I’ve been watching, waiting, coaxing, praying and it happened today…
Lily and I were playing with David and just like that he rolled over – twice. We broke out in wild cheers. We hugged. I cried, and Lily couldn’t have been any more proud of her little brother. The average age for a child with DS to begin rolling over is 8 months. David will turn 5 months this week.
The Lord continues to show Himself mighty in all areas of our lives.
Lily turned 4 on August 31, and we celebrated pirate style. She was insistent on a unicorn birthday party and tried her best to convince me she had developed a deep love for unicorns. I suggested a pirate party and the planning began.
We dressed up! Pictured pirates – Yes, that is my mother. Charlie, Nora, Lily, Abi Grace, and Morgan (or MoMo as we affectionately call her).
Charlie and Darby McCoy
Nora ( AKA – Nora Kat or Little Squirrel)
Louis was in charge of the treasure hunt.
The birthday girl – Lily Karen
And of course we had to have a parrot pinata.
Abraham Ewing – our only nephew. We have 8 nieces. Poor little guy!
The birthday cake, which I could have never pulled together without Andrea’s help.
Here is the birthday girl who change my life forever four years ago. Lily made me a mother and was an answer to many prayers. This energetic, loving, happy, sweet girl is a constant source of joy to both me and Louis. She makes us laugh and brings us great pleasure as her parents. We can not imagine life without our “sweet pea!”
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.
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…