Awakenings

Remember the early 90's movie? The one, based on a true story, where Robin Williams gives L-Dopa to a bunch of catatonic patients and they magically come alive? Recent weeks have made me recall this movie, as Keira seems to be building momentum in various ways and we are seeing mini awakenings in her all over the place.

So, there's this old medication called Baclofen. It's basically a heavy duty muscle relaxant. I've been hearing about it since day 1 with Keira. I got the impression that its use was somewhat inevitable but that we should put it off as long as we could because there could be a lot of unwanted side effects including cognitive slowing and seizures. Doctors said they typically used it on patients whose parents literally couldn't extend their limbs to change a diaper or clothe them. Also, it's common for Baclofen users to eventually need a Baclofen pump to administer the drug directly into the spinal cord. Visit after visit, I'd hear about this drug, but it seemed that Keira's tone wasn't "bad enough" to warrant the drug. One by one, though, things seemed to be adding up and I eventually wanted to give it a shot. The doctors, I figured, typically saw Keira in the morning, when she was at her best. Keira has always tensed up her arms and legs during the day. This was, we thought, to express being overwhelmed. I was also thinking about how in the afternoons, typically JUST the afternoons, Keira gets more and more cranky and uncomfortable. She has to have someone directly interacting with her to sooth her. She often retches and/or vomits at that point in the day, and when we finally put her to bed, she cries for a very long time before falling asleep. Plus! We know that Keira has a high pain tolerance. So I thought, what if all this is related to muscle tension/pain/fatigue? What do we have to lose? The final straw for me was seeing Keira sleeping like this nightly...

Notice the awkward/unnatural position and rigidity.

And waking up like this in the morning...

When she wakes up like this we say she's "curly." So I consulted with the physiatrist, discussed it with Jeff, then decided to give it a try.

Magic! After just ONE DOSE, Keira woke up laying flat in her bed. She was also very "talkative" that day. She was silly and giggly. Almost like she was a bit inebriated. The drug caused some lethargy initially, but as we toy with her dosage, she seems to be "awakening" more and more. Here are some things we have noticed:

• Waking up lying flat and with soft hands
• Making more sounds overall
• Picking her head up higher and longer and working harder in PT
• More coordinated tongue movements in feeding therapy
• More content and easier to keep calm in the afternoons/evenings
• 90% reduction in muscle tension, leg extension, and teeth grinding
• More kicking in swimming
• Eating her ENTIRE bottle for the first time in months
• Falling asleep more easily at night
• 95% reduction in retching and vomiting

Needless to say, this is huge. We have not seen any scary side effects at all. Perhaps we are also on the road to getting her to tolerate more food. Of course it makes me wonder why we didn't try it before, but I try not to go there. I need to just pat myself on the back.

The Baclofen did have a honeymoon period. After a couple of weeks, we were still seeing very good effects, but not quite as awesome as before. We were assured that this is a typical reaction. What you may not remember about Awakenings, is that the effect was short lived. The treated patients gradually regressed back to their former state. We are optimistic that, unlike Awakenings, the Baclofen will continue to work for her for a long time.

Not long after starting the Baclofen, Keira was offered a "trial week" with the JumpStart program. Jumpstart is a program for kids ages 3-6 who qualify for intensive speech, OT, and PT services. The program offers these therapies, plus group social activities, for kids 3 hours per day, 4 days per week. Keira has been on the waiting list since she was 2. This is a LONG TIME if you realize that all the research recommends the more, the earlier, the better, with all things therapy.

I have some very mixed feelings about the program. It is the ONLY program of its kind in the area, so it is in high demand, though they only take about 15 kids at a time. The program feels really competitive and exclusive. The kiddos with Downs Syndrome seem to be the elite of the disabled and appear to get into Jumpstart more readily than other kids. I get it. Kids like Keira are hard work both physically and emotionally. The "milestones" may be fewer and further between. Another characteristic of Jumpstart is that it employs many newcomers in their fields who undoubtedly feel overwhelmed by kids like Keira.

Anyway, a year ago, the program told me that Keira would not be admitted because they didn't think she had the stamina. Last week, she completed the "trial" and, partly due to the Baclofen, Keira did better, I think, than anyone expected. Last night, I asked Jeff if he'd checked the mail, because I knew that Keira's acceptance or denial letter would be there. He said, "Do you think she got into Yale or Harvard?"

"RIGHT?!" I said. It seems so backwards.

Later last night, Jeff texted me and said, "Keira got into disability college!" So, I guess, Keira will be starting the program in December. This is good news in that Keira will get hours and hours of intensive therapy. But also a bit frustrating at times because I resent going in there and feeling defensive, as if we have to continue to earn our keep in this prestigious club. There is a strict attendance policy and we are forbidden from having our kids in other, private therapies while they are in the program. We will pull Keira out of school to take part in this, but overall, I think it will be good for her.

We have been working with speech therapy on getting communication devices that can be used at home. Particularly now, since she has a good chair in the house, where we can mount various switches, it's a good time to invest in some equipment. This past week, we've been enjoying the use of her "step by step" switch. How it works is that someone (myself, a therapist, etc) records messages into the switch in segments. Then, each time Keira pushes the button, she "speaks." It's a little weird putting words in her mouth, but it's fun that Keira can come home with the switch from therapy and "tell" me what she's done. Or she can participate in dinner conversation by "talking" to us. It's working on communication and motor skills as well as teaching her another way to get attention, aside from pulling her head out of her headrest!

Keira seems happy with her progress, too!

I'm really excited about where Keira's communication is going to go. I feel like she understands a heck of a lot of what we say. If you know what to look for, she responds pretty readily to lots of names and lots of words. For example, when Jeff gets home, he'll ask her what did you do today? Did you see Garren? Or did you see Deana? And Keira's face (60% of the time) will brighten according to what actually happened that day. I love that she has the opportunity to make choices, too. "Do you want Daddy to change your diaper? Or Mommy?" (Did you see my trick there? She always picks Daddy. Ha ha!) Oh! Another example of her communication was when we had our small group at our house last week. Keria was sitting in her chair, between myself and Kori. When Keira began to cough I took her in my arms, and she would NOT stop giving me her "no" face. I eventually figured out it was Kori that she wanted!

When the boys were babies, I talked to them constantly. I narrated every activity, whether we were driving in the car, walking through the mall, or going down to sleep. With both, as with most babies, it wasn't long before they started to respond and eventually speak. I never talked to Keira. Maybe because I was afraid that even my speech was over stimulating. Maybe because I thought she wouldn't respond. Until now. We were taking a bath the other day and I noticed that I was telling her all about each body part as I washed it. Just like I had with the boys. Without realizing it, my belief in her ability and desire to respond has increased dramatically and this is a wonderful awakening for us both.

Because retinal and other vision problems are common in CMV babies, Keira's been seeing an optometrist since birth. Though we see him regularly, we've gotten very little information from him except that she probably wouldn't benefit from surgery. It's been difficult to get her to open her eyes in the exam room, let alone pay attention to the toys and stimulus card that the doctor used for the evaluation.

Over time, our curiosity about Keira's vision has increased. In PT and OT, it was frustrating to not know whether she preferred the right because she could see better, or because she could move better in that direction, or both. We decided to seek a second opinion from a developmental optometrist who specializes in vision therapy. Knowing we'd have to pay out of pocket (because, apparently vision therapy is on par with woo woo), we decided to give it a shot. And boy am I glad we did!!

This doctor won me over from the start when he admitted he was a little intimidated after seeing Keira in the waiting room. By now, you should all know I appreciate candor! He promptly became invested in Keira. He earned her trust (therefore her eyes remained open!) and was willing to think outside the box. He thought what I had to say was important and seemed to understand the value of sensory integration. We learned more from him in 20 minutes than we'd known about her vision in 4 years. She likely sees much better to the right and in the lower quadrant. She does have peripheral vision. She seems to have some left side neglect, meaning she often doesn't see there, but could be trained to, potentially. She works very hard to track her eyes together but still operates like an infant in this way. Her vision is probably fuzzy, if not double, much of the time. The reason she closes her eyes is not just because she's overwhelmed, but it's her equivalent of squinting to try to put her environment into focus.

But the best part was when the doctor decided to put a prescription in front of Keira's eyes to see what happened. It was amazing. She. Woke. Up. Her smile and attentiveness went beyond her excitement about having Daddy's attention. It went beyond the novelty of having something silly resting on her face. She was alert and looking around and her eyes were teaming together! Plus, she was so tickled by it! In fact, for the rest of the day, when we talked about her "glasses," she would just laugh!! We know that getting an ideal prescription for her is going to be a long process, but we are so excited about the implications! Just think. If she can see better, can communicate better and discover her environment more! Finding baby girl glasses via Medicaid is not a Lens Crafter's sort of specialty. So it'll be awhile, but watch out for updates!

Well, folks. That's the end of my mommy retreat. It's been perfectly lovely. I may not post again for a long time, but I will be back. Thank you for reading.