So much for learning everything you needed to know in Kindergarten. In reflecting on the last 6 years and 11 months since our daughter Kimberly Rose was born, I came to the realization that the experiences we have had during this time have resulted in us learning an entirely new vocabulary. Here is a sampling of what we learned in year 1.
Of course becoming a parent to any child causes you to discuss bodily functions and minutia that you previously would not have considered viable for adult conversation, yet becoming the parent of a special needs child takes it to a whole new level. For us it began the day she was born. This being our second child, I had not anticipated on learning anything “new”…you know, sort of been there, done that type of mentality. To the contrary, moments after she was born and the mid-wife checked her over, counting fingers and toes, she pointed out to me Kimberly’s sacral dimple. The mid-wife calmly explained that this deep, narrow dimple just above where her butt crack begins can indicate she has Spina Bifida. All I could think was “I realize I am 2.5 weeks early and she is small (5lbs 10 oz) compared to her bruiser (8 lbs) of a sister….but she’s supposed to be perfect in every way”. I had to regroup and ask the mid-wife how we know if it’s a problem or not. She suggested we take her to the pediatrician and discuss with him. So there it was…our first NEW word.
She also did not pass her hearing test, unknown if it was equipment or baby problems…another little dagger to my heart. Home we went. Showered and slept in our own bed. Subsequent hearing tests did not go well due to persistent fluid in her ears, this dragged on for months, but in the meantime we had bigger fish to fry. Turns out the dimple does not go all the way to her spine, so that was a relief.
Our next hurdle came at a check up with her Ped. Funny how the Drs do things that we take for granted unless it becomes an issue. He was moving her legs back and forth and we were chatting away when I noticed his expression change. A “clunk” was the technical terminology for what he heard. The effing “clunk” led to our next adventure. At six weeks old I had Kimberly at the Radiology Dept at UNC Childrens for an ultrasound of her hips. The video indicated bi-lateral hip dysplasia. Hmm. Off to the Orthopedic Specialist we went. Recommendation: have Kimberly wear a Pavlik Harness all day, she could sleep without it. I was rolling along with this OK, relatively speaking until they brought what appeared to be a torture device into the room.
(photo from Hip-baby.org)
They showed me how it worked as I fought back tears. Just remembering that day brings the tears back again. I took Kimbo and the harness home. I told Brad and I cried again. I put it on her. She hated it, understandably.
We had learned two new terms that day. Whew…Soon we were blessed with the sighting of an Ergo. I saw a mom wearing one and thought, now that might work. Never a fan of the Bjorns and a sling was not an option with the hip issues. The Ergo was the trick. They “sit” it in, are well supported and face towards you, optimal for napping, snuggling, and even nursing. I used the harness some but used the Ergo more. I could tell it was holding her legs in a very similar position but not to point where it was uncomfortable for her, so I felt that is was an adequate substitution. Ironically enough, we went in for a check up with the Orthopedist and he saw my carrier, asked me about it, and I believe upon leaving the exam room, that he became a salesman for the product!!! Immensely relieved I bagged the harness and we Ergo’d it daily with his blessing.
Another condition that was acknowledged within her first few weeks was Hypotonia. This is the term for poor muscle tone. I wasn’t even aware you could diagnose something such as this so early, but looking back I can see the differences between Virginia and Kimberly at that age were significant. It was speculated that this reduced muscle tone contributed to her gastroesophageal reflux. The sweet girl spit up constantly. This would result in way more complications than I ever imagined.
Around this time we had racked up enough concerns with our Ped to warrant a very difficult conversation at our next visit. I could tell he was trying to be encouraging, but at the same time wanted us to know that Kimberly may have a genetic disorder. Certain facial features, extremely high palette, sacral dimple, hip dysplasia, hypotonia, reflux, and other items I can’t even remember brought him to this conclusion. He suggested we test her for something called Mosaic Down Syndrome. Never heard of it? Neither had we. So blood was taken and we had to wait 6 weeks for the results….which were negative. She was not even three months old at this point. I was a wreck. When I wasn’t worried about that, I was dealing with the fact that Kimberly had developed a chronic case of diarrhea following her first round of vaccines and antibiotics prescribed to potentially remove the fluid from her ears (not infected) so that we may get an accurate hearing test. Cruel, cruel irony here: never got a clear hearing test, yet now we know the girl hears 10x better than me. The diarrhea caused inflammation leading to leaky gut which gave us the gift of excema and ultimately resulted in a diagnosis of Failure to Thrive when she had gained hardly any weight from 6 mths on through her first birthday. Where she weighed in at a whopping 13 lbs.
I can hardly remember many of the details of this time as the stress and lack of sleep resulted in a blur of a memory. The photos help me piece it together a little better. I try not to look a them too much…more of a forward thinker, but I will revisit this time for us for the purposes of sharing what we have learned with others.
As we move forward, our New Vocabulary continues to expand…