One more mountain to climb

When we found out about Emma's diagnosis, we knew that the simple life that we had wanted to lead was going to take a different turn. Someone that I had met on an online board for families in similar situations had mentioned that this life is a rollercoaster ride. She wrote, "You can't have your ups without your downs." I never realized how true that was until this past week.

We are going through a bit of a rough patch as far as seizures are concerned. We were really praying that we would be in the lucky 20 percent of AS patients that did not have to battle seizures. Emma got a cold about three weeks ago. This seems to have triggered a batch of sleepless nights and days filled with seizures. She is having little episodes of "head drops". They only last a second and don't seem to alarm Emma at all. She goes right back to whatever activity she was doing before. It has put a bend in therapy because we are afraid she will fall and hit her head. I really wanted to keep her off of any medicine as long as I could. This has been a tough decision. We decided to go with the lesser of the two evils (or so we think). We did take her to the doctor today and will start seizure medicine this weekend.

We are keeping her on her GFCF diet. She seems to be doing great on it but one problem we found was that she is getting way to many starches. We have started a Low Glycemic Diet this week. Still pretty healthy and hopefully very positive results! Emma goes and sees a DAN doctor in a few weeks. Rumor has it; she is the same doctor that treated Jenny McCarthy's autistic son. We are also thinking of trying a chiropractor. I have been reading about some really positive results with children with disabilities.

Believe me I have my critics..... I know it sounds like a lot. I have to do these things. I feel like the moment that we stop trying is the moment that we are in a helpless situation. I don't want to look back 10 years from now and say, "only if we had tried the diet or the chiropractor".

A silver lining.... research is so encouraging! I sometimes don't fear the future because I know that the outcome is going to be great. I just got a really interesting article about a new study that will hopefully start drug trials in the near future. Reading about the road these scientists are on is so encouraging! It is truly fascinating what they have been able to find out and some of the things that they hope to try. I still have a lot of faith that the answer will be found!

I will keep you posted on the seizures. Right now, Emma needs your prayers! We know that this is just one of those down times on our rollercoaster ride. This to shall pass and we will pull through just fine.

I love watching Emma sleep. It gives me time to look at every little feature and think about how beautiful she is. She has been doing a lot of sleeping this week because of her cold. Watching her sleep, is when I do most of my thinking and worrying. Lately I have had those terrible "why me moments". It is almost as if I knew the reason this happened to us then I could fix it and it would go away. So many people have told me, "God gives special children to special people." I just don't agree.... I am not special. I don't think I have any quality that can make me handle this situation any better than anyone else. I am not fearless, I am not selfless, patience... well I am working on it. Maybe Emma is here to teach me these things. Maybe Emma is here to teach the world some things. Her smile alone can teach the world love.
I have been hearing this song lately and the tears start everytime.....

"I believe there are angels among us. Sent down to us from somewhere up above. They come to you and me in our darkest hour, to teach us how to live, teach us how to give, to guide us with the light of love".

I am learning to not have pity for myself. This is not happening to me, it is happening to Emma. Emma is happy! We won't see her throwing herself a pity party. She has so much to learn but even more than this, we have so much to learn from her!

Great OT Appointment Today!

Just wanted to let everyone know that Emma had a great OT appointment today. This was the first appointment with Miss Sally since November. We are very excited that she will be working with Emma every other week. Miss Emma sure was a show off today. She was up on all fours with minimal support!!! We don't know if she will be much of a crawler but this is still great! She is doing so well at standing that we all think she is going to jump right to walking. She played with some new toys.... and played with them the right way! We were impressed at how she was opening and closing the buttons on one of the toys. She worked with markers and paper for the first time! Of course Emma wanted the marker in her mouth but it is something we will be working on. She also got to play with a Magna Doodle... I am going out to get her one of her own this week! Emma is doing so great and we know that she will surprise us all.

Read this poem today.....

Hi! This poem was on a friend's blog and thought that I would share....

Welcome to Holland


"I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it , to imagine how it would feel. It's like this.....

When you're going to have a baby it's like planning a vacation trip-- to Italy. You buy a bunch of guide-books and make your wonderful plans.

The Coliseum, the Michelangelo, David, the gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later the plane lands. The stewardess comes in and says, "Welcome to Holland!"

"HOLLAND!?!" you say, "What do you mean, Holland? I signed up for Italy. I'm supposed to be in Italy! All my life I’ve dreamed of going to Italy". But there's been a change in flight plan. They've landed in Holland and there you must stay.

The important thing is that they haven't taken you to a horrible disgusting place full of pestilence, famine and disease. It's just a different place.

So you must go out and buy new guide books. And you will learn a whole new language. And you will meet a whole new group of people you never would have met.

It's just a different place. It's slower paced than Italy, less flashy than Italy. But after you have been there for a while and you catch your breath, you look around, and you begin to notice that Holland has tulips, Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy, and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say, "Yes, that's where I was supposed to go. That's what I had planned".

And the loss of that will never, ever go away, because the loss of that dream is a significant loss.

But if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things about Holland."



……Emily Pearl Kingsley (founder of the USA Down Syndrome Association)

(Reproduced from AFASIC News No. 78 May 1995)


I know this is how we feel and will always feel about our Emma. What a sweet girl! There is not a day that goes by that I don't think about how much joy she has brought us, how much joy she will continue to bring us, and how lucky we are to have her!

New Diet

Ok... we are starting week 2 of the GGCF diet. So far so good. Emma has been a little cranky, but I would be too if I had gone without real bread and cheese for a week. I am so glad the girl is not picky when it comes to food! She is munching on a bake potato as I am typing this. (Thank goodness she can have her starches!) She is making that "uummmmm" sound she makes when she is really enjoying her meal! Aunt Lynn brought us a great cookbook and I have planned a couple of meals for the week. (We won't tell Brian what is in them)
We have an EEG scheduled for tomorrow morning. We have to keep Emma up late tonight and wake her early tomorrow. This should be an experience! I don't know how she is going to handle having things stuck all over her head. This is the baby that squirms and giggles when the doctor is measuring her head. I will be sure to bring my camera. Wish us lots of luck with that!

The Beginning....

We want to thank all of our friends and family for the support that you have given us over the last few weeks. We feel blessed that you will be sharing this journey with us. I decided to start this blog to keep you all updated on the great things happening in our lives. Even though we just received life changing news, our lives really have not changed very much at all. One of the first things Brian said was, "Emma is still the same little girl we loved before the diagnosis." How right he is! I can't believe how lucky we are to have her. I have never seen such a sweet, beautiful, happy child in my entire life. I am not just saying that because I am her mother. She seems to touch everyone that meets her. Walking through the mall with her, you feel like a celebriety (even more now with the glasses). She gets so many smiles and comments about how cute she is. We have a great life and although we now have Angelman Syndrome in our lives, it will still be great. Emma is going to do great things. I believe that she might do more now then she would have without AS. We have met people all over the world and know that we have friends in so many places now!    
          I am working on a website for Emma that will also give you the information that I am learning about Angelman Syndrome. I am so excited about all of the therapy opportunities and the research that is being done. We are so proud of Emma and feel that she is going great at 16 months. We will make sure that she gets every therapy opportunity that is out there. We want to start hippo therapy with Emma, which can begin at the age of two. We are already one step ahead, as Emma had her first experience on our horse this past weekend. She had a smile on her face from the time she got on and even cried when we took her off! Watch out cousin Jaynee, Emma might take that state title from you one day!
       I have also met several families who have had wonderful outcomes by changing their childrens diet. Sorry Emma, no more Kraft Mac-N-Cheese! We are transistioning her to a glueton and casen free diet. So far she has loved everything that we have given her. Things won't really change in her diet too much, no more processed foods and more fresh fruits and veggies. Really, we all should be eating like this.
       We have a meeting with her therapist coordinator today to find out more about more therapy opportunities for her. She will start speech therapy right away. She actually was released from speach at 12 months because she was babbling so much. We know Emma has lots to say and will be able to tell us everything one day!
       Check back often for updates and pictures. I will let you know when we have her website up and running. Thanks again for your thoughts and prayers!