Category Archives: Down Syndrome

Our Beach Trip

A few weeks ago our family, my sister’s family, my mom, and Sarah Hardy packed up and headed south for Orange Beach, Alabama. I LOVE the ocean, and I had been telling Louis that once heart surgery was complete we were traveling to the beach to rest and recover – HA! What was I thinking…I have two children. My romantic idea of sitting on the beach listening to the waves, reading a good book, and relaxing was shattered shortly after we arrived. We had a blast, but my relaxing vacation days are over for a while…and that is just fine. It’s been a family tradition since our beach going days began that the first stop is always Cracker Barrel. We filled up on biscuits, pancakes, bacon and eggs, and hoped this big meal would make all the kids pass out for the remainder of the trip…our plan didn’t work.

Lily and Charlie

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Nora and Lily
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Our days consisted of lazy, balcony sitting, coffee drinking mornings that were followed by trips to the pools, lazy river, or beach. Lily is a cautious child. With her arm floats and ring she would enter the 1 foot deep kiddy pool and yell, “Mama, look how brave I am.” It made me laugh.

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We went to Lulu’s for dinner. This is a great place for the kiddos.

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We went to an alligator farm which proved to be a neat adventure. The kids got to pet and feed the alligators. We went during a feeding time and watched as they fed an entire pig to the alligators.

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…did I mention that Lily is a cautious child? Our next stop was Lambert’s where the rolls are as large as a child’s head – literally.

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Louis joined us at the end of the week, and we were all thrilled to see him.

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Overall, we had a great vacation! We ended the week with breakfast at Tacky Jacks.

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Down Syndrome Awareness Month

The National Down Syndrome Society (NDSS) has declared October as Down Syndrome Awareness month. NDSS kicks off the month in New York’s Time Square with a Buddy Walk and huge celebration. Before David was born I knew very little about DS. This month I want to include post that are both informative and inspirational.

Here are some quick facts about Down Syndrome:

~Down Syndrome occurs when an individual has a full or partial extra copy of chromosome 21. This extra gene can be passed from either mother (95%) or father (5%).

~1 in every 691 babies in the United States are born with Down Syndrome. There are 400,000 individuals living in the US with DS and 6,000 babies.

~80% of children born with DS have mothers under the age of 35

~there are three types of DS. Trisomy 21 is the most common accounting for 95% of DS cases. Instead of the usual two copies of the 21st chromosome trisomy 21 individuals have three copies of the chromosome.

~In 1866 an English physician, John Langdon Down, published a study on individuals with the extra chromosome. He is now considered the “father” of the syndrome.

~common physical traits include: slanted eyes, short stature, low muscle tone, a single deep crease across the palm of the hand

David has the most common type of DS – trisomy 21. Here he is at the beach showing off his extra gene.

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Moving On

Our Sunshine couldn’t be doing better, and I continue to be thankful, thankful, thankful. Today marks 5 weeks since the heart surgery. We saw our cardiologist last week, and David received a great report. He had gained over 2 pounds since surgery and grown an inch – on the down syndrome growth chart he is in the 75th percentile in weight and 90th in height (this is pretty significant for a heart baby). All his vitals where perfect. The ECHO did show moderate leaking on the left side of the heart, and Dr. Lee said he would continue to watch the leak as David grows. We are praying the leak will heal or never require attention. An additional surgery will be needed if the heart ever begins to dilate from the leak or if David begins showing symptoms. I was surprised when Dr. Lee said he would see us in 6 months. WOOHOO!!! We also saw Dr. Feliz (Hirschpreung’s surgeon) who gave us nothing but good news and sent us on our way for 3 months.

David has physical therapy twice a month right now, and Louis and I are very pleased with his progress. We celebrate as David makes new discoveries. In the last few weeks he has started to reach out and grasp items that are close by – my glasses, Lily’s hair, he particularly likes Louis’ beard. He is so close to rolling over, and when he does I’m pretty sure this mama will break out in a happy dance! Many children with DS have issues with different textures – this is true for food and touch. It is recommended that foods are started at an early age so that an oral aversion to texture does not developed. I bought some organic oatmeal cereal, and I nearly cried last night at his first feeding. HE DID GREAT! Half way through the feeding he was waiting with his mouth open for the next spoonful of cereal. This is a mercy – no gagging, spitting the food out. His feet start kicking with excitement as he waits for the next bite. Louis, Lily and I have become David’s cheerleaders. We find joy and thankfulness in the small things, because we have learned there are NO areas of our lives that should  be taken for granted.

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I feel like we are finally moving on. Our focus has shifted from health issues and heart surgery to just living our lives. We have settled into a normal routine, well as normal as it gets with two small children. I spend my days with Lily and David, and they are good, crazy, wild days. Days where we do the same thing over and over. Days I wouldn’t trade for anything. Days where I don’t miss anything because I am blessed to be a stay at home mom. Days where we all wait for Louis to arrive home from work. Days where Lily runs out the door yelling, “Daddy is home.” This proclamation is usually followed by. “I want a piggy back ride or let’s play mad dog or let’s mouse hunt.” (explanation – we just finished Little House in the Big Woods. Pa plays mad dog with the girls. Lily wants Louis to play and she loves it. Mouse hunting is a favorite. Louis and Lily get flash lights and look around for a mouse. Much to her disappointment, they never find anything.) Our family of four is just that – our family. I love my little family. I love being a wife. I love my husband. I love my two children. We are moving forward…

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