I was just thinking that it had been awhile since I had posted on Addy's blog, but I didn't realize I hadn't posted since 5 DAYS after her Fontan! That just goes to show how fast time flies when life happens! Things have been phenomenal since then but I'm going to attempt to update on how everyone has been since then! So here goes!!!.......
Heath finished up school last August and is officially a PNP-AC. He recently accepted a job as the NP for a couple of great surgeons at Centennial Women & Children's that recently opened here in Nashville. It will be quite a role transition but he is really looking forward to learning a lot and helping to grow the program!
I suppose my excuse for not blogging is that I've been a bit busy myself with school since last August. I'm crazy enough to do the same program Heath did, also in a year! The timing of Addy's Fontan was CRAZY- we were in the hospital, still working, and I was going to class while she was inpatient! WHO DOES THAT? I KNOW?! But I'm trucking through it, one gruesome week at a time. I'll be done in August and will be starting my last round of clinicals in two weeks. I've traveled back and forth to Memphis & Knoxville for my clinicals so hopefully this summer at Cookeville will be a breeze since I'll be able to go home each night. It's been hell and I know that I've missed my kids a lot but I take comfort that it will all be over soon and hopefully life will...well, be a little less busy of a life.
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| Mommy and daughter pic, love those moments! |
We've had a few major holidays while I've been gone, here's the highlights of those!
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| The three very different personalities evident in this picture- plus Cookie, who Addy had hostage! |
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| First Halloween all three kids got to Trick-or-Treat! |
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| Ride 'em cowgirl, she is ready to tic-or-teat! |
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| First time coloring eggs, she was enthralled with the coloring and egg hunting! |
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| Love that girl! We chose to color eggs in just panties to avoid any new colored clothes! |
Maci....sweet Maci! We pulled Maci out of public school last October (yep, right after that Fontan) due to issues with the public schools...it'd be awfully hard to be a good mommy from prison after I've strangled one of those idiots at that school. It was a big decision and commitment but we have muddled through it! Maci has done surprisingly well- from not being able to read 3 letter words 6 weeks into 1st grade- she is now reading independently and doing 3 digit addition and subtraction! We have found she has some different learning needs that they just weren't meeting for her to succeed. Some days are still easier than others but overall Maci has really thrived being homeschooled! We have decided to put her back in private school next year though, simply for the social interaction. I will likely need to work full-time for a few years after graduating and there just isn't time to get her to practices, play dates, and the many other opportunities that I could take her to if I were home all the time. While she loves being at home with me & Addy, she is also super excited to meet lots of new friends! She also recently got the cutest pixie-cut you've ever seen on a 7 year old! After multiple bouts of critters that kept coming home from school, combined with her fine motor skills that lacked the ability to brush her hair well... I'd had it! She loves it of course- has the best collection of headbands ever, and really looks grown up these days! I'm so proud of the young lady she's becoming!
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| Working hard at homeschooling in the classroom! |
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| Her new adorable hairdo, no one could look cuter! |
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| Her 7th Birthday party at Mellow Mushroom, missing her 2 front teeth! |
Hunter- well, what can I say? Hunter is really growing up, I'm waiting for that 11-13 year old growth spurt because I'm pretty sure it's coming soon, but I'm not sure I'm ready! He's had his share of problems with school, mostly related to his lack of organization and accountability, but overall he's doing pretty well given the standard of the school. We have decided he will also go to private school next year so we're prepping him to be ready to step up to the standard of higher expectations at his new school. He is a huge help on the farm and for the most part he keeps everything running when dad is at work!
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| Looking all serious riding the bull....he stayed on < 3 seconds! |
And then there was Addy.....HURRICANE ADDY.....words can barely describe that child. For every feature that Hunter & Maci have, she is the exact opposite! So I'll fast forward really quickly back to Fontan and give you the cliff's notes version....the day we were supposed to go home we found a clot in her IVC on her exit echo. We were devastated, I really felt like that was the other shoe dropping that I was waiting for. The next few days included a lot of pokes for Lovenox and labs, but we finally made it home 13 days after her Fontan! We endured 6 weeks of those twice a day Lovenox shots before we switched to Coumadin. I'll be honest, I really dreaded that. I mean, 2 weeks before her surgery she was RUNNING down her slide on her LittleTikes playset and crashing into walls! How were we going to manage to keep this child alive on Coumadin without letting her kill herself with a bleed!? I really did expect it to be worse than it has been. We have only been to the ED one time for a bloody nose that wouldn't stop after her face met hardwood floor, and we haven't had to have any head ultrasounds yet! I've decided that there is no point in trying to slow her down, so I just try to at least have my eyes on her when she hits and runs into things so that I know which body part to inspect! We are now only on Coumadin and Lasix, and hoping to wean off that last bit of diuretic soon!
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| She is in full fledged princess dress up mode these days! She and Cookie have long great conversations together! |
Addy has turned into a full fledged 2 year old! She loves telling me No! and since now she gets in trouble for that, she has resorted to grunting "Ugh" instead when she refuses to do anything. I still remember that first conversation with Dr Kavanaugh in which she said she would likely be behind in her fine/gross motor skills, speech, and maybe even have learning disabilities. I'm pretty sure the only thing we may be dealing with is a defiance disorder! I feel so fortunate that we have been blessed with Addy's heart. She climbs like a monkey, runs like a elephant, and can out-talk anyone! She speaks in full sentences, knows her ABCs & colors, and is so smart sometimes that it is down right scary! I am reminded every day at work and clinicals how lucky we are that Addy has only had the heart problems, we have had no major complications or long hospitalizations, and that all other systems have worked well- most importantly her brain. She is growing and thriving since the Fontan! She continues to hang out on the growth chart around the 25-40% percentile, which I'm pretty happy with! Our Fontan miracle was that after her surgery, all of her shortness of breath completely disappeared! Dr Kavanaugh told us that in 20 years she has never seen something like her symptoms (which they had no clue what was causing them) that then disappeared after the Fontan. I don't know why it happened, but we'll take it! Only recently she has begun getting more out of breath again but she now has constant snot running from her nose and I'm afraid those adenoids are going to have to come out. They were nearly occluding her nasopharynx before surgery, and now we are off of all steroids since they gave her perioral dermatitis....so that means surgery to laser those babies out! That will have to wait just a bit while we acquire new insurance but I suspect it will have to come soon!
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| Poor Cookie, she just wants a little peace n' quiet! |
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| Princess Addy wearing a dress that Maci once wore! |
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Last fall Heath and I made the decision to try to become closer to become closer to our religion find a church for our family so that our children would be raised learning about the lord and how He wants us to live. We feel blessed to have found World Outreach Church because it has really changed our lives. For the first time, we both have a sense of spiritual growth and peace. We are trying to be the Christians that God and Jesus would be proud of. It has really helped our marriage and helped us be at peace with our lives. The last few years have had a lot of stumbling blocks that we didn't always understand the reasoning for. I think we've gone through all of the stages of grief, as most parents have. I still struggle with fear of the future and Addy. Fittingly so, our pastor is now doing a series on overcoming fear and anxiety. I work with families every day that say goodbye to their children way too early. It seems like there have been so many new angels welcomed into those gates this past year that have really affected me very deeply. It breaks my heart for them, and terrifies me. I learned long ago that we cannot live our lives according to fear, even if I still have it. I know that He is in charge, not us, but that doesn't mean that we ever want to face our worst nightmare. Some people say that if you have faith and believe that God will take care then you can't have fear, but I don't think that's true. I know that He ultimately decides when each of our time in this body is over, but that doesn't mean my earthly mind can totally understand why (at that moment at least), or that we welcome the pain into our hearts. No matter how happy a parent may be if they know their child is at peace, whole, and in the eternal presence of the greatest God- it is still the hardest thing that a parent could ever endure. I'm working to truly understand and accept the word of God and incorporate that into our congenital heart journey. Some days its easier than others- so the harder days are the ones where I say an extra prayer, give extra hugs and kisses, give many thanks for each moment and day that we have, and say don't worry about the future that I do not know and cannot change! I want Addy to always know that she was made special for a reason and that she is our perfect gift that I wouldn't change for anything!
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| Yea she looks innocent... a rare occasion when she would sit and pose for a picture! |
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| She loves playing pretend asleep! |
Okay, so that's about as short of a blog as I can write to update 5 people over 6 months! I promise to update more often so that it doesn't have to be such a novel! There's about a million pictures, but I've tried to post the best ones of the last 6 months!
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| Our miracle, could she be any more perfect! |
