Tuesday, October 11, 2011

Cardiologist, Pediatrician, and Urologist....OH MY!!

Excuse the lame title. It is my attempt to keep things upbeat.  I am having one of those days where I just wish it would all go away.  The health issues, the Downs (I always feel guilty saying this one, but I have to be honest.  One day I know it will be part of who he is and I will come to fully accept it, but I am not there yet), the doctors appointments, and the emotions that go with it all. I just want a healthy, happy baby that doesn't have to go through all of this.  Looking at Carson you would never know all the health issues he is dealing with.  He is the easiest, happiest, sweetest baby I know and it breaks my heart that he has to deal with all this.  I keep praying to God for understanding on why he has to deal with so much.  I also know things could be worse and try to count my blessings where we can find them.  He is such a joy and I know he will not only continue to bless us but so many others.

Last week we saw the cardiologist.  Things seems to be going pretty good on that end.  They didn't do another echo, but after listening to the heart everything sounds good.  We are thinking heart surgery closer to 1 year of age. 

We also saw the pediatrician for Carson's 2 month check up.  He has doubled his weight in two months!!  We no longer have to fortify his milk.  He is still having blood in his stools even with me off of dairy so we have to go see a GI doctor next Monday.  Please pray this is something minor.  The doctors do not seem very worried since he seems fine otherwise, but Mom is.  He weighs 10lbs and is 21.3 inches.  He is in the 50% percentile for weight and 25% for height on the trisomy 21 chart.  He is on the 10-25% for weight and 10% for height on the typical chart.  Trisomy 21 kiddos have their own growth chart so the doctor charts him on both charts.

Today we saw the urologist and come away feeling frustrated. Mainly because we were hoping for a definite answer to what was going to be done for the kidney and instead we found out they don't really know much more than we started with. We know the kidney is blocked, but we don't know where and we know it is functioning, but we aren't sure how much. The scan said 42% but the doctor seems to think it is closer to 20-25%. Sooo we have to do more testing. They are wanting to do a retrograde pylogram on him and a biopsy of some sort on the kidney. The question is whether to do the procedure and surgery together or do the procedure, digest the results, and than do the surgery at another time.

Carson is really such a huge blessing in our lives. He is such a special part of our family. His big sister Kaylee just adores him and we love seeing the two of them together. Carson has started smiling and it is sooo awesome to start to see his little personality develop.





2 comments:

  1. Oh Kelli, my heart just aches for you and for what you guys are going through. How you are feeling is completely understandable, and I hate for you to feel guilty for how you feel! It is natural for any mommy to want to take away the difficulties in their child's life! Of course you wish you could make things easier for your sweet baby and of course you're going to struggle to understand the why's and what if's. You are a great mommy, and both of your beautiful kids are blessed to have you. My prayers continue to be with you! I hope to see you and your two cuties very soon :)

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  2. Kate,
    Thanks for your sweet words. I really appreciate it. Sometimes being honest with yourself is so hard. I am so lucky to have a husband, family, and friends that I can be totally open with. I wanted so bad to edit things out of that post and Charles talked me into leaving it. He said it is how I feel and I needed to be honest. Ha, it is too bad life doesn't have an edit button.

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