Monday, June 25, 2012

No Botox for Joshua!!

Three months ago, we first saw the visiting Rehabilitation Team from the Adelaide Women's and Children's Hospital, who specialise in seeing children with Cerebral Palsy.  At that time, they recommended Botox injections to reduce Joshua's spasticity (high muscle tone).  They do not do the Botox here until the child is 2 years old, so he was booked into the clinic this week since he turned 2 last month he can now have the botox.

So the plan was that today he was to see the Rehab Team again, and the Botox would get done on Wednesday if we were going ahead with it.  This would have involved putting him under general anaesthesia and injecting his muscles with the toxin.  Needless to say, I was anxious about the whole thing and the timing was not the greatest being that I am pregnant and my due date was last week, so either way you look at it, we would have been dealing with this and a newborn, or dealing with this and me being heavily pregnant with the potential to go into labour at any minute.  Neither option is too appealing really.

So we took him back to see the team today and we had an extremely positive appointment.  They were very happy to see the progress that Joshua has made over the last three months, and in fact, his muscle tone has improved so much since they last saw him, that they are no longer recommending the Botox treatment at this time.  This is really a relief to me right now!  The Doctor basically said that even though he does have high tone, he doesn't think that the tone itself is going to be his biggest obstacle.  That his challenges are more to do with motor planning than with muscle tone.  By that he means, the way he plans out movements in his brain...  an obvious example is the fact that Joshua crawls with a bunny hop crawl rather than the normal reciprocal kind of crawl.  In other words, his brain is planning out weird ways of doing things rather than what we would consider the normal or correct way of doing it, and he sees that as being a bigger problem than the actual muscle tone.
He also said that sometimes, what are initially seen as being big obstacles (In our case, the high tone, the marked preference for using only one side of his body) can decrease over time as the child gets older and the fact that Joshua is moving well, using both hands (even though they are not equal) and getting better with those things at 2 years old is extremely positive.  What can sometimes happen is that as the child's bones grow, the muscles have trouble growing with them because they are too tight, and in that situation, we may consider botox at some time in the future but not right now.  He thinks his AFOs are enough to take care of the tone in his ankles, and his right heel not touching the floor all the time is not a huge issue.  They said it is the case because the knee is tighter but that hopefully, the longer he is on his feet and walking, the more that will improve.

Basically, they are really happy with Joshua's progress and Joshua was showing off in his walker and doing a bit of standing on his own, the Doctor kind of said that he will need his walker for a bit but who knows what he will do from there.  And "Is he going to walk in the next year, well we don't know, we just have to wait and see" and I was like Um yeah he definitely is.  The physio from Adelaide said he thought he was pretty close to being able to take independent steps, and that is what I think too!  And when you see him showing off with his walker it makes you think it is more a confidence thing...  the walker gives him confidence, he just needs to get brave enough to try on his own.

So overall a super positive appointment, and they have said they don't want to see him back at the visiting clinic until early next year.  :)

Friday, June 1, 2012

2 Years Old - Where we are at

This is a little bit late, but I thought I would wait and do it all at once.

Joshua turned 2 years old on May 20.  I woke up on the morning of his birthday and I could hear him playing outside with his Daddy, and I updated my Facebook status while I was still in bed.  I shed a little tear then, but it wasn't really sad tears.  More just emotional, thinking about how far he has come and how he is not a baby anymore.  They were short lived though, and I didn't dwell on any of the negatives from the past.

Joshua is really continuing to do amazingly well.  We have our challenges, but in many ways, Joshua is just like any other 2 year old boy.

He loves Cars.  In fact, he loves anything transport related.  He would be happy pushing his toy cars around all day long.

He loves playing outside and riding his bike.

He dances along to music and has favourite TV shows.  He loves Giggle and Hoot, Thomas the Tank Engine, Roary the Racing Car, Chuggington, Driver Dan's Story Train, and Play School.  

He throws tantrums when he doesn't get his own way.

He gets excited when his Dad comes home from work and loves to play on the floor and climb all over him.

He sleeps with his two favourite bed time friends, his "Snuggles" (A blankie with a Monkey head on it) and Hoot the Owl that plays a lullaby.

He loves swimming and he is great at it.

He likes other kids and he goes to Day Care two days a week.

When Joshua was a newborn and in intensive care, his Doctor told me that no matter what happened from that point in time, Joshua would be followed up until he was 2 years old.  He said to me that he had just seen a little girl for her two year old appointment, that she had a similar start to life to Joshua and that he'd just discharged her from the outpatient clinic as she was doing great, 100% on track with all her milestones.  I appreciate that he told me that, it is nice to have hope especially when all around you the news is so bleak, and the reality is that the possible outcomes are many and varied.

Well today, we had Joshua's 2 year old appointment with that very same Doctor.  We don't have that same kind of "happy ending", where Joshua gets discharged from his follow ups because he is 100% where he should be.  Because he is not.  He is however, continuing to make steady and pleasing progress.  The appointment wasn't anything much, really just checking in with his Doctor so he can see how he is doing.  I decided to let Joshua walk in there in his walker, and the nurses just loved seeing him walking.  One of the nurses said that it made her day.  His Doctor was also impressed and said it was great to see him getting around so well.  His Doctor filled out the form for me to be able to get a Disabled Parking Permit.  That will really make my life easier when taking Joshua out with his walker.  I feel a bit guilty about it, like we shouldn't have one, and I won't use it if I am just using the stroller or something, because in that situation it is really no different to any other mother putting a 2 year old in a stroller.  But when he uses his walker, it is really hard work when I have to park so far away from where we are going.  I like taking him out to do activities and things, and most parents can put their toddler into a stroller, walk to where they are going, and then let them out so they can walk and run and play.  If I take Joshua somewhere in the stroller, it means he cannot walk when we get where we are going, and if I cannot park close by, it is a marathon effort to get him and his walker to where we want to go.  One day I took him to the library and the only spare car park was right at the end (apart from the disabled parking spaces) so I parked at the end, and then my heavily pregnant self began to wrestle Joshua and his walker across the car park to the entrance.  Meanwhile, an older couple pulled up into the disabled parking space (they had a permit) and out they got from their car and walked in.  Neither of them appeared to have a lot of difficultly walking, they just got out of the car and in they went, and I couldn't help but think in that sort of situation that I really could use the disabled parking spaces more than them, cos I am pretty sure it was much harder for me and and Joshua to get in there than it was for them.  So, I will put the paper work in now that his Doctor has filled it out, and hopefully that will make things a bit easier for us when we go out with the walker.  His Doctor said yet again, that he feels Joshua's biggest problem is going to be with communication.  Maybe I am not worrying enough about this, because I see him making progress and just assume that he will continue to do so and it will all be fine.  He has pretty much been saying it to me for a year now, and every time I take him back he is better than he was the time before but he still says it.  Joshua's physio has also suggested that I take Joshua to a private Speech Therapist because we are really not getting a great deal of support in terms of speech from our Early Intervention Service.  Technically, we don't see a speech therapist, his Occupational Therapist is also supposed to work on speech with him and she does, but I don't totally agree with the methods they use.  Well theoretically I do, but in practice, it honestly just seems too much to me.  For instance, they are big on labelling...  giving labels to everything that the child is seeing and doing to help expand their language.  Good idea.  But I just feel that they go on TOO much.  For example, one day, we arrived at Therapy and were waiting in the waiting area for our therapist.  Another lady walked through the doors and Joshua got upset, presumably because she went through the door and not him.  I said to him "Oh you are sad because the door opened and you didn't get to go in" (so, I labelled it for him) and then his therapist appears and no joke, the whole walk to the therapy room she is saying over and over again "You are sad but you are still walking"  on repeat.  I am thinking seriously, can we just move on, yes he was sad, but he doesn't need to stay sad and dwell on it, lets distract him from that little incident and go be happy and play with toys.  I feel like my strategies are more in line with speaking to him like a real person, than with speaking to him like...  I don't even know what.  Because if he is playing with a car, I am quite happy to say "Yeah, you got the car, drive the car" but I am not so happy to sit their repeating over and over again, "Car, thats right, you are looking at the car, you are holding the car, Joshua is driving the car, yeah you are looking at the car" like a running commentary of every single move he makes.  I don't think he needs that and its not natural.  Every single word that he has learned has not been because of a therapist, it has been because of me and the way I do things with him so obviously it works ok for him.  And then there is the part where if I happen to say something during the session that the therapist thinks is good, she will praise me for saying it and it just feels so patronising.  I am curious to see what approach a different speech therapist would use so I may look into it over the next few months.  His Physio doesn't do this stuff.  I think she is supposed to, because it all comes down to the DIR/Floor time Therapy model our Early intervention is supposed to use, but she is just a lot more natural.
Anyway, back to the Doctor's appointment...  it was fairly short and nothing much to report from it, the main gist of the appointment was that Joshua's Doctor said he is certainly doing much better than they would have expected from his scans.  Exceeding expectations.  My response to the Doctor saying that was "Yep, Neuroplasticity!".  He smiled and looked a bit surprised by my response.  Neuroplasticity basically refers to the brains ability to re-wire itself around the damaged areas, and is the reason why it is virtually impossible for a Doctor to look at a child's MRI and predict their future, because nobody really knows how that child's brain is going to go on and rewire itself around the damage.  So, Joshua's brain hasn't done a perfect job of rewiring itself, but its done a pretty good job, as the impact of his brain damage is not as severe as they would have expected.  One good moment of the appointment was when Joshua decided to climb up onto the Doctor's brief case which was beside the desk, and then pull up to a stand on top of the brief case using the desk, and start banging all the keys on his computer keyboard.  It was just a little reminder for the Doctor not to underestimate him LOL.  He said "Oh I can see you are one that we need to keep an eye on, getting into things!"            

At 2 years old, Joshua does not yet walk.  He got a walker when he was 21 months and does wonderfully with it.  It took him a month to learn how to steer it, and now, three months later, he can practically run around in it if he wants to.  He doesn't yet get himself up into the walker to walk around, only when I put him into it (though he has all the skills to do it himself, he just doesn't yet) but he does so well in it, and shows his head strong nature by running off in the opposite direction to where I am wanting him to go!

He still crawls non-reciprocally, or bunny hops around the place.  He is cruising the furniture much more now, and is really starting to test out his legs by letting go and standing independently for short periods (up to about 30 seconds) He is now quite stable when you walk with him holding only one hand.  It is really just a matter of time before he starts to take his own independent steps.  (I have no idea how MUCH time, but he is putting all the pieces of the puzzle together and it will certainly come, possibly sooner than later!)

He is now wearing hinged AFO's, which support his feet and ankles in the optimal position for standing and walking, while still moving to allow for some of the natural up and down movement of the foot.  (His first pair were fixed AFOs, which did not allow for any movement of the ankle)

In terms of fine motor skills, he is learning to feed himself with a spoon or fork.  He is very good at the hand to mouth action, he mainly struggles with the scooping aspect of things.  In the true spirit of a 2 year old though, he often insists on doing things himself, even if he can't *actually* do it himself.  Which is both good and bad at times!  He has also started to understand some basic things like trying to stack large wooden blocks on top of each other to make a tower, and with other building sets (such as Duplo) you can see him trying to work out how to put pieces together.  Even though he may not successfully be able to do things, you can see his brain understands what is supposed to happen even if his body can't make it work.  The other day during a physio session, we witnessed Joshua appear to sort colours.  He intentionally placed an orange ball down on top of the orange hole, and then when given other colours, he correctly placed them most of the time.

Language wise, his receptive language is improving all the time, which is evidenced by his ability to follow instructions.  For example, basic requests like "Give Mummy your Bottle" he is starting to comply with.  And even if he doesn't actually follow the instruction, I can usually tell whether or not he understands what I am saying, for example if I ask him to get me something and he looks over at the object, then I have a fair idea that he knows what I am talking about, even if he doesn't actually go and get it for me.  Same as when I am asking him to choose a certain object when given options (for example, with flash cards, apps on the iPad etc)  If I say "Where is the Apple?" if I see him look at the picture of the apple, it is fair to say that he knew what I meant, even if he then decides to grab hold of a different picture. Not quite as satisfying as if he was to actually do it properly, but still encouraging.
His expressive language is also making slow progress.  He says a few words now, including Car (which he uses for all modes of transport and anything with wheels including things like strollers, vacuum cleaners etc), He says Brrrrrrrv, being the noise for a car or other transport, He says Ra Ra, which is his word for all animals and also the sound that all animals make.  He calls his Monkey Snuggles Blankie Ra Ra, and also calls Hoot the Owl Ra Ra, he calls our cats Ra Ra, and all other animals, Ra Ra.  He says Door and Wall (which he has learnt from coming into the toilet with me!  LOL)  And he says Star and Dada or Dad, and Bye bye.  He also says Ball.  He also likes to say "Whoa" as a bit of an exclamation.  And his word for everything he doesn't have a word for is "Da".  He is not totally consistent with all of these, and I think as his Mum, I understand his attempts at verbal communication better than anyone else (which is pretty normal really) but he is certainly trying to express himself with the limited number of words he has.  I consider him to be very expressive and communicative, even without having the typical number of words for a child his age.  Interestingly, he also puts two words together, despite having a limited vocabulary.  For example he says "Bye bye Car".  The girls at Day Care have commented to me about him doing that also.    

As always, I am pleased and grateful for the progress that he continues to make.  June is going to be a pretty big month for Joshua, as in the next few weeks, he will become a big brother.  Nothing like a new sibling to turn your little world upside down.  He is also going to be getting his Botox on the 25th June.  his Doctor has never seen this done before and has asked me to get the nurses to call him to come and see it when it happens (so long as he is not busy doing something more important) as he is really keen to observe it, and wants to see Joshua again a few weeks after his Botox so he can see what kind of difference it makes for him.

Joshua's 2 year Stats are:

Weight:  11kgs (24lbs 3oz)  (8.5%)

Height:  85.2cm  (33.5 inches)  (24.7%)

Head Circumference:  They don't measure this anymore once they turn 2, which is crap because I don't know where my tape measure is.  LOL  I will have to find it because I am really curious to know what it is now.  I know it is still well below where it should be, but want to know how much growth it has had over the last 4 months since it was last measured.  I am sure it is still on the 0% though!

It appears that he has jumped up the percentiles since his last weight and height check.  I am pretty sure his weight was about 3-5% last time and his height around 15%, so he is obviously growing....  I really need to check his head.

If you haven't already seen it on Facebook, I made another video, this time for Joshua's second year.  You can watch it here :)

Joshua's 2 Year Old Video

 
Also, if you have the time and haven't already seen it, I would also like to bring your attention to another great video that was made to promote awareness of Cerebral Palsy.  It was made by Rachel, one of my fellow HIE parents, her son Cohen is also a May 2010 Baby just like Joshua who also suffered from a HIE event and now has Cerebral Palsy.  Cohen is the main star of this video and he is just gorgeous, but Joshua has a few second of fame in it too :)

Cerebral Palsy - What I want you to know!