom to Chloe, a sweet little girl that reminds me so much of Emma. Somehow, Tara manages to keep up several blogs which is simply amazing to me! Today she introduced a cast of several guest writers for the Kidz blog and I'm honored to be one of them! There is a theme for each day on the blog: Make your day Monday, Try this Tuesday, Whimsical Wednesday, Thoughtful Thursday, Family fun Friday, Sing to me Saturday, and Sacred Sunday.

From the Kidz blog:
"I created this site in hopes that it could be an uplifting resource that celebrates the lives and lessons of special needs children, a.k.a. kidz. This is a site for everyone, because all children are special and we can all benefit from connecting and learning from each other. Our mission is to increase awareness and understanding about different health conditions and to help all people cope with challenges and enjoy life!"

Go ahead and click on the logo above and check out the Kidz blog. And, when you fall in love with it like I did let Tara know if you are interested in being a contributor because she would love to add more members to the Kidz Krew.

Thursday, September 10, 2009

Apple Picking on Labor Day

We had so much fun on Labor Day! Theresa and Brianna came over and we all went to Milburn Orchards to pick some apples and play. The girls loved choosing the perfect apples and then tasting them! We stopped over to feed the animals and play on the outdoor toys before heading home to make apple crisp. Yummy!

Enjoy this slideshow of our outing. Next year you'll have to join us.

Therapeutic Riding Update

Emma had a rough few months start with therapeutic riding. She pretty much cried for the entire 30 minute session each week and we were starting to wonder if we should keep taking her to the farm. Emma has a unique cry that she reserves for therapeutic riding. In the beginning Emma would cry when she saw Miss Kris, Emma's helper on the horse. Then she progressed to crying when we started up the dirt road to the farm. Eventually, she recognized the ride and started crying when we came off the main highway onto the road the farm is located. AMAZING! No one can tell me that my child is not smart, because if they do they clearly do not know my child very well!

Here is a photo of Emma throwing her fit while riding her pony, Mercedes. It upset Miss Kris a lot that Emma always cried when she saw her. Apparently, Emma hadn't yet figured out that most children smile when they arrive at the farm to ride a pony!

After 3 months of constant crying, Emma was becoming a bit of a legend around the farm. We were even thinking of taking a few months off of riding when the animals for the 4H program ( a first of it's kind for special needs children!) that is getting started at the farm started showing up. The first animal to arrive was Adam, a goat. Emma met Adam shortly after his arrival at the farm and that is when the people at the farm first saw Emma smile! When Pam brought Adam to Emma, she immediately reached out to touch him, grabbed his paw and didn't want to leave. It was love at first sight.

Here is a photo of Emma meeting Adam. Unfortunately, Adam got sick shortly after he arrived at the farm. Although he only was with us a few days his legend in making Emma smile and transforming her attitude on the farm will live on forever in our hearts.

Thankfully, Emma has found a friend in Ella another goat on the farm. Emma still cries a bit when Miss Kris first puts Emma on Mercedes, but we now tell her that she is going to go see Ella if she stops crying and she immediately stops crying! We then go over and meet up with Ella and Emma gets to spend a bit of time *talking* to Ella and petting her before we head out on the pony ride without any tears. Emma is even sitting up tall on Mercedes now and talking a bit on the ride around. Who knew that it would take a goat to turn Emma on to pony riding???

Here is a photo of Emma, Ella, and a smiling Miss Kris! I'm not sure who is the happiest about Emma's new found love of goats and ponies - Mommy, Emma or Miss Kris!

Wednesday, September 9, 2009

Random Musings

Julia is at pre-school and Emma is napping right now, so I have a few precious moments (about 45 minutes) to myself. I feel a bit guilty that I'm not doing one of the zillion things on my to do list right now, but I've decided to just relax for a moment and write a web post about nothing in particular.

Here are my random thoughts:
  1. I'm really happy for the new tv season. I don't get a chance to watch too much television, but I love The View for the Hot Topics portion. Most people I tell this to just groan and tell me how they hate the show, but I just love it. I tivo it every day and watch it while I clean the kitchen and prep for dinner when the girls are taking an afternoon nap. I also love The Biggest Loser and Grey's Anatomy, so I'll be tuning into the season premiers for these shows along with a few mindless comedies to round out my tv viewing.
  2. Emma is making so much progress lately! She is starting to talk in jargon - mostly vowels with a few consonants thrown in - much more. I'm excited with the way she is progressing. Also, with the use of our communication board/switch she is able to demonstrate that she can distinguish between objects when we say the associated sound and/or label! This is fantastic! She is also starting to cooperate a bit more when we do the ling sound check each day. This will be infinitely helpful at her CI mapping appointments.
  3. Julia and Emma are starting to argue! This is SOOOO funny to me and is music to my ears! Julia loves to play with Emma and is used to Emma just letting Julia do anything she wants to her without Emma making a fuss, but with Emma engaging in activities more and grabbing items now she doesn't always go along with Julia's plans and it is causing me to have to play peacemaker a bit :-)
  4. Julia asked me the other day if she can be a mommy one day. Then she told me she wants me to have another baby - a tiny one - so she can help out. I told her we'll have to visit Tanya and Liz more this fall to see tiny babies!!!!!
  5. We are planning on moving next year and are starting to work on our projects to get the house ready for the move. We're planning on moving into a ranch house so that it is fully accessible for Emma. We are currently looking at schools to determine the best fit for Emma and then will start to look at houses once we select a school district.

Friday, September 4, 2009

Emma's Equipment - Lots of photos

This post is a bit long, mostly due to the photos, since I wanted to make sure that I put in enough photos so anyone considering the items below could see the product in action. I'm happy to answer any questions you have on any of the items below, so just leave a comment if you have one.

A hot topic for parents with children with cerebral palsy is equipment. Since the equipment is expensive, has a long lead time, and not readily replaceable (insurance often requires it to last 3+ years before replacement), I'm posting a review of the equipment we use with Emma hoping that other parents might find it useful.

Positioning Chair: Jenx Giraffe. We absolutely LOVE, LOVE, LOVE this chair! It gives Emma all the support she needs to develop better fine motor skills, has wheels so we can move Emma around the house along with us and is kid-sized so she is on the same level to interact with other children. And, the huge bonus is that is is actually CUTE in addition to functional.

Stander: Leckey Squiggles Stander. We tried many, many standers and they just didn't fit Emma's petite figure until we tried the Leckey Squiggles based on recommendations from other parents. Emma LOVES this stander and I love how easy it is to put her in and out when I'm alone, which isn't as easy on most of the other models we tested. It also has wheels so it is mobile and I bring Emma all over the house with me. The stander has proven itself especially useful in the kitchen, where Emma can help us cook while we can use her tray as our preparation surface!

Feeding Seat: The First Years Infant to Toddler Feeding Seat. This works well, but we usually need to roll up receiving blankets and prop them on Emma's sides so she doesn't fall over the side. It also doesn't have any foot support for her to push against during feeding. But, it is the best solution at a low price we have found for ease of feeding, eating with us at the table, and portability. We actually bought two and keep one in the car and use it for picnics, remove the cover and put it in the baby pool to help support Emma, and bring into restaurants.

Chair: Tripp Trapp Chair is a chair that we bought used to work on Emma's trunk control. It sits at the perfect height for our table, but we needed something to help keep Emma on the chair so we are using the Leckey Waistcoat size 2. I also put some shelf liner on the seat surface to give Emma traction for sitting. It will be a while before Emma can sit for any extended length of time on this and she can easily kick her feet out without placing them flat on the foot surface, but I like having this seating option especially since I was able to buy the chair and waistcoat for less than a new Tripp Trapp chair.

Adapted Stroller: Kids Rock F.A.S.T. I find this to be an AMAZING piece of equipment and am so happy we have it. We have had this since April 2009 and I credit it for Emma's huge gains in head and trunk control. Her body is fully supported and she can focus on keeping her head up, moving her head all around to keep tabs of everything that is going on around her and enables her to more easily interact with her environment. On days that she is controlling her trunk really well I sometimes strap the lap belt and leave the chest straps off for a small period of time (seen in one photo below where Emma is showing off!) as long as we are right there next to her. The other really nice thing about this stroller is that she can kick her legs out and push out her back and the stroller has springs that allow the stroller to move with her. It makes it so much nicer to know that Emma can move in the chair when I'm strapping her into it!

There are a few drawbacks, though. It is a bit bulky even when folded - it easily fits in the back of our minivan, but probably wouldn't be able to fit in the back of the car with all the supports that Emma needs on it (note: if less supports are needed I think it folds more compactly). It is also heavy and awkward to pick up. After moving this in and out of the car by myself ~4x/day, I was getting a bit worried about throwing my back out. So, we bought a suitcase ramp to keep in the minivan and now I just wheel it in and out of the car via the ramp and this is no longer an issue.

Tummy Swing: Wingbo markets itself as a swing that makes tummy time fun. I think Emma agrees! The swing is a bit pricey, but Emma cannot roll herself off of her tummy while on it and she seems to love all the vestibular input and is now holding herself up really well. She is even even moving her arms while maintaining her posture - as seen in this photo that I snapped when Emma was moving her arm up to grab the edge of the swing with her hand - a major accomplishment for her!

Greatness is Expected of You

The title of this post pretty much sums up how I feel about anyone who has a part in Emma's life, which I've come to call Team Emma. The team is headed by Chris and me, but there are so many members.

That's the first thing I learned when Emma was diagnosed with profound hearing loss and cerebral palsy - the group of people involved in your child's life grows exponentially! The next thing I learned is that I can hire and fire those members on the team as necessary. It took me a while to invoke that power, but now I'm comfortable making changes to the team. Members who don't believe in my child nearly as much as I do don't stay on our team very long. I'm a firm believer in the child rises (or sinks) based on expectations and Emma deserves to be surrounded with people who believe and enable her (out of the box thinking required!) to rise to meet our high expectations.

I'm thinking of giving our team a slogan - Team Emma: Greatness is Expected of You (it would look good on a t-shirt, right?). After all, if I state it up front then those on the team know what is expected up front.

So, what exactly do I mean by Greatness is Expected? I mean that my little girl is bright, engaging and driven. She should not be underestimated - and neither should her parents! I expect family members to believe that Emma will achieve a lot in her lifetime and demand her to work hard while having fun. I expect therapists to believe in Emma's unlimited potential, for goals to be set high with appropriate timelines and outside support brought in as necessary. In short, I expect a lot from Team Emma. And in return, Emma will give you the greatest gift possible - her tireless effort to reach the goals with a huge smile on her face. What more can you ask for?

Tuesday, September 1, 2009

Including Samuel

I heard about a documentary called Including Samuel from one of my yahoo groups. The film was created by a photojournalist that has a son with cerebral palsy and looks at the challenges and opportunities to include Samuel in their everyday experiences and in school. It also shows several others with disabilities and shows their varied experiences.

I just looked at the extended trailer - 12 minutes - on the documentary and I can't wait to see the whole show! It's playing in the Philadelphia area on WHYY (Channel 12) at 7pm on October 9th. I'm setting my DVR to record it. I hope anyone reading my blog takes the opportunity to check out the trailer here and then decides to watch the documentary on your local PBS station.