This is an older picture of Sunshine (from about a year ago) but it's still one of my all-time favorites. I love how it shows her love of life and her joy in the little things. I really don't know how to describe Sunshine. She is such an enigma in many ways and she comes with several scary diagnosis and labels but anyone who takes the time to get to know her is surprised by her depth, her intelligence and her joy. She is sweetness wrapped up in questions. She is our precious girl and always will be.
My last post on Sunshine covered most of the basics but there were several things I wanted to mention both for the curious and also for the record since I sometimes look back over the blog to see what my kids were doing at different times. This blog is very helpful for that so I want to keep it up to date as much as I can.
There is one important piece news, though, that should have been in that last post. Actually, it should have a post of it's own - it's that big!
Drumroll please . . .
SUNSHINE IS EATING!!!!!!!!!
Sunshine slowly increased her food intake over the last year and by the spring we were able to start reducing the number of calories she received through her g-tube. And in July we were able to stop formula feeds completely! Sunshine is getting every single calorie that her body needs, by mouth, the way that most 5-year-old-girls do! I still can't completely believe it even as I post. Not only is Sunshine eating enough food but she's eating a pretty good variety of foods, textures and tastes. She feels hungry and will ask to eat. She has favorite foods and not-so-favorite foods. We are so thankful to God for this miracle! I truly never thought we would see this day.
Sunshine still has her g-tube (for those who care about such things, we're currently using a Mini-One button) and we use it for fluids (water) and for most medications. But, we are hopeful that someday Sunshine won't need it at all. She is working hard at conquering her fear of liquids and taking in a little more every week. She actually asks for a drink sometimes, which is huge for her (she's been known to go months at a time without any liquid taken orally).
After that news everything else seems a little mundane but like I said for the sake of the record here are a few more things going on in Sunshine's life.
Autism - I didn't go into much depth in Part 1 but wanted to do that more here. Sunshine definitely has autism, confirmed by the right specialists now. However, they told us that Sunshine's autism is not typical and that's been our impression too. Sunshine is currently classified as having Pervasive Developmental Disorder - Not Otherwise Specified (PDD-NOS) which basically means a child who has many autism features but who doesn't fit the classic definition of autism. However, the definitions will be changing next year and PDD-NOS is going away. Kids with PDD-NOS will then be considered to have "Mild to Moderate Autism". It doesn't really change anything, they're just two different ways to describe the same thing. Autism is a spectrum with one end being very mild and one end very severe. Sunshine is on the "higher functioning" side of autism but when coupled with her down syndrome it still means very significant delays. Since Sunshine has down syndrome, this also impacts the way that her autism presents. Even in kids with more severe autism, having down syndrome often changes the way it looks. For example, kids with DS and autism are usually better able to connect with people and more interested in connecting, even though they still struggle with those connections.
Vision - Sunshine's glasses prescription took another huge jump over the summer. Her glasses are now -14.00 in one eye and -12.50 in the other eye. That is an incredibly high prescription (for a comparison, my eyes are around a -4.5 and I cannot function without my glasses) and they say that it will likely continue to get worse as she gets older. The good news, though, is that her only eye condition is high myopia (extreme nearsightedness) and otherwise her eyes are very healthy and functioning normally. So, she should continue to be able to have her vision corrected with glasses. When tested last fall, Sunshine's vision was 20/100 even with correction. So, she falls into the category of vision impaired. When she received a functional vision assessment this past spring they determined that for now she is getting around ok on her own and does not need to use a cane. They also said that she ought to be able to see preschool materials (which are usually in larger print) as long as we avoid visual clutter (too many things in her vision field) and provide a lot of contrast (such as a background that is a different color from the object she's working with or the paper she's looking at). For now she's not receiving vision services but she may need them in the future. We'll just watch and see how things go.
Mobility - Sunshine's mobility is becoming a more significant issue. She is bigger now (about 42 inches tall and 40 pounds) and so we can't carry her like we used to. Making her walk more has shown us how challenging that is for her. Her low muscle tone makes even something simple like walking across the room or down the hall at school very tiring. She has a hard time organizing her limbs and has a very odd gait. She really can't walk more than about 100-150 feet without collapsing in exhaustion. She also has trouble with large motor activities such as uneven ground, going up and down steps, climbing onto things, etc. All of this limits her ability to participate at school and to be more independent both at school and at home. So, this is a big priority for us right now. We are working on different exercises to help build up her strength. We're also realizing that it may be a long time before she is able to move around on her own the way that we hope she will. She's outgrown our stroller so we're in the process of getting a medical push chair for her (kind of looks like an overgrown stroller). Having the chair will help her be able to participate in more activities with the family without having to be carried.
Toileting - Nope. LOL. She sits on the potty sometimes but never "produces". She doesn't seem to have much awareness right now so we're just kind of going through the motions but not pushing this much either at school or at home.
School setting - Sunshine is in a special needs classroom and currently attends only half-day. She just doesn't have the energy to be at school for a longer period. After school she comes home and plays a bit and then will take a long nap (usually 3 hours or more). School wears her out! :) Sunshine has an amazing team of teachers, therapists and paras working with her this year and we have been really impressed with her school and everyone there. She's in a class where she is one of 5 kids with 3 adults (1 teacher, 2 paras). She is participating in some inclusion as she is able and the teachers report that the typical kids seem to seek out Sunshine and try to play with her. Sunshine struggles with this play but she is making progress and seems to want to participate, even though it's very hard for her. We think this is going to be a great year for Sunshine and that she will make a lot of progress.