We're still here!

I just wanted to let you all know that I'm still alive! I know you must have been wondering since I've not posted for so long...sorry about that :/ The holidays consumed me! It was lovely, but it meant that I didn't have any time for posting, so I apologise, and promise to be better :)

My other blog has also been neglected, but there are a few photos from Christmas over there if you'd like to take a look. But I hope you all had a Merry Christmas, and I wish you all a happy new year too :)

Of course, I have all sorts to catch up on, but I'm not sure where to start. I suppose today I will just tell you about Avery's IEP updates at school. It's been quite interesting. For the first time, Avery will officially be receiving occupational therapy in addition to the physical therapy! Sometimes I find it a little difficult to read some of the various evaluations she's had throughout her short life, because they make me want to go find the person who wrote them and say, "Well, yes, it's true that she can't do that, but what you don't understand is how amazing she is!!" But I try to squash those feelings because I know that it just means she'll get even more help, and she does need help. So, you probably don't want to read the whole thing, because both the physical and occupational therapy evaluations are about 2 or 3 pages long, so I'll just try to summarise a little bit.

Occupational Therapy

Avery was referred to an OT because of a few things they noticed in the classroom: difficulty crossing midline; decreased ability to coordinate both hands; and difficulty with fine/visual motor skills such as stringing beads and imitating horizontal, vertical and circular strokes. *The adoring Mother in me wants to tell you that Avery loves drawing loopy circles, so she must have just not felt like it that day!!* She was tested in November when she was 33 months old, and apparently she did a "visual motor integration subtest" in which she "demonstrated solid skills to 22 month level and scattered skills from 24 months to 30 months." Her greatest areas of weakness appeared to be in scissor skills, imitating block designs, opening and closing screw-top bottles, and using immature grasping patterns on tools. *sigh* Sometimes these things make me feel like a bad mother, because I haven't been trying to get her to use scissors, and I thought that the way she held "tools" worked just fine, and I thought that she opened bottles pretty well for her age. Another example of how her being my first child means that I'm not as aware of what's age-appropriate development. Anyway. Here was the summary:

Avery presents with global developmental delays due to her medical condition
of Cerebral palsy, which impacts her ability to participate in fine motor, visual motor and self-help skills in the classroom environment. Though she is displaying emerging grasping skills, Avery displays below average skills in the fine motor domain due to weaknesses in eye-hand coordination. It appears that Avery will benefit from direct Occupational Therapy services to address these areas of need.

These are the goals which were added to her IEP as a result of her OT evaluation:

• Avery will imitate a horizontal and vertical line at least 4/5 trials on 5 separate occasions by March 5, 2009. I don't think this will be a problem since she's already doing horizontal lines at home.
• Avery will remove all objects from a container by reaching through the opening by February 5th 2009. I'm not sure why this is on there actually, since she learned to take blocks out of their box by reaching in and taking them out one at a time a long time before she figured out that she could just pick the thing up and pour them out.
• Avery will string at least 10 large beads on a lace by March 5th 2009
• Avery will imitate circular strokes on 4/5 times on 4 separate days by April 5th 2009. Again, I don't know why this is there since circles are her default...
• Avery will draw a person with a head and at least 3 body parts when asked to draw a picture of herself on 3 separate occasions by May 30th 2009. This one is interesting....she's never even tried to draw a person....
• Avery will snip an index card with scissors, making at least 10 snips around the edge of the card by March 5th 2009.
• Avery will play spontaneously (using both hands) with messy materials with no avoidance responses on 4 of 5 occasions by April 5th 2009.
• Avery will use functional 3-4 finger grasp on writing implements with minimal verbal cues on 4/5 opportunities by June 30th 2009.
• Avery will orient scissors in hand correctly to cut along a straight line within 1/2" of highlighted line by June 30th 2009.

Physical Therapy

I'll tell you straight up that the main concern I have with the PT eval and goals is that she wants her to use her walker more and not use her crutches as much. I can understand this since she is faster and more stable with her walker, and it would be safer with all the other kids around and everything, but she's not going to get faster and stronger with her crutches if she doesn't use them. And since she's made vast improvements with her crutch usage in the last month or two, I feel that the should be integrated more into her daily life, including school. Her physiatrist and other PT seem to feel the same way I do, so I've encouraged some comunication between them, so hopefully they'll be able to coordinate there since we don't want conflicting goals.

Of course, the overall PT eval wasn't really anything we didn't already know - w-sitting, assistance needed with all upright mobility, trouble getting up and down steps, decreased maneuverability (which wouldn't be so much of a problem with the forearm crutches, I might add!!!), unable to use moveable playground equipment such as tricycles. You know, all of that. Here's the summary:

Avery is a 2 year olf student enrolled in the REACH preschool program. She has been diagnosed with cerebral palsy due to Dandy-Walker syndrome. This diagnoseis decreases her overall level of independent and safe mobility within the classroom, school building and on the playground. Avery uses a posterior walker for primary mobility at school, but exhibits variable speed and is unable to keep pace with her peers at this time. (note - she is perfectly ABLE to keep up...she's just easily distracted and there are a lot of kids to look at on the way to the classroom from the bus. Not motherly bias, FACT) She also has forearm crutches for use, but these are not safe to use at this time in school due to factors noted above. (Her walker wasn't safe to use when she first started using it either, but she gained stability through continued use...how else is she supposed to get "safe" on her crutches?) Avery requires assistance for transitions between floor and sitting or standing, and is unable to get in/out of her seat at the table for meals or for fine motor tasks. She also requires assistance to change seated positions on the floor and tends to sacral sit rather than sit in a more upright position. Avery also exhibits some self stimulatory activities which have increased in the past 4-5 weeks, and she is difficult to be redirected out of these activities, especially when on the playground.

The self-stimulatory activities she's talking about there are Avery's tendency to flap her arms when she's excited, and how she can fixate on things like watching the other kids swinging on the swings, and when she does fixate like that it's hard to get her to do anything else - she'll just sit and watch. And flap!

A little side-note here, and tribute to the good father that is my husband. This has been the second occasion that I can think of where he's turned out to be right for worrying about something which I told him not to worry about. The first time was with Avery's clonus. That's the way Avery's legs shake if they're in particular positions. We noticed this months befpre her CP diagnosis, but I told him not to worry about it because my legs used to do that when I was little, but then it turned out to be one of the manifestations of her cerebral palsy. 1 point to Daddy. This second time with the arm flapping gets him 1/2 a point. I told him not to worry about it because I'm sure a lot of 2 year olds flap like that when they get excited, and while that's true, sometimes it does seem that she's not really aware of the fact that she's doing it until you point it out to her. The flapping itself is not the problem, it's the awareness. So the tally is: Daddy 1.5, Mummy 0. Boo.

Anyway, this post is taking way to long, so I'm not going to type out all the new gross motor goals they put on her IEP. They're all about gaining more independence though. But with her walker, not her crutches. Going up and down steps, getting in and out of all classroom chairs, carry things around the classroom, get to the classroom from the bus in less than 8 minutes...you know, that sort of thing.

Now I'm going to bed. Sorry for how long this is. :)

Preschool and valium

Avery started preschool last week!! I can't believe it! But so far it's going great, and she loves it! Once she's settled in properly (in about a month) they'll do the PT evaluation to see what she needs specifically as far as physical therapy goes, but until then there are also a whole bunch of other goals on her individualised education plan (IEP). What a great program. There are 8 kids in her class, 6 boys and 2 girls. The other girl's name is Ava, so they have an Avery and an Ava! The teacher is really great, and then there are also two paraprofessionals in the classroom with them. Today they did some fingerpainting. Avery has an issue with getting her hands dirty, so I was pleased to hear that she didn't get too bothered by the paint on her hands, and that once they started she actually got into it a little bit, so that's great.

At the end of her first day
Waiting for the bus
Still waiting

An update on the valium front: We started giving her 0.3mg of valium once a day before bed. The first week she seemed to be more irritable and sleepy and stuff, but then that sort of went away, but there was no noticeable difference in her muscle tone. So we upped the dosage to 0.3mg twice a day (before nap and before bed), and now it does seem to be making a difference. It's a lot easier to put her braces on even, because her ankles are a lot more flexible. Since she started taking it she's also made some exciting progress with the standing and walking. She will now attempt to take a step or two before she falls over when she balances independently, and on top of that she can also stand independently for longer than before - sometimes for almost 10 seconds! So that's exciting, and I don't know how much of that has to do with the valium, if anything, but as I said, the valium is definitely making her muscles more relaxed, which is great. We see Dr Brown again next week so we;ll talk to him about the dosage and how long she might be taking it, etc, because we still only want to give it to her for as short a time as possible.

Preschool Program

Well, this is great news! A couple of weeks ago we found out that Avery qualifies for the REACH preschool program! We're so excited about this, because after going to the meetings and hearing about how they help these children, I think it's going to do her the world of good! And not only that, but I think that she will love it too. To qualify for the program the child has to have a developmental delay in at least 2 areas. We went for her evaluation back in April, which took probably about an hour and a half. When we arrived, Avery went with two therapists (occupational and speech I think) to be evaluated, while I went with another lady who's job it was to ask me all sorts of questions about her to get some idea of what life at home is like and what she's capable of. Avery had a great time playing with the two ladies, and was gone for probabloy almost an hour, and of course they came in gushing about how sweet she is - she has such a knack for making people fall in love with her!
Anyway, the areas they graded her in are as follows: Gross motor, Fine motor, Cognitive, Language, Self-help, and Social/emotional. At the time of testing she was 26 months old, and this is how they graded her, with age-equivelence and delay percentages:

• Gross Motor: 10 months (62%)
• Fine Motor: 18 months (31%)
• Cognitive: 21 months (20%)
• Language: 24 months (8%)
• Self-help: 18 months (31%)
• Social/Emotional: 24 months (8%)

I was actually a little concerned that she wouldn't qualify for the program because while I knew for sure that she was way behind in gross motor skills since she can't walk, but I didn't know whether there would be enough of a delay in another area since she's so smart, and with this new baby arriving in August, I was really hoping and praying that she would get into the program so that she gets the extra help it will give her! I'm already so much more limited in how much I can do with her every day, because my pregnant body just won't let me get down on the floor with her or bend down to help her walk and stretch etc as much as I would like to, and I feel really bad about that, and then once the baby arrives I will be able to physically do all that stuff again, but I just won't be able to devote as much time to her therapy as I have in the past since I'll also have a newborn to care for. So I am thrilled that she'll be getting that help from preschool too!! I can't believe she's old enough to be leaving me for any amount of time though!!! But I am comforted by the thought that I know she will absolutely love it. She loves being around other children, and these days when I take her to nursery at church she's saying goodbye to me before I even put her down! She just loves it!

So anyway, we don't know yet exactly when she'll be starting or how many mornings a week it will be, and the next step is drawing up her Individual Education Plan (IEP), but I'm excited that at least know we know she will be going, and it will be great for her. Having other children around her who are walking will be such a great motivation for her!

We're still struggling with the valium question, so if there's anyone out there who can share their experiences and advice, please do!!! Thanks!