Weekend Recap

Our trip last weekend was wonderful! The weather was great and really made me long for the warmer weather. Our flight was a bit rough going into Atlanta. I really thought we were not going to land in one piece. The plan wwas rocking back and forth and I thought for sure the wings would hit the ground. Obviously we landed safely and were we glad to be on the ground.

We received a rental car and drove over to Evans (near Augusta) to the rental house. On the way there the GPS brought us down this dirt road. :) Made me laugh because it totally reminded me of when we lived in SC.

These were our badges to get us into the the Masters on Saturday. We had a great time. Did I tell you the weather was gorgeous? We actually talk to Kerrie Webb and her dad for a bit on hole two. We had no idea who she was but knew she was a pro player.

This was the view from the back patio from the rental house. I could sit here for hours. The smell of pine was in the air and you could hear birds and the leaves on the trees rustling. Made me long for the south.

This is the kitchen in the rental house. People around Augusta rent their houses out for the week of the Masters. Maids come in daily and clean just like they would in a hotel.

I love this fire place! To the left are huge windows that over look the water. It is very beautiful.

This is the house that I want to buy! LOL OK, maybe not this one but it is for sale and we were curious as to how much they were going for in this community.
The view from the Marriott in Atlanta.
Another shot from our window. We ended up going to CHOPS for dinner and boy was that an amazing meal. I don't think Atalanta is the place for us, the traffic is insane! One day we will be back in the south!!!

This was our beautiful Easter Bunny! I took this picture of Spitfire before she rubbed all of the red off of her nose. Our children are on Spring Break this week and we could not have asked for a more perfect week with the weather. This weekend we go back to rain but for now the kids have been outside playing and having fun in the sun. :)

Benefit For Zach

Zach Saurini Benefit
April 26, 2009
Sennett Fire Dept 1-5pm

Zachary Saurini was born with the rare Oculo-Ectodermal Syndrome & Jaffe Campanacci Syndrome. These syndromes have caused Zachary to have tumors on his long bones, length discrepancies on both arms & legs, along with the bones being very brittle. Zachary has undergone many surgeries to correct this, with the most recent one at Childrens Hospital Boston. Zachary faces more surgeries in the future.Your attendance at Zach’s event will be donated to the Saurini Family to specifically help them pay for travel, living and medical expenses.

For Info email: thesaurinis@yahoo.com

CONTACT: ED HELINSKI 315-664-3103

DON FULLER 315-730-0328

MUSIC PROVIDED BY TOTAL ENTERTAINMENT DJS!

$10 Per PersonUnder

5 yrs FREE!

Pasta Dinner, Raffles, Door Prizes!

Twinkle Twinkle

Sorry it's so dark but you can actually hear how Twink sings Twinkle Twinkle Little Star.

Speech Frustrations

There are days when the sadness take hold of me and it seems for a few reasons that it has a firm grip on me lately.

This is our daughter Twink. She is signing daddy or father in sign language. Twink had a stroke in her first moms uterus or soon after birth. The stroke spliced her speech center and Twink can not talk like a "normal" 3.3 year old.

Although she is making HUGE steps in her speech they would seem like baby steps to you. I will admit, some days they seem like baby steps to me.

It is hard when we are out and about and people assume that she doesn't speak English because she hasn't been in the US for very long. Sorry to say but she has been here for 16 months now. Or they look at her and because she is almost as big as my 4 1/2 yr old think she can carry on a conversation. I feel like I have to go into her life history everywhere! It is frustrating. How about when someone speaks up and tells your daughters story in front of both of you. Twink is very smart and understands everything. She might not be able to talk but she is taking in everything your saying.

As of right now our speech therapist and our pediatric developmental doctor have thrown out two speech disorders.

Apraxia of Speech is a speech disorder characterized by inability to speak, or a severe struggle to speak clearly. Apraxia of speech occurs when the oral-motor muscles do not or cannot obey commands from the brain, or when the brain cannot reliably send these commands. Apraxia of speech is characterized by highly inconsistent speech errors. Children with apraxia can be helped with intensive speech therapy.

Dysarthria is a neurologic speech disorder caused by paralysis, weakness, improper muscle tone or incoordination of the muscles of the mouth. Dysarthria is not a disorder of language.
Symptoms of dysarthria may include speech that is slurred, slow, and difficult to produce and/or understand. The person with dysarthria may also have problems controlling the pitch, loudness, rhythm and voice qualities of their speech. Associated problems may include drooling and difficulty chewing and swallowing. Unlike apraxia of speech, the speech errors that occur with dysarthria are highly consistent from one occasion to the next.

For the most part Twink does well getting her point across. Whether it be with what sign language she has or through pointing. It's amazing when you know your child so well that you can read their expressions or body language and know how or what they are thinking. I think the poem that I put up on Monday did an amazing job describing the feelings of both parent and child who suffer from speech problems.

Right now Twink receives speech three times a week. In June, she will receive speech therapy four times a week. When we first met Twink in China they only thing she said was GaGa. Now she tries to sing Twinkle Twinkle Little Star. She tries to repeat words and some times if you listen carefully she will bust out with a sentence. It's all sporadic but we will take it. When Twink signs or speaks some thing new we cheer like crazy! You should see how excited she gets when we do this.

Our daughter amazes us. For a little girl who's entire left side of her brain has been damaged by a stroke she does things that should not be possible. She is perfect in every way. I may get frustrated at times as does she but I wouldn't change her for the world. She has taught us many things. If it were not for Twink we may not have pursued adopting Beams.

Did I tell you that our beautiful daughter Jewel, is doing her health project on Cerebral Palsy? :D Now that makes this moms heart melt.

Hearing Your Silence

Hearing Your Silence
by Donald Robin, Ph.D., CCC-SLP

We don't understand when we hear your silence

We can't see behind your frustrated eyes when you plead for our attention

We are unable to feel your awkwardness when you try to speak and the wrong sounds emerge

We cannot be inside you to will your tongue to move when it struggles to find the roof of your mouth

We don't understand the fear that consumes you when you are on the playground when you should be having fun

We are not privy to your brain that creates a world of words only to have your muscles stop their meaning

We do not hear your mind communicating freely only to have us look quizzically and ask for repetition

We cannot sense your joy at moments of clarity only to have it rapidly disappear again and again

We do know who you are when you look into our eyes

We can hold you tightly when your fists clench and tears fill your vision

We will struggle with you each day and night when you practice your speech sounds with great deliberation

We are proud of your trying when we might just give up

We share with you your pain when your mouth is tired and slow

You know that we will love you when you are little and when you grow

You know that we will be there for you when all seems dark and cold

You know that you are special and what you want to say

You know you are our children and who you are each day

You know your world is full and how to find the way

You know we hear your silence

You know, we hear your silence

You know we hear your silence

(July, 2004 on the occasion of the First National Apraxia-KIDS Parent Conference)

Outside Fun

It was actually warm here a couple of days ago. It reached 65*F on this day but today it is snowing! I so can not wait for winter to be over with. The girls loved going out to play.

Spitfire was writing her name with side walk chalk and Twink was drawing over it.
Twink riding her bike. She is learning to push it with her feet. Forget the pedals, they are too hard for her right now.

Twink was not too keen on riding in the Barbie Jeep. I think it was the noise that she did not like. Spitfire begged me to put her in so she could take her for a ride.

With Twink so upset and screaming her head off the ride did not last very long. Spitfire was so sad that Twink did not want to ride with her.

I do have to brag a bit. Spitfire has learned how to ride her big girl bike without training wheels! She will be 5 this summer and is the youngest of our children to ride a bike at her age with no training wheels. The best time to learn how to ride is when there is no snow on the driveway but still cold enough for snow pants and mittens. If you fall off then you have lots of protection. :) Dash and my neighbors daughter helped her one day and that's all it took.

Hope your weekend is warmer than ours!

Georgia Here We Come!

Can you guess what we are doing in Georgia?

The Count and I were invited by his boss to attend the Master's Golf Tournament. All expenses paid weekend! :O) So we scurried around and found sitters for the children and will have a wonderful weekend a way.

The commercial went well. Twink did much better than I thought she would. They let her hold a beach ball. Between the ball and the camera lights she was good as gold! We can't wait to see the finished product.