Casey and Connor are making huge strides every week. Connor is finally opening up verbally a little- he now says baby and he is beginning to walk more to keep up with his brother. Casey says dada and no and yay- though they both throw out words every once in a while that surprise both of us- Casey said down and Connor said toes but only once each.
This week both of our miracle men went down the stairs for the first time. That was a heart pounding experience for mom, believe me!
I never have posted much about the feeding issues we have with C&C but they are both incredibly picky eaters and refuse about 95% of what we offer them. They like crackers and toast and dry cereal. Rounding out their diet is yogurt and applesauce and an occasional chicken nugget but that is rare and only Casey eats those. Connor has lost some weight and we are constantly trying to figure out what they may eat. It turns out Casey is a HUGE fan of the chocolate chip cookie. See pictures below.
Connor is not a fan of the chocolate chip cookie. Note how clean he is after throwing said cookie to the dog.
And the search continues for more foods that these two will eat. It's an adventure.
In other areas of our lives- On January 24th, Declan Simon, a good friend of my family died. He had battled cancer for a long time but was taken by a staph infection he got while in the hospital. It was a big loss for many including my mom who had known him for many, many years. Declan was a good hearted man, a devout Catholic, an amazing drummer, a great father and friend and most importantly an outstanding person. He was also a big advocate for Down syndrome, volunteering at many events hosted by the Up Side of Downs. He was very much looking forward to the Buddy Walk this year. He adored Casey and Connor and they adored him. Declan was laid to rest wearing his blue and yellow Buddy Walk/ Down syndrome awareness bracelet. He is greatly missed.
Finally, I want to take this opportunity to let you all know about a very special little girl who lives just one town over from my family. Her name is Quinn and she is 5 months old. Quinn has Junctional Epidermolysis Bullosa. I first learned of EB on the blog "EB"ing a Mommy- http://randycourtneytripproth.blogspot.com/ - Tripp Roth was an inspiration to many and his mother, a true hero in every sense of the word. I cannot fathom what Quinn and her family are going through with this awful disease but I want them to know that they are not alone and that there are people praying for them. Please keep them in your prayers. Locally, there will be a spaghetti dinner to benefit this little angel. If you would like to help and are not in the area to attend the dinner you can send a donation to:
Quinn R. Seymour Benefit
℅ Knights of Columbus
P.O. Box 2189
Hudson, OH 44236
Every. Single. Dollar. Helps. I realize that times are tough but having a child with extreme medical issues trumps most financial concerns the majority of us have. If you can help- please do. If you can't help financially share her story and hopefully someone you know can help. Thanks so much. If you would like to learn more about Quinn she has a Caring Bridge page that can be viewed here: http://www.caringbridge.org/visit/quinnseymour . You will have to create a Caring Bridge login to view but worth it to follow her story. She is stunningly beautiful.
Ok friends, thank you for reading. Thank you for sharing in our journey. Every view of our blog warms my heart. Emails and comments ALWAYS welcome to meghan_wilkinson10808@yahoo.com
xoxo.
3 comments:
Will gladly add Quinn to my ever-growing prayer list, right alongside Casey, Connor and baby Reagan, as well as their remarkable parents. Meghan, if the boys like applesauce and yogurt, you might try adding Beneprotein powder to those to boost their protein intake. Have you tried cottage cheese (small curd)? I know Nolan likes pierogies, and Kraft Macaroni & Cheese. Sorry there's no magic solution to feeding issues, but some kids like scrambled eggs with cheese or a little jam or grape jelly. Am sure you will find some new favourites as their taste buds mature. Meanwhile, just know I'm praying.
cant wait to see Reagan, I am partial to the name as it was my grandmother's maiden name, my middle name and my oldest daughter's name... spelled Ragan though:)
So sorry for your loss of such a sweet friend.
EB is such a horrible thing, baby tripp fought hard, we participated in a couple of fundraisers herefor him. My prayers are with this family and little one
Have a great rest of your weekend:)
Oh the food wars! We have them here too. My little guy likes cereal, chips, cookies, a few fruits and not a lot else. It is hard! Our kiddos take 'picky' to a whole new level. :)
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