Monday, March 28, 2011

Ignorance is Bliss

At least it would be.  Unfortunately, an unhealthy pre-occupation with developmental milestones comes with the territory for me.  The other day, I downloaded the entire master copy of the ASQ-3.  It is amazing what you can find on the internet when you look!  The ASQ-3 is the assessment tool they use at the Children's Development Team to determine whether or not a child has a developmental delay and in what area/s.  At our initial intake appointment I was told that a delay in more than 3 developmental areas would require referral to Carpentaria Disability Services, as they generally only accept the more minor cases at the CDT.
So, Joshua was last assessed by the Children's Development Team using the ASQ-3 at 8 months of age, at which time he was delayed in fine motor and gross motor skills, but on track with everything else.  Of course, I decided to take a look at the 10 month questionnaire "just to see how he is going" and it has done nothing but stress me out.  I am quite certain that he is now delayed in at least 3 areas.  I will know for sure next week, as he is having the 10 month old assessment with his physiotherapist then.
My main concern (in additional to his motor skills) is language development.  He is very vocal but he is yet to really move towards the kind of speech sounds that most children his age are making.
It is really hard not to stress about these things, but the truth is that it is beyond my control.  When I look at Joshua, I see an amazing boy who is making huge improvements all the time and I celebrate that.  He is doing so well.  But when you look at his abilities on paper such as with the ASQ, he appears to be doing terribly.  I say things to Rod all the time like "The other May babies are doing this .."  "He should be doing that" and Rod replies with, but are they normal babies?   I guess what he is trying to say is that it does no good to compare Joshua with children who are developing in a typical manner when we already know he is not, and that we should just focus on and rejoice in his own individual achievements. Which of course I do...  my last blog post is evidence of that.  But it is so hard...
So I asked the physiotherapist today if he is delayed in three areas when she does the assessment next week if he will be referred to Carpentaria Disability Services.  She said Yes.  That makes me sad.  One, because I love going to the CDT every Monday, the physio there has known Joshua since he was 12 weeks old, and Two, because it is an obvious indicator that he is now "more severe" and so needs a different service.  I should look at the positives, in that it would mean he will be getting more specialised help than he might be currently getting, but at the same time it is depressing that that is even the case.  (I don't know for certain yet that it is, but if it is not now, then I suspect it will be at his next assessment after that which is probably around 12 months)  Also, because I am an over thinker, I am also worrying about if we need to change services if I am going to be able to fit it in on Mondays, which is the day I currently don't work because that is when our existing therapy is....  if they can't see him on a Monday, I will be kind of screwed having to work that out....   But I guess I just need to take a deep breath and wait and see what happens.  Yep..  there are those words again.  "Wait and See".  *sigh*

In other news, I have started the process of trying to obtain mine and Joshua's medical records.  There is a research doctor in the US that specialises in HIE and he comes highly recommended by many of the other parents in the group in that he has helped them to get more answers about what happened to their child.  He offers his services free to families and basically he does it because it allows him to collect more case studies to go towards his research in possible treatments for HIE etc.  One such treatment is induced Hypothermia, which I believe is not available at the hospital here and even if it was, after much discussion on the HIE group I am uncertain as to whether or not Joshua would have been eligible for it as their is quite a specific criteria and it seems that maybe Joshua just wasn't "bad enough" to begin with and it must be commenced within 6 hours of birth.  Anyway, I am getting off topic here.  This doctor has agreed to review our case and see if he might be able to offer more of an explanation than the one which we have already been given.  (which is basically no explanation - these things just happen sometimes).  At first I thought I didn't really care, because it doesn't change anything.  But now Joshua is almost a year old and I am starting to think about another pregnancy.  (Not just yet people, don't get too excited!)  But in the next year or so I would like to get pregnant again and I feel like I need to know as much as I can to be able to make the best decision in regards to what to do in terms of prenatal care.  It seems that many of the other HIE parents choose to go for an elective C-section and often have additional monitoring during their pregnancy.  This is really not my style (obviously, since I wanted a homebirth with Joshua).  The thought of seeing an obstetrician during my pregnancy really makes me want to puke, as does everything about a hospital birth.  (Although, I admit the reality of it was not as bad as my imagination, but I suppose by the time I got to the hospital with Joshua, I was really beyond caring).  Anyway, my heart really desires to try again for another homebirth next time, preferably with the same awesome midwife I had the first time around.  I really think that would be the best thing for me, because she knows me now and knows everything I have been through with Joshua and I basically feel like she would understand any feelings I have about another birth.  But to start over with a stranger who wasn't there the first time, just doesn't really float my boat.  Anyway, although my emotional well being is obviously important, more important than that is making a decision that will ensure the best possible outcome for a future baby.  And if that means a hospital birth, then I guess I would have to suck it up and do it.  (Or not have another baby!!)  The main objectives for this doctor is to try and find an explanation for what happened to Joshua and to be able to advise on how it could be prevented in the future.  Obviously his ability to do so really depends on what he can get from the records available.  I am hoping I will be able to get sufficient information from him so that I can make a decision that I am comfortable with next time around.  Wish me luck, because I think getting all the records is the hardest part ;)      

1 comment:

  1. Oh Karissa...I hope this doctor can give you lots of useful information. Of course you want to know. And I do hope that another homebirth is in the cards for you the next time. I hope that Joshua does not need to change specialists, since it sounds like you are so happy where you are...but even if he does, he is still doing amazingly well and happy and thriving in your care. I am constantly awed by your fortitude and perseverance, and I know I've said it before, but he is such a lucky little boy to have such a strong, funny, loving mama.

    ReplyDelete