Friday, October 8, 2010

One on One

Sophia and I had a LONG day today. We left for Indy at 7:30am and got back home around 4:15pm. It was a very successful trip overall, but very tiring. We saw the cardiologist today and had a chest xray done as well as an EKG and everything looked and sounded great! It looks like we may be an annual patient now, instead of every 3-6 months! We don't have to go back till next October! Hurray for healthy hearts :) We also met with our speech pathologist and she was very helpful in giving us new ideas and techniques to try with Sophia as far as feeding goes. There are many days where I just want to throw in the towel on this feeding stuff, but of course I know that isn't an option, but after today I feel a new sense of hope that we can overcome all this. A lot of her feeding issues come from the fact that she is still gaining muscle tone in her mouth and throat and as she gets bigger and develops more tone things will hopefully start to improve. She also has no desire to eat, because she's never hungry and as far as she's concerned there is nothing out there worth the time, or effort, to make her want to eat. So we need to keep exposing her to different foods and textures and eventually it will click in her head that, "hey this piece of cake is worth eating" :)
There is nothing more that I love than spending time with my girls, together. But it's so nice when I get those moments to share with each of them one on one and devote all my attention to either Jayden or Sophia. It makes me feel so much more connected to each of them, when I can really focus on just one or the other. Yesterday was Jayden's day where Karla, Sophia's nurse, was here and Jayden and I got to spend our one on one time together. We went walking on some trails, played at the park together and then she found some friends to play with on her own and then we ended our afternoon with a snack on a swing and a stroll around the park. Jayden in the stroller relaxing and Mommy pushing :) It was nice and drama free and that's what we like! Today, Sophia and I traveled, just the two of us. We talked and played while we waited for xrays and doctors. And we even had some spare time to go outside in the warm sun and play in the grass, or dried up straw stuff. It's nice being able to connect with one girl or the other without interruptions. But by the time we arrived home today, Jayden and Sophia had obviously missed each other terribly :) Jayden was all over Sophia, and Sophia just couldn't get enought of her big sissy. Jayden had Sophia cracking up like crazy and Sophia was on turbo speed trying to keep up with Jayden moving all around the kitchen. I love seeing my girls like that, together and playful and laughing. It reassures me that everything really will be okay :)

My Down syndrome fact of the day is from and it says: "While most children with Down syndrome have no significant medical problems, others may experience a variety of medical issues that require extra care. For example, about 40% of all children born with Down syndrome will have a congenital heart defect. Some of these defects are mild and require no treatment and others are more severe and may require surgery and medical management. However, it is important to remember that if 40% of children with Down syndrome are born with heart defects, that means that 60% of children with Down syndrome do not have heart problems." It definitely seems to be any way that Sophia has had her fair share of medical issues; a blockage from her stomach to her intestine and surgery for it at 2 days old. All the feeding issues we've been dealing with along with the feeding tube itself. Oxygen, sleep apnea and a congenital heart defect known as an AV Canal. Although all of these are more common in kiddos with Down syndrome, they aren't seen in only kiddos with Down syndrome. Kids can have any of these issues, no matter who they are. The most important thing is that Sophia is now healthy and growing and will be able to do just about anything that her little healthy heart desires. We still have some issues to work through, and maybe another surgery in our future, if she has to get her tonsils and adenoids removed, but overall she is doing wonderfully and will continue to grow and thrive till she's a little old lady :) And for that, we are truly thankful!

No comments:

Post a Comment