I absolutely did not realize that it had been so long since I had updated Addy's blog. I guess that we have just been so busy with enjoying every minute with our sweet girl that almost 6 months has flown by! Things here at home have been pretty good except for the loss of our Great Pyrenees, Hank this week. He loved cars, and that ended sadly but now he is buried up on the hill and will always be part of the farm. I was in a car accident a few weeks ago where my car was totaled, but thanks to seat belts had no major injuries. Maci is now wearing glasses and working her way through the rigorous Kindergarden curriculum much better! Hunter is doing well and just got a clean bill of health from his yearly St. Jude checkup. Heath is currently in clinicals for school so between that and work he is occupied pretty much 6 days a week. I'm still working 2 jobs as well and doing my school online as well. All of our farm animals otherwise are doing well, all the animals are ready for spring to come along with green grass!
Let's see, Addy is doing amazing in terms of normal baby stuff. She runs everywhere she goes, until she gets too out of breath. She has an exceptional vocabulary for 17 months if I do say so! Her favorite activity is watching Elmo on Mommy's Kindle Fire! She is saying 2 word phrases now and lets you know exactly what she wants! She had a sedated echo in January that looked completely perfect except for that pesky Left Pulmonary Artery that is still 3 mm. However, the vessel past that small part is growing nicely so that means that there is still good blood flow and it should make it until the Fontan. Dr Kavanaugh said that Addy's hemodynamics (the pressures and measurements of her heart and vessels) are perfect and probably the best she has EVER seen, and her ejection fraction (function) is nearly normal for even a whole heart! Our only concern is that she continues to have a large amount of activity intolerance. It is true that she should get a little more tired than normal children, but in absence of any lung problems, she shouldn't get "out of breath". Even our cardiologist admits that while playing and walking around the room, her work of breathing is significantly harder than most. She has absolutely no explanation for why Addy is absolutely huffing and puffing after approximately 20ft of walking. We have already had an airway workup that came out clear so our next step is a pulmonary consult to see if there is problem with her lungs. This will be this Thursday and hopefully give us some additional answers. While we don't want something to be wrong, if there is, we want to know about it before the Fontan when she is intubated and we completely change her pulmonary flow and pressures. Otherwise, the plan is to do another sedated MRI (pentobarbitol for the sedated Echo in January was a NIGHTMAERE, so we are doing MRI instead with ketamine/propofol) in April or May and if at all possible she will have her Fontan around August when she turns 2. She is still growing slow and steady, not as fast as I would like, but she is still hanging between the 25-50% percentile on the growth chart. The good thing is that she absolutely loves food, so she gets to eat whatever she wants as long as it has lots of calories! Luckily, she also loves her fruits and vegetables, and eats those way better than Maci does! On a sour note she will be losing her Tn Care this month, so all of the extra bills that our insurance doesn't cover will now fall back on us, I imagine that we will be in medical debt the rest of our lives so I am working on coming to peace with how the whole government system works and who qualifies for assistance. I think those are the highlights for right now. I am posting some new pictures of her so everyone can see how much she has grown. She has turned into a toddler right under our noses!
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| Addy loves watching all the animals from the front porch! She knows all their names- goats, sheet, geese, and chickens! |
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| Just a normal day of mischief for Addy! Looks like she's getting ready to swing from the pig's leash! |
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| "Oh Elmo, how I love thee!" She loved this balloon so much I couldn't bear to throw it away so we just hung it up! |
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| Fun times playing in her room! |
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| Addy's first Christmas at home, her first ever was spent at the hospital!...does anyone see an Elmo theme yet? |
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| Addy & "E-la-la" (Eli), she thinks it is her most important job to feed him his bottle! |
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| Playing outside on the rocks! |
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| Checking Peggy's gums for gingivitis! Peggy is as gentle as a lamb, lets her do whatever she wants to her! |
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| OK mom, I'm done walking, come get me! |
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| This little table set is just her size! She was calling "keeety" (kitty) over to sit with her! |
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| Inside chilling with her Boost drink, Cookie, & Rooty! She looks like she runs the show! |
These were just a few of the highlights over the last few months. I will try to keep up better with the postings, especially as we get closer to our final surgery!
