2 years ago, about this time, life as we knew it was...normal. It is unreal to think that 2 years have passed since Reilly, for lack of better words, exploded. Today, she is having the time of her life on her 101st day of school. Big celebration yesterday for being 100 days smarter. She has tumbling tonight and is preparing for her review this summer. Big girl gets her medicine and writes it down herself. She wants to be dropped off in the back of school, to walk in by herself, because, with her hand on her hip, she says "I'm not a baby anymore."
And she's not. She's a big girl, in more ways than she can possibly understand. Reilly has experienced unbelievable medical situations. She charms most everyone and takes each step in stride. To see her, unless you know, there are very few outward indications that things on the inside aren't so right. And granted, my girl is doing AMAZING. She feels fine, she feels normal (half the battle in my book). She acts like a very precocious 5 year old is supposed to act, except she takes medicine every day and sometimes has to remind us not to forget. She closes her eyes and almost never cries for weekly bloodwork (though we do get to do it at home through a finger prick most of the time now).
I would like to think that it is a testament to fantastic parenting, but in reality, Reilly is a testament to God's amazing grace. Who would have known that Dr. Noel would be on-call that Monday night. Who would have suggested to us to seek out world-reknowned physicians in Chicago that specialize in just this type of thing. Who would have known that these kind, compassionate, knowledgeable people would quickly become such an integral part of our lives. She smiles through the adventures and burgeons my strength when I just want to cry because there is nothing further I can do. I cannot make this go away. I have to place my daughter's life, her health and well-being, in the hands of doctors and specialists and trust that my research, knowledge and their expertise combine to make the right choices.
Then, I think about it and I am just thankful. I'm thankful that we get to enjoy this wonderful little person who makes us laugh, makes us go crazy, and who you can't help but grin and giggle with. Such joy. And so, today, on this 2 year anniversary, I'm happy with the way things are.
I have learned so much these past two years...
I know a lot of stuff about the human body that I never cared to know. I know that the best way to combat fear is with knowledge and preparation. Feed your curiousity and take away the unknown. Once you make a decision, do not second guess yourself - seeds of doubt will make you crazy. The people that I love the most are the ones that give me hugs and make me smile when I don't even realize I need to. I've learned that if you make enough noise when things aren't going right, someone that can help usually pays attention. I've learned that you cannot, for one second, forget about the "medical situation", but sometimes it is perfectly fine to go out and party like a rock star and own the moment. She may not ever get the opportunity to experience that again, so if you are going to do it, DO IT RIGHT and DO IT ALL THE WAY!!! I know that some of my favorite times with my kids involves really loud music and dancing like fools in the kitchen. Everyone should try it, I can think of no better way to cook dinner. I have learned that I have really amazing and spectacular family and friends.
Reilly goes back to Chicago in just under 2 weeks and then we will mark her 1 year date from her surgery. Time is flying by!
Thursday, February 28, 2013
Thursday, February 7, 2013
It's Been A While...
It's been a while since my last post. Sorry about that, but sometimes, life gets in the way! I can't complain, though.
Reilly's visit to Chicago in December went fairly well. Her shunt is still clotting in the same area so in March she will undergo interventional radiology therapy (they will access her shunt through a vein in her leg and balloon it and clean it out) at her follow up visit then. Hopefully, that solves the problem and we will continue as normal (well, normal now!). I'm not going to talk about if it doesn't work because I'm keeping a positive mental attitude and I don't want to talk about that anyway.
Reilly is feeling fabulous and seems to be meeting milestones. She is in the 25% for height and 5% for weight. She saw Dr. Noel this week and it was a GREAT visit. She gained 3 pounds (which brings her to a whopping 38), and will return to follow-up shortly after her March visit to Chicago and then hopefully not again until around October! Her INR (clotting time) has been all over the place, but her ammonia levels have been staying low and well within normal limits since November! It's amazing, really.
On a side note, the kids got to pet one of the Budweiser Clydesdale horses at Children's Hospital NOLA the other day after Reilly's appointment. HOW COOL IS THAT?!?!?!?! It was awesome. I love what they do for kids there! I love that the community partners to give children and their families really amazing experiences and memories. Definitely a neat thing to pet a giant horse under the front portico of the hospital, germ wipes and all!
Reilly can read now. Yep, she felt like she won the lottery when she informed us that she can read, and read to us from her book the first time. I LOVE that she has such a fire for learning! This year of Kindergarten has really helped her bloom and blossom. She is still sassy and still hysterically funny, but she is now a little girl and no longer a baby. (Just ask her, she will tell you).
All things considered, Life is Good right now. We actually even made it through the worst of the flu season with not even a runny nose in the entire house! Unbelievable. I will cheer for the smallest victories! (Even though I am probably jinxing things just by posting that). The kids have been to the parades, I think Reilly was Cole's biggest cheerleader when he got to march in one of the parades this year. Someone screaming for you like that has GOT to feel like being a rockstar!
I apologize again for the delay in posting, but we have been busy making lots of memories and enjoying the holidays, SuperBowl, easing in to Mardi Gras and getting ready for Valentine's day! Please continue to keep Reilly and our family in your thoughts and prayers. She is making progress every single day, but she still has some hurdles to overcome and you can NEVER have too many prayers!
Reilly's visit to Chicago in December went fairly well. Her shunt is still clotting in the same area so in March she will undergo interventional radiology therapy (they will access her shunt through a vein in her leg and balloon it and clean it out) at her follow up visit then. Hopefully, that solves the problem and we will continue as normal (well, normal now!). I'm not going to talk about if it doesn't work because I'm keeping a positive mental attitude and I don't want to talk about that anyway.
Reilly is feeling fabulous and seems to be meeting milestones. She is in the 25% for height and 5% for weight. She saw Dr. Noel this week and it was a GREAT visit. She gained 3 pounds (which brings her to a whopping 38), and will return to follow-up shortly after her March visit to Chicago and then hopefully not again until around October! Her INR (clotting time) has been all over the place, but her ammonia levels have been staying low and well within normal limits since November! It's amazing, really.
On a side note, the kids got to pet one of the Budweiser Clydesdale horses at Children's Hospital NOLA the other day after Reilly's appointment. HOW COOL IS THAT?!?!?!?! It was awesome. I love what they do for kids there! I love that the community partners to give children and their families really amazing experiences and memories. Definitely a neat thing to pet a giant horse under the front portico of the hospital, germ wipes and all!
Reilly can read now. Yep, she felt like she won the lottery when she informed us that she can read, and read to us from her book the first time. I LOVE that she has such a fire for learning! This year of Kindergarten has really helped her bloom and blossom. She is still sassy and still hysterically funny, but she is now a little girl and no longer a baby. (Just ask her, she will tell you).
All things considered, Life is Good right now. We actually even made it through the worst of the flu season with not even a runny nose in the entire house! Unbelievable. I will cheer for the smallest victories! (Even though I am probably jinxing things just by posting that). The kids have been to the parades, I think Reilly was Cole's biggest cheerleader when he got to march in one of the parades this year. Someone screaming for you like that has GOT to feel like being a rockstar!
I apologize again for the delay in posting, but we have been busy making lots of memories and enjoying the holidays, SuperBowl, easing in to Mardi Gras and getting ready for Valentine's day! Please continue to keep Reilly and our family in your thoughts and prayers. She is making progress every single day, but she still has some hurdles to overcome and you can NEVER have too many prayers!
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