My sister, Kate, and I took Mary Clare for a cardiology appointment at MUSC today. After an ECG and clinic visit, all seems to be going extremely well. Dr. Forbus said all we do now is wait. He would like her to be 30 lbs or age 3 before her 3rd surgery, the Fontan. (See Fontan Procedure at Wikipedia.com, it gives a pretty simple and easy to follow explanation.) She is currently up to 22 lbs, which is considered “heavyweight” for a heart baby, so I’m guessing the 30 lbs will come first. We also discussed her cyanosis, deoxygenated blood in her extremities, which causes her blue hands and feet. We’ll have to monitor this closely. Sometimes, I swear, she looks like Barney, the big purple dinosaur. I have even had strangers in the grocery store or at the pool this summer ask me about it. How do you explain that? Well, she has extremely low oxygen in her blood. Why? Well, long story.<\/p>\n
She is getting her RSV vaccine each month and aside from a constantly runny nose has been very healthy this winter season, so far. So blessed.<\/p>\n
McCanless, on the other hand, I’ve recently discovered has tactile defensiveness, a sensory processing disorder. WHAT? (Even harder to explain than blue hands.) I’ve been discussing her “issues” with her teacher and a few colleagues and was even referred to an occupational therapist here in Hartsville, who ironically worked with Mary Clare last summer during her feeding issues. She is a brilliant woman and was very successful with Mary Clare.<\/p>\n
I’ve mentioned the daily wars going on in the mornings with McCanless and her attire. Calling it war is actually a gentle way of putting it, a complete understatement. Throw in the fact that she has never<\/em> been, or ever will be<\/em> a morning person and you’ve got a nightmare. Literally, every single morning is a battle, a melt-down, a fit that ends in tears, ripped clothes and a naked 4-year-old. (I’m talking no turtlenecks, no jeans, no socks, nothing too tight, too loose, that touches her wrong, that twists on her arms, that moves or flaps, no puff sleeves, no seams or tags but with a tight waist.) I don’t know how or why she will dress up and even sleep in a prickly princess gown, yet find nothing in her closet to wear to school.<\/p>\n I have tried it all: stickers on a chart, allowing her to dress herself, which I’ve always done anyway, choosing the outfit(s) the night before, being nice, being mean, getting Daddy involved, which is always a disaster. Two non-morning persons fighting in the morning only ends ugly.<\/p>\n In the past week alone, the following has occurred: A) I have taken McCanless to school in just her panties, threatening to make her walk into her building like that (Only a threat, I dressed her in the car before we walked in, of course.) B) She ran out of the house in her birthday suit (BUCK NAKED, I swear) because she was in a fit of rage about what to wear. (I told her I was leaving her so I walked out and she followed and, of course, a neighbor passed by.) and C) She hasn’t worn panties at all, not to school, bed or anywhere!<\/p>\n So either I’ve got a future nudist on my hands or a tactilely defensive child. I’m going with the second for now, so lately I’ve been searching the internet for seamless socks and spandex or lycra\/ exercise type clothes for her to wear under regular clothes for “calming, evenly distributed deep pressure input.” I’ve also begun “brushing” her, a technique to help my SPD baby girl. This is all new to me but I’m willing to try anything at this point. It makes for pretty interesting reading. Google it.<\/p>\n I can roll with the punches and find humor in most anything, usually, but this is getting crazy. One would think that my baby girls would have “normal abnormalities.” I’m pretty normal. Mel can<\/em> be. I never go to the doctor, ever, nor does Mel. What brought all of this on? Sometimes, however, with my half-heart blueberry baby and my naked, raging spaz, I think to myself, “What did I do before my sweet angels were in my life?” How boring it must have been.<\/p>\n","protected":false},"excerpt":{"rendered":" My sister, Kate, and I took Mary Clare for a cardiology appointment at MUSC today. After an ECG and clinic visit, all seems to be going extremely well. Dr. Forbus said all we do now is wait. He would like her to be 30 lbs or age 3 before her 3rd surgery, the Fontan. (See […]<\/p>\n","protected":false},"author":2,"featured_media":0,"comment_status":"open","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"footnotes":""},"categories":[1],"tags":[],"class_list":["post-653","post","type-post","status-publish","format-standard","hentry","category-uncategorized"],"_links":{"self":[{"href":"https:\/\/www.babypennington.com\/index.php?rest_route=\/wp\/v2\/posts\/653","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/www.babypennington.com\/index.php?rest_route=\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/www.babypennington.com\/index.php?rest_route=\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/www.babypennington.com\/index.php?rest_route=\/wp\/v2\/users\/2"}],"replies":[{"embeddable":true,"href":"https:\/\/www.babypennington.com\/index.php?rest_route=%2Fwp%2Fv2%2Fcomments&post=653"}],"version-history":[{"count":0,"href":"https:\/\/www.babypennington.com\/index.php?rest_route=\/wp\/v2\/posts\/653\/revisions"}],"wp:attachment":[{"href":"https:\/\/www.babypennington.com\/index.php?rest_route=%2Fwp%2Fv2%2Fmedia&parent=653"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/www.babypennington.com\/index.php?rest_route=%2Fwp%2Fv2%2Fcategories&post=653"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/www.babypennington.com\/index.php?rest_route=%2Fwp%2Fv2%2Ftags&post=653"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}