Wednesday, August 4, 2010

A Bump In The Road

I’m trying to stay positive in the midst of not so good news. Austin had a renal sonogram on Monday to see if his kidneys were still dilated. He had an appointment with his Pediatric Cardiologist on Tuesday. Austin’s Cardiologist has several different locations and she happens to be in the same office as his regular Pediatrician when she’s in our area. His heart appointment went well. The hole is still there and still the same size. There’s tissue in the hole and apparently, that COULD mean it may close on its own. Austin’s Cardiologist has a way of putting me at ease and I’m so thankful for that. The hole isn’t slowing him down or affecting his development. We’re still watching it and will be back to see her again in 6 months.

We saw Austin’s nurses on our way to the echocardiogram room. They love Austin so much and it really shows. The feeling is definitely mutual because Austin loves them too! They asked me to stop at their desk before we left. They informed me that they received the results from the renal sonogram and that his right kidney is better. However, his left kidney is still dilated and getting worse. They referred us to a Pediatric Nephrology doctor for his kidney issues. His nurses said they didn’t want to bombard me with news, but I actually prefer to hear this kind of stuff in person. They were able to give me all his paperwork from the sonogram, which was helpful. I called today and made his appointment with the Nephrology doctor. This particular doctor has awesome ratings and thankfully he’s NOT at Children’s Hospital of Dallas. We just don’t have good luck with that hospital or their staff.

We still have Austin’s Neurology appointment for the cysts in his brain on the 19th and that’s worrying me, as well. I know that typical children can and do have health problems. However, it seems like I’m reminded more and more that Austin’s different. It’s not necessarily that I see Down syndrome when I look at him. Sometimes I almost forget…then I’m reminded that with all the joy that extra chromosome brings us, it also brings scary health problems. I’m thankful that they don’t seem to be slowing him down. I know we’re blessed to have him and trust me, we’re so incredibly thankful. I guess it’s just difficult when it all hits you at once. ..heart, kidneys and brain. I have to put all my trust in God because I just might lose it if we receive bad news from the Neurologist in a few weeks.

My oral surgery went well. I was very impressed with my Oral Surgeon and his team. Unfortunately, I developed a dry socket about 2 days after my surgery. I had to suffer through it for a few days because Austin had 2 important appointments that we couldn’t miss and they could only see me at a certain time. Thank God they re-packed my wound (?) today. I actually have an appetite again and I don’t constantly feel like I’m going to pass out or get sick.

I feel like this post is a downer and I don’t mean for it to be. That extra chromosome still brings us FAR more positive than negative. I’m just in a scary place right now.


  1. Just wanted to let you know that I'm thinking about you and your family!

  2. That is a lot to take in all at once, and dont worry about the post sounding negative, we all use our blogs to vent, there are so many ups and downs in this that if we didnt write how we really feel we would probably go crazy! I pray everything turns out ok for little Austin :)

  3. I'm so glad you left me a comment. While I love all the T21 family, I really love finding babies that are close in age to Claire! I hope all of Austin's appts go well, the health issues with the extra chromosome are the worst...