Why would you??

I would have thought that it was obvious that I should not be your choice of confidant if you wanted someone to complain to about the fact that your 10 month old baby has just started walking and you think it's just too soon! Why would you do that?? I was talking to a friend of mine the other day and she was complaining to me because her son has just started pulling up on things and walking around holding on with one hand, and this upsets her because he was only army crawling before that and she wanted to see him crawling around on all fours for a couple of months first. Seriously, what did she expect me to say to that? "Oh yes, I'm so lucky because my 31 month old isn't walking yet so I still get to enjoy watching her crawl around on all fours"?? Sometimes it's like people jsut don't think at all before they open their mouths. So I just told her that there are many far worse tragedies than having a walking 10 month old. Nincompoop.

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.

Specialists...

What is it about medical specialists that makes them so impossible to get hold of?? The first time I tried to call Dr Brown (Avery's physical medicine guy) it happened by some miraculous allignment of the stars that not only did someone pick up the phone, but it just happened to be Dr Brown himself!! A modern day miracle! However, that was obviously the only time that that has or ever will happen. We just picked up Avery's valium prescription this morning, after about 3 weeks of trying to get in touch with somebody - ANYBODY - at Dr Brown's office to have them fax over the prescription to the pharmacy! Apparently it is office policy to never answer the phone, and to let it go to voicemail instead so that they can just call you back. Not only that, but on the voicemail message itself it warns that it will take 3 business days for them to return your call, but that seems to be rather optimistic. And then, when I finally did get a call back about the prescription, it happened to be during a rare moment when I didn't have my phone with me, so the woman left a message asking me to call back and leave a message for her to let her know which pharmacy to fax it to. So I tried, and went through the whole process of getting to Dr Brown's nurse's message line, and then couldn't even leave a message because their voicemail inbox was full!! Anyway, quite ridiculous, but probably not that unusual in the world of medical specialists I'm assuming. I also had a really hard time getting hold of Avery's neurosurgeon when we thought her shunt was malfunctioning a few months ago, and there are very few things as frustrating and stressful as not being able to reach your child's doctor when you're dealing with a potentially fatal problem! Of course, there's a whole system in place for moments like that, but having to call someone to have them page your doctor and then wait for what can seem like hours for him to call back, only to have a really hard time having a conversation with him because he can barely hear you out on the windy golf course he's on...yes, it's frustrating!

Valium Decision

Well, we've finally decided to give valium a try. I joined a few cerebral palsy related groups on facebook and asked for everyone to give me their opinions from experience, and a couple of people got back to me, and so that helped a lot. I find that it's so difficult to find the support and guidance we need, but things like Gabriel's Life and these groups on facebook really help. It's one thing having good doctors and professionals to guide you and give you advice, but I also really think that we, as parents of a child with serious medical conditions, need each other just as much. Doctor's know textbooks and have in-clinic experience with other patients, which is of course important, but other parents have the hands-on experience of living with and caring for their children in a way that only parents can, so we are able to support and advise each other in ways a doctor never could.
Anyway, the purpose of this post was jsut to say that we're going to be trying the valium. We've heard some good things and some bad things, but more parents who got back to me say that it's been a huge help in their child's life than not, so we're going to give it a shot. We can always stop if it starts affecting her in negative ways, but at this point we both agree that it's really important to do whatever we can before her bones and joints set too much - the sooner she walks independantly the better. Lisa, her physical therapist (the one we love and has been working with her since she was 4 months old) told us something the other day that made me take a step back and realise that we really need to be doing even more than we already are. Gabe asked her whether she thought Avery would ever walk completely normally, or whether you would always be able to tell that there was something wrong with her, and Lisa said that she would probably always have a little bit of a noticably crouched posture when she walked. I think I always assumed (at least since we were told that she would eventually be able to walk independently) that once she learned to walk you would never be able to tell that she had cerebral palsy because she would be walking normally, but apparently not. Of course, the fact that she will walk is miracle enough, but I don't want for her to have to live with any kind of struggle that she doesn't have to, so if there's anything we can be doing now to help her walk normally, then I want to do it. We're still waiting for the TheraTogs and her new walker, which I'm getting a little impatient for because she's gone backwards a little bit with some of her posture and stuff. Not much, but of course I feel that we can't afford any loss of progress. So, we're having a little trouble getting hold of her valium prescription, but as soon as we get it we'll start her on it and hopefully will be able to see some significant improvement in muscle tone, etc, pretty quickly.
It may be a little while before I post again, because I am still pregnant even though I felt sure this little boy would have arrived by now!! But he's taking his own sweet time and doesn't seem to mind how much agony he's putting me through!! Oh well.... sometime in the next week or so this will all be over and I will have a brand new little baby boy to show for it and the world will once again be a happy and accessible place!

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!