Options

This morning at PT I was talking to Avery's therapist about different doctors and treatment options and all of that, because sometimes (okay, a lot of times) I worry that I'm missing something, or that there are more things I could and should be doing for Avery. I've been thinking about it a lot. A lot of my blog buddies seem to have taken the stem cell infusion route, and to be honest, since Avery's diagnosis didn't occur until two weeks before she was born, this was something I hadn't heard anything about when she was born, so we never kept her cord blood, so that wasn't an option for her at the time. I felt bad about this, because although I know the research is limited with the whole stem cell thing, I do wish we would have known about it at the time, because even if it hadn't done anything to help her, it certainly wouldn't have done any harm! I've stopped feeling bad about this though, because as I said, it couldn't be helped - in all the research I did during the short time between Avery's diagnosis and birth, the whole stem cell thing never came up, so I didn't know about it, and I've come to accept that if I was meant to do it, I would have been inspired in my research to find information about it. For us, it apparently wasn't meant to be.
Anyway. The reason I've been thinking about this recently is that Avery isn't currently seeing a neurologist. We're seeing her neurosurgeon on Thursday of this week, which I'm sort of excited about because we haven't seen him for almost a year, which is the longest we've ever gone! But Avery used to see a developmental neurologist until he moved to Idaho, and then we started seeing Dr Brown instead who is a wonderful physical medicine doctor. We love him, but I worry that we should be seeing someone else as well as him...I don't know. I was asking Lisa (PT) about what she thought, since she deals with other kids like Avery and knows what sorts of doctors they all see, etc. We were talking a little about the orthopedic doctor we took Avery to almost 2 years ago - he was actually the doctor who officially diagnosed Avery with cerebral palsy. We got her original prescription for her walker from him, but he wouldn't write a prescription for AFOs for her because he didn't believe that braces actually helped. I'm not sure what he would have had us do instead. Lisa was saying that there is now another pediatric orthopedist in town, but that she's pretty sure that he would never prescribe AFOs either. She was saying that she's also quite certain that if we took Avery to an orthopedic surgeon right now, they would recommend some kind of surgery, such as tendon lengthening. She says that as a physical therapist she has mixed feeling about tendon lengthening. *sigh* why can't everything be black and white?? I want to do what is best for my little girl, but how am I supposed to know that what I'm doing is what's best, and not just what one person thinks might be best?
Anyway. Sorry - a rambling sort of post, I'm just in a little bit of a quiet panic because I worry that I'm not doing everything Avery needs me to do.
I do remember that back before Avery got botox in her adductors back in November 2007, Dr Brown seemed to think that she would learn to walk independently during the several months of the botox's effectiveness, and that once that happened she would be using those muscles so well that she wouldn't need to get botox again. Obviously that didn't happen, and her poor little muscles just keep on getting tighter and her tone keeps on getting worse, even though she's working harder and harder, so of course I worry about her. She's having to fight against her body more and more as time goes by, but shouldn't it surely be getting easier?! One of the evidences of this is the fact that her constipation has been getting progressively worse and harder to manage. It's directly related to the muscle tone and tightness of her legs and the other muscles that are affected by her CP, because of course this kind of constipation (neurogenic constipation - I only recently learnt the name for it!) is a reslut of the intestinal muscles behaving in the same way as other muscles affected by CP. We used to be able to control it with an abundance of prunes/flaxseed/apple juice/water in her diet, but it's been getting worse and worse and we have to give her miralax now. I hate having to medicate her in any way, but we just can't control the problem without it anymore. Dr Brown prescribed colace, but have you ever tasted that stuff?? It's foul, and Avery screamed every time I tried to give it to her, and half of it dribbled out of her mouth in her distress, and even after all that she still wasn't going any more often, and even when she did there was still blood every time I wiped. I feel so bad for her. *sigh* What to do?

Today

I've been meaning to take my camera to Avery's weekly PT session so that I can get some photos of what she does there, and I finally remembered to take it this morning! But I only remembered I had it AFTER she'd finished doing stretches, and so I took a couple of pictures, and then promptly forgot I had it again until it was time to go home! Oh well, I tried.
So here are some pictures of Avery trying to stand up with her crutches all by herself.





Avery's PT's name is Lisa, and we just love her so much! She's been working with Avery since she was about 5 or 6 months old, back when she was getting PT through Early Intervention, and then when Lisa left to work for Carilion, we followed her there because we just loved her so much! She does such a fantastic job of pushing Avery and getting so much great work out of her, and yet Avery just adores her, so it's absolutely perfect! For a while after Lisa moved to Carilion, we were getting PT through carilion as well as CRD (early intervention), and the "replacement" PT assigned to us through CRD just didn't have "it", whatever "it" is, and the weekly PT sessions with her were not happy times for Avery. She just cried and cried, and got angry, and the PT was pushing her and trying to make her work, but because she was so unhappy she didn't get nearly as much done, and it left me wanting to slap the PT. So we weren't sad to leave her behind. And it made us even more grateful for Lisa, who knows how to make Avery work hard while still keeping her happy. It makes physical therapy not only happier but also so much more productive.
In the pictures you can see she's wearing her theratogs over the top of her jeans. We just do that for PT - when she goes to school I put them on underneath her clothes. They go on first, even before her underwear - that way she can still use the potty without having to take them off.
We've been worrying about her recently. She has been making so much progress, and I am constantly amazed by her, but I just worry about her developing hips and joints because while she is always progressing in what she's able to do, her muscle tightness and range of motion is getting progressively worse. That can't be good. Every time we've seen her physiatrist over the past year, she's been walking better and better, but having to work harder and harder for it. We've been wondering whether we should just talk to her doctor again about going back onto valium or something at a higher dose, even though it affected her sweet disposition, so that she can get mobile on her feet once and for all before this muscle tightness does more damage to her poor little hips. We already know that her posture and gait will probably never be quite "normal", but I worry that there may be more that we could be doing to prevent further damage. *sigh* Wouldn't it be nice if we could see into the future just enough to know whether all the choices we're making are the absolute best?

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. :)

Picture to go with yesterday's post....

I had this particular photo in mind when I was writing that post yesterday, so I thought I'd post it too. She's about 5 weeks old here. I remember at the time that I thought this was the cutest little picture showing Avery's scrawny little legs and how long and thin she was! Now it makes me a little bit sad because now that I have Brogan I realise that healthy babies really do have quite strong legs from the very beginning. And do you see what I mean about her little long thin feet? They still look almost as fragile now. I do now wonder what her legs and feet would have looked like had she not been born with hydrocephalus and CP. I think the other thing that's been bothering me a little bit is that it now makes me wonder whether I should have been doing a better job. I think that because I was never really aware of how much she was affected I now wonder whether I would have pushed her more and worked harder to help her reach milestones if I'd been more aware of what she "should" have been doing. I don't know. I suppose there are good things and not so good things about her being my first, because it meant I had all the time in the world to devote to her, but it also meant that maybe I wasn't completely aware of how much help she really did need, if you know what I mean.

Physiatrist appointment

I've been slacking...again. But we've been really busy, and then both my babies got colds. Excuses excuses :) SO there is stuff to catch up on.
Avery had an appointment with Dr Brown, her physiatrist, who happens to be my favourite of all her doctors. He's just so nice, and he's communicative, which is so important. Plus, he was the first one to tell us with confidence that Avery will eventually walk independently, which may have softened my heart toward him a little!! :D Anyway, we were supposed to see him in August, but I happened to go into labour on the morning of the appointment, so we had to cancel ;)
They do all sorts of measurements of Avery's range of motion and reflexes and all of that good stuff whenever we go, and it's been interesting the last couple of times that while Avery has improved in her walking and mobility immensely, her muscle tone and range of motion has barely improved, and in some areas has actually decreased. Dr Brown says that what it means is that she is fighting her muscle tone with every step she takes, and that it's pure determination on her part that she's doing so well. That's why he prescribed the valium in the first place - to make it easier for her to move without having to fight her own body so much. They were very happy with her progress though, and as always she was an absolute joy and seemed to make everyone's day! Our appointment wasn't until 1pm, but it turned ou that we were his last appointment of the day, and we were there for 2 hours, and Avery had a great time showing off her mad skills to them :)
Here is the rehab plan Dr Brown gave us this time:

Maybe we can talk daddy into buying a pony (haha), but if he doesn't go for that a peanut will work (The really big ones that you can sit on). Hippotherapy would really help her, the more the better. AFOs are small but some trouble donning the left. They need to be adjusted or replaced.
I think it is worthwhile to try and gently slowly carefully increase the Valium as we discussed: the ladder is first to go to 0.3mg in the am and 0.6mg in the pm, wait 3-7 days, then go to 0.6mg twice a day. If she has any problems, you can always go back down and you can definitely stop at a certain point (if she is tolerating it) and just stay there (like you could climb or use a ladder). From the above point you can go to 0.6mg in the am and 1mg at night, but I wouldn't go past 1mg TWICE DAILY for now.
Laura [the PT who does all the measurements etc, who also happens to be a friend of Gabe's from his days at the Rescue Squad] will discuss the adjustment of how we wear the theratogs that really seemed to help today.
Disposition: Return to office in 3 months.

So I am now even more sure that hippotherapy is more than worth our time and effort! I mean, Dr Brown couldn't stress enough how much good it would do Avery. He said that in an ideal world he'd want to see her on a horse every day.
Avery has been complaining a little bit about her braces recently - we have an appointment at the orthotics place next week and a prescription from Dr Brown to have them adjusted or replaced.
Gabe and I are in different places over the valium issue. I increased the dosage as Dr Brown suggested to 0.6mg in the evening and 0.3mg in the morning, and Avery was irritable for more than a week after that. In my mind, I was still willing to give it another chance though because that week had also been a stressful one for us with some uncertainty with our house, and having family come visit over the weekend, so I decided to give the higher dosage another "normal" week before going back down. Anyway, Gabe was putting her to bed one night last week, and he called down and asked if we were still giving her 0.6mg, to which I replied, "Yes, I'm giving it til the end of the week", meaning I was giving the higher dosage til the end of the week and if she was still irritable I would go back down to the lower dosage. He said though that he's ready to stop giving her any valium at all though because he says he doesn't see that it's doing her any good. Hmmm.
Here's the thing. Avery is making progress. It's hard to know what exactly is responsible for the progress she's been making, because in the last few months she has started hippotherapy, started taking valium, started preschool, and continued with her weekly physical therapy. And in addition to that, she's also just getting older and more independent, so it's just impossible to credit her progress to any solitary one of those things. It also means that, while she has made progress since starting the valium, we don't really know for sure that she's made any more progress than she would have if she hadn't been taking it. Do we? Anyway, the way I feel about it is this: we decided it was worth trying, and since what's she's taking right now is an infant's dose, we should definitely continue to give it a chance to work on a slightly higher but still very conservative dose. Gabe seems to think more along the lines that since this tiny dosage doesn't really seem to be doing much, we should just stop giving it to her.
*sigh* It seems that more often than not, the right choice isn't clear.

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!

To Valium, or Not To Valium.....

Well, on Friday morning Avery and I took the long drive down to Radford to her Physical Medicine Doctor's new office. He used to come to Roanoke twice a month, but apparently there wasn't room at that office for him anymore, so now we have to drive an hour, which I know isn't that big of a deal, but when we've been so blessed to be within a five or ten minute drive from most of her medical appointments, an hour seems like a long time! Especially with gas prices being the way they are. I filled up with gas on Friday morning before we left, and with the appointment in Radford on Friday and then her hippotherapy out in the boonies on Monday, by Monday evening I had clocked almost 200 miles in the minivan... fun times!

But! That's not what I'm here to write about! So this appointment on Friday was with the Dr who had administered Avery's Botox back in November, and we just love him. He is a great doctor, and - just as importantly in my opinion - he's a great guy. He really listens to you and your concerns and observations, and he really takes the time to communicate and get to know you and make sure you completely understand what's going on - and that is a quality which is sadly lacking amongst many of these specialists I've discovered! So we really like him and trust him. Last time we saw him it was back in February, and at that point Avery was still not interested in walking and had to be really pushed to use her walker for even a couple of minutes. It seemed that the botox had begun to wear off, and he told us that we really needed to make sure we were doing her stretches faithfully to avoid having to do more botox and/or valium. Yep, valium - this is not a word which excites us. Anyway, Avery has actually made huge progress since February with regards to walking. We've been working really hard, and when the weather started getting nice I started taking her out for almost daily trips to various parks to help motivate her to walk, and I'd get her to walk to the park from the car. We put on her braces before we leave the house, and then once we get there I find a bench and put on her belt (I just use a soft belt of mine and put it around her chest and hold the end of it so that she's a little bit protected from falling) and put her in her walker, and most days she'll walk all the way to the park. It takes a long time - sometimes it can take almost 45 minutes to walk about 200 feet, especially if it's a nice day and everyone and their dog is out enjoying the weather - she gets distracted a lot! But the important thing is that she's been getting used to walking places. We've taken her to the mall to walk, and we've started getting to church early on Sundays so that she can walk in, and we've just been trying to make her understand that walking should be her primary mode of transportation - not crawling. It's hard work, but she's doing well, although there are of course still days when she just won't do it. And it's only been in the past couple of weeks that she's started to feel motivated to use her walker at home - before that it was like pulling teeth because she didn't understand why she should have to walk at home when she can get everywhere by crawling, which for her is much easier and much faster. So it's been really exciting that recently she's not only begun to be compliant when we ask her to walk at home, but she also occasionally even ASKS to use her walker! So anyway, on Friday they did the usual measurements and exercises to see how she's progressed since her last appointment, and it was pretty interesting. Her adductors (which were the ones which were botoxed) are actually tighter than they were last time, but she's actually doing more functionally. Dr Brown was saying that this must be because of how much we've been pushing and encouraging her, and she has motivation now which she just didn't have before, but he said that it's still really hard work for her, and you can see her fighting that muscle tone with every step she takes. So he wants us to start her on a baby dose of valium. We are very concerned about this, and he says we wouldn't be normal parents if we weren't concerned, but that we should really think about it seriously for her sake because he thinks the benefits would be more far-reaching than those of another round of botox. So we have the prescription sitting on our desk, and are now in the process of researching and weighing pros and cons and hoping and praying that we make the right decision, because of course we want to do the right thing, but of course with a drug like valium there are always risks. Dr Brown says though that he feels certain that it will make Avery's life easier and get her walking sooner because she won't be having to fight against her own muscles the way she does now. So I'm still not sure what we're going to do. But he also wrote a prescription for something called TheraTogs, which she has tried twice with her physical therapist, and they were WONDERFUL! I'm super excited to get those! The first time Lisa (PT) put them on her was the first time I've ever seen Avery walk with her feet pointing out instead of in - it was like a miracle! So I am really excited to get those for her, and maybe we'll wait to see how she does with those before we make a decision about the valium. I don't know. We're going back to see Dr Brown in 3 months. We may need to change the appointment since that's when this baby's due to be born. Actually, he was saying that was another reason that he would choose valium over botox because the botox would require intensive stretching and exercising again to be effective, and since I'm getting less and less able to do that stuff with her as I get bigger and more pregnant (which is true - I've barely been able to pick her up without killing my back recently, and I'm just in pain all the time), but the valium would do it's job whether I stretch her every day or not, basically. So, you know, if anyone's had an experience with any of this, I'd love some opinions....!!