31 for 21 Campaign Wrap-Up

The 31 for 21 Campaign is over today. I've had fun telling you a little more about Down Syndrome and other related topics. I hope you've enjoyed reading about it and maybe even learned a thing or two. I will try to keep posting as frequently as I can. I would estimate that to be about once a week unless I've found something worth sharing. Thanks for hanging in there with me!

Until Next Time!
Lots of Love,
Erica

02-15-2009

I've been saving this post for the end. It's about the day Raymond was born.

Raymond decided at 3:32am he was ready to make his appearance in this world. His heart stopped beating and I was being frantically rushed to the operating room. The nurse, Bridgette, called Chris and told him to head over to the hospital right away (very calmly amongst all the ciaos). After a lot of pulling and tugging, the doctor was finally able to get Raymond out. He was whisked away and then brought back in to us for only about 10 seconds. I remember thinking he didn't look as sickly as I expected for being born 10 weeks early.

I went to recovery and about three hours later I was taken in to see Raymond. The nurses wheeled my hospital bed into his private room in the NICU and put me right next to the incubator. We weren't able to touch him. So I stared instead. The NICU doctor came in to talk to us and I heard his voice but was listening to nothing he was saying. Remember watching Charlie Brown as a kid? Remember how it sounded when Charlie Brown would talk to him mom? Well, that's exactly what I was hearing. Then something he said caught my full attention, "Down Syndrome". What? I interrupted him and asked if he was telling me he thought Raymond might have Down Syndrome. He said, "No. I'm telling you Raymond has Down Syndrome." I was immediately, well, devastated. I didn't realize it at the time but Chris had already been told. All I could think was that people were going to be so mean to him. That I would watch him die. That he would never be a productive member of society. That I didn't want a child with Down Syndrome!

All of these thoughts made me feel like a horrible person and worse yet a horrible parent. (I recently read an article in a magazine by a mother who said if she and her husband knew in advance that their daughter was going to have Down Syndrome, they would have aborted the pregnancy and she knows now how much of a mistake that would have been. What a brave admission!) My brother arrived at the hospital and the nurses asked if it was alright if he came into the NICU. Of course it was and when he walked in he could see I was visibly upset. I'm sure he thought it was because Raymond was so tiny. I tried telling him the news but I couldn't say the words. I couldn't say Down Syndrome. I looked at Chris and said, "You tell him." When Chris did I cried hysterically all over again. My brother had to step away for a minute, it was a lot to take in for everyone, and the nurses were doing their best to comfort me. Truthfully I just wanted everyone to go away (other then Chris and my brother). Not long after a nun came in to the NICU room to see if she could be some comfort. She tried saying things that she thought would help (all while calling Raymond a "she") and I wanted her to leave SO bad. I didn't want to be rude to her but it felt like she was in the room for an eternity. In reality it was probably only 5 minutes.

The nurses took me to my room down the hall so I could try and get some rest. Later that night when I went back to see Raymond, the nurse snuck him out of his incubator for about 2 minutes so I could hold him. It was like holding nothing. He was so tiny. When he was born, Raymond weighed 2lbs. 13ozs. He dropped down to 1lb. 8ozs. I think Raymond was almost two weeks old before Chris was able to hold him for the first time.

Over the next few days we watched and wondered what was going to happen with our little Raymond. We made the decision to have him baptized in the hospital. So when Raymond was 5 days old, Monsignor Baddick came to the NICU and baptized Raymond. It was a decision that we are grateful to have made.

This is only a VERY small portion of what I was feeling over the coarse of those first few days. I will probably come back and read this later and think of a thousand other things I should have included. In hindsight I realize that I was morning the "death" of the child I thought I was supposed to have. "I thought I was supposed to have", isn't that an interesting statement? We really never know what we are supposed to have. We can only trust that we are given what we can handle. Whether you know it at the time or not.

Here is a list of what Raymond has been diagnosed with, was or is currently suffering from, and other miscellaneous issues:

• Down Syndrome
• Leukemia
• Detached Retinas
• Hearing Loss
• Chronic Lung Disease
• Collapsed Lung
• Hole in the Heart
• Chronic Aspiration
• Hernia's - 2 in the Groin and 1 large in the chest
• Seizures
• Eating through a G-tube
• Continual use of oxygen until 14 months old
• Multiple surgeries
• Multiple bouts of aspiration pneumonia
• Multiple at length hospital stays

Please never overlook your child's good health. With that being said, it might seem like a long list but our situation could be SO much worse. We are lucky. Raymond has his up and down days but at least he's here. At least he's not confined to a wheel chair. At least he isn't totally deaf. There are thousands of these "at least"s. So many people focus on the negative. I even think some people enjoy focusing on the negative and having a pity party for themselves. That's not in my nature. That only makes things worse...for everyone. It's life...get over it. That's just the way things are going to be! Put your best foot forward and keep going. That's what I do. I'm always grateful when friends and family share articles and information that they come across on and about Down Syndrome (I normally find it first though!). It doesn't always apply to Raymond but it's nice to know they are always thinking of us and want to help expand our knowledge and understanding of Raymond's diagnosis. What great support!!!

I also don't compare Raymond to any other child (even other children with Down Syndrome). He's almost two (yikes!) and he can't sit unsupported by himself yet. Okay. So what? He will in his own time. He wants to and he sure does try. I know he will hit all the miles stones like other children, with or without Down Syndrome, eventually. I'm proud of the progress Raymond makes everyday. I love him just the way he is. He has brought so many wonderful people in our lives that I would have never met otherwise. It might sound a little corny but he is the gift that keeps on giving. He gives me hope, unconditional love, a positive outlook and an entire book of other things. Now that's being blessed!

Until Next Time!

Lots of Love,

Erica

A Worthwhile Documentary

Why are people with disabilities so strange? Why do I feel so uncomfortable around them?

These are common feelings among those who aren't exposed to a person with a disability.

Brave in the Attempt endeavors to break through the barriers of perception that alienate those with disabilities from the rest of the population. How someone looks and sounds on the outside may not predicate who they are on the inside.
Often humorous and poignant, this feature documentary follows a basketball team of 15 young athletes in their quest for Olympic gold. Though they may have disabilities, they have the same desire for competition we all do. Some want to win very badly. Some are better athletes than others. Some don't like sports at all. In other words, they are just like everyone else.
Throughout the journey, the athletes with their coaches and families, give us insight into the challenges facing those with disabilities while showing us just how capable they really are. Through their tournaments, social events, work and school we get a glimpse into their lives as well as how to build a team.
I hope this documentary will be a great first step to introduce everyone to the disability population, and how normal they really are.

The Next Showing of Brave in the Attempt is on Sunday, November 7, 2010 @ 9:00PM EST on the Documentary Channel

DISH Network - Channel 197

Direct TV - 267

Until Next Time!
Lots of Love,

Erica

Music Video

This music video is very cute. What a sweet big brother! I hope you enjoy it!

Until Next Time!

Lots of Love,

Erica

A Common Question

A very popular question that I am asked is whether or not any future children that we have will have an increased chance of having Down Syndrome. The answer is is yes...by 1% Our chances have gone from a whopping 1% to a 2%. So in my mind I say no but scientifically yes there is a very small chance.

There are three types of Down Syndrome. The most common of the three types of Down Syndrome is often referred to as Trisomy 21 (this is the type Raymond has). About 95% of people with Down Syndrome have this. This type of Down Syndrome occurs because of an error in cell division. The error happens either before or at the time of conception. What happens is that a pair of the 21st chromosomes in either the egg or the sperm do not separate properly. This extra chromosome is then found in every cell in the body,thereby causing the characteristics of Down Syndrome.

Mosaicism occurs in about 1-2% of all people with Down Syndrome. In this type of Down Syndrome the error in separation of the 21st chromosome occurs in one of the first few cell divisions AFTER fertilization. This causes the fetus to have some cells with 46 chromosomes and some with 47. The cells with 47 chromosomes have one extra 21st chromosome. Because of the fact that not all cells contain the extra chromosome 21 the range of physical problems varies depending on the ratio of cells with 46 chromosomes to those with 47 chromosomes.

Translocation occurs in approximately 3-4% of babies born with Down Syndrome. In this type of Down Syndrome a part of chromosome number 21 breaks off and attaches itself to another chromosome. Often this is chromosome number 14. This causes all cells in the body to have the extra piece of the 21st chromosome. When a child is born with this type of Down Syndrome it could mean that one of the parents is carrying chromosomal material that is unusually arranged.

If you have a child with Translocation Down Syndrome your chances of having another child with DS increase by 80%. If Raymond had that particular type of DS, I can't say in all honesty that we would be having another baby. I'm just not sure. My feeling now is if our daughter is born with DS, then it was meant to be. But if I had the information telling me the risk was that great, I'm not sure what we would do. Also, if you're wondering, men with DS are unable to father children. There has only ever been two documented cases of an adult male with Down Syndrome fathering children.

Until Next Time!

Lots of Love,

Erica

Charity Navigator

Charity Navigator is a trusted website you can go to to make sure that the organizations you are giving money to are reputable. It also has a breakdown of how the funds are used. Click here for an example of what you'll see when you find a specific charity. I've selected the National Down Syndrome Society as an example. Also, if you have an organization which is looking to raise funds, you can request it be added to the site and a proper evaluation will take place.

Yum...

Because it is getting cold outside, I've decided to share with you my favorite soup recipe. I love this soup!!! It is so good!!! Enjoy...

Erica's Favorite Soup



2 Tbsp. extra-virgin olive oil
4 celery stalks, chopped
2 onions, chopped
4 carrots, shredded
1 bay leaf
salt & pepper
6 cups chicken broth
1 lb. ground chicken
1 egg
1/2 cup Italian bread crumbs
1/2 cup grated Parmesan cheese
2 cloves garlic, minced
dash of nutmeg
One 1 lb. pkg. gnocchi
1 cup frozen peas
Fresh parsley, finely chopped ( a couple of generous handfuls)

1. In a soup pot, heat the olive oil over medium heat. Add celery, onion, carrots and bay leaf. Season with salt and pepper and cook for 5 minutes. Stir in broth, cover and bring to a boil.
2. Meanwhile, in a bowl, season chicken with salt and pepper. Stir in egg, bread crumbs, cheese, garlic and nutmeg. Roll the mixture into walnut-sized meatballs (you'll have about 40) and add to the soup. Simmer for about 10 minutes. Add the gnocchi to the soup and simmer for 5 minutes. Add peas and parsley and cook for 2 minutes. Remove from heat and discard bay leaf.

***Note***
Please remember to chop the veggies the size you want to eat them in a soup. Our local grocery store sells mini-gnocchi and they are perfect for this soup. The regular size are fine too but I really like using the mini ones. You can find gnocchi in the pasta isle. When you buy a bunch of carrots, normally there are 5. I use all 5 in the recipe. I love to serve this with a homemade loaf of warm, fresh baked, crusty bread. This soup is also very good heated up the next day. Just make sure that you have extra chicken broth on hand because when it sits in the refrigerator overnight it tends to absorb all the broth. You'll definitely need to add more broth the next day...that's if there is any left over!



Are you hungry yet?


Until Next Time!
Lots of Love,
Erica

Disability Scoop

Disability Scoop is an online paper dedicated to developmental disability news. It's a wonderful resource and I really enjoy reading all the articles and stories. Recently a story was featured about Monica & David. They are a young couple, newly married, both with Down Syndrome. A documentary was made following their first year of marriage. It premiered on HBO on October 14. We don't get HBO and I don't know anyone who saw it. I'm going to see if I can find it elsewhere because I would really like to watch it.

Until Next Time!

Lots of Love,

Erica

1st Trip to the Emergency Room

Friday was Isabella's first trip to the emergency room. She was complaining her "hiney hurt on the inside". She screamed and cried for several hours. Nothing was helping. So I took her over and the doctors couldn't figure out what was giving her the pain and sent us home with a prescription for Tylenol with codeine. I'm not going to fill it though. I will just give her regular Tylenol if I think she needs it. If that doesn't help then we will be going back. She's still really uncomfortable and nothing seems to help. I don't want something to be wrong with her but I can't understand why she is in so much pain. A four year old doesn't yell "Help me!" and shake all over for no reason. I snapped a picture of her in the ER room because she was nervous about getting an x-ray. I asked her if it hurt when I took her picture and after she said no she seemed to feel a little better about it. I wasn't able to go in with her for the x-ray (because of being pregnant) and the nurse said she did a very good job. Isabella did crack a big smile when the nurse told her it would be a good idea to eat a lot of soup. Hopefully she starts to feel better soon because we just don't know what to do for the poor little thing.

Although he doesn't like to see his sister uncomfortable, Raymond was pleasantly surprised we weren't there for him!

Until Next Time!

Lots of Love,

Erica

Class Field Trip

On Wednesday, Isabella's preschool class took a trip to Weaver's Orchards in Morgantown. We had never been there before and it was a nice place. I think we will definitely visit there again.

We started out in the play area. Isabella really enjoyed the corn table. She and the twins played there together for a long time.

I think Catherine and Elizabeth are quickly becoming close friends with Isabella. They always seem to stick together. I haven't quite figured out how to tell them apart yet, but I'm working on it. Raymond, who was strapped to me the entire time, liked watching them play.

There was a slide in the play area but Isabella only went down it once. As you can tell from the picture, she wasn't that crazy about it. All the kids seemed to slide down it really fast. The boys all loved it and the girls were extra cautious.

Afterwards we took a hayride to the pumpkin patch. Each child and parent got to pick a pumpkin.

Isabella and Ava

After we choose the perfect pumpkin we walked down to Mrs. Raudenbush (one of Isabella's teachers) for a plastic bag to put them in.

While we waited for everyone to get their bags, the kids played a little on the hay.

Next we walked to the apple trees. The lady who was leading our group explained to the kids the way to pick an apple. She also told them the stages an apple goes through before it's shiny, red and ready to eat.Here they are curling up like apple buds. Now they are opening up into apple blossoms.

Isabella found a nice big apple for herself and for mommy.

Everyone headed over to the barn to hear a story about Johnny Appleseed and to see how apple cider is made.

Here is Isabella with Catherine and Elizabeth again. Notice how they are all holding hands.

All the kids was able to throw an apple into the apple press.

Then we went to the picnic area for a snack where we all got apple cider and pretzels. The trip was over so Isabella, Raymond and I went into the market to look around. We tasted a new fruit called a kiwi-berry. It's the size of a grape and tastes just like a kiwi but without the fuzz. We bought some of those to bring home.

On a totally different note, I am currently going through our DVDs and putting them into sleeves to save some space. While looking through them, I found one of our wedding videos. Isabella is always asking about our wedding (I think because she sees the curio cabinet with wedding things in). So I decided to put it in for her. She thought it was so cool! I didn't show her the entire thing, only about 10 minutes. She asked if I would keep it out so we can watch it again. She was just so happy to see it!

Until Next Time!

Lots of Love,

Erica

Take A Walk In My Shoes

TAKE A WALK IN MY SHOES

by Susan Drumright

I am a kid with Down syndrome. It is not something I could choose. I'd like you to know me better. Would you take a walk in my shoes?

Down syndrome affects my body from my muscles to my brain. But I'm more like you than I'm not. Come with me and I'll explain.

Let's take a walk together and you can see things through my eyes. Look we both have Nikes on and we even wear the same size!

As we walk listen carefully, I'll be teaching you about me. Together we can have some fun, but your help will be the key.

Be patient as I am talking. I often get tongue-tied. If you can wait long enough, you'll see we're the same inside.

In school I'm often frustrated, learning stuff that's new. Learning isn't as easy for me as it seems to be for you.

So if you see that I'm in trouble and I need a little clue. Try drawing me a picture or showing me what to do.

Don't worry if I tell you, "No thanks, I don't want a hand."I like to do things for myself. My motto is: "I CAN!"

But you can always help me by cheering for my success. Just like I'll cheer for you when you score a goal or ace a test.

Smiles, hugs, pats-on-the-back...they all make me grin. I'll give back all these things to you, multiplied by ten.

My world is full of fun things, like movies, pizzas, swings. It's great to have a friend to share in what each day brings.

Thank you for walking in my shoes. I wanted you to see. I really need a friend like you who likes me just as me.

Until Next Time!

Lots of Love,

Erica

Hershey Medical Center

We took Raymond to the Hershey Medical Center Feeding program last Friday. This was his initial consultation and Chris and I both were really anxious to see what the doctors had to say. We were there for almost two hours. The appointment started like most others. Raymond was weighed and measured. We then sat down with Dr. Williams and went over Raymond's feeding abilities and inabilities. He asked us a lot of questions and decided to give Raymond some applesauce so he could see first hand what we were up against. He gave Raymond the applesauce on a Nuk-Brush and slowly moved it around his mouth. He was pleased that Raymond was allowing him to place objects and food into his mouth (even though it wasn't staying there). Dr. Williams then excused himself and told us he wanted to find a video for us to look at. Isabella went with him to find it and then we all sat together and watched it. The video introduced us to Tina Lee. She is a five year old little girl with Down Syndrome who was brought over from Dublin, Ireland to the feeding program at Hershey. She was showing the exact same behavior as Raymond when someone attempted to feed her. When Tina Lee was first brought to the program she wouldn't allow anything to even touch her mouth. Luckily for us Raymond will tolerate that. There are two major issues that Raymond is having. The first is that his mouth is "reverse swallowing". Instead of his tongue throwing the food to the back of his mouth, it's throwing it forward. The second is that he's not swallowing properly. He can swallow but it's more like a giant gulp on occasion. Both of these are treatable but it will take time and patience from all involved, including Raymond. Tina Lee was treated as an inpatient and underwent intense feeding therapy. She is now doing very well and eating by mouth and no longer by a feeding tube. Dr. Williams is going to take the same course of action with Raymond. His treatment plan will pretty much be the same other then the fact that he will be treated as an outpatient. For the time being, I will be working with Raymond using the Nuk-Brush three times a day for 10 minutes at a time. Dr. Williams also switched Raymond's formula again and Raymond is tolerating it well. We go back in a month to report our progress. Dr. Williams also told Chris and I that he sees on average 40-50 kids a year with Down Syndrome all with varying levels of feeding issues. The majority of the children he treats have autism. We were very happy with the first meeting and look forward to making fantastic progress on the feeding front. If anyone has any questions about it just let me know!

Until Next Time!

Lots of Love,

Erica

West Virginia Weekend

This weekend we visited my brother and his family at their home in West Virginia. This was the first time Raymond had ever been to their house. He had fun rolling around on the floor from person to person.

Raymond is doing much better sitting up supported.

Grandpa! I think the last time we saw Grandpa (in person) was in January. He's a busy college professor now!

Raymond was VERY happy when he saw Aunt Lori left her cell phone laying on the floor.

On Saturday we celebrated our nephew's 5th birthday. Alexander's party was at a local farm/pumpkin patch. Despite the wind, all the kids seemed to have a really nice time.

Alexander and Aunt Lori

Birthday Money!

Uncle Bob

Raymond had a lot of fun on the slide.

After presents and yummy cake we all went on a hay ride.

The farm also had a corn maze. This was Isabella's first time through a large corn maze. Mine too actually.Please take note of Hayden. He's sitting next to Raymond. Can he get any cuter in his elephant costume??

Thanks for a fun weekend Uncle Bobby, Aunt Lori and Alexander!

Until Next Time!

Lots of Love,

Erica

Rolling Around In My Head

Rolling Around In My Head is a Blog that I really enjoy to read. Dave Hingsburger is a man who lives in Canada and writes about his experiences as a person in a wheelchair and any wonderful random thought that comes into his head - or a conversation that he may overhear. He is brave and inspiriging. I like his brutal honesty and his abitily to reach out to so many people. His blog was the one I shared a post from a while back. If you have some time, take a look at it and be sure to bookmark it. There is always something worthwhile to look at. I even enjoy reading the post comments.

Rolling Around in My Head

Until Next Time!

Lots of Love,

Erica

Side Bar

If you haven't already, check out my side bar titled "Celebrities Affected by Down Syndrome". The list may surprise you! If you know of someone who I left off the list, let me know so I can add them asap. Thanks for keeping up with the 31 for 21 Campaign!

Until Next Time!
Lots of Love,
Erica

DownsEd USA

The DownsEd USA program originated in the UK. They are working to ensure successful education for all children with Down Syndrome. They transform the lives of children with Down Syndrome by advancing understanding of their learning needs and empowering families and teachers to provide effective, evidence-based learning support.
Down Syndrome Education USA works in close partnership with Down Syndrome Education International - a global leader in developmental and educational research, publishing, training and advice - and with the Down Syndrome Foundation of Orange County. Together, they are developing new programs to provide practical support for families and educators.
Their activities include scientific research and information and advice services including web sites, publications, webinars, conferences, training, consulting and assessments. They are a wonderful resourse!!!

This is a picture of a little boy on the DownsEd UK page. I think this is exactly what Raymond will look like when he's bigger!!! What do you think?

Until Next Time!

Lots of Love,

Erica

Silly but...

This is probably a silly thing to post but it's something that really bothered me. As everyone knows, we participated in the Buddy Walk. The walk was held at The Valley Preferred Cycling Center. It also happens to be a Coke-a-Cola sponsored park. Because of this sponsorship, you are not allowed to bring in beverage products that are not Coke-a-Cola. Being a non-profit organization, the Eastern Pennsylvania Down Syndrome Center asked Coke to donate bottled water to the walk. Meanwhile, Pepsi offered to provide ALL the water but we had to decline because of the conflict of interest. A few local grocery stores donated Dasani water (Cokes brand) and members of the center also donated some. We still needed much more. The day before the walk Coke finally contacted the center (after months of notice) and said they would not donate any water. Que panic. We needed water! We contacted the people at the cycling center and after much resistance they agreed, this one time, to allow us to bring in non-Coke branded water. Weiss grocery store stepped in at the last minute and donated 75 cases. A big thank you to Weiss! I just wanted everyone to know how Coke treated our organization. I'm sure we aren't the only ones that have been given the same lack-of courtesy. So next time you go to the grocery store, do me a favor, buy Pepsi.

Until Next Time!

Lots of Love,

Erica

What Causes Down Syndrome?

This is a question I get asked a lot. Most people think that or refer to Down Syndrome as a birth deffect. It is not. A baby develops Down Syndrome long before birth. If you want the correct answer to this question, read on.

So What Causes Down Syndrome?

In every cell in the human body there is a nucleus, where genetic material is stored in genes. Genes carry the codes responsible for all of our inherited traits and are grouped along rod-like structures called chromosomes. Normally, the nucleus of each cell contains 23 pairs of chromosomes, half of which are inherited from each parent.

Down syndrome is usually caused by an error in cell division called "nondisjunction." Nondisjunction results in an embryo with three copies of chromosome 21 instead of the usual two. Prior to or at conception, a pair of 21st chromosomes in either the sperm or the egg fails to separate. As the embryo develops, the extra chromosome is replicated in every cell of the body. This type of Down syndrome, which accounts for 95% of cases, is called Trisomy 21.

The two other types of Down syndrome are called mosaicism and translocation. Mosaicism occurs when nondisjunction of chromosome 21 takes place in one-but not all-of the initial cell divisions after fertilization. When this occurs, there is a mixture of two types of cells, some containing the usual 46 chromosomes and others containing 47. Those cells with 47 chromosomes contain an extra chromosome 21. Mosaicism accounts for about 1% of all cases of Down syndrome. Research has indicated that individuals with mosaic Down syndrome may have fewer characteristics of Down syndrome than those with other types of Down syndrome. However, broad generalizations are not possible due to the wide range of abilities people with Down syndrome possess.

Translocation accounts for about 4% of all cases of Down syndrome. In translocation, part of chromosome 21 breaks off during cell division and attaches to another chromosome, typically chromosome 14. While the total number of chromosomes in the cells remain 46, the presence of an extra part of chromosome 21 causes the characteristics of Down syndrome.

Regardless of the type of Down syndrome a person may have, all people with Down syndrome have an extra, critical portion of chromosome 21 present in all or some of their cells. This additional genetic material alters the course of development and causes the characteristics associated with Down syndrome.

The cause of nondisjunction is currently unknown, but research has shown that it increases in frequency as a woman ages. However, due to higher birth rates in younger women, 80% of children with Down syndrome are born to women under 35 years of age. There is no definitive scientific research that indicates that Down syndrome is caused by environmental factors or the parents' activities before or during pregnancy.

Once a woman has given birth to a baby with Trisomy 21, it is estimated that her chances of having another baby with Trisomy 21 is 1% greater than her chances by age alone.
The age of the mother does not seem to be linked to the risk of translocation. Most cases are sporadic-that is, chance events. However, in about one third of cases, one parent is a carrier of a translocated chromosome. The risk of recurrence of translocation is about 3% if the father is the carrier and 10-15% if the mother is the carrier. Genetic counseling can determine the origin of translocation. We choose not to have this testing done.

Until Next Time!
Lots of Love,
Erica

Prenatal Booklet about Down Syndrome

When a person gets a diagnosis of Down Syndrome for their new baby, it is a scary and unfamiliar topic. A lot of information being presented is poorly written and is more worrisome rather then encouraging. This publication will be such a help to parents with the diagnosis!

Doctors, Genetic Counselors, Medical Geneticists and Down Syndrome
Advocates Agree on Prenatal Diagnosis Information to be Published

Balanced and accurate informational booklet will soon be available to medical
professionals and families throughout the United States.

October 4, 2010 (New York, NY).The National Down Syndrome Society (NDSS) is
pleased and excited to announce that an agreement has been reached on the contents
of a prenatal booklet about Down syndrome which will be made available to physicians
and women throughout the United States who receive a prenatal diagnosis of Down
syndrome.

NDSS believes that the prenatal booklet, Understanding a Down Syndrome Diagnosis,
developed by Canister, which has been distributed to Down syndrome organizations
nationwide through funding provided by the Joseph P. Kennedy Foundation, is
accurate and up-to-date and will benefit thousands of women and their families.
According to Madeleine Will, NDSS VP of Public Policy, “This historic agreement
ensures that women and their families can learn the facts about Down syndrome that
reflect the experiences of thousands and thousands of families who are living with a
family member with Down syndrome. Medical professionals who work with parents and
families in the Down syndrome community have provided up to date and unbiased
information about Down syndrome in a new era when prenatal diagnosis is being
offered increasingly to all pregnant women and their families.”

The booklet was reviewed by an Education Advisory which was assembled by NDSS
and the National Down Syndrome Congress (NDSC) as part of the Kennedy grant and
then submitted to a Consensus Group made up of representatives from NDSS, NDSC,
the National Society of Genetic Counselors, the American College of Medical Genetics
and the American College of Obstetricians and Gynecologists, who also provided input
to the final version of the booklet revised by Stephanie Meredith at Canister. When the
final version is printed it will contain a dedication to Mrs. Eunice Kennedy Shriver and
the following statement agreed upon by the member organizations of the Consensus
Group:

“This booklet was prepared with assistance from the Down Syndrome Consensus
Group, which includes representatives of The National Society of Genetic Counselors,
The American College of Medical Genetics, The American College of Obstetricians
and Gynecologists, The National Down Syndrome Society, The National Down
Syndrome Congress.”

“This was a significant collaborative process with representatives of five national
organizations contributing expert input to finish the booklet with accurate, balanced
information and resources for parents with a prenatal diagnosis of Down syndrome.
The Down Syndrome Consensus Group was initiated in 2008 by the University of
South Carolina’s Genetic Counseling Program and Center for Disability Resources to
promote shared understanding of health professional and advocacy community
perspectives on Down syndrome among the five national organizations” states Janice
Edwards, Clinical Professor and Director of USC’s Genetic Counseling Program.

Until Next Time!

Lots of Love,

Erica

Welcome to Holland

I have shared this poem before on the Caringbridge site but I really wanted to post it again for anyone who may not have seen it. Please take a minute to read it.

WELCOME TO HOLLAND
by

Emily Perl Kingsley.

c1987 by Emily Perl Kingsley. All rights reserved

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 fabulous 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 the 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, filthy 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 must learn a whole new language. And you will meet a whole new group of people you would never have met. It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandt's.
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 pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very 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.

No matter how many times I read this, it resonates with me and I get a little choked up. I think it's a lovely representation of what a lot of people feel who didn't expect to make a pit stop in "Holland". We made a crash landing there and after awhile I too started to see all the beauty. I fell in love with the landscape and will never go back.

Until Next Time!

Lots of Love,

Erica

Reception

You might remember that I posted a picture of our friends Sean and Sarah at their wedding in California. This past Saturday Sean's mom held a picnic/reception for the newlyweds. It was nice to see them and good catching up with everyone in person.

Isabella was waiting semi-patiently for a "big" piece of cake.

This is what was left of the cake once Sean's sister, Kathy, massacred it! : )

Pete and Mrs. Geist

Vanessa and Teresa

Isabella, Vanessa and Ollie

Jason

Melissa - very excited to be holding Isabella's bug box. At least it only had a moth in it and not another type of creepy-crawly bug which Isabella is normally attracted to!

Here is Melissa much more comfortable with her nephew Jack. He is SO cute and I'm glad to have finally met him in person. He and Raymond were playing footsie.

And here is Jack with his Grandma. Jack has a mild case of Cerebral Palsy and he did great at the picnic. It's nice to hear that he is doing so well!

Until Next Time!

Lots of Love,

Erica

Buddy Cruise

Do you have a family member with Down Syndrome? Do you need a vacation? Well, if you answered yes to both of those questions then the Buddy Cruise is for you! Chris and I are really hoping to go on the cruise within the next three years. Hopefully Raymond's health will be more stable by then. It looks like a blast and we can't wait to go on day. Also, most of you know that we like the Wiggles here at the Burch house. The boys from down under were gracious enough to make the welcome video for the cruise this year. If you have a minute visit the website and check out the pictures. They are fun and fantastic memories even for those who weren't there.

Until Next Time!

Lots of Love,

Erica

Home from St. Christopher's

Raymond had tubes and a BAER study done at St. Christopher's Children's Hospital on Tuesday. I went thinking it would be easy and it ended up being a mess. His surgery was scheduled at 6am and they didn't take him back until almost 8:15am. So we snuggled while we waited. When the doctor came out to tell me the surgery was over he also informed me that everything hadn't gone as planned. While Raymond was under anesthesia his breathing became very labored and they had to intubate him and put him on a ventilator to breath for him. He was on the ventilator for about an hour before they took him off. So that was an unexpected complication. When I was sitting with Raymond in the recovery area I noticed that he had some bruising that wasn't there before he went in. The anesthesiologist called Dr. Halligan (Raymond's Oncologist) to come take a look at him because they thought maybe his blood count was low. Dr. H took a peak at him and took some blood. He seemed agitated that they hadn't preformed any blood work before surgery given Raymond's medical history. Anyway, the blood work came back okay. Dr. H told us his only conclusion could be that they were too rough with Raymond during surgery. That was the last thing I wanted to hear. While I was talking to Dr. H the nurse started to give Raymond some Pedialyte through his G-tube. When she went to walk away, she stepped on the tubing and ripped the G-tube out of Raymond's stomach totally. What a scream he let out! So they immediately paged Raymond's regular surgeon, Dr. Arthur, to come and reinsert it. I don't know who was more upset about it, Dr. Halligan, Dr. Arthur or myself. Well, I guess realistically it was Raymond. So poor Raymond had a very rough day.

The ENT also came to speak with me about the BAER test. She said that Raymond was showing moderate hearing loss in his left ear and mild in his right ear. This is slightly better then his last test. The nerve in Raymond's ear seems to be functioning fine. So the conclusion is that Raymond has conductive hearing loss. Raymond's ear canals are so small and they also didn't develop normally. With that being said, the sound waves are not able to properly make their way through the ear canal. This is a type of hearing loss that will not correct itself and will never get better. The reason that his hearing is slightly better then the last time they preformed the test is that they cleaned out a lot of fluid and debris. Raymond will require hearing aids for life. We go back and see the ENT in a month to talk about that process further.

After I brought Raymond home he developed a rash all over his face. We took a few pictures but none of them turned out real great. It's hard to tell just how bad it was in the pictures.

It kept getting worse and worse. The poor little guy looked like a raccoon. I called the hospital and couldn't get a hold of anyone! I left several messages and still haven't heard anything. This is one of many incidences that have made Chris and I very upset with the hospital. I am in the process of writing a letter the the hospital administration about our dissatisfaction. I'm going to take a few days to write it so I don't leave anything out. I don't want to send it and then remember something that I should have included. Hopefully our transition to Hershey Medical Center goes smoothly. I think we will keep seeing Dr. Halligan at St. Chris but that's it.

On a brighter note, Isabella went into preschool a cute little girl and came out a cute little puppy!

Until Next Time!

Lots of Love,

Erica