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 ;)      

Monday, March 7, 2011

Coming along in leaps and bounds!

The amazing Joshua has had an amazing week here.  He has had me crying happy tears nearly every day!
First of all, he started off  by holding himself up on his hands and knees.  He didn't push up to this position, I placed him down on the floor and he held himself that way.  It is just fantastic to see him bearing weight on his arms so well.  He is also getting better at pushing up.

Nice arms there baby!

He is also getting better at sitting unassisted.  Where it was once taking me several minutes to get him settled and supported enough to be able to take my hands away, it is only taking me a few seconds now.  He is getting much better at sitting and playing with toys, and he even sat on the floor last night while I fed him his dinner.  He also used to need his legs positioned in just the right way (flexed) in order to be able to balance, but he is now mastering straight legged sitting and starting to move towards side sitting.  

Sitting with toys

But perhaps the thing that has amazed me the most this week, is that my little baby is getting around.  It was only a few weeks ago that he started to roll from his tummy regularly.  Now he has put it all together and realised that he can roll in order to get places.  I initially thought it could have just been a once off.  But he has been doing it every day since.  Gone are the days of Joshua staying where you leave him on the floor.  I am SO proud.  

He rolled there from his blue playmat near the pig!

I couldn't wait to go to Baby group today and tell his therapists about the amazing progress he had made since last Monday, and of course, they were suitably impressed.  The OT looked at him and said "He is going to crawl, I know it!"  Not that I ever really doubted that he was going to get there in his own time, but how very wonderful to hear it come from someone else's mouth :)  

Keep up the good work my baby, you are amazing!




Tuesday, March 1, 2011

Joshua's Head (Or Lack of)

People often make the comment to me that Joshua's head does not look small, so I recently took some photos of his head to share on my May Mums board, so that they could see what I am talking about and so I thought I would share them here too.  What generally happens with Microcephaly, is the face grows normally but the head doesn't.  At the moment, the size of his head is not that obvious, especially when you look at him front on.   His current head circumference is average for a 3 month old baby.  He is 9.5 months old.  Because he has the "face size" of a 9.5 month old, people don't realise that his head circumference is in fact, as small as it is.

When you look closely however, you can see his head is not "normal".

The following picture illustrates the difference in head shape between a normal head and a person with Microcephaly:



The following photo shows Joshua with another baby of the same age (born the day before him).  You can see the difference in their heads quite clearly, as per the previous illustration.


Typically, a baby has a big boofy head.  When you look at Joshua's head from the top and the back, it doesn't look nice and round like a normal head, it looks somewhat rectangular.



Where the difference is most obvious however, is when you look at the size of his forehead area.  This really hasn't grown since he was born and is extremely noticeable when you look at it from the right angle, as it gives him a 'conehead" like appearance.  This is shown in the photo below:


When looking at him from behind on a slightly side on angle, you can also see that his head looks small on his face.


Joshua's head is like this because the damage to his brain has prevented it from growing normally.  It will likely become more obvious to people as he grows bigger.  Like HIE, Microcephaly is associated with poor outcomes, however it is also possible to have microcephaly and still be highly functional so this is just another one of those things that we have to wait and see on.  His doctor has told us that she would expect him to be a lot worse off given his head size, so in some ways, that is a positive sign.
In the mean time though, it is just super hard for me to find hats that fit him :)