So this is by far the longest I have gone without a good update. We've been busy, that's for sure. But I really have no excuse. So here, in brief, are the biggest updates.
1. Sam was teetering on the brink of needing the Fontan surgery now vs. waiting a bit longer. After some much better oxygen saturation numbers, we opted to wait. He had a 3 month check up today, and remains stable. He was SUCH a big boy, and not only bravely did everything he was asked, he did it by himself, without us holding his hand or motivating him in any way. Such a big boy. For now, we will just live 3 month visit to 3 month visit, and hold out on the Fontan as long as is safe. I am nearly certain he will have it done before Kindergarten (a full 2 years from now), as we want him to be able to fully participate in all of the activities his classmates will be doing (PE, field days, etc). But for now, we just love him for who he is, which is a pretty darn amazing, miraculous boy.
2. Sam's GI problems seem to be leaning towards a diagnosis of Celiac Disease. We are still waiting the results of a genetic blood test. I will update as soon as I know! I'd be fine with this diagnosis, but the kid only eats bread so I'm not too sure how we will work out the diet change!
3. Luke turned 1 year a few weeks ago. I just can't believe it. His baby-hood flew past. He is crawling like a mad man, pulling up, cruising sideways on the couch, and standing independently now. He will walk if you hold his hand, and I feel sure he will be walking by himself very soon. Physically he is 100% my clone. He has a handful of words and a few funny tunes that he has mastered. He babbles constantly. He bites (oops). He and Sam L O V E each other. Aside from recent back to back to back ear infections and some rough teething moments, he is a really good, really playful kid. I can't imagine Sam without him or him without Sam.
4. I had to leave my job at the pediatric clinic due to an unreliable patient census. With two kids now, we just need more steady income. I am back at the adult inpatient rehab clinic and things are going well. Except I miss those kids. I keep up with a few of my favorites still, and melt when I see any new photo of them. One will be heading to Atlanta in July for his open heart surgery, and I have great faith that not only will he fly through the surgery with ease, but that this surgery will make an enormous difference in his physical development. Say a prayer for this sweet one and his family!
5. I worked super hard from January until May and lost 20 pounds!
6. Then, I found out I was pregnant! Yes...number 3 will be here in early January! We were shocked but plenty happy. Sam is 95% sure it's a sister for him....we shall see. I had no pregnancy symptoms with the first two, and have had none with this one either. We will be going to Dr. Cardis around 25 weeks for a fetal echo, as the chance of having a child with a major heart defect does increase slightly vs the average person once you already have a child with a major heart defect. And my plan is to gain the least amount of weight as is safe, and I have my OB's blessing. So all my hard work to get skinny and healthy is not lost!
I'm sure there is much MUCH more that could have been updated over the last, oh...4 months or so. I'll try to do better!
~Kathy
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5 comments:
So excited for you guys! and so good to hear an update from you.
I can't imagine why you wouldn't have time to blog regularly... ;)
I know how living 3 months to 3 months goes...but I assure you we are living fuller lives than most with the appreciation of each day's blessings!
I bet you all will do fine with the diet change. There is actually a large growing amount of retail products that are gluten free these days on store shelves. Plus, you would be surprised what you can do with vegetable purees to mimic many "conventional" grain-like foods.
I'm so so glad you updated! I'm so happy for you and all your life adventures! Can't wait to see you in November with all of our babies in tow :)
So glad to read an update! We should get together soon and catch up in person! Congratulations on the new baby coming ... I wish you were in my family so you could get us off the hook ... the pressure is on!
oh, and I eat mainly grain/gluten free so I have LOTS of recipes you can steal for sweet little Luke!
I just found your blog and am so glad I did. We live in south georgia and adopted a baby boy with HLHS last year. He was 4 months old when he came home to us and had just had his second surgery. We too are just hanging out, living 3 months to 3 months, waiting to see when he will need the Fontan. He has low pressures but good o2 stats. Our cardiologist isn't sure if he will be a candidate for the Fontan since his pressures are low. This is all new to me and I love learning from other moms what this road is actually like. Following along and praying for your son!
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