Thursday, March 31, 2011

This Weeks Appointments

On Monday Stephen had his physical and speech therapy evaluation (a 2 hour appointment), Tuesday was labs at the hospital, and yesterday was our weekly 2 hour nephrology appointment. Today we are going to the g-tube clinic for the first time. So we've had a busy week here in the Schwartz house. Luckily I've had some awesome helpers this week! My mother-in-law Tish came over on Monday to help with Stephen and tom occupy Mabel during the therapy evaluation and my Mom came down from PA yesterday to help occupy Stephen at our appointment.

Because of Stephens lengthy stay in the NICU, he qualifies for the PIE program; a program run by the County for Parent-infant education that aims to help kids with developmental delays. Luckily Stephen is pretty much right on track with all his developmental milestones, but we need to work on getting more movement in his arms, shoulders, and hips and also getting him to open up and relax his hands some more. But considering his movement was severely restricted in utero without amniotic fluid and having IV and lines in his arms for over a month, he's doing fantastic! And he totally showed off for the therapists on Monday by smiling big at his toys, holding his rattle and responding beautifully to my voice and face. It was so awesome to see him do so well!

We came up with some great goals for Stephen to achieve throughout the coming year and will work with a physical or occupational therapist every other week for the next couple of months and then once a month to work to achieve those goals.

Our nephrology appointment also went really well. They think Stephen's dialysis is going really great and his labs came back good as well. His sodium levels are much better than last week and his liver appears to be functioning great as well. And better yet he's gaining the good kind of weight, not fluid weight, and he's getting longer! He's up to 11 pounds 15 ounces and he's over 57 cm long. We are now over halfway to getting his kidney!

Update: G-tube clinic went really well today too. His g-tube looks great and I learned that I'm not actually supposed to check the balloon weekly and I should be changing the extension tube weekly. I hadn't received any extension tubes from Apria, so they'll fix that for me. Oh, and we aren't supposed to be cleaning the site like we are. Probably would have been a good thing if the g-tube clinic people had visited us in the NICU before we left to tell us these things. But at least we know now, right? And we won't need to see them for three months. YEAH! Oh and the bleeding thing is normal when you replace a g-tube. She said it's normal to have some bleeding for a few days when you put it back in. Good to know!


  1. Hi Lindsey, Delighted to learn of Stephens progress. What a man! It sounds like you are the greatest Mother in the world! I bet that is what he says to himself when he goes to sleep at night. Keep up the good work and we will all keep up the prayers. I am so happy for you! XO Mrs. Boyle and Eamonn

  2. hi guys - just wanted to say hi and let you know that i've been thinking about you. stephen looks amazing. and it sounds like you all are going well. we miss you here in the nicu - but so glad you are home and well!!

  3. How amazing that a baby can do so well without kidneys! My son Harris is 14 months and is on the liver transplant list. He has a rare liver disease called biliary atresia. I know how strong these little guys can be. I found your blog through Danielle Hobbs. Take care.

  4. I discovered your blog through a friend's link on FB - I'm guessing you might be a friend of a friend? In any case, I work for Arlington County DHS, and am glad you got linked up with the PIE program. It's a great program; I know the program supervisor well, and she is really invested in "the babies" and her program.

  5. So good to hear that our "Superman" is doing well. I think it is from all of the love and TLC he is receiving from Mommy and Daddy!!
    Aunt LuAnn & Uncle Dick