The Requested Life Update

['Hamas' Jenkins]

Initial thread:

http://www.chiefsplanet.com/BB/showthread.php?t=247772

The only way to properly begin this post is a sincere offering of gratitude for everyone that expressed care and concern for our girls. I’m amazed at the level of interest and support shown by the posters on this site. When people like Phobia and htismaqe say this place is a community, those aren’t empty words.

First, a PSA: When you take infant twins out in public it’s like being an F-list celebrity. Every sixth person you walk by in the mall or at the store says, “Oh look, twins!!” which is nice at first, but becomes increasingly annoying in the subsequent weeks and months. Yes, those are twins. Believe it or not, I can hear as well, which makes such passing comments a mixture of humorous, odd, refreshing, and irritating.

Additionally, if you say you want twins you also need to realize the work involved with juggling two babies at once, especially during diaper changes and baths. It’s not a summative, it’s exponential, especially if you are at home by yourself and one or both of them has had a blowout. That’s not to say it’s not worthwhile, but it is ****ing exhausting.

With that grievance aired, I’ll move on to the meat of this post: an update on how the girls are doing.

Hailey first. As I’m sure a lot of you remember, she had a significantly rougher initial course. Most of the important stuff is already mentioned within this thread, so I’ll update you on what has happened since.
She finally got past her issues with retinopathy, but as a result of the laser surgery she’s nearsighted. For a while her physical therapist thought she might also cognitive visual impairment (Google it if interested), but her vision in all fields and ability to pick out colors and respond to lights and shapes has tested out as perfectly normal. That said, she does need glasses to see optimally, and although she usually wears them pretty well, there are times when she’s done with it and just rips them off, chucks them, or tries to eat the plastic ear socks.

She also needed surgery around the musculature of her eyes to make sure that they both aligned properly. She had an initial procedure done in mid October. It’s likely that she’ll have another done this spring for a precise touch up and centering.

Fortunately, she eats well, feeds herself completely, drinks from straws and sippie cups, she does extremely well making sounds, imitating our sounds, communicating in general, and she even knows some sign language. It’s hard to pinpoint a child’s cognitive development at such a young age, but my wife and I, as well as her therapists, are very pleased with her cognitive function.

The area where Hailey lags behind the greatest is gross motor function. This is a result of the hypoxic environment that necessitated her delivery. As a result of the initial brain trauma to her ventricles, she displays textbook signs of spastic diplegia, the most common form of Cerebral Palsy. Because of this she’s behind her sister in movement and ambulation. She can crawl, but it’s not as graceful. Merely sitting in a proper position has required a great deal of therapy and effort. However, our PT, who is among the most dedicated and wonderful people to ever grace the Earth, is confident that she will be able to walk, albeit with some type of assistance. What type, we don’t currently know.

As a result of her therapy we are the temporary owners of the world’s smallest treadmill, one designed for toddlers. It’s about two feet long and has a rotary dial of speeds ranging from 0.1-0.5 meters/second. We use it during therapy to help her learn the proper gait pattern and weight shifting, as the tendency with people who have CP is to walk with a scissors gait, AKA pigeon-toed and on their tiptoes.

In addition to PT, which she has three times per week for an hour each, and occupational therapy, which she has two times a month for an hour, we give her a synthetic compound called Baclofen. It’s easiest to think of it as an artificial amino acid. Most individuals with CP are not able to absorb a specific amino acid called GABA; Baclofen is a synthetic version with a specific marker that allows their nerves to recognize it, which improves muscle coordination and function.

When considering Hailey’s issue with muscle tone, it helps me to think of driving over a bridge with a metal frame spanning above the road surface. If you’ve ever done so while listening to AM radio you’re familiar with reception loss. That’s the closest analogue I can think of for her injury. It’s not that she can’t send the signal to move and it’s not that her muscles are completely incapable of receiving the message, but there is a great deal of interference in the chain which precludes efficient communication.
However, considering where she started, she’s made phenomenal progress. I don’t like to use words like “normal” for a variety of reasons; my greatest hope for her is that she is able to lead an independent life and that she can do what she wants. Although I realize that she’ll never be an Olympic sprinter, I am a mixture of hopeful, confident, and highly anxious that she will be able to gain that independence that we so want her to have.

Moving on: Logan is a toddler. She’s wild, crazy, hilarious, and oftentimes bizarre. She has a maniacal laugh that is a mixture of Woody Woodpecker and Elmer Fudd that she unleashes at random moments. She’s a born climber, and has managed to figure out how to climb on to our coach by using the ottoman as a staging ground. She’s obsessed with small electronics like our remote control, but fortunately she doesn’t really care to watch television, but she does love to empty my DVD shelf, spilling dozens of cases on the floor. For months her favorite toy was the USB dongle for my wired Xbox controller. If she was upset the ready salve was “Where’s your dongle?” At that point, she’d grab it and usually bash something. She also loves to read. Today I think my wife read her seven or eight Sandra Boykin (sp?)-esque books.

She and Hailey get along pretty well, although Logan occasionally conks her with a toy hammer or scratches her face, fear not because Hailey protects herself through a series of vicious bites. They play together more daily.

We don’t have a lot to bitch about. I’ll be honest that I often have pangs of remorse, especially that I’m now at a stage of my life that many of my friends are having children in complication-free pregnancies, but spending as much time in the NICU as we did, and going to some of the reunions of children who have matriculated through, I’ve seen how bad the other side can be, from feeding tubes, to wheelchairs, to devastating brain injuries that will leave children unable to care for themselves or probably know where or who they are. It could have been so much worse. I’m not an optimistic person, but I do like to think of myself as pragmatic. I’m not hoping against hope for some type of panacea that will undo everything, nor am I deluded enough to think that Hailey and/or Logan won’t face developmental issues or teasing down the road, but I am happy and grateful for where they are at.

I’m also thankful for how many of you have shown interest and affection for two children you’ve never met.

You have my enduring gratitude.

Now, some photos:

Hailey's Halloween Costume. She was Hailey Potter:




Logan was Hulk Logan:




From a Christmas Photo Session. Logan (L) Hailey (R)