Friday, February 24, 2012

21 Months - Progress Report

Today has been one of those days where Joshua has done a bunch of new things all in one day.  We have been fortunate that Joshua always continues to make slow and steady progress with things, but usually, slow and steady means that next week, he will do things a little better than he did this week, and so on, until a new skill is achieved.  Today has been a day of surprises where he has done several new things in one day and it is pretty exciting!

Perhaps even better, is the fact that he showed off in front of an audience!  Today we were visited by a visiting physiotherapist from Adelaide, along with his regular physiotherapist.  She comes to Darwin every 3 months to see the children that are with Carpentaria Disability Services and this is the third time that she has seen Joshua.  She is really happy with the progress that Joshua is making.  Joshua's biggest problem right now is the Hypertonia (High Muscle Tone) in his right leg.  His Cerebral Palsy diagnosis is Spastic Quadriplegia, which means that all 4 of his limbs are affected by high muscle tone.  The truth of the matter is though, that his right leg is WAY more affected than any of his other limbs.  And although having high tone in his other limbs make things more difficult for him, it doesn't prohibit him from doing things in the way that the issues with his right leg does.  I don't even feel like I can express the difference in words, to really convey how very bad is right leg is compared to his other limbs.  After touching his right leg, his left leg feels normal (even though it isn't).  The difference in tone between his two legs is really quite dramatic. And this is where Joshua's Cerebral Palsy impacts him greatest in a functional sense.  I am quite sure that if the tone in Joshua's right leg was the same as his left leg, then he would most likely be walking unassisted at this point.  It doesn't just affect him from a standing and walking point of view though, it also affects him in sitting.  His hamstrings and calves are so tight, that his right leg tends to remain bent at the knee.  This makes him very unstable when sitting on his bottom, so instead he W-sits.  I've mentioned this in another post before, and how it is not a recommended way of sitting because it can have a negative effect on the hips.  The impact of the tone in his right leg has become GREATER over time, not less.  For instance, at 12 months old, I have photos of him sitting beautifully on his bottom in long sitting (with his legs out straight in front of him).  At 21 months, this is now impossible for him without someone sitting with him holding that right leg flat to the floor or placing him in a leg immobiliser.  It is the number one thing that is holding Joshua back in terms of his physical development and the visiting physio today agrees that helping him with that leg is going to make a difference to him overall.  Last time she visited, she expressed her opinion that Joshua would be a "botox boy" and she still believes that.  Joshua is due to see the visiting Rehabilitation Team in a few weeks where it will be discussed further and it will most likely be on the cards once Joshua turns 2 in May.  (As it is not done until 2 years old in Australia).  
For the past week, Joshua has been wearing a leg immobiliser to bed.  It wraps around his leg and velcros in place, holding his leg perfectly straight, effectively stretching those tight leg muscles all night long.  I felt horrible having to do that to him, but it has not been as bad as I imagined....  He goes to bed at 7pm and most nights he has been sleeping through until about 4:30/5am with it on....   so about 10 hours....  Then I will take it off and let him go back to sleep without it.  He actually hasn't complained about it at all, and has been falling asleep without a fuss.  Thank goodness, because it is one of those things that is really for his own good even if he hates it, so it makes my life much more pleasant and eases the Mummy guilt at having to put him through that when he doesn't get upset about it.  The worst case scenario when it comes to high muscle tone like this, is that he will get a permanent contracture.  Meaning he will no long have voluntary movement in his leg.  If that were to happen, then he would not be able to walk.  So it is really important that we do these things to avoid that happening.

So, onto the exciting things that Joshua did while the Physio was here today.

  1. He stood completely unassisted for about 30 seconds maybe even longer.  By that I mean, I was supporting him in a standing position, slowly and carefully removed my hands from him and he remained standing independently.  Another child bumped past him several times trying to get to other toys, and even with that, he maintained his own balance (wearing AFOs).   
  2. We had some old phones out, and the physio was pretending to speak on the phone.  Joshua also held a phone to his ear and mimicked her.  This is the first time that Joshua has ever held a phone to his ear in this kind of "pretend play".  Usually, he just thinks a phone is a chew toy.  
  3. I sat Joshua in his little chair and asked him to stand up.  He stood up independently using the arm rests of the chair to help push himself up into a standing position.  It was hard work, but he did it, for the first time ever, without any help.  
Joshua is due to receive his posterior walker in the very near future.  The physio predicts that he will use it for a few months and then he might start walking independently, at least indoors.  He will likely still require his walker when out and about, for longer distances, on uneven ground or when around lots of other people.  And then hopefully be able to master those more difficult scenarios independently too.    
Although Joshua beautifully demonstrated independent standing today for the first time, the biggest difficulty for him is being able to transfer weight between each foot.  And it all comes back to the tone in that right leg.  Despite him now having AFOs, which hold his foot and lower leg in correct alignment, he is now compensating for his tone by keeping his leg bent at the knee while weight bearing.  This makes him unstable while walking (or trying to walk) because he lacks a stable base.  It could also be termed a "spastic gait".  

Another exciting thing that Joshua did today, is that he did some walking using a baby walker.  They are only made from light weight plastic and are really quite difficult to walk with but he did really good.  If you look closely at this video, you can see what I am talking about with his right leg...  he is not walking with his right foot flat to the floor...  he is essentially on his toes, despite having his AFOs on for positioning.  You can also see that he leans his body weight onto the walker quite a bit rather than just using it for a little bit of balance support.  This is still awesome progress towards walking though.  And motivation is always one of the biggest factors....  Joshua is so stubborn and its very hard to make him do something he does not want to do.  So it is nice that he appears to have decided that walking is something that he might like to do. LOL  Oh and he was also doing some really nice knee walking while holding onto the walker.  Which is pretty awesome too, because Joshua doesn't crawl reciprocally.  He bunny hops, moving both arms and both legs at the same time. So knee walking is pretty exciting, because he was moving both legs reciprocally (which is what needs to happen when you walk) so that is really good too.

Thursday, February 16, 2012

Birth Choices

I have debated with myself about whether I should post this now, or wait until after the baby is born and I have a known outcome...But what the heck, I am posting now.

It is not a secret that Joshua's birth was a planned home birth.  The topic of home birth tends to be a very controversial one.  For most people, you either love the idea or you hate it.  Some people are able to be supportive of others who are planning a home birth, even when they themselves have no desire to have one...  and other people are extremely vocal about what a bad idea it is.  It is not unlike other parenting debates.... breast vs bottle...  cry it out vs not crying it out....  They are hugely emotional topics and the truth is, there is never going to be a winner with these sorts of things..

Joshua's story is one that could easily be taken by those who are against home birth and turned into an example of why you shouldn't try and have a home birth.  Fortunately, I have never been on the receiving end of such judgement, but I have experienced it in more subtle ways.  For example, questions like "Do you regret not being at the hospital from the beginning?".  It is not an unreasonable question, nor is it outright accusatory, but it does carry the suggestion that maybe things would be different, had I planned a hospital birth.  That is honestly something that I will never know.  And I am ok with that.  But I honestly do not believe it to be the case.  Firstly, being in a hospital does not prevent this kind of thing from happening.  The vast majority of HIE babies are born in hospitals.  Some situations are simply unavoidable...  Everybody did everything right and the baby was still compromised.  Many cases can be clearly linked to medical negligence.  Being in a hospital doesn't eliminate human error.
I was quite amused recently, looking at the blog of a Obstetrician who is very ANTI home birth and was tipped off to the birth story of a woman who frequents one of the same forums as I do.  She put her birth story out on a public forum, and this Dr took it and pulled it apart on her blog.  It was titled "You risked your Baby's brain function for this?".  Sadly, this woman's midwife made some very questionable decisions, but eventually a hospital transfer was made and Baby was born in the hospital.  Very traumatic experience for the Mother, but thankfully the baby is ok.  I got to browsing this blog after being made aware of it due to this unfortunate incident, and this is where the amusement comes in.  This very Doctor, who wants to bash women who plan home births (She has another separate blog just for home birth horror stories by the way) has many entries on her blog about the kinds of negligence that takes place in hospitals...  It seemed very unusual to me for someone who is so pro-Hospital, to also be highlighting the sometimes very serious mistakes that take place in a hospital.  Her blog certainly did nothing for me in terms of making the hospital sound like a safer choice!

Home birth can be a hard choice to understand when you don't feel the same way, and I have been asked a few times WHY I want a home birth so much.  This article helps to explain a few things:
Home Birth Mothers still love their Babies

But I will try and explain it in my own words as well.  Despite what happened with Joshua, I still believe all of the things that I believed  about birth before having him.  I still want a natural birth, I still want to avoid common and unnecessary interventions, and I still think I will be happier in an environment that I am comfortable in.  I have seen several of the rooms in the Delivery Suite at the hospital...  Joshua was ultimately born in one, and I still cannot imagine how a woman spends hours in one of those rooms.  I literally turned up and got the baby out....  But having to labour there?
I spent the first part of my labour kneeling on my bedroom floor with my lap top on my bed and chatting with friends on Facebook.  When that got too uncomfortable, I had a few baths, I wandered around the house, used my gym ball, used my heat packs....  Eventually got into my birth pool.  I was comfortable, I had privacy...  my own husband didn't even know I was in labour until several hours had passed...  because I was content just doing my own thing.  And I can't see myself being content in a hospital environment..
That might sound selfish, and I guess it is a bit, because primarily I am thinking about what is going to make a painful experience LESS painful to me.  And to me the answer to that is being at home.  Some people want access to pain relief so a hospital is the clear choice for them...  For me, I don't want it...  I am WAY more scared of having a needle in my spine than I am of the actual pain....   so its important to me that I can be in an environment where I can deal with things the way I feel like it and not be bothered or subjected to hospital policies.
Statistically, a LOW RISK woman having a baby at home, is just as safe, if not safer, than if she was in a hospital.  Of course, the hospital has its place and it would be a very bad idea for ALL women to have their babies at home, because there are times when there is a genuine need for intervention.  Some of these situations are predictable, and women with certain conditions that are either pre-existing or come up during pregnancy would never be eligible to birth at home.  Other times, the need for intervention is not predictable, such as with Joshua, where a problem presents itself during labour and then needs to be acted on.  I am still not happy that I had to go there, but I AM grateful for the hospital and the fact it was there when we needed it.  I just don't want to go there if I don't need it!

So this brings me to planning the birth of our second baby.  The official explanation that I got from the hospital after Joshua was born, was that they didn't know what happened.  That "sometimes these things just happen".  That was not an overly reassuring explanation when thinking about a second baby.  How can you try to avoid a repeat of the situation when you don't know what the situation was?  At first, I thought that I didn't care what the explanation was.  That whatever happened, happened and that we can't change it now so there was no point worrying about it.  But in getting closer to thinking about a second baby, I realised that I needed to know more.  There was never any doubt in my mind after having Joshua, that I wanted my next baby to be born at home.  That I wanted the chance to have the birth that I wanted, but missed out on with Joshua.  But I also needed to know more about what happened to Joshua so that I could be comfortable in making that choice.  I will be the first person to tell you, that I don't wish to do all this again.  That a healthy baby ultimately IS more important than the birth experience.  But, to me, the birth experience is still very, very important.  Not important enough to put a baby at risk, but important enough that I will do everything I can to try and have the experience I want when there is no evidence to suggest that such a choice would be unwise.  So I set out on my quest for information.  I obtained all of our medical records and sent them to a Dr in the US that specialises in HIE.  I blogged about the outcome of that here.  Not long before I had my discussion with this Doctor, I found out that I was pregnant again.  A few months before we were officially planning to try again, and it was hugely stressful for me.  All of a sudden, I was really worried about the outcome for this baby and for the first time, had doubts about my plans to try again for another home birth.  I still didn't want to go to the hospital...  but I wasn't sure if I wanted to be at home either.  Instead of feeling excited, I felt really, really anxious.  Thankfully, I was 4 weeks pregnant when I had my phone call with that Doctor.  I literally felt like a weight had been lifted off my shoulders when he told me that he did not believe me to be at any greater risk than any other woman.  I felt confident again that it was ok to plan a home birth, that this was a choice that I could make safely.  Notice how I use the words "No greater risk than any other woman".  That is because there is always a risk.  ALWAYS.  No matter where you decide to birth your baby, the outcome is not guaranteed.  There is always a risk.  The reality of the situation is though, that the risk of a significant problem is small, and I am happy in knowing that the odds are in my favour that everything will go ok.  Depending on the source, the incidence of HIE is quoted at being anywhere between 1 in 500 to 1 in 1000 births.  If my maths is correct, that is a 0.1 - 0.2% chance of having this happen to your baby.  In other words, you have at least a 99.8% chance of NOT having a baby with HIE.  Joshua quite literally beat the odds to end up in this category.

Understandably, having had a child "beat the odds" like that, many women feel worried about going on to have another baby.  That small risk feels very, very scary the second time around and the majority of women feel safest in making choices very different to mine.  They WANT to be in a hospital.  They WANT extra monitoring.  They WANT an elective C-section.  (Many HIE cases, including Joshua's, are caused by an injury during labour...  so many women wish to avoid labour completely)  I don't judge anybody for feeling that way.  When you have been through a traumatic birth experience, you really need to do whatever feels safest to you, whatever option is going to be the best one for your mental health is the right option.  I just happen to be the opposite to most women in my situation... and feel that the right choice for me is going on to have a "normal" birth.  If you are interested in reading a contrasting opinion to mine, you can check out Claire's recent blog post here, outlining her own choices for birth after HIE.  Completely opposite to mine, and yet, still the right choice for her.

Although many birth choice advocates will tell women that they have the right to choose where they want to give birth, and that NOBODY else can tell them what to do, that is not actually the reality that I have experienced.  (Unless of course, you are planning to give birth at home unassisted..  then you can do what you like!)  Our local home birth service is quite careful in who they accept as clients.  Remember, I said that home birth is only for LOW RISK women.  Midwives in Australia also have guidelines that they need to follow in terms of when they need to seek consultation with a doctor or refer their patients for other care.   This can be related to pre-existing health conditions, previous obstetric history, complications that arise during pregnancy, or complications that arise after birth with either the mother or the baby.  Contrary to what many people think, having a home birth is not just about staying home and "winging it" and hoping for the best.  It is a legitimate mode of care, where precautions are taken when choosing who is eligible to birth at home, and precautions are taken in ensuring the safety of both mother and baby.  Home birth midwives do all of the same things you would expect a Doctor to do during prenatal check ups...  And they come to births equipped to handle a range of outcomes.  Certainly, there is a limit to what they can do in the home environment but they come prepared to deal with many of the common complications that can arise.  Many people don't realise that, and have visions of me giving birth under a tree in my back yard with a hairy legged hippy as my midwife, maybe swaying around a bon fire while I am in labour singing Kumbaya.  It really isn't like that.  (well, unless you want it to be...  but even then, your hairy legged hippy midwife would still have all of the necessary precautions in place!)
So, coming back to what I said about the Midwifery Guidelines.  It wasn't as simple as me just saying that I wanted to try again for a home birth.  The whole situation with Joshua meant that technically, I needed to consult with a Doctor to get clearance to try again for a home birth this time.  My midwife for this pregnancy is the same midwife that I had with Joshua.  And she doesn't want a repeat of that situation any more than I do.  (Yes, its true.  "Crazy" home birth midwives care about the outcomes from their client's births and don't want women to stay home if it is going to put themselves or their baby at risk!)
So, I had to set out on the task of getting "Clearance" for a home birth.
My first point of call was a GP.  Perhaps not unsurprisingly, she was not comfortable in making such a decision and as a result, consulted with an obstetrician at the hospital.  It probably doesn't come as a surprise to know that many Doctors are not Pro-Home Birth.  The GP however told me that this particular obstetrician was not AGAINST home birth and was happy for me and my midwife to come in and discuss my situation with her further.  She told the GP that the "safest" option would be to have a c-section or a hospital birth with continuous monitoring...  but that maybe I might consider choosing the hospital attached birth centre instead, because at least then I would be closer to the hospital.  The GP told me that their discomfort came from the fact that they couldn't be sure that Joshua's problems were not caused by something that happened during the pregnancy rather than a problem during labour.  As far as I am concerned, ALL of the evidence points to the fact that this was a birth injury, so I prepared myself for having to go in and argue that point with the Obstetrician, to "prove" to her that I was not at any greater risk than any other woman.

Prior to seeing the Obstetrician, we had a routine appointment with Joshua's Doctor a few weeks ago (who has been his Doctor since birth), and I decided to take the opportunity to ask him for his opinion.  I posed the question "How concerned do you think we need to be about this happening to another baby?"  And his response to me was "You would have to be VERY unlucky. The risk of having some major wrong with your baby when you take into consideration ALL of the possibilities, is about 3% and I don't think your risk is any greater than that".  Then I told him we were expecting another baby.  He asked me who my Obstetrician was, and I told him that I was currently with the Home Birth Service again, but that we were having an appointment with this Obstetrician to discuss everything.  His response to that was "Well, talk to her for your own peace of mind but I certainly do not think that you are at any greater risk of a problem than any other mother having a baby".  Of course, I already knew this, but it was great to hear it from him too.  And he seemed so sure that the obstetrician's opinion would not be any different to his.  He was also completely unphased by my mention of the words "Home Birth" (which I admit I was scared to mention because I really didn't know how he'd respond)  He said to me "Joshua was born here wasn't he, because you transferred in?" And I said "Yes" and he said "Well, I am sure you will be careful".  No lectures about home birth, just the impression that he had every confidence that we'd act appropriately under any circumstances that might arise.

I was pleased, because now I had two Doctors who had told me that I was not at any higher risk than any other woman.  The Doctor in the US, and now a Doctor within the same hospital.  He made me feel like maybe the Obstetrician appointment wouldn't be that big of a deal.  Because after all, the GP told me that this Obstetrician was not against home birth, and Joshua's Doctor seemed confident that she would share his opinion.  My midwife on the other hand, did not seem to think it was going to be that easy.

We had that appointment yesterday.  And it definitely was not what I was expecting, for two reasons.  The first is that I really thought that the obstetrician was not opposed to home birth.  Well guess what, she WAS.  And secondly, I was expecting to have to argue my case in regards to when Joshua's injury occurred and the fact that the evidence all pointed to the fact that I was at no greater risk than anybody else.  And...  I DIDN'T.

The obstetrician was quite forth coming in saying that she didn't believe I was at any greater risk of a problem.  In contrast to what the GP said, she actually said that she saw no reason to recommend a c-section or even continuous monitoring.  She said there was nothing about my labour with Joshua that would make her think I was likely to have a problem this time.  I went into labour spontaneously at full term, with a good size baby, everything really progressed quite nicely with my labour, with the exception of Joshua and his heart decelerations which led us to transfer to hospital.  And even though his delivery was vacuum assisted, she described it as being easy and straight forward for a vacuum delivery.  She said she saw nothing that concerned her, in terms of a likely problem for this upcoming birth.  Sounds great doesn't it?  Well yeah, that part is great.  The really, super frustrating part, was the fact that she was absolutely 100% opposed to home birth.  And essentially, this meeting for her was basically so that she could attempt to persuade me into making a different choice.  Her main (and pretty much only) argument was that if something goes wrong, it takes longer to access interventions.  I don't deny that as being true.  I readily acknowledge that in some emergency situations, being away from the hospital could make a difference in the outcome.  BUT, I also feel that the chance of things coming to that are really very small and it is a chance that I am comfortable in taking.  I could get into a car accident and die, or be left severely disabled.  That could really happen.  But I still drive my car.  The benefits outweigh the risk.  And I don't feel any differently about home birth.  I acknowledge that there is a risk there, but for me, the benefits outweigh the risk.  And the odds are firmly in my favour that nothing will go wrong.  But despite essentially agreeing with that, we still had to listen to this obstetrician repeat over and over again how much she doesn't like home birth.  She also freely admitted that everything she was saying about home birth had nothing to do with my personal situation, that it was simply her opinion and what she would tell any woman contemplating a home birth, "because I need to know that".  She was also essentially asking if there was anything they could do for me "to make me change my mind".  She wanted to know what was wrong with the birth centre, why didn't I just want to go there?  Well really, there is nothing wrong with the birth centre.  I believe that I could have the kind of birth that I want in the birth centre.  Its just not my first choice.  It's my second choice.  And my very. very distant third choice, is the hospital.  I would quite seriously rank an unassisted home birth as a preferred option before choosing the hospital. And I actually really wouldn't want to do that.  I WANT the midwives there monitoring the baby.  I have my own doppler, but there is no way that I could adequately monitor myself during labour.  And it was their monitoring that alerted us to a problem with Joshua and led us to go to the hospital.  Honestly, if I was on my own, I would have had no clue there was a problem with him.  Some women have this kind of intuition, where they "just know" that something is not right with their baby...  I really don't think I had that...  I've thought back many times wondering if maybe I did get some kind of inkling and I just didn't pay attention to it, but I really don't know that I did.  So, unassisted child birth doesn't feel like a safe option to me.  But I would still prefer that over an unnecessary visit to the hospital.  That probably does make me sound like a crazy person.  But I did say UNNECESSARY visit to the hospital.  You see, this is most likely my last baby.  I won't get another chance to do this birth thing again.  Which is why I refuse to give up fighting for my preferred option.  If I am healthy, and the baby is healthy, then I am not budging on this.

And at the end of the day, this obstetrician was unable to give us any compelling reasons why I shouldn't be at home, and she has accepted that she was unable to persuade me (at least that time, but she was keen to invite me back again for another try, and also called me again later that afternoon to make some more helpful suggestions).  So she made a few recommendations, none of which were evidence based, and all of which are pretty much being disregarded by me.  I never agreed to anything.  I just told her I would "keep them in mind".  We are just happy having the confirmation that there is no need for me to be treated as being at any higher risk of a problem.

So, with that, I am having a home birth.  Of course, this is still dependent on whether or not any complications arise later in the pregnancy or even during labour as they did with Joshua.  There are never any guarantees.  But as long as I am well, and the baby is well, that is the plan.                        

Friday, February 10, 2012

Ophthalmologist Appointment

I have to say, this has been the most unpleasant appointment yet.  Mainly just because of the amount of time it all took, and the fact that Joshua is getting a lot harder to entertain.
The waiting area was not particularly child friendly and we had to wait for quite some time.  Joshua didn't really want to sit in his stroller and I didn't really want him crawling around.  And I could only buy so much time with snacks, showing him his little book, playing with his little car, and holding his hands to "walk" around the room (which he did NOT want to do...  he just wanted to get down on his hands and knees and hop around)  At one point, I was trying to multitask, holding him up in a standing position while opening my bag to get his car out....  and I guess I didn't do a good job because Joshua fell over and banged his head on the nearby wall...  and screamed the waiting room down afterwards.  Our turn couldn't come quick enough!

Finally, we got called back and saw a man who tested his vision a bit.  He had a little pig light that made a squeaky noise and he would move it all around to see how well he was tracking.  Then he asked me if he could talk and I said "a little bit".  By that I mean he says 2 words.  Then I realised he was asking that, to see if Joshua would be able to verbally respond to things he showed him.  As in, show him a picture and say "what is that?" and have Joshua respond with whatever it was.  So then I was like Erm, well he can't talk well enough to do that.  LOL
The first picture he held up was a cat.  I said to the guy "He can say car, so if you have a picture of a car, he will tell you that one, he is a bit obsessed with them"  LOL  So the guy was really good, he seemed to cater to that and found all his tools that worked around a love of transportation.  He showed him some pictures and while Joshua obviously didn't say what they were, he did point at them and say "Da" each time he was showed a picture, so he showed he was seeing them anyway.   Then he had to look at some other pages, (pictures of trucks, trains etc)  And one page would have the picture at the top of the page and the other at the bottom, and he would flick between the pages, wanting to see that Joshua looked up or down according to where the picture was.  During all of this,  he had me cover one of his eyes at various times to check that both eyes were working right.  Apparently if one eye is not working as well as the other, the child would get really annoyed about having their good eye covered.  (I guess he means "More annoyed than they usually get" LOL Because Joshua wasn't happy about having his eyes covered either and was trying to shake his head away from my hands)  He also tried to show him a picture that looked like a page full of dots but there was a picture in there somewhere (a car) and he was asking him where the car was to see if he could point to it....  From the angle I was on, I couldn't see a car either.  I could see where it was, but couldn't make out that it was a car...  but he decided he was a little too young for that one.  He actually told me that he was "The best 20 month old he has ever seen" in terms of how well he was looking at things.  Then he put some drops into his eyes to dilate them.  I nearly died when he told me that the drops take 40 mins to work.  WHAT!  I have to entertain him here for another 40 mins!!  LOL
So then I went out to the coffee shop and bought yoghurt and chocolate milk, two things that Joshua likes, hoping that would help me buy some more time.  It didn't really..  he was started to crack it, so my last resort was to take him out to the hospital playground.  If you could call it that.  Its really not that nice of a place and I didn't really want to take him in there, but I didn't know what else to do with him.  At least it was somewhere he could crawl around.  He was happy there too.  I was grossed out.  He mostly just crawled around and apparently his favourite place was crawling over the drains at the side...  Nice.
Then he tried to climb the slide.  He kept getting about half way up and sliding back down.  His AFOs actually make it really hard for him to climb because he can't grip things like in bare feet.  I am pretty sure if he was bare foot he could have made it all the way up, but he wasn't...  and I was a little glad because there was some miscellaneous black dried up "stuff" at the top of the slide.

Joshua on the yucky slide
When it was time to head back in, I made sure to wipe him thoroughly with baby wipes.  I also considered covering him in antiseptic gel...

We went back in and I informed reception that we were back, and thankfully we got called in by the Doctor after a few minutes.  This time, they looked into his eyes, shining lights through different lenses.  When an adult gets their eyes checked, they can look through lenses and say which one looks better, which one looks worse.  But a baby can't do that.  Apparently, they can look at the way the lights bounce off the eyes through the lenses and that will tell them if a baby/toddler needs glasses or not, and if so, which strength.  He also used another lense thing to look into his eye and see the inside of the eye...  to check that it all looked normal.  This wasn't as easy as it sounds, because by this time, Joshua was well and truly done with being here and it didn't take long for him to learn to shut his eyes and not co-operate. LOL  I was pleasantly surprised by how child friendly the Doctor was, and also the first guy as well, considering the waiting area was filled with adults and no other children, it was hard to know how experienced they would be with dealing with little kids.  He was very good though, talking to him and making silly noises and trying to get him to co-operate.  Finally, he managed to look at everything he needed to.
He told me that he is very happy with Joshua.  Joshua does not need glasses, his vision is normal, his eyes are normal, his eye movements are all normal.  He suggested getting his eyes tested again when he is 4 or 5, before he starts school just to make sure everything is all good, but that he has absolutely no concerns relating to Joshua's vision.

So, we have successfully jumped another 'brain damage' hurdle.  As yet, no vision issues.  Yay!

It was a big morning for a little boy, and he passed out quickly on the way home in the car.  He didn't even stir when I took him out and put him to bed.

Friday, February 3, 2012

Routine Check up

Today Joshua had an appointment at the hospital for his routine check up that we do every three months.

It was pretty uneventful really, as far as these appointments go!  Almost not even worth blogging about :)
We did the usual weigh and measure stuff and his current stats at 20.5 months are:

Weight:  10.14kgs / 22lbs 5oz    (4.6%)
Length:  81.5cm / 32 inch  (20.2%)
Head Circumference:  42.9cm   (0%)

So, he is still on the little side, but still growing!

I gave the Doctor the updates on his development since we last saw him.  Which are mostly that he is, as of about a week ago, trying to take a few steps while holding onto things.  Furniture or his little trolley.
Here is a little video of him with his trolley:


He hasn't really done this since, but it is obviously a great sign of things to come.  He is also doing a little more side stepping holding onto furniture.  He is definitely not cruising around the room or anything, but a step here and a step there, a little shuffle to get something.   There is really no doubt in my mind that he will walk, one day.  Maybe not by the age of 2 like I initially hoped, but hopefully not too long after that!

Since his last appointment, he has also started to say a few words.  His favourite word is "Car" and everything with wheels is a car.  He spends his whole day talking about cars and saying "Brrrrrvv...  Brrrvvvv Car!"  He can also say Bye Bye, and make animal noises.  Well...  if you ask Joshua every animal makes the same sound...  which is "Aaaaaah!" But that is ok with me!  Three months ago, he wasn't saying anything and I heard from the Doctor several times about how he would have problems with communication, so I am really encouraged by the progress he has made, and was really happy to be able to tell him that he was now saying a few words.  He even obliged me and said "bye bye" to the Doctor when we were leaving, rather than make me look like a liar like he usually does ;)

He had a bit of a feel of his tone, listened to his breathing, checked his throat, checked his ears, checked his teeth, asked how he was going with things like constipation, swallowing, snoring etc, and gave him a clean bill of health.  Said he is in "great shape."  We are very lucky because many children with Cerebral Palsy have other health problems that stem from their CP.  Muscles control a lot of the bodies functions, not just the obvious ones like walking.  Muscles are involved in the digestion of food, with eating and even breathing.  When children have abnormal muscle tone, it can affect all of those functions that you don't normally even give a second thought to, but in Joshua's case, despite having Cerebral Palsy, he is otherwise a very healthy boy.        

I am also waiting to hear in the next week or so if we have made it onto the list for the visiting rehabilitation clinic that visits from Adelaide every 3 months.  They are next coming in March, and we'd hoped he'd get into it then.  Joshua's physio called me yesterday and told me to make sure I asked them about it because she has been trying to hassle people about it but the lady that handles it all has been away and it would be much better coming from his Doctor than her.  So no worries there, because the Doctor told the nurse that sorts it all out (who is back as of today) to try and get Joshua onto that list because "He is a great candidate for it because he is doing so well".  The nurse said she needs to have the list finalised in the next week or so, so I will know soon but she'd try and get him on to be seen.  (They only have a certain number of places available and they are crammed full usually)  The Doctor said that maybe people who have been getting seen quite regularly might need to step back and be seen less often.  I said "Yeah!  Tell them they have to share!".  So we will see what comes from that!

Overall Joshua is doing great, always making slow and stready progress.  We all have our moments but I really can't spent too much time being upset about things that he can't do, when really, mostly I am just so grateful for all of the things he CAN do.

Joshua is booked in to see the Ophthalmologist next Friday to have his eyes checked, so I will be updating again after that.  I am not expecting any problems, it is more just to rule any out, because again, it is not uncommon for people with a brain injury to also have issues with things like hearing and vision.  We've gotten the A-OK on the hearing, so now its time for the eyes to get their turn.      

I will finish up now with a few photos :)



And also another video, because I am so proud of my little swimmer!  :)