2 1/2 years later...eating remains the challenge

 

Calories Calories Calories....
Sophia is doing really wonderfully. Since around December of 2011 Sophia has been eating all on her own (she has not received any nutritional supplements through her g-tube since December and at Easter of 2012 her g-tube was removed). One of the fall backs of the g-tube being removed is that we can no longer easily give Sophia nutrition if she does not eat well, or if she gets sick so our focus has to be to make sure she does get enough calories to keep growing successfully. There are many plus sides to having the tube removed, including not worrying when Sophia (our little monkey)plays, romps, climbs and having the tube accidentally pulled out.

If any of you have ever had or been around a two year old you will know that they don't have time to eat... it is all play play play. So with this said you have to be really creative and have food on hand all the time. We have been told that to keep her growing that she should eat 1 1/2 times the amount that a typical child would. Why you ask? This stems back from when she was developing and her lungs were impacted. Having only 60% of one lung makes it so she breathes faster, thus she burns more calories then a "typical child" (if there is really a typical). Since she burns more she needs more.

Sophia tends to get all of the things that are yummy, creamer, butter, hot dogs, candy, shakes...Not to say that she eats all junk food, she also likes broccoli, cheese, milk, water, grapes, raisins. I would have to say her favorite thing though is Mac n Cheese.

Staying creative is one way we get her to eat as well, she really likes silly food, like ginger bread shaped french toast( made with colored bread), and doodle pancakes( draw with one color batter and pour white batter over the top), We also  tend to leave food out for her so she can munch any time she is hungry. The trick is doing it so our puppy friends don't also get a snack ;)

Sophia is just finally 25 lbs, she is slow to gain weight because she is such a busy body. In this society where obesity runs rampant you'd think being very lean would be good, and it is, but there is a risk if she gets sick, she doesn't have the cushion of a little extra weight that other kids have, so we have to keep an extra close eye on her.

sophie growing up

 

Sophia is doing very very well!  She had a check up in April of 2012 and Cincinnati Childrens was very happy with her. The Cartiologist wanted to get a baseline image of her heart function, this would be done with a Heart Cath. Due to being a little nervous about the procedure we waited and had it done at the end of summer. Labor Day weekend we headed to Cincinnati and had the procedure done. We were once again lucky enough to stay at our home away from home (the Ronald Mc Donald House). Soph had four hours of appointments the day before her heart cath and we went in at 5am the next day for the procedure. I have to say everyone was wonderful once again, the doctors, nurses and support staff. By 8am she was asleep and on her way to the Cath lab. After several updates I went to the recovery room to see her and walked her back to her room (by noon). We had to wait four more hours and keep her still and flat on her back, that was nice and easy since she was coming out of sedation. During that time we recieved wonderful news that Sophias heart function was much better then CDH kids typically are. Her arteries in her heart do not constrict while under stress. they let blood flow through and  She has good strong vasculature in her smaller lung. To make a long story short. If she can't keep up with brother it is not the health of her heart keeping her back. GO SOPH!