Monday, October 17, 2011

11 weeks old

We had an awesome weekend.  We finally got to go out of town for the weekend.  It was so great to see friends from both high school and college and to see all my family.  We went to Kingwood for our good friends surprise 30th birthday party and it was such an great reunion of old friends.  My uncle brought my grandma to Kingwood to meet Carson for the first time, which was another very special moment.  It was so great to not have to think of all the doctors and medical stuff and just get to enjoy the weekend with people that I love.

Today we went to the Pediatric GI doctor for the blood in Carson's stools.  He was wonderful if anyone is ever needing a GI doctor.  After listening to me explain what was going on and doing an exam he said it was one of two things, both minor.   YAY, for something final being minor.  One is that it still could be an allergy of some sort, but it would be really minor since he isn't really having any other major symptoms.  They really don't have anyway of knowing what it is and I could try a allergy free milk, but he doesn't really know if it will help and would rather him get the breast milk.  Since being off of dairy wasn't helping he said I could enjoy it again...YAY again.  Now he did say if he gets worse when I get back on it to get off of it again.  The Second thing that could be causing it had some big fancy name (as he put it) but it basically means large lymph nodes, small hole.  Babies have large lymph  nodes as their body develops it immune system and their intestines are really small so the bowel can rub up against them and cause the streaking of blood.  He said as long as the blood is random, doesn't get worse, and Carson seems fine we just keep doing what we are doing.  The Dr. believes that either scenario will be out grown around 6 months.  I really hope this is true.  Praise for good news today.  Ha, For now, I am going to ignore the fact that he still has blood in the stools on occasion and just be thankful that it isn't anything major.

Many of you have been asking about supporting the Buddy Walk in Carson's name.  One way to do it is to order something from www.pamperedchef.biz/dhawks and enter Buddy Walk as the Organization and a percentage will be donated to the Buddy Walk or you can donate online at https://bos.etapestry.com/fundraiser/DownSyndromeGuildofDallas/BuddyWalk2011/individual.do?participationRef=607.0.364785124.  If any of you happen to be in the area we would love for you to join us for the walk on November 13. 

As always thanks for all the love and prayers.

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.