Alexis and the Big June. Thursday, Jun 29 2006 

Alexis has had a pretty busy summer so far – and it isn’t even as busy as it was originally supposed to be.

She spent the first week of June at a cheerleader camp hosted by the local high school. She had a blast, even if for the first few days she was primarily the “support girl” – because she’s so much bigger than most girls her age, she was on the bottom of pyramids and lifts and things. Although she still enjoyed it, she enjoyed it more when she was able to do all the flips and cartwheels and such for the final program of the week.

During that week, she decided that it was time to cut her hair. Alexis’ hair has only had more than a trim three times total now. The first time she donated it to Locks of Love. The next time was just before the wedding, and because I didn’t want her to cut off the 10 inches necessary to donate, she only had about 7 inches cut off. This time, she wanted to donate again. Check out the before and after pictures:

Alexis Before

After

Excuse the stain on her shirt. She’d had a long day.

 

See that cake she’s posing with? That’s from her cooking class. Yes, she’s taking a cooking class once a week. The first week they made cake, the second week cookies, and the third was pinwheels (ham, some mayo/cream cheese mixture, herbs, etc, on a tortilla). She’s had homework of taco dip and lasagna. They’re technically making stuff that most of us would consider junk food, but the woman running the class uses all organic products, dairy with no growth hormones, meat without nitrates, etc. The cakes and cookies were, I believe, gluten-free as well. The kids have no idea – yet. What a revelation that will be!

She’s also involved in the summer reading program at the local library, and goes not only to our library’s programs, but other local libraries as well. In fact, today she’s a few towns away listening to a storyteller. I haven’t been too pleased with her choice of books – in fact, we had to bring back the one she checked out yesterday. She likes to think that she’s a pre-teen or a teenager, and it’s hard to convince her that she’s not even nine years old yet. So tomorrow, she goes to the library with a list of acceptable books that she can choose from. Just when I think she’s the easy child, she decides to prove me wrong.

So, that’s what’s going on with Alexis. She was supposed to be in art lessons (which fell through) and swimming lessons (which kinda fell through but may be on the agenda for next month). She’s spending lots of time with friends, and being a typical kid.

A-doctoring we will go. Thursday, Jun 29 2006 

Since we haven’t really kept in touch with anyone, I figured I really needed to make a post about what’s going on medically with the babies, particularly Michael.

 First though, Molly. She’s ridiculously healthy. According to the doctors, she’s currently (as of this past Tuesday) weighing in at 18 pounds 8 ounces. I fogot to see how long she was, but I’d figure somewhere in the 26 inch area. She does have a slight bow in one of her legs, but, unlike what they made Alan do when he was a little one, they now wait until between two and three to refer babies to orthopaedists for that condition. So we’re probably not looking at something that’s going to interfere much with her walking, if at all.

 Now, Michael. Where do I start?

Starting around 2 months, I noticed some similarities in his demeanor and movement to my cousin who had severe cerebral palsy. At the babies’ four-month appointment, I mentioned to the doctor that I had noticed some definite stiffness and jerkiness in comparison to Molly, and that I noticed those similarities to my cousin. He said he trusted the mother’s instinct, noticing the stiffness himself, and referred him to a Pediatric Neurologist.

 We saw the Neuro at the beginning of June. She was really nice, funny, polite, and was great with Michael. She noticed that developmentally he seemed to be about where he should be for his age (which we knew), but that she also noticed some stiffness and jerkiness. She didn’t seem overly concerned, because I mentioned to her that had we seen her 6 weeks earlier – when we made the appointment – she’d have been looking at a different child. He’d made so much improvement over that time frame. In her words, “That’s what I like to hear – improvement.” His reflexes were great, he already had the main component in place even if he had CP (a loving a stimulating home environment) and because he seemed to be making progress, she simply referred us to a couple of other medical professionals, and said to come back in 3-4 months.

The first one was the dermatologist. Michael has a birthmark, which we love to refer to as his texture, which begins on the inside of his second toe, goes on the top of his foot, around his ankle, up the side of his calf, behind his knee, then on his thigh leading up to his oh-so-cute baby butt. Well, it turns out that this a nerve distribution line coming from the L2 or the L3 (I can’t remember which she said). Apparently, if you get a slipped disc in that area, where is birthmark follows is where the pain would be. The neurologist was terribly interested in that. The dermatologist, however, was a little less enthusiastic. According to him, the birthmark is on the nerve distribution line, but isn’t affecting the nerve – so we can’t trace any stiffness or jerkiness back to that. It’s simply an Epidermal Nevus. I’d give you a link, but everything you read online about it will scare you to death. There are tons of references to various syndromes associated with EN’s, but supposedly, none of that has any bearing on Michael’s situation. Which is good. Or it’s doctor’s dropping the ball – but I like to assume the first.

 The next person we got to see was a pediatric physical therapist. She came to the house and did an evaluation. I’m not exactly familiar with their grading scales, but Michael should have had a 39, but scored a 33 – whatever that means. Well, she said that it means that he’s still well within normal developmental ranges. At the time, he could sit up, but was very wobbly, and still very, very jerky with his arms. The PT stated that because of his size, that he could be having trouble with his balance or simply learning to hold himself, so his arm movements were suffering simply from less use. Although the neurologist wanted her to get Michael on a home program, she said it wasn’t really necessary, to just give him lots of floor time and sitting time, and play with him.

 Notice. No one has said “He doesn’t have CP.” No one has said “Oh, you’re just being a paranoid mommy, he’s fine.” This, of course, makes me a bit more paranoid, but when it comes down to it, I’m okay, and he’s okay. The reality is that even if he has CP, or any of the syndromes associated with the EN, or anything else really, it is for now a very mild problem. He is still very much on track developmentally, running just a few weeks behind Molly in most things, and right on track with her for others – and this is still well within normal ranges, because they were born so early, our ped tends to want to give them extra leeway for development even though we technically don’t use “adjusted ages”.

 Oh, I mentioned that Michael was a big boy, right? As of yesterday, he is 20 pounds 6 ounces, and 28 inches long. He’s completely off the charts – both the premie one that they were apparently using for them, and for the normal gestational age babies.

 Ah, other appointments. We had to see an audiologist to follow up on any possible hearing loss from the jaundice. All is okay on that front at the moment. I thought it would be because of possible brain damage causing interference in the signals from the ear, but apparently, the possiblity of hearing loss comes from the imbalance of sodium and potassium in their blood because, with jaundice, the kidneys don’t work as well because they are trying to process out the bilirubin. You learn something every day.

 And our appointment yesterday… Michael has an ear infection, totally out of the blue, and it’s apparently a pretty bad one. He was put on antibiotics, and the doctor wants to see him in 10 days to make sure it’s all gone (in the past with Alexis’ doctors, they generally have just said “come back if the problem continues” after they write the prescription). Because the antibiotics are so potent, and because he’s too young for yogurt, I went ahead and bought a probiotic formula to add to his food/formula every day. Hopefully we’ll be able to avoid a lot of the stomach problems and yeast problems (thrush, diaper rash, etc) that come with antibiotics. Oh yes, and both of his legs are bowed, and more severely than Molly’s, but like Molly, they won’t refer him out until near three to give him time to grow out of it unless it becomes a major hinderance to walking or crawling.

 So, here’s the rundown of medical visits to come:

  • July: Pediatrician for Michael’s ear infection – and hopefully that’ll be the end of it.
  • August: Oooh, we may have nothing in August…
  • September: Nine-month appointment for twins. Physical therapist for follow-up evaluation.
  • October: Neurologist for follow-up.
  • November: Dermatologist for follow-up
  • December: Audiologist for follow-up, Pediatrician for 1 year visit for twins.

That may be it. The audiologist wants to see Michael yet again next June as well.

And this is all for “probably nothing is wrong”. It makes my head hurt, I tell you.

So, because a picture is always better than a bunch of words, here’s my current favorite picture of the M&M’s:

 Oops! Busted!

Watermelon. Sitting. It was a big day. Monday, Jun 26 2006 

Michael and Molly both had their first taste of watemelon today. We're starting to think that they just don't like sweet things. They did great with cereals, and wonderful with veggies, but when we started feeding them fruit, something just didn't work quite right. They detested peaches, making their first (and only) head shakes of "no" to them. Applesauce, the blandest fruit there possibly could be, doesn't interest them. They'll eat it, but it has to be warm, and they prefer that it is alternated with cereal.

But surely, they must love watermelon! They're Southern babies! They must! But they didn't listen, didn't embrace their heritage, whatever. They hated it. We even caught Michael making his "ugh!" face on video.

 So then, we're hanging out in the living room, and I decided to video Molly crawling for the grandparents to see. Then suddenly, Molly decided to do a new little trick.

You're just going to have to watch the videos.

        

A New Blog and all that Jazz. Sunday, Jun 25 2006 

We decided it was finally to come out of the back alleyways of the internet and get back to doing what we love – sharing ourselves, and our family, with our friends and family. We let fear rule us for a long time, but no more.

So out of the shadows we come. There won't be earth-shattering revelations or religion-destroying commentary. All you'll find is the day-to-day, and usually rather boring, life of the Kornacki family… complete with a whole lot of pictures. Make sure to comment so we know who is out there!