The up and up on Janie

Long ago and far away I promised a few people an update on Janie. Lots has happened this year with her so I hope I remember everything!

Janie is now 2 1/2. Her physical skills are still at about the level of a 7 month-old in many ways. She has been able to sit up on her own for almost a year now, which was one of the most exciting milestones for us. It has proved to be a bit of a mixed blessing, however, as we learned last month that she has begun to show some scoliosis (curving of the spine) in her upper spine. As I understand it, because her muscles were still not as strong as they should be she hasn't been sitting as straight as she needed to. As a result her spine has taken the path of least resistance. She had to be fitted for a back brace last month. After a car accident on I-15, a nasty head cold that lasted for 2 weeks, and a two-hour long appointment, we finally have the brace! We are looking at a year or more of Janie having to wear it. We are also starting to look into getting her a wheelchair in the next year. This is not because we are giving up on her being able to move on her own, but realistically that milestone is going to be quite a ways down the road, and she is only getting bigger (which is a blessing, don't get me wrong!) but she is also getting harder to carry around. She will also be starting preschool when she turns three, and a wheelchair will also be optimal in a school situation.

Janie's first time sitting up on her own, August 2008

We still have therapists from Early Intervention who come in a few times a month. Janie's physical therapist, Julie, is incredibly knowledgeable and understanding and I absolutely adore her. I am sure we are kindred spirits (like Anne of Green Gables always talks about!) and Julie has become very special to us. I love Janie's other therapists as well. Her vision therapist is wonderful to help us better understand how her vision is developing and what to expect down the road. She also has a speech therapist, who works mainly on feeding skills right now, but since feeding skills seem to be coming along pretty slowly, she has given us some great ideas and insights on Janie's physical development as well. One of the best things about having therapists is that they notice progress that we sometimes overlook or miss, simply because we see Janie all the time and it happens so gradually. They, of course, are more familiar than we are with child development in the many different areas and how and why children do things at certain times and generally in a certain order.

Julie and Janie, Summer 2008

Based on assessments, Janie's vision is at about a 12 month-old level but is still progressing. Even with those results, however, it is hard to know exactly what she can really see. Most people notice that her eyes don't always come together and align to focus on things (though usually people think she is tired). I guess this is what happens with newborns for the first few months of their life (their eyes don't always align), and eventually the brain trains the eyes to move together. Janie's brain just never did that and while her eye alignment is improving and her eyes can and do focus on things and move together, it may take a future surgery to fully correct it (it would be for cosmetic reasons only, though. Apparently, it is not affecting her vision).

Janie in her stander, December 2008

Cognitively, assessments show that Janie is at about a 12-15 month-old level. She understands a lot of what we say, and she definitely communicates with cute little grunts (for yes) and squeals (for "OH YES, I want a treat!"). She uses her vision to communicate as well (looking at the things she wants) and in the past 4-6 months she has started reaching for things, which has been exciting.

Janie with her froggy pond, one of her favorite toys, Spring 2009

For a while we were concerned that she might have some sensory issues (that too much stimulation might actually be causing her physical pain) but we had an amazing Occupational Therapist who came to evaluate Janie. It helped us to understand her better and we learned that when we are trying to get her moving and working her muscles we need to give her lots of input to rev up her little system (think roughhousing) and change the activities up a lot to keep her interest and keep her from getting frustrated with one activity (since we are making her work hard and who wants to work if they don't have to?)

Janie in her basket, which I pull her around the house in when I need to get things done, March 2009. She has since graduated to a larger, more rugged SUV-equivalent, since she started leaning back in this one and falling out. On purpose.

Because of that hypotonia (low muscle tone) Janie has to work a lot harder than most kids to use her muscles and this includes the muscles in her mouth. She is not able to chew, so we have to blend or mash up all of her food or give her things that can "melt" fairly easily in her mouth (like graham crackers). She moves food around in the front of her mouth with her tongue, but mostly is swallowing things whole so we have to be careful about what she can have. This is one of the hardest parts for me, because a lot of my day is spent figuring out what to feed her (I try to get her a variety) then blending it up in the food mill, then feeding it to her one baby spoonful or piece at a time. If she decides she doesn't want what I make, it gets really frustrating to try to figure out what else I can find that I can put through the food mill, etc. Ever since she turned 2 she has become a bit picky and this was really hard for me, because she used to eat everything. I am doing better with it now, but I ended up throwing away a lot of food before we got to that point. She seems to be quite the typical kid though: loves yogurt, pizza, cheeseburgers, chicken nuggets, mashed potatoes, spaghettios, scrambled eggs and Subway sandwiches (all of which can be put through the food mill, if you can you believe it). She loves cheese, so sometimes we can entice her to try new things by putting cheese on top. Wheat bread with butter and jam with milk poured over it is her all-time favorite thing and York peppermint patties are her favorite treat. I have noticed that lately she is moving things around in her mouth more and that is really exciting.

Janie figured out she could lift her crib bumper and see out of her crib. She thought this was pretty fun. April 2009

We saw the geneticist this past year to see if genetics could tell us more about what to expect for Janie in the future, to possibly determine a cause for her delay, etc. Genetics is a crazy business--so open-ended! We learned that when you go to do genetic testing, there is only a 40% chance that you will ever get a diagnosis. We were in that 60% of conditions that have no known name or cause, nothing was found to give an indication of why this happened. We did find out based on those stats, however, that there is only a 1 in 100 chance that this would happen with other children we might have. So for now, she has the Janie Case Syndrome and we focus on what we can do for her (versus the whys).

Janie's first experience at an Oregon beach. Sadly, this was the biggest seashell we could find, May 2009

Janie is a 2 year-old in lots of ways--temper tantrums, picky eating, wanting things her way, and lately, whining for everything. She wants mommy all the time. We are so grateful for any and all normalcy that comes our way, but still don't want to enable her or create bad habits. I'm always a little perplexed on how much to expect from her developmentally as far as things like that go. Her whining is especially getting to me. I'm so happy that she's communicating, but it does tug at the nerves just a bit after a while. I'm hoping it has to do with getting used to the brace and that it will be short-lived.

2009 has been fun and exciting for Janie, though. Lately she is really doing well on bearing weight on her arms, which will get her ready for crawling and has been a long time coming. In the last month she has learned to wave and she has again started giving kisses (which is smacking her lips. She does not want to kiss a cheek!) She loves to look at the scriptures during family night (and has been successful in ripping a page or two out of them. I let her rip up the junk mail and she loves it). She loves firetrucks, rainbows, and trains, especially Thomas the Tank Engine. She still LOVES books, and wants to be "read to" first thing in the morning and the last thing at night, and after every meal. She especially loves the story of Goldilocks and the 3 Bears. She can now show us where her ear, her hair, her fingers, hands, feet and toes are, but thinks that her nose is in the same place as her ear. She loves to dump toys out, but gets mad when no one is around to put them back in for her to dump again. She is now terrified of most musical toys, and it still usually takes her a few days to get used to a new toy. She loves to play with those bath poufs, and will actually put them in her mouth and bite them (another milestone!) She is quite the little botanist and loves to look at plants and trees. My neighbors probably think I am obsessed with checking the trees in our backyard because we frequently make the rounds to each one. Janie will now sit in the grass, which I am so happy about, because for the longest time she was terrified of it so our backyard was not used much.

One night during FHE all Janie wanted to do was to "study" the scriptures. It was adorably funny until she tried to turn a page. I guess it's not the first time someone has taken things out of the Bible, right? June 2009

For a few weeks at the end of Spring we got to go to a "Moms and Tots" class at the Child Development Center, and Janie did so well! She usually gets nervous with new places and things, but she was surprisingly calm and engaged. Hopefully this Fall she will get to go to a toddler class to help her get ready for preschool next year. One of the hardest things for me as Janie's mom is feeling like she is missing out on exploring the world and learning about different things. I often feel that she gets bored and a little frustrated at home some days and running errands with mom isn't the most stimulating thing. I try to take her places where she can see things or we can play, but sometimes she is still so nervous and it's hard to know how much I can or should do with her. I am so grateful for the programs that are out there to give these little ones with special needs opportunities to grow and learn and have lots of exposure to different things, but in an environment where those who are helping them know and understand their needs and abilities.

Us. May 2009

Well, that was more of an overview than an update (sorry so long!), but I know that some of you don't know much about Janie and are not even sure what to ask, so here you go. She really is such a good little girl. I feel so blessed to be her mom and that I get to see her little smile every day!