Wow! This has been a crazy month. At the beginning of the month we went on a seven day cruise with Gene's parents and sister. We had a wonderful time visiting St. Maarten, Puerto Rico and Haiti. It was nice to get away and just relax....okay relax as much as you can with a one year old. Still, Tristan did much better than we anticipated and we look forward to going on another one soon (?).
Next Ann's Dad and Step-Mom came to visit. Tristan had not seen the Schroeder grandparents since May 2011. We were not sure how long it would take him to warm up to them, but it seemed almost instant. We had a wonderful time spending time together. The weather was perfect for a day at the beach and checking out the manatees. Time flew by quickly and before we knew it, it was time to say goodbye. Ann's Mom and Step-Dad were supposed to visit a day later, but with battling sinus infections they decided to post pone their visit.
We look forward to the return of Gene's sister and Mom in about 2 weeks. We truly enjoy friends and family making trips down to see us and we appreciate all the time and effort everyone has made to make it happen.
Tristan is battling his third cold of the season. It's been a week already and it has only gotten slightly better. His nose is like a faucet. His demeanor and energy level is normal and his lungs sound clear so we think this is just a typical childhood cold. His solid food intake has dropped, but he is at least still taking the Pediasure...with some encouragement and convincing. He had another GI appointment last Friday (1/27/12). In three weeks, Tristan had only gained one ounce. One lousy ounce. The MD decided to chalk it up to the cold and we will revisit him in a month. We were instructed to weigh him weekly. If we did not see an increase or if he loses weight, we are supposed to call the MD to get him in sooner. Here's hoping to be above the 20 lb mark by Feb 24th!
When we got back from the cruise, Tristan also had his sedated ECHO. The results are good. His heart looks stable and no real changes to worry about. We go back in three months for another check up.
Soap box Alert....
Okay, the dreaded awareness talk. I promise, I only say this once at this time of the year. February is Heart Awareness Month. February 7th-14th is specifically Congenital Heart Defect Awareness Week. A small reminder that 1 in 100 babies are born with a heart defect. More children die of a Congenital Heart Defect (CHD) each year than all pediatric cancers combined. Yet research for pediatric oncology gets 5 times more money. But wait!!......what about The American Heart Association, don't they do a lot of good? Yes! They do a lot to promote public awareness, but The American Heart Association directs only $.30 of every dollar donated for research. The rest of it goes for administration costs, education, and fundraising. Of that $.30 only $.01 goes toward CHD research. (http://www.itsmyheart.org/chd-information/chd-facts/). No, I don't want money taken away from pediatric oncology research. I just want more research money being used for CHD.
We all hope and pray Tristan will live a long and happy life. The sad statistic is 50% of children with HLHS have a life span of about 10 years. If Tristan lives to be the same age as I am , he will be considered ancient in the HLHS world. I am asking everyone to spread awareness so that maybe....some day...... we will know what exactly causes HLHS and can prevent it....and maybe....some day....no child will have to fight for his/her life from the moment they are born.
Below are some pictures from the last month
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