So today is the first day of my CHD awareness week of posts on Facebook. Looking back has been a fun, yet hard, time; reviewing memories and heartache. As I look back on the last almost 7 years, I am grateful for all of the memories that I have got to experience with Lillyann. Every year I celebrate her birthday and enjoy looking over pictures of her as she grows.
Today I tapped into the "what is it" kind of thing. I explained HLHS and what the process is. Over the next few days I will continue to post my memories and the pain that we have endured as a family.
I am grateful for her doctors who have supported my decisions over the years about her care. Who can ease my fear with a quick 10 minute check-up to assure me that she is okay. The nurses that take that extra time to give both Lilly and myself a hug after every appointment. Doctor Julie Dietz that hugs me and assures me that I am doing a great job as her mother.
Sometimes I seem like I have it all together. I know everything that I have mapped out in my head doesn't always work but I still try to keep a calm head. I still need that little boost of confidence that allows me to cry out my worries and fears to begin the next step and move on.
We set up this blog to update about Lillyann's struggles and triumphs with Hypoplastic Left Heart Syndrome. Born March 24, 2009 ~ 1st heart surgery (Norwood) April 1, 2009 ~ 2nd heart surgery (Glenn) July 10, 2009~ G-tube placement September 22, 2009 ... 3rd heart surgey (Fontan) Sept. 11, 2012.
Monday, February 8, 2016
Monday, February 1, 2016
3 Years Later...
Ok, yeah, I know it's been a while. No news is good news though! Nothing major with Lillyann over the later 3 YEARS! So... Let me tell you what has been going on...
After the Fontan, and the few incidents here and there, nothing serious. Let me think that far back. Lilly is still a little peanut, I think we just hit 28 pounds at her 6 year check up. We have had a string of random sicknesses, nothing hospitalizing. Her O2 stat is starting to lower ( I think we are around 78 right now), we are just monitoring at home. She was in dance two years ago and now it is horses. She has George (the pony) and Rebel (the horse) and is actually really good. She rode in the Light Up the Town Parade in Chippewa Falls for Christmas. And held herself in the group well.
Boy is she a ham! Loves water, animals, us and everything about life. She lives life to the fullest and does not skip a beat.
Dylan is now in 3rd Grade and I ask him how old he is a lot, because I can't believe how fast they are growing. he loves football, hunting, and archery. I think with all that happened to him when he was younger (having mom away and being a big boy with Lilly) he is mature for his age but has very strong feelings. He does not to be in trouble or see someone he loves get into trouble.
He had a spout of some learning problems but has come out strong, like I knew he would. I am proud of the young man is is turning out to be.
And the newest member, Gage Mathew. A raging ball of demonic cuteness. Wow... He is a spitfire. Like a sour-patch kid. He is definitely his own person, wants to do his thing and no, you can't help. But, then he wants to cuddle all night long.
After the Fontan, and the few incidents here and there, nothing serious. Let me think that far back. Lilly is still a little peanut, I think we just hit 28 pounds at her 6 year check up. We have had a string of random sicknesses, nothing hospitalizing. Her O2 stat is starting to lower ( I think we are around 78 right now), we are just monitoring at home. She was in dance two years ago and now it is horses. She has George (the pony) and Rebel (the horse) and is actually really good. She rode in the Light Up the Town Parade in Chippewa Falls for Christmas. And held herself in the group well.
Dylan is now in 3rd Grade and I ask him how old he is a lot, because I can't believe how fast they are growing. he loves football, hunting, and archery. I think with all that happened to him when he was younger (having mom away and being a big boy with Lilly) he is mature for his age but has very strong feelings. He does not to be in trouble or see someone he loves get into trouble.
He had a spout of some learning problems but has come out strong, like I knew he would. I am proud of the young man is is turning out to be.
And the newest member, Gage Mathew. A raging ball of demonic cuteness. Wow... He is a spitfire. Like a sour-patch kid. He is definitely his own person, wants to do his thing and no, you can't help. But, then he wants to cuddle all night long.
As the family, it hurts me to say that Paul and I are no longer together. Surprisingly, the divorce was an easy adjustment for the kids and we are all happier now. I am with a very nice guy (Chris) with two kids of his own (Dylan and Mia)(my Dylan we call 'Buck' just to keep the boys straight). Chris and I added a couple more to our "Full House". Mac (the dog) and Cheese (the cat). The two of them make the family really complete. Welcome to our crazy life and we love every minute of it.
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