Thursday, July 29, 2010

7.29.10 - Check up and catch up!

Liam's cardiologist appointment went well today. This was only the second time he did not have an echo done....I worried the last time like I am now, but Dr. V assured me his heart looked good on the EKG and sounded great. He did say they are monitoring his pressures, given that the right side artery is narrowed some...How they do that without an echo befundles me...but I did ask if there is anything that could quickly take a turn for the worst, and he said not really, just a matter of how long the valve lasts. He reassured me that Liam looked great and we should come back in 3 months. I told him it was going to be strange not coming to see him every month as we have done for the past 10...sometimes even twice a month. But that is one place I won't miss, so yay for Liam!

Liam's weight, I wouldn't quite say is an issue yet, but he didn't gain any weight from the last check up a month ago, weighing in at 19 lbs. 13 oz. I had a feeling this would be the case, as I can tell his growth by how tight or loose his diapers fit and how much room is left in his little outfits. I have not noticed much change for the past couple months, and he has been in size 3 diapers for as long as I can remember, and they aren't getting any smaller on him! Dr. V didn't seem to concerned with this, however it is something he wants to monitor, as it should be. We are also going to start him back on the good ole 24 calorie formula to help things along. We started tonight, but not with great results....Liam threw up all over after his dinnertime feeding...not sure if it was the formula or me getting him a little too excited and wiggly after eating - wooops! I forget sometimes how fragile his tummy is! I felt bad...but he was VERY happy afterwards, so maybe he was too full after all! Whatever the case, hopefully the 24 calorie stuff will transition smoothly into our feeding regime and only help things along and not be a hindrance.

Then there is playing catch up...I feel like in every part of my life, I am playing a catch up game. With Liam, it is his weight and development, work is busy for me right now with our annual audit around the corner, TEAM LIAM is moving fast but there is still SO much to do, and the medical bills...that's a whole post in itself. Whew...I don't like feeling or falling behind. I know I'll get caught up and get to "that place" again, but right now, I'm running on all 6 of my 4 cylinders and trying to get there as fast as I can! But in the midst of everything and all the busyness, I do have hope, hope that the Lord is taking care of things and working it out before I get there. He is my beacon that keeps me calm in my storms...or tornadoes...whatever it ends up being.

One last thing before I get to my TEAM LIAM update. I created a new page called Advocacy. I posted on there instructions on how you go about writing your Congressmen to voice your concern and support for CHD funding and research. A blogger friend of mine (Thanks Stef!) posted this to her blog and made it so easy...too easy to not contact them frequently in order to spread awareness and get involved and raise support for CHD research on the political front. Obama's healthcare reform is REAL and it is affecting the lives of millions of Americans, we cannot take it lightly...not going to voice my opinions here, but whatever you believe in, we need to be telling our Congressmen about it, so they can advocate for us - THAT'S THEIR JOB!! Anyways, check out the page and feel free to forward any replies you get back to me. Here is one of the replies I received from my State Representative, Congressman Michael Burgess, below:

Dear Mrs. Johnson:

Thank you for contacting me regarding policies which aid those with congenital heart defects. I appreciate hearing from you on this subject.

As you may know, a provision in the new health law dealt with congenital heart defects by creating a National Congenital Heart Disease Surveillance System at the Centers for Disease Control to promote the coordination and expansion of the National Heart Lung and Blood Institute's (NHLBI) congenital heart disease research.

Although this provision was included, it is now up to Congress to appropriate funding for the Surveillance system and the NHLBI. The NHLBI was funded at $3.096 billion in FY 2010 and President Obama requested that an increase of $91 million to $3.187 billion in his FY 2011 budget.

As an Obstetrician/Gynecologist with over 20 years of experience and having delivered over 3,000 babies, I understand how devastating a birth defect can be to a family. I believe that increased research and surveillance of this disease will provide those afflicted with the much needed support they deserve. I assure you that I will closely monitor the Labor, Health and Human Services, Education Appropriations Bill for the funding levels of these two programs will keep your thoughts in mind when I have the chance to vote.

Again, thank you for taking the time to contact me. I appreciate having the opportunity to represent you in the U.S. House of Representatives. Please feel free to visit my website ( or contact me with any future concerns.

Michael C. Burgess, M.D.
Member of Congress
Pretty's my first time to write to them...I think I may start doing it quite often...Dustin would be so proud!

Wanted to mention a couple of things really quick. First off, I put the carriage before the horse in my last post and told you I was going to have a page on this blog that had all the TEAM LIAM updates...well, I can't do it the way I want, so we are creating a separate website for TEAM LIAM only. We already had the domain, so it should be up and running pretty soon. So bare with me for now!

Second and last, I have the first TEAM LIAM Running Team event that I would love for the team to run together. My thought was to have one race each month, starting in September, to get together and run. The race for September is going to be the Tour des Fleurs at the Arboretum in Dallas, on Saturday, September 18th. You can check out their website at I am waiting on my wonderful babysitters (love you Grandpa and Mimi!!) to let me know if they are available before I sign Dustin and I both up for it.

Thanks for everyone who is supporting our cause for TEAM LIAM!! We have an exciting season planned, so we hope everyone will get involved and make a difference!!

1 comment :

  1. Glad Liam's check up went well. Praying that he remains stable over the next three months until his next check up.

    I am so happy that you got a response from sending them a letter. I have yet to hear from any of mine. They tend to be a little slow. So GO YOU for getting a response already! YAY!!!