Monday, December 19, 2011

The first time I really wished Joshua was 'normal'

Was this morning.  I am having a really hard time with the whole 'starting child care' thing.  I wanted to put Joshua into a child care centre for 1 day a week around the time that he turned two.  I went and looked at a couple of places nearby, and the first place told me they would have a place for him in January and I decided it would be ok if he started then.  Then we looked at another centre right next door, they also had a place for him in January, but have a minimum attendance policy of 2 days a week.  But overall we liked the second place a lot more and thought it would be worth putting him there, even if it meant it was for 2 days a week.  I do think it will be a good thing for him, he LOVES other kids, and loves having the day care kids at our house.  And when I go on Maternity Leave, he will be so bored at home just with me and then with me and the new baby every day, so I think it will be a good thing for him to be able to go and be with other kids a couple of days a week and get that stimulation.  Not to mention the developmental benefits of child care.  Even the timing of him starting in January as opposed to when he is 2, is probably a good thing, because the new baby is due just after he turns two, and it probably wouldn't be fair to start him in day care AND give him a new sibling all at the same time...  at least this way, he will be settled into day care before he gets another rude shock in his life.  After talking with my fellow HIE parents a few months ago, I felt really good about the decision to put him in day care.  Everyone told me how great it has been for their child etc, and I really felt it was the right thing to do.  Now that push comes to shove, I am so unsure.

You see, I think there are times in a Mother's life that it is normal for her to feel some apprehension about things to do with her child....  Starting Child Care is one of those things...  I don't think it is easy for ANY mother to leave her child with someone else....  but I feel like the situation that we are in (having a child with additional needs), takes these normal Mother worries and makes them worse.  Last Monday, and today, I took Joshua in to his day care to have a play while I could still be there with him, so he could get used to it while I was there.  And both times, I have come home and cried.  The first time we went, Joshua cried on and off the whole time we were there.  That was really upsetting for me, because I really thought that he was going to love going there.  So then I worried that I would leave him there and he'd be crying the whole time, and thought it must be a terrible idea for me to take him there, especially when he didn't HAVE to go.  So I decided I better take him in again before he started, to give him another chance to play while I was still there with him.  That was today.  He was a lot better this week, he didn't cry like he did last week.  So I should be happy right?  But I'm not.  For one, the girl kept calling him Joseph despite me correcting her.  Ok,  I know she will get to know him and won't call him Joseph anymore...   as far as I know she wasn't calling any of the other kids by the wrong name, so she will get her head around it...  though it makes me want to put a name tag on him to make sure he gets called the right name...
She also expressed some hesitation about what they would do with him when they go outside etc.  I supposed this is just to be expected, but it makes ME hesitant too... I said he was pretty fine just getting around doing whatever he wants, and that he will like doing things like going in the sand pit and that he can ride little bikes and stuff.  She asked if I would bring his walker for him to use outside.  I said that he doesn't have his walker yet, and it will probably be a while before he is good at using it, but when he was, I would bring it for him.  But now, I am just really worried that they will not make the same efforts that I do to include him.  For example, before we left, the kids had musical instruments out and they were singing songs, thats fine, I sat with Joshua and he was shaking the bells and then they started doing some action songs, like the Jingly Jangly scarecrow.  And I help Joshua do it...  I laid him down "when all the cows were sleeping" and then got him up when everybody jumped up and helped him to shake his arms and legs...   and I am thinking...  will they do that for him when I am not there?  Or will they just be like Oh well, he can't do it so he can just do whatever he wants off in the corner while everyone else does it...  They told me he was going to have a support worker, so I hope she will do things like that with him....   I am just so worried....  I know every Mother feels like nobody else can love their child like she does (and that is true I would say...) but what happens when your child is a little bit harder to love?  I wish that I could drop him off and know that if he wanted to do the jingly jangly scarecrow then he would just do it if he wanted too...  and not worry that he would be left out from all of those things because he can't do it and they don't think to physically involve him like I do.  I feel terribly bad, because I used to look after a child with Cerebral Palsy in the centre I worked at...when he was Joshua's age...  and I don't remember ever helping him do the jingly jangly scarecrow :(

And so this brings me to the realisation that Cerebral Palsy is no big deal to me...  I really don't care that Joshua has CP...  he is still the most awesome kid in the world to me and it just doesn't matter at all...  I never sit at home wishing he was different, because he is so brilliant just the way he is....
But all of a sudden, by starting child care, essentially this is the first step to what it is like to go out in the big bad world.  And have to deal with the way other people see children like mine.  I know its not going to go away....  if I don't put him in child care now, all these things are just going to happen when he starts school...   I can't avoid it..... And I can't make society different, or more accepting or more anything...   And I am realising that he isn't just going to be in some beautiful bubble with me all the time where we all 'clap hands for Joshua' for things that other kids were doing months and months ago....  he is going out in a world that just isn't as impressed with him and everything that he can do as I am...   He is going out in a world that is wired to see DISability, instead of ability like I am.  I just don't know how to make myself feel ok about that....  Instinctively, I just want to keep him at home with me and not worry about this whole child care thing...  but would that really be helping him?  I don't know....  But for the first time in Joshua's life, I really, really wish that neither of us had to worry about any of this, and that all I had to worry about was missing him and separation anxiety, and some other kid at child care biting him.

Another one of those Mummy milestones that all Mum's worry about, is having a second child.  Worrying how you will handle two children, feeling guilty for taking the attention away from your first born etc.  And its another thing that I feel like it worse because of our situation.  The first thing I mentioned...  worrying about handling more than one child seems almost laughable to me in a way, since I routinely have 4 other kids here along with Joshua...   So its not really the day to day of having two children that worries me...  I just think about all the other things i do with Joshua...  like therapy...  like appointments at the hospital...  getting x-rays done....   getting fitting for orthotics....   eye tests etc...   And think about how when we do things like that now, I am able to give Joshua my full attention... but soon, I will have to juggle another child through all of those things....  And it just doesn't sound that appealing....  I know I am not the first person in the world to have to do this...  many other HIE parents go on to have second children and they manage....  Many with children more affected than Joshua...  Many others already have children before their HIE child is born...  and they manage too...  just like we will...  even if means Rod will have to come to more of these appointments to help out when before I managed on my own...  it WILL all work out...  but its just one of those things that in your head feels like a huge deal...  like an injustice, because if you had a 'normal' child, you wouldn't have to worry about dragging a second child along to all of those things.....
It is a little harder to dismiss the guilt of taking attention away from him though....   How can you get your head around giving your older child less attention when they already need more attention that the average child?  I love it when I talk to parents of typical children.  "Oh your pregnant, how old is he, what will the age gap be?  Oh 2 years, thats not bad, my kids are only x amount of months apart"
Well, I am really happy for you that you had kids less than 2 years apart, I did forget to bring my medals with me, so I can't give you one, but actually, I am pretty sure that since your toddler was already walking and talking when your second child was born, it probably isn't the big deal that you are making this out to be.  You don't win the Mum Competition right now, because when my second child is born, my 2 year old probably won't be walking.  My 2 year old will have difficulties communicating.  My 2 year old probably won't be able to manage his meals independently.  When I go out somewhere with my two children and come home, I won't be able to get my 2 year old out of his car seat and have him walk into the house by himself while I carry the baby.  No..  I will have to carry both of them up 13 steps, and make two trips to do so, so I don't trip over and drop both of them down the stairs.  So, forgive me if I fail to see that your life was harder than mine because you had another baby when your walking talking toddler was younger than mine will be when my second baby is born.  (By the way, in real life, I just smile and nod when people spin me stories like this!)    
             
Please don't think that this baby was unwanted, because it is not.  We wanted a second child.  We WANT a second child.  But when you have a baby under the circumstances that we had Joshua, you do go through a period of grief for the experience that you THOUGHT you were going to have....  the labour and birth you thought you were going to have...  the healthy baby you thought you were going to have...  the entire life that you thought you were going to have is totally different to the one you imagined.  And what I am realising, is that these feelings don't just stop with that first child.  Because now you are expecting a second child, and THEIR life is not going to be what you imagined for a second child either, simply because they are the sibling of your first child.  In a lot of ways, that second child's life is going to be richer than you ever imagined.  Like me, Joshua's little brother or sister will be a better person for knowing him, but it won't always be easy for them and it won't always be easy for me either.

A baby is a blessing, and I am blessed to be pregnant again, and blessed to have gotten pregnant so easily when it is a struggle for so many others.   I don't want to sound ungrateful for having something that other's desperately want and don't have, but you will have to forgive me if at times I don't sound appreciative, that I don't seem to be jumping for joy about being pregnant again.  Unfortunately, once you have started walking this path, pregnancy is not the same as it used to be.

Tuesday, November 29, 2011

Medical Report, Funding and Therapy

There is a grant available to us called the "Better Start for Children with Disability" grant.  It is available to Children with Cerebral Palsy, among other diagnoses and gives us $12,000 to use towards therapies and equipment.  I have actually heard that we might get more than that, because in Darwin apparently you also get a remote area allowance.

So, to apply for this, I need to have proof from a Doctor that Joshua does have Cerebral Palsy, so at our last visit with his Doctor, I asked him if he would write me a letter with his diagnosis so that I could apply for that, and of course, he was more than happy to do so.  I received it in the mail this afternoon.  I always find it interesting to read these things...

Medical Summary 


Primary Diagnosis:
1.  Cerebral Palsy
2. Spastic Quadriplegia


Associated Diagnosis:
1. Hypoxic Ischemic Encephalopathy at birth.
2.  Severe Neonatal Hypoglycaemia.
3.  Neonatal Seizures.
4.  Neonatal hypertension.
5.  Intubated and Ventilated for 3 days.
6.  MRI Scan extensive psuedolaminar cortical necrosis consistent with HIE.
7. Microcephaly


Joshua is an 18 month old boy with Cerebral Palsy and Spastic Quadriplegia.  He will need significant input from a range of medical and allied health professionals over his lifetime. Early childhood is the critical period of development and it is essential that he has access to the best available intervention services.  Currently Joshua is under review by the Department of Paediatrics at the Royal Darwin Hospital and the Carpentaria Early Intervention Team.  He is on the list to see the visiting Rehabilitation Team from the Adelaide Women and Children's Hospital.  


Joshua is making good progress and his current medical issues are gross motor and fine motor developmental delay and are consistent with his Spastic Quadriplegia.  He has not had any further seizures and is a bright and interactive child.  In the future he will need further support with his communication as well as ongoing support for his motor development.  


Joshua is awaiting fitting of orthotic devices for both feet to assist with walking and avoidance of contractures.  I will be reviewing him again in February and will happily provide any additional information that is required.  


Dr Peter Morris
Consultant Paediatrician
Royal Darwin Hospital
 
He wrote a lot more than I thought he would.  I was just expecting a letter saying.  Yep, the kid has Cerebral Palsy cos I said so!

So now I can make an appointment to get the ball rolling to get this funding...

I was just told yesterday by Joshua's therapist Andy, that over the Christmas break, (next week is the last week of Therapy until I think February next year) there will be some people coming to Darwin to run a one week intensive block of therapy known as Conductive Education.  I have heard really good things about this, and I really want to do it.  I don't have all the details yet, but I would have to take the week off work to do it.  I would do it though... I think it is a good opportunity and worth taking time off work.  Not sure how the day care parents would feel about that though.  I am awaiting more information, and right now, I have no idea how much it costs.  A lot, I am sure.  She told me that I can use the Better Start funding for it.  I am not sure if I will be able to get that sorted out quick enough though, or if we were to pay for it ourselves, if they would reimburse it once it was sorted.  (I am betting not...)  So yeah, I will have to see what the price is, but I am really keen...  Especially as I feel the opportunities to do these sorts of therapies are pretty limited in Darwin, so when the opportunity comes up, it makes sense to take it if possible.

As a follow on from the Orthotics, Joshua got his AFOs yesterday.  He was so good.  We put them on at the hospital, went to the shops to buy him some shoes, went to Therapy, then he took a nap in the car...  he never complained once about wearing them.  Today, he wore them for about 2 hours in the morning, and another 2 hours in the afternoon.  I think that is pretty good since he is just getting used to them.  He did start getting a bit sick of them after 2 hours, so I took them off to let him have a break.  Ideally, we will build up to wearing them all day.

Here are some photos of him/them:

Joshua wearing socks, AFOs and Sandals
Socks and AFOs
The AFOs...  with their lovely flouro green velcro!  
In other news.....  The Amazing Joshua is going to be a big brother in June next year...  Here is a photo of him in his 'Big Brother" T-shirt that I used to announce on Facebook yesterday.

Joshua is in training for a new role
I am sure I will write more about the pregnancy in blogs to come...  but for now, that is it :)

Friday, November 18, 2011

Hearing Test and 1st Orthotics Appointment

On Wednesday, Joshua had his 4th Hearing Test.  (Not including the newborn screening) He did pass the last one he had, but due to being sick at the time, was showing some Eustachian Tube Dysfunction.  (Which was also the case at hearing test number 2) so they wanted to make sure that this was not an ongoing problem which would require referral to an ENT.  Thankfully, he passed his hearing test, no problems, and his ears were healthy.  So now we do not have to go back until he is 3 years old.  With little kids, they just play the sound through speakers, and although they play the sound from the left side, or the right side and the child looks towards the sound, it doesn't actually mean they are hearing it from the left side or the right side.  They can just hear from whatever ear, and their main aim is to ensure that their hearing is sufficient enough for the development of speech.  When he is 3 though, they hope to be able to use headphones and to be able to specifically test each individual ear.  So that is great news that we don't have to worry about hearing tests for a little while now!

Then this morning, we had Joshua's first orthotics appointment at the hospital.  Our Physio also met us there for the appointment.  The orthotists name was Andrew, and he was really super nice.  He took a look at Joshua's feet, and watched him stand, to get a good idea about his issues.  Then he started making the casts of his legs.  He will use the casts to make his AFOs (Braces).  Joshua was a very good boy and sat nicely while the casts were made.

Putting a special "sock" on to go under the plaster
Then he put a piece of plastic down the front and began to wrap it with plaster
Joshua watches closely at what is happening to his leg!
And he really wants to try and pull the plastic out!
What do you think about all this Josh?
Close up of the plaster
Andrew smoothing the plaster
Starting to cut the plaster off
Andrew cutting the cast off
Both legs done!  
Joshua was a very good boy and sat through it all without making a fuss.  Andrew commented on what a cruisy kid he was and Maggie, the physio, told him that the kids she had referred to him that he was seeing next week would not be as good as Joshua, so he shouldn't get too used to it.  Hahaha.

Basically, he explained to me that the bones in the feet are not fully formed until about 5 years old, but when a child has significant issues with muscle tone, those muscles can affect the growing bones and cause permanent problems.  So the period up until about 5 years old is really quite critical in terms of providing the feet with the right support to be able to grow and develop properly.  He told me that Joshua's problems (in terms of his foot positioning/pronation) were "fully correctable."  So, basically Joshua will probably have to wear AFOs for at least a few years.  And because little kids grow so quickly, we will probably have to repeat this process about every 6 months for a while.  

We go back on Monday 28th to fit the actual braces and hopefully take them home that day!

Friday, November 11, 2011

Today's Hospital Appointment

Today we had our routine appointment for Joshua at the hospital.  It was pretty interesting actually.
There was a student doctor working with our "real" Doctor, he is doing his final exams in a couple of weeks and was doing the last of his prac work.  So as part of that he obviously has to do things (obviously!)  LOL  So our Doctor asked if I minded that he sat in on the appointment, and that as part of his work he needed to ask me some questions etc as though he was the "real" doctor.  He was given 10 minutes to ask me things about Joshua, and then I could give feedback on how i thought he did and the real doctor did too.  It was good and lame at the same time.  LOL  His first question was "What brings you to the clinic today?"  Fair enough question if that was my first time there, but dude, we might as well live here.  Of course, he doesn't know us and the point was that he was trying to get an idea of Joshua's problems and history, it was just really weird to be sitting there having to explain everything all over again! 10 points to me though, because I did it, and I didn't even cry!
I told him we were there because Joshua has Cerebral Palsy, and then he asked some questions about his development, and he asked "What was his birth like?  Was he born here at RDH?"  And I said "Yes he was.  Well, he was a planned home birth, but we transferred to the hospital due to heart decelerations so he was born via vacuum after we arrived here"  And then he asked me if there were complications after delivery, did he spend any time in the Special Care Nursery?  And I said "Yes, he went to Special Care not long after he was born because they were concerned about his breathing being a bit noisy, but he seemed to be doing really well until he decided to start having seizures when he was about 5 hours old."  Just seemed like a good idea at the time I guess.  LOL
Then he was asking me about whether he eats food (I am not sure what the alternative was that he had in mind?  Tube?)  It was sort of an odd way to phrase the question.  I said Yes, he eats food, that we have to spoon feed him, or he can eat finger foods on his own if they are cut into small pieces, and he drinks toddler formula.    He asked if he was breast fed as a baby, (Whaaaat?  He still IS a baby?! LOL) and I said yes, he was breast fed until just after he turned 1.
Then he was asking about his growth, and if it was going ok.  I was like well...  he is growing.  LOL  He is little, but growing!  Then he starts checking his weight on the percentile chart but maybe he wasn't really thinking about head circumference, so I decided to throw him in the right direction by saying "Yeah, and his head has its own special percentile....  a negative percentile" Which then prompted him to look at his head circumference and he announced that his head had grown 1mm in three months.  LOL awesome.
Finally he asked me if I had any concerns, and I said No.  The (real) Doctor asked me if there was anything I thought he could have done better and I said Not really, he was alright, but then the Doctor told him that he should have asked me earlier on whether or not I had any concerns because it is important to address the parents concerns rather than be too focused on the medical details all the time.   Fair enough.  LOL

So, this is Joshua's stats now, about a week shy of 18 months:

Height: 77cm (5-10%)
Weight: 9.69kgs (3-5%)
Weight for Height: 25-50%
Head Circumference: 42.4cm  (0%)  

So he is a little fella, but his height and weight are fairly proportionate now.  And I really do believe that kids with small heads tend to be small all over because otherwise they would look weird.
They have no concerns about his growth other than his head of course, which there is nothing that can be done about it, so in other words, no point being concerned about it either!

The other interesting thing about this appointment is that the Physiotherapist from Carpentaria came along.  Now, I have known that Joshua needed AFOs (braces for his feet/ankles) for about 5 months now.  And I've been about ready to choke somebody over this because things just weren't getting done about it.  First it was delayed because we changed services.  Then it was delayed because...  well, who knows, because I am pretty sure there was no good reason.  And I was planning to complain to the Dr today and make him write the referral if needed.  It is most annoying because Joshua is not able to make any further progress in terms of standing and walking without them.  So, this Physio is pretty new to Carpentaria and only saw Joshua a handful of times, but she took it on herself to come to this appointment and get the referral done.  In the waiting room while waiting for the Doctor she asked me about whether or not we have any equipment for Joshua at home at the moment.  I told her No, and then told her what equipment I had been told that he needed (Stander, special chair) and that it had been months but we had not gotten anything yet. She was clearly not impressed.  She asked if I needed a bath chair for him, and I said No, he was ok in the bath because he just plays or W-sits.  I showed her that he has to W-sit because 1. He can't get into a regular sit independently, and 2. when he is sitting on his bottom his right leg stays bent due to his tone and makes him unstable.  She immediately told me that she had some leg wraps (Leg immobilisers) I can use, and was I going to be home this afternoon, because she would bring them to me.  These wrap around his legs and hold them nice and straight, so he can practice sitting on his bottom with his legs straight and even.  And she said I would get the other equipment next Monday because she was having an "equipment day".  I felt relieved to know I was finally going to see some of these things.  So anyway, she came into the appointment and had the referral done, and was also able to talk to the Doctor and give her input on how Joshua is going.  The Doctor indicated that he thinks communication is going to be a big issue for Joshua.  The physio said that Joshua has good 'pre-communication' skills, and good play skills.  She had the Doctor check him over to see if he needed to have a consultation with an Orthopaedic Doctor, but it was decided that at this time, it is not necessary.  We also got the results of his hip X-ray.  All is good, no signs of dislocation at this stage.  She also told us that Carpentaria is planning to start Hydrotherapy next year, which would be good for Joshua. The plan is also to try and get him seen at the CP rehab clinic in March.    

The Doctor made an interesting comment to the Student Doctor, which was "When you look at Joshua, you see obvious motor problems, but you also notice that he is very bright and alert.  That is one of the biggest challenges for people with Cerebral Palsy because they are often of normal intelligence despite being physically impaired".  Honestly, it is REALLY hard to tell at this age what cognitive ability is like, and I often feel discouraged because there is so much Joshua doesn't seem to understand (though, like every other area, he does make slow and steady progress)

The physio told me afterwards though that she agrees with the Doctor, that she thinks Joshua is smart.  So I guess that is good that they think that! She also said she thought his Doctor is really, really good.  After the appointment with the Doctor, the physio took me straight downstairs with her to Orthotics with the referral to make his appointment then and there.  The appointment has been made for next Friday and she is going to attend it with me.  She told me that she worked in private practice before and is used to getting things done, so she is also frustrated by the lack of action that seems apparent within government funded services.  She told me if I need things, to tell her, and she will make sure I get them, quicker than what I have experienced so far.  Then later on she called me to make sure I was home to bring the leg immobilisers over, and said she would also bring the stander over for him today. And she did.  So now I have decided that I really like her.  She has done more in one week (one day even) than has really happened in the last 3 months.

Joshua in his Loaner Stander, also wearing leg immobilisers and his shoes.
This is an upright stander, and it is the least supportive stander you can get.  She is thinking that he will only need it for a few months now, and especially once he gets his AFOs in a couple of weeks, he will be able to stand much better just holding onto things etc.  She wants him to use it for 5-10 mins at a time at frequent intervals during the day.  She also wants him to wear the leg immobilisers for a while before bed each night to give his legs a good stretch. It would be good if he slept in them all night, but she doesn't think that will happen and thinks they would be too hot.  He will be getting special splints that he has to sleep in when we get his standing AFOs as well...  The aim behind putting Joshua in the stander, and using the immobilisers is that stretching out the muscles and weight bearing ultimately help to decrease tone.  It can also help to prevent contracture.  (when the muscles become permanently fixed in a tightened position)

So in other news, I also got a phone call while we were waiting at the hospital to make an appointment for another hearing test.  He passed the last one, so I really hope that it will go ok this time.
He is also getting referred to an Opthamologist to have his eyes checked.  He doesn't appear to have any vision problems, but because he has never formally had his vision tested, the Doctor wants it done to make sure it is all ok, because poor vision can impact motor skills, so if there is a problem, it is best to catch it.

So really..   it never ends.  And it seems like everything comes in bursts....  things will go quiet for a while and then all of a sudden we are swamped with appointments again.
  

Monday, November 7, 2011

A Day in the Life...

Today Joshua had therapy, as he does every Monday.  I took a few photos today.  I wish I would have taken more, but it is hard because I also have to play an active role in therapy.

Here he is with his Primary Therapist Andy, pushing him in the swing.


She sings to him while she swings him, and then when she stops, she encourages Joshua to communicate that he wants to go again by signing "More".  The Auslan sign for more is tapping a clawed hand on your chest, but sometimes Joshua kicks his foot.  Andy believes that when Joshua does this, he is also signing more.  She says it is common for children to adapt signs and to even sign with their feet rather than their hands.  I am not really sure...  maybe he is just kicking his leg?  LOL  But both her and the Speech Therapist we saw last week believe the leg kicking is also a sign for more.  Confusing isn't it.  When your child doesn't communicate verbally, so you try and use sign language, and then they go and make things up as they go along.  It is horrible to think that you might be missing attempts at communication because you are looking for one thing (the right thing) and they are doing something else to mean the same thing.

Here he is sitting in the swing.  He wouldn't smile for me, he was busy making funny movements with his mouth.


Joshua also tried climbing up some foam stairs.  I was shocked at how well he did.  That is not to say he was able to climb up them, because he can't, but the attempt he made was the best I've ever seen.   Andy helped him up by helping him to move his legs and I encouraged him from the top.  Once he got up to me, he loved throwing himself off, for want of a better word, a padded table, and onto a huge (HUGE) Cushion.  He did it several times, he thought it was so much fun, and he is doing so well at trying to crawl over things like this big cushion.  It is not easy to move your body over something that is soft and squishy and unstable, it is a lot more work than just being on the flat ground, but he is getting so much better at it.

He was also really loving the tunnel today.  You can see it in my picture below.


Just last week he needed help to get up and into it.  And then once he got to the other side, he cried like he was too scared to try and get out on his own.  Today, he was very bold with the tunnel.  He easily got himself up into it and crawled (hopped) quickly through it and out the other end.  He was going so fast he was face planting on the floor at the end.  We had to try and show him to use strong arms on the floor to support himself in getting out instead of lunging straight out onto his face.  He wanted to do it over and over again.



Then he was playing on the rocker.  In addition to rocking, we were also using this to practice going from sitting to standing.  He was doing great.  Andy thinks we need to be working on sit to stand more.  Although Joshua already pulls himself to a stand, he does so with very poor technique, and she thinks working on sit to stand more will help build up strength in being able to push up through the legs and ultimately help him learn to pull to a stand properly.

You can also see his little shoes here.  We are still waiting to be fitted for AFOs, and in the mean time, I was told to buy him some high top canvas sneakers.  We just got them a few days ago and Andy loved them, she thought they were great.  Although they don't provide total ankle support or completely correct foot positioning (he tends to turn his feet outwards) they are very good at keeping his foot flat...  and not having his toes curled into all sorts of positions, with his foot bending in half and trying to stand up on the top of his feet instead of the soles of his feet.  So ultimately it has made standing practice easier because he doesn't require as much assistance in maintaining his feet when he is wearing the shoes.

I have just learned that the Physio is going to be meeting us at the hospital on Friday for his appointment to get the Dr to sign the referral for his AFOs.  Man oh mighty it has taken a lot time for them to get this organised and I was planning to complain to his Doctor on Friday, so lucky some action is being taken.  Apparently they also want him to have resting splints to wear at night time.  Poor Bugger.

Here he is with Maggie the Physio under the climbing frame.


It is a bit of a problem solving activity for him to have to work out how to get through the openings to get in and get the balls and balloons.  Initially it was also physically challenging to get over the bottom pipe and get in.  We've been doing this for a few weeks now though and he has that part down now.  He LOVES balloons and tries to munch on them.



Andy and Maggie are both scared of balloons popping, which I find quite amusing, so they are always worried he is going to pop them!

We also did a bit of play on the iPad.  Popping bubbles, playing music, making fireworks and even a funny bird app.  When you speak, the bird repeats back what you say and you can make it sing by pressing piano keys.  You could also feed it food.  And somehow make it blow up..  Yes..  the bird blows up into a puff of scorched feathers and smoke.  Joshua was good at making that happen...

So this is a typical Monday at therapy for us.  Today we also went to the hospital and had Joshua's first lot of hip X-rays done.  I was a bit worried as I had been told before hand that it was best to have two people to hold him down, so I made Rod come along in case I needed him with him.  As it turns out Rod held him by himself and it was fine.  He didn't even cry, he just yelled a bit to let everyone know he was annoyed!
Afterwards he got his first sticker....

"I Sat Still for my X-RAY" !
I guess I will update again on Friday after our hospital appointment if there is any breaking news to add :)

Monday, October 17, 2011

An explanation

Or a Hypothesis.  A very educated Guess.   As I have mentioned previously, I sent Joshua's medical records to a Doctor in the US who specialises in HIE.  It is all he does...  he researches HIE.  What causes it, possible treatments etc.
Now, he told me that he cannot be as conclusive as he would like to be, and that is basically because he is limited by the records that I have.  Ideally, there would have been a placental pathology done that would have allowed him to rule out issues with the Placenta, but there wasn't, and ideally, he would have liked to see more regular blood gas analysis than what I had, but such is life, and we could only work with the picture that we have.  But because of that, he can't guarantee 100% accuracy because there is not solid data for certain things, he can simply extrapolate and hypothesise from the information that he has and his knowledge of the subject.

We spent TWO HOURS on the phone this morning discussing it all.  Firstly, he talked me through the results of the neuro-imaging reports.
Firstly, an Ultrasound of his head was done on the day he was born.  The results of this were normal.  Dr Hill said the main purpose of this ultrasound is to identify bleeds in the brain that would require immediate action.  None were found, and that is about the scope of ultrasound imaging...  it is not as detailed as other scans like CT and MRI.  MRI is the best form of imaging.
Joshua's MRI was done at 5 days old, which, from a clinical point of view, allows enough time to see what damage has occurred.  Basically, the explanation he gave me from Joshua's MRI results was that the scan showed abnormalities with the brain signals.  They made reference in the report to the Peripheral brain, which he said that his interpretation of that would be the outer layers of the brain were where these signal abnormalities were at their worse, but although affected, the temporal/parietal regions showed less of a problem than the other areas.  Overall though, the damage was all encompassing, which he believes is consistent with a generalised decrease in blood flow.  Brain damage can also be focal, affecting only a specific area, but in Joshua's case, it was the whole lot.
A CT scan which was done at 5 months of age showed Encephalomalacia in the right parietal region and atrophy/hypoplasia of the frontoparietal regions of both cerebral hemispheres.  Encephalomalcia basically looks like cysts in the brain... it occurs because brain tissue has died, and the pockets of dead cells are surrounded by healthy tissue....  the pockets fill with cerebral spinal fluid and appear like a cyst.
The CT report also mentions foci of calcification, some with linear appearances which can indicate brain damage as a result of perinatal intracranial infection.  (For example, caused by the mother having Rubella, CMV etc)  He said that the radiologist doing the scan is only looking at what he sees and does not take into account the patients medical history, so while this type of damage can be caused by a maternal infection, that was not indicated in my case and the damage is also consistent with a reduction in blood flow, so to disregard the comment regarding infection.
Reduced blood flow is called Ischemia, which is the 'Ichemic' part of the Hypoxic-Ischemic Encephalopathy diagnosis.  It is difficult to have one without the other though, since blood carries oxygen, and a lack of blood in turn relates to a lack of oxygen.  He believes in Joshua's case that Ischemia was the main problem.

As far as timing of the injury goes, he believes it happened during the labour and delivery period.  The biggest indicator of that, is the fact that Joshua was born with a normal head circumference on the 50th percentile.  If for example, the problem occurred a month before he was born, we would not expect to see a normal head circumference at birth.  Joshua had a normal head circumference which then failed to grow normally in the neonatal period.  Indicating that the problem occurred very close to the time of birth.  He said it is *possible* for instance that the problem could have happened the day before he was born, but certainly not any greater time frame than that.

The Blood Biochemistry can tell us important things about the state of the newborn.  We maintain a particular balance of oxygen and carbon dioxide in our blood all the time, and when something happens to disrupt the balance, the body will try and correct it.  He says that the kidneys are actually part of the respiratory system for the fact that they produce bicarbonate or base.  When there is a lack of oxygen, the blood becomes too acidic, so the body (kidneys) releases bi-carb or base to try and correct the balance.  Base Excess is a number that refers to how much Base is being released to compensate for a lack of oxygen.  The more negative the number, the worse it is.
A Base excess of -14 is considered to be a Severe Metabolic acidosis.  Joshua's Base Excess at 90 mins of age was -7.2.  He said that it depends who you are talking to as to how severe they would say that is.  He said from an Obstetric point of view, they would consider -7.2 to be mild acidosis.  But what would obstetricians know about brains?  A Paediatric Neurologist on the other hand, would consider -7.2 to be a moderate acidosis.  Because we do not have Blood gas analysis for anytime prior to 90 mins after birth, we are unable to say with any certainty what his levels would have been immediately after birth, but he believes it is quite likely that Joshua would have had Base Excess levels indicative of severe metabolic acidosis.  Another commonly talked about measure is cord gas, or cord PH, which is taken from the blood of the umbilical cord immediately after birth.  Anything below 7.0 is considered acidosis.  Joshua's cord gas was 7.067.  The problem with PH levels, is that they are extremely sensitive to Carbon Dioxide and PH levels fluctuate quickly and easily.  So if there is a problem where the baby suffers from a lack of oxygen, but then the situation is resolved, the PH will change very quickly and doesn't give as accurate a picture as the Base Excess does, which is less sensitive to changes.
Basically, acidosis triggers biochemical changes that damage neurons.  Under ordinary circumstances, the brain is able to protect itself somewhat by producing enzymes that block the effects of these changes in blood biochemistry.  Once a certain level is reached however, the brain is no longer able to protect itself and the enzymes produced by the acidosis begin to attack the brain.
These things can be present for long periods without causing death, however, if it was TOO prolonged then he would have died.
He believes the above is consistent with gradual, episodic reductions of blood flow over time.
A certain threshold is reached where brain damage is inevitable, but the clinical presentation can sometimes be delayed.  This was the case with Joshua.  He described it like a train leaving a station.  When Joshua was born the train (brain damage) had already left the station and we can't bring it back, but we didn't know until we saw the signs.
Typically, the first sign is respiratory depression.  Most HIE babies are born with very low apgars and require prolonged resuscitation.  This wasn't Joshua.  His Apgars were 5 and 8.  He was breast feeding after he was born and appeared to be doing well.  The next sign typically seen, is seizures.  Joshua had his first seizure at about 5 hours old and it was not until this happened, that we knew there was something really not right.  Initially, the seizures were explained by low blood sugar, and were not expected to continue after he was placed on a glucose drip.  They DID continue.  Dr Hill explained to me that as blood carries oxygen, it also carries glucose, so a reduction in blood flow would also cause the low blood sugar levels that Joshua had.
The other information we looked at was to do with Fetal Heart Rate monitoring during labour.  It was a drop in heart rate that indicated that Joshua was in distress and prompted us to go to the hospital.  At home, we had intermittent monitoring with a doppler, and then on arrival to the hospital, a period of continuous monitoring until he was born.  His heart rate was extremely variable.  He determined his baseline heart rate to be around 110-130 beats per minute, but it fluctuated greatly, dropping down to 80 beats per minute and staying there for 60 seconds and then shooting back up to 140 beats per minute.  He says this variability is also consistent with an episodic pattern of blood flow.

So...  What Caused this lack of blood flow?  Dr Hill believes that the most likely cause is intermittent, transient umbilical cord compression.  Basically, where the umbilical cord becomes lodged between the baby and for example, the mother's pelvis and prevents the flow of blood through the cord.  The baby moves and the blood once again flows freely through the cord.  The baby moves again, and the cord is once again compressed and blood flow is blocked.

There is one other possible explanation for this kind of episodic problems with blood flow, and that is utero-placental insufficiency.  Where basically, the blood vessels connecting the uterus and the placenta are not as healthy as they should be and cause problems with blood flow.  Some causes of this can be Maternal diabetes, or pregnancy hypertension.  I DID have high blood pressure during my pregnancy, but Dr Hill does not believe that my blood pressure issues were significant enough to have caused a problem such as this. We cannot rule this out with 100% certainty, because there was no placental pathology report done.  However Dr Hill believes that this is the least likely of the two scenarios.

The reason for this is to do with the types of heart decelerations observed.  There are three different types.  Late decelerations are when the baby's heart rate drops at the end of a contraction.  Early decelerations are when the baby's heart rate drops at the beginning of a contraction.  VARIABLE decelerations are when there is no clear pattern.  It is random and the decelerations can be before, during or after contractions.
Joshua's heart rate decelerations were VARIABLE.  Variable decelerations are highly associated with Umbilical cord compression, while placental issues are most commonly associated with LATE decelerations.
The other piece of information that supported this hypothesis, is the fact that it was noted in my records that the lowest fetal heart rate was 80 beats per minute with good pick up.  He said although the words "good pick up" could be open to interpretation, his definition of good pick up is that the heart rate recovers quickly after a deceleration.  This is common with cord compression, but when the problem is placental, a slow pick up is usually observed.
So although we are not able to get a 100% definite answer, he believes the cause to most likely have been Umbilical cord compression.
Umbilical Cord Compression is NOT preventable.  Babies have umbilical cords, they do crazy things with them and they move all around everywhere.  There is nothing we can do about it.  It is quite likely that most babies suffer from a period of cord compression at some time while they are in utero.  It is only a problem with the compression is repeated and/or prolonged.  That is when brain damage can occur.
Cord Compression is a very common cause of HIE.  However, in the general population, it is NOT a common occurrence.  There is no way to detect a cord compression other than the suggestion of it by decelerations in heart rate.  So essentially, the treatment for cord compression is delivery of the baby, and the only possible way to prevent it is to act appropriately to deliver as soon as possible after problems with the fetal heart rate is detected.
He basically said that the only real guarantee to prevent brain damage from a cord compression was if every woman was on continuous fetal monitoring for her entire labour and delivery and it was able to be detected immediately.  This is not standard practice.  Women are usually encouraged to labour at home for as long as possible before going into hospital for a hospital birth, so even if I was planning a hospital birth, by the time I went in to hospital, there would likely have already been problems with his heart rate which would have been unknown to me.

Most importantly, he said this is NOT something I have to worry about with a future pregnancy.  I can't do anything to prevent cord compression from happening again, it really is just "one of those things".  Bad luck if you will.  I am at no greater risk of having a problem with a future baby than a woman who has never had a baby with this problem.

Thursday, September 29, 2011

Developmental Assessment Results- 15 months.

Today I received the much awaited report from Joshua's Developmental Screening.  This assessment was done as part of the entry process to Carpentaria Disability Services (though we had already been told he was accepted before this screening was done).

So, here it is:

Joshua's Chronological Age at screening:
15 months, 02 Days  (15.07 months)

Assessments used:
Griffiths Mental Developmental Scales Extended Revised (GMDS-ER)
The results of this assessment will determine Joshua's eligibility for Carpentaria Early Intervention Services.

Referral information:
Joshua was referred to Carpentaria Disability Service by Dr Peter Morris, Paediatrician, Royal Darwin Hospital.  Joshua has a complex medical history and a diagnosis of Cerebral Palsy- Spastic Quadriplegia.  There are concerns with Joshua's overall Development.

An Ages and Stages Questionnaire complete in July 2011 by Melissa Reid from the Children's Development Team, indicated below cut off scores in all domains; communication, gross motor, fine motor, problem solving and personal/social.

Behavioural Observations:
The screening assessment with Joshua was conducted at CDS, Early Intervention Services Centre with his mother, Karissa present.  Joshua was happy enough but had difficulty remaining on task, preferring to occupy himself with the toys and playthings available.  He just loved the toy car and did not respond well to direction; from the examiner, his assistant or his mother, to attempt assessment items.  Karissa felt that today was a typical day for Joshua and that he performed according to her expectations.  With Joshua's concentration and co-operations, it is felt that today's results are a good estimate of his current abilities.

Griffiths Mental Development Scales - Extended Revised:
This is a Developmental assessment looking at the child's development in five sub-scales including locomotor, personal/social, language, hand-eye coordination, performance and practical reasoning.
A brief outline of the results is given below:

SCALE & AGE APPROXIMATE:
A.  Locomotor (Gross Motor Skills) - 7 to 11 months
B.  Personal/Social  (Self Care Skills, Socialisation Skills) - 5 to 9 months
C.  Hearing and Language (Language Skills) -  7 to 11 months
D.  Eye and Hand Coordination (Fine Motor skills) - 10 to 14 months
E.  Performance  (Puzzles, Problem Solving) - 9 to 13 months

Summary and Recommendations:
The results of this developmental screening assessment indicate that Joshua is currently functioning at approximately the 7.5 to 11.5 months age level.

The results indicate that Joshua's Development is significantly delayed.  It is important to keep in mind that the age equivelants are an estimate, and may change slightly if performed on a different day.

Based on these observations, Joshua was deemed eligible to receive services from Carpentaria Early Intervention Services; with significant needs requiring support from at least three disciplines (Occupational Therapy, Speech Pathology, Physiotherapy and/or Psychology)


And now for my thoughts...

Overall there is nothing new or shocking in this report.  My own estimation before having this assessment done was that he was around the 9 months mark, so I wasn't too far off.  The most shocking thing to me in the results was the score for Social skills.  Only because he seems SO social to me.  He loves people and goes out of his way to interact with them.  Though, when you think about it, I suppose his interactions are not age appropriate.  It just seems strange to say that someone who is so social is not very good at socialising.  LOL  I don't think I would have guessed that as being his "worst" area.
Other than that, the only thing that annoyed/amused me was the comment about how he had trouble remaining on task and did not respond well to direction.  I am not even sure what that means.  LOL  I think most kids his age are like that in terms of "remaining on task" and I am not sure what directions he didn't respond well to.  The way that was written makes it sound like he was having some kind of tantrum because he didn't want to do what he was told and was being uncooperative.  But that didn't happen.  Sure, he preferred to play with one thing over another...  especially when that thing was something he had zero interest in and was something that was too hard for him to do anyway.  Maybe it is because for example, when he tried to get him to do something (Like putting something into something else) he'd grab the piece and throw it.  But he wasn't doing that to be naughty or uncooperative...  he was doing that because he'd just learnt how to throw things and wanted to practice his new skill...  that, and throwing things is a lot easier than what he was *supposed* to do.  So it sort of annoys me that he was given the "uncooperative" label, because I don't think he really deserves that.  He was simply using the equipment that was offered to him in a way that was typical of his developmental level.

Oh well... None of it really matters anyway.  He is still doing awesome!

Monday, September 5, 2011

Stretches

Joshua is 15 months old and was diagnosed with Hypertonia (High Muscle Tone) at 12 weeks of age.  During that time, I was never given any formal instruction on stretches to do with him.  I was encouraged to stretch his legs...  even as often as every nappy change, but never given any specific instructions on how to do it.  I simply used common sense, and was also guided by some of the examples in the book "Teaching Motor Skills to Children with Cerebral Palsy and similar Movement disorders".  I bought this book when Joshua was 7 months old, based on the recommendations of other parents.  He had not yet been diagnosed with Cerebral Palsy at that stage, but it is very helpful at explaining high muscle tone and many different activities to help children with different areas of their development.  Following our visit with Sue, the visiting Physiotherapist we saw last Friday, Today, I was finally given some written instructions on stretches to do.  Basically, she told me that there is no evidence that stretching helps maintain range of movement.  But there is also no evidence that it doesn't, so they will always err on the side of caution and recommend that parents do this stretching as much as possible.  In Joshua's case, his right leg is worse than his left leg, so she told me if I am short on time, to just do the right leg.  She also did not say anything like "this must be done three times a day for so many minutes" etc, because she is realistic and just wants me to do what I can manage.  The real advantage to doing stretches, they said, is that I will be familiar with what his tone usually feels like and will know if it starts to feel worse or better.
Anyway, since it has taken this long for me to be given some formal instructions, I figured that there might be other parents out there in the same situation.  I tried searching for things online, but that was difficult when I didn't really know exactly what I was searching for.  So I have decided to post our instructions online in case they are helpful to someone who searches for this.

These are stretches for the legs, primarily for the calves, hamstrings, and abductor muscles, as these are the areas that Joshua's legs are affected by his high tone.      Physiotherapy Stretches

Friday, September 2, 2011

Another Set of Eyes

Today we met Sue, a visiting Paediatric Physiotherapist from Adelaide.  She came to our house to see Joshua, along with his therapist from Carpentaria Disability Services.  (I was really glad they could come to the house, because I work Fridays and I feel like I have taken a lot of time off for Joshua's appointments lately.  Of course, I do what I have to do, but this was great, as they could come and see him and I didn't have to take any time off work as I was still there with the kids.)
Sue is going to see him every three months, and she also is involved with the Rehab Clinic we were told about that runs from the hospital for people with Cerebral Palsy, which is also every 3 months.  Basically she just watched Joshua doing what he does and had a bit of a feel of his muscles.
And then she told me that Joshua is going to be a "Botox Boy".  No doubt you have all heard of Botox and people who use it for cosmetic reasons.  But just like botox can "relax" wrinkles, it can also relax the spastic (tight) muscles of children with Cerebral Palsy.  It is injected into the problem areas and lasts for about 3-6 months.  Once those muscles are relaxed, it allows for the child to make greater advances with the help of their traditional therapies.  Of course, this is still something I need to research and make a decision about, but she told me from a Therapist's point of view, Botox is a fairly simple treatment than can make a huge difference.  She also told me that in Australia, Botox can only be done once the child turns Two.  So we are still a way off this happening, but she thinks he will benefit from it greatly.

She also wants us to have access to some special equipment.  First is the AFO's I have previously mentioned (Braces for his legs).  Second is a stander to help him stand up.  This was mentioned not long before we left the Children's Development Team but the smallest one they had was too big for him.  Although he is pulling to a stand now, he still needs a lot of help and the effort that it takes him just to maintain a standing position means that once he is standing, he is unable to participate in much else.  She thinks having a stander will open up opportunities for him to be able to participate in activities with the other children (be able to stand at the table and do an activity, being free to use his hands to play rather than to support himself).  She said some standers are designed to provide a lot of support for Children that are more severely affected, but that there are also some that provide lighter support and that is all he needs.  She said that he wants to be standing upright now, and if that is what he wants to do, then we should help him do that.
Similarly, she also wants him to have a special chair.   Right now, he is unable to sit at the table with the other children for any length of time because he is not stable on the children's chairs that I have.  He needs to have his feet flat on the floor.  But a smaller chair that allows him to have his feet flat on the floor, would mean that he is too low to the table.  So they are talking about a chair that has height adjustable legs and adjustable foot plates so that even if his feet don't touch the floor he still has something to put them on and be able to sit well.  So basically, equipment that will allow him to be better included and participate more fully.  He is also definitely going to see the Speech Therapist, probably even next week on Monday.  
So overall, I am really happy about this, and definitely feeling that changing from the Children's Development Team to Carpentaria Disability Services was a good thing!!  (But I am still waiting on the report from his Assessment!!)

Joshua Standing up
    

Monday, August 29, 2011

New Therapy and W-Sitting

As I have mentioned previously, we finished up with the Children's Development Team a few weeks ago, which is where we have been receiving Therapy since Joshua was 5 months old.  After Joshua's official Cerebral Palsy diagnosis, the Doctor wanted him to be referred to Carpentaria Disability Services, which is an early intervention service for children that have higher support needs than those that are catered for with the Children's Development Team.
Last week, we had our initial assessment done with the Pyschologist.  I am still waiting on the results.  He initially told me he'd call me with them on Friday, but he didn't call on Friday.  He called today and said he will have the report ready in the next few days, definitely by the end of the week.  I am a bit impatient for the results, but I don't have much choice but to wait!  His assessment was done using the Griffith's Scale, which is the first time we've had this particular assessment.  (All previous assessments were done using the ASQ).  The report from the Griffith's Scale is apparently much more detailed and will give the age level that he is functioning at for each of the developmental areas.  I am looking forward to seeing it.  When you have a child with developmental delays, a common question is "How delayed is he?" and until now, I haven't really had an official answer for that.  Of course, given my own knowledge of child development, I can make my own approximation, but I am keen to see what this assessment says and how it compares with what I am thinking in my head.
Carpentaria also have a visiting Physiotherapist that comes up from Adelaide every 3 months.  Apparently she is a very well respected Paediatric Physio, and she is coming to Darwin this week.  She is going to come and see Joshua on Friday, so that should also be interesting.
Today, we had our first therapy session with our new therapist from Carpentaria.  Her name is Andy and she is an Occupational Therapist.  She will be Joshua's primary therapist as part of a multidisciplinary approach to Therapy.  They believe it is best for each child to form a good relationship with one particular therapist rather than see many different people each week, however, other therapists will be called in as needed.  Andy was very nice and interacted well with Joshua.  It almost amuses me to say that, since the model of therapy they use is called DIR/Floortime.  And they also use something else called the Circle of Security.  If you ask me, these are just fancy names for saying that they base their therapy on theories of Child development.  Which seems kind of obvious.  LOL.  Mostly though, they are interested in attachment theory and the fact that children learn best when they have a secure base to explore from, so they focus largely on establishing positive relationships with the child and supporting such relationships between the parent and the child and using those relationships and interactions to build on the child's development.
If anybody is interested, I found an article a few weeks ago about DIR/Floortime, it is not a bad read.
DIR/Floortime - What is is and isn't.
Basically, they focus on development from a holistic point of view, which is quite interesting (yet logical!).
So, I discussed with Andy about getting AFO's for Joshua (braces for his legs), and she also asked me if we'd ever had input from a Speech Therapist.  I told her No, that we had been placed on the waiting list at CDT when he was 10 months old, and were not seen in the time we were there.  So she is going to arrange for the CDS Speech Therapist to come and see Joshua and give some input and also to do a feeding assessment to check if he is having any feeding issues that might need to be worked on.
I also talked to her about W-sitting.  This is a type of sitting that is often favoured by children with Cerebral Palsy as it is a much more stable way of sitting.  Unfortunately, it is also quite bad for the hips and many people treat W-sitting as though it is the devil and should be avoided at all costs because your child will damage themselves.
This is an example of Joshua W-sitting.  Basically the legs form the shape of a W.
I asked some other HIE parents about it, and basically the replies were a resounding NO WAY.  That they were told to never ever ever let their child sit like that and if they did, they should correct them right away.  This was not actually the response I wanted.  Why?  Well because at 15 months of age, Joshua is still unable to get himself into a sitting position independently.  That is, a real sitting position, on his bottom.   I don't think there is any real physical reason to why he can't...  I think he should be able to, given the other things he is doing.  But he doesn't.  We've been trying to show him/help him for months and months, and he still doesn't do it.  He does however, get up on hands and knees and push back into a W-Sit.  This has opened up a whole new world of play for Joshua.  Because he can get into this position independently and can use it to play with toys upright, rather than having to play from his tummy or wait for me to sit him up.    So, you see, it doesn't sit too well with me to have to prevent him from doing something that gives him so much independence.  I wanted somebody to tell me it was ok to let him sit like that.  And I didn't really want to bring it up with one of his therapists and have them tell me under no uncertain terms that I had to stop him from doing it, because then I would just feel guilty when I don't.  Let's face it...  I have 4 other kids to look after 4 days a week..  I really don't have time to be following Joshua around and stopping him from W-sitting every time he does it...
So, I talked to Tahnee, the physio at the Children's Development Team on our last day there..  she told me that if he was only sitting like that to transition between positions then it was ok, but if he was sitting like that for long periods then it would be best to encourage a different position, even if it was just by bringing one leg to the front. Today, I spoke to his new therapist Andy, about the W-sitting.  She was not too concerned.  He does sit and play like that..  but he is 1 years old.  And he has the attention span of a..  well.   of a 1 year old!  Which really isn't that long.  So he really only sits like that for a few minutes before he is off again doing something else.  Plus, she noted that he isn't just sitting there like that, but he also gets up into high kneeling while doing something and then sits back down in a W-sit again to play a bit more and then he is off again and moving.  He is a busy boy.  So yeah.  Joshua W-sits.  And I don't make him stop.  And I don't feel bad!
So that is it from me, hopefully I will be updating again soon about the results of his assessment and how things go on Friday with the physio!



Wednesday, August 10, 2011

Hearing Test - Take 3

So, if you have been following our hearing test saga then you would know that Joshua passed his newborn hearing screening, and then, due to being in a high risk category, had to have a follow up hearing test at around 9 months of age.  (He was actually 10.5 months when it was done, but never mind)
The first test was basically inconclusive because Joshua was unable to condition to the test.  It left me very upset and frustrated because it was quite clear to me that the method of testing (Visual Reinforcement Orientation Audiometry) just wasn't suitable for Joshua.  This type of testing is generally considered suitable for infants from the age of 7 months.  Upon being unable to condition to the Visual Reinforcement test, they tried using Behavioural Observation Audiometry, which is used for babies younger than 7 months.  Although this was more successful, he still only responded consistently to sounds around 50 decibels or "LOUD CONVERSATION".  I also felt that the way they were trying to distract him during the test was counterproductive to trying to get a response from him...
We had to go back a second time in the hopes that he would be able to condition to the Visual Reinforcement after a couple of months had passed.  He did do much better, but the results were still consistent with mild hearing loss.
Today, a month after the second test, we went back for round three.   I wasn't sure what they were going to do this time, as they told me on the phone they wanted to do some *different* tests to get a better idea of what was going on with his hearing.  As it turns out, they didn't do anything different, it was the same Visual Reinforcement test.  This time however, we had a different Audiologist and also a different girl who was assisting her.  And....  JOSHUA ACED THE TEST.   He looked at their stupid puppets and responded to the sounds every single time.  Unlike the last times, he totally understood what he was supposed to do.  So..  they might say that type of testing is suitable from 7 months....  but it took my son until he was 14 months to understand 100% what was expected of him.  So frustrating, as I have been telling them all this time that I had NO concerns about his hearing, but of course they make you paranoid and doubt yourself.  Anyway, I talked to the Audiologist after the test and she told me he totally passed and responded to every sound level that they play at this age.  I told her he did WAY better than the other times, and that my feeling all along had been that the testing had not been appropriate for Joshua's ability and not that he had a hearing problem.  She even mentioned something about how when he was too interested in the toy that the assistant had, he didn't respond but when she backed off on the "distraction" he paid attention again.  And I said "Yes, that was my issue with previous tests too, because they were actually giving him the toys and he was banging them around and making noises and not paying any attention at all, so it was really no surprise that he wasn't listening" And she said "Well it sounds like everybody did a better job today then!"
Anyway, the last time that we went he had a bit of a cold and had fluid in one of his ears.  Today was the same story (although that first cold cleared up and this is another one!)  So she said they would like to see him again in three months, just to basically monitor the fluid in his ears.  She says it is totally normal and unconcerning for them to find that given he has a runny nose, but that they want to be sure that it is not an ongoing problem...  if he was to constantly have fluid in his ears, they would refer him to an ENT for another opinion.  Interestingly, this Audiologist kept going on about how his particular Paediatrician at the hospital is "Great with ears" and knows "all about ear problems" so if there was something wrong then he'd find it at our hospital visits.  Oh, and she also said to me that usually, when there is a hearing problem associated with a lack of oxygen at birth/brain damage then they usually find problems much earlier on than now with things not working as they should.
So anyway...  there we have it...  a hearing test that backs up what I have known all along- HE CAN HEAR!  :)

Friday, August 5, 2011

I am getting better at this!

Talking that is.  About what has happened to us.  Having this blog is a great outlet for me because I can get everything out...  in real life though, particularly with strangers or people I am not close with, I tend to avoid discussing things.  I am truly happy and 'OK', but there is so much raw emotion that sits just below the surface, and if you accidentally open the flood gates, it can be difficult to stop what might come pouring out.  That might be ok sometimes, but generally speaking you don't want to turn into a blubbering mess in the line at the post office if someone asks you a question about your child.  Sometimes, my strategy has been to lie to people, because it is just easier.   Conversations like "Oh he is so cute, how old is he?" and when I tell them they immediately say "Oh, is he walking yet?"  No...  no he is not walking.  Not even close.  But if you give an answer like that, it inevitably results in more questions, so sometimes I just smile and say "Yeah".  Truth is, I am never going to see that person again, so I don't really need to give them his life story.  Sometimes it feels wrong to lie though, like I am doing him an injustice.  Because honestly, my goal in life is to show the world how awesome he is despite his challenges and not to pretend that they don't exist.

So, today we had an appointment at the hospital.  It was essentially a follow up to our last appointment where we were officially given a diagnosis of Spastic Quadriplegia Cerebral Palsy.  I think in a lot of ways, I am a freak of nature or something, because I am so ok with this diagnosis.  I have honestly not shed a single tear about it.  I honestly got all of those feelings out months ago.  And I find it hard to understand when I see other parents talking about their child potentially getting a CP diagnosis down the road.  Logically, I understand, and I try to remind myself that I have in fact been at that point myself in some shape or form. But when I see children who are doing much better than Joshua and their parents worrying about a CP diagnosis in the future, I really don't understand.  I feel like saying "what is the big deal?  My kid has a CP diagnosis and he is the most freaking awesome kid in the whole world?!  What are you so worried about?!"  I don't say that of course, but that is truly how I feel.  (And I apologise if you are one of those parents and are reading this and find it insensitive of me to say this...  I truly am not discounting the very real feelings of worry that you have for your child, I just want everyone to know that getting a Cerebral Palsy diagnosis is not the end of the world, and it doesn't even have to be a bad thing!)  Nobody really wants their child to have Cerebral Palsy...  NOBODY.  And I realise that some parents with children on the severe end of the spectrum will probably be annoyed by my positivity at times, because their reality is again, different to mine, but here is my Joshua, in the moderate range of things, and life is good.

Anyway, back to our appointment and what I was originally going to talk about before I got a bit side tracked there.  We were in the waiting room to be seen and there was a little girl in there with her father.  Joshua was army crawling around, pushing some toys around when the father asked me how old he was, but instead of asking how old he was, he said "Is he 6-8 months old?"  And I said "No, he is 14 months" and he said "Oh, does he walk?" and I said "No, not yet"  To which the guy replied, "I didn't think so.  He doesn't look like he is even trying to walk?"  And I said "No, he has cerebral palsy, so he is delayed"  Interestingly the guy seemed to have a bit of a working knowledge of CP though I didn't ask him for his qualifications on the subject Hahaha.  So after that he said "I thought he looked older, because he is big and his facial features look older and he has a lot of teeth, but he behaves like a 6-8 month old"  And I was like "yeah" and then he said "Does the cerebral palsy affect his legs and not his arms?" and I said "No, it affects all of them, but his legs are worse than his arms" He kept asking questions...  about what caused his CP and I found myself telling him that he suffered from a lack of oxygen before he was born which resulted in extensive brain damage, that he spent 2 weeks in hospital after he was born.  He asked me if he was premature and I said No.  He asked me other questions about his development.  It was kinda weird and so nosey really when you think about it.  But the amazing thing about this, is that I conducted this conversation and did not become upset while sharing these details.  This is quite huge for me.  Oh and this random guy told me that Joshua was a very busy boy and that was a good sign.  (Maybe I really should have asked him for his qualifications...  LOL)  

Then we went in to see the Dr, and again, I managed to talk to him and stay cool as a cucumber the whole time.  (Ok, I admit that I felt myself falter a couple of times (the flood gates started to creak open, but I was able to quickly shut them before anything got out!!)  LOL  So basically the main parts of this appointment was that he wrote up a form for me to take Joshua for a hip x-ray, which he wants done before he sees him next (in three months time).  The reason for the x-ray is because the high muscle tone can cause problems with hip dislocation etc, so it will need monitoring.  He said yearly x-rays, unless of course they show a problem, which might change the course of treatment.  He also filled out the medical report that I need for Centrelink in order to get Carer's Allowance.  This is a non income tested allowance that will give me $110 a week, plus a health care card to help with the cost of medical expenses, plus an annual payment of $1000 to help with his care.  It will be nice, because I am self-employed, I do not get any paid leave.  Any time I take off in order to take Joshua for appointments is all unpaid, and I haven't won lotto yet, so I will appreciate this little bit of help.  
It is always interesting to see things in writing though...   The report says:
Primary Disability or medical condition of the child:
Cerebral Palsy
-Spastic Quadriplegia
-Developmental Delay
Other disability or medical conditions of the child:
Microcephaly (Severe)  
I am not sure why, but the inclusion of the word SEVERE is what got me there.  Was that really necessary?  LOL   Meanwhile, I was happy because his head seems to have had a little growth spurt, it measured up to a whopping 42.3cm today!!   Not that it is a competition, but as pathetic as his head circumference is (About average size for a 4 month old) I know of other kids with smaller heads.
So apart from those two things, two other interesting things occurred.  I am not really sure how it came up, but I ended up telling the Doctor how I am very active online networking with other parents in the same situation, and so I have been fortunate enough to see the whole range of outcomes from children who are completely fine to children who are severely affected, but that it has been very beneficial because many HIE children do go on to get a CP diagnosis and I have been able to see how well some of them are doing and know that these conditions do not have to be all doom and gloom.  He told me that was great because it was one of the biggest problems that they hear from parents is that they do not know where to go and how to access support, and so I told him that many parents, us included, leave the hospital feeling as though they are the only person in the world for this to ever happen to and that being able to talk to other parents is really invaluable.  I also went on to tell him about the Hope for HIE foundation that is currently being set up.  A website for families to access information about Hypoxic Ischemic Encephalopathy, and get support.   I said that they hoped to have it up and running in the near future and that I will be certainly letting him know all the details once it was, because the ideal situation would be for him to be able to pass this information on to parents as soon as the diagnosis is made.  I told him that pretty much everyone is given a prognosis that is somewhat doom and gloom, but that being able to see all the different outcomes and know that life does not have to be as bad as you were initially told, is great.  And he said "And that is why it is called Hope for HIE?" And I said "Yes, because parents need to have hope for their child"  He said it was really great and was looking forward to getting more information.
He also said to me "I was meant to ask you too, Did you make a request to get Joshua's medical records?". I was kinda thinking oh man, what is he going to say about that.  So I said "Yes, I did".  And he said "And did they send you everything you wanted?"  And I said "yes, I got everything I asked for" and he said "Do you have any questions about anything you read, I know there is a lot of medical terminology in there, and we wanted to make sure that you had an opportunity to ask any questions that you might have after reading it"  I told him No, I don't really have any questions.  My one question is "Why did this happen?" but as I understand it, that is still a question mark.  Which he agreed with.  (I did not tell him that I sent the records to another Doctor to get another opinion, that might be stretching the friendship a bit...  LOL)  But I did think it was really nice of him to bring it up and see if I wanted to talk about anything.  He seemed quite supportive of the fact that I had gotten everything, and I think today he has come to realise just how informed that I am about everything.  By the way, the Doctor that is reviewing our medical records has told me that he hopes to have his report to me by mid-September, so I can't wait to see what he has to say.  I am not really expecting anything ground breaking, because he is limited by the records we have, but still.

Well that is it, another super long post from me!  I will leave you with a picture of my handsome little dude, as I think I need to put more photos on my blog!  ;)

Monday, July 25, 2011

So confused Now!

Today we went to baby group at the Children's Development Team and its looking like we will only be going one more time and then we're leaving to go with Carpentaria Disability Services.  The Occupational Therapist talked to me today though and she was all like "You don't have to go if you don't want to, its up to you, don't feel like you have to go.  I agree with what Peter Morris (The Doctor) is saying and on paper Carpentaria looks like the best service for him, but they don't even have a physio working there at the moment, they just have a "visiting physio" and I have been talking to Tahnee (the PT) and we just wanted to tell you that you don't have to go, we are willing to do whatever Joshua needs"
Well WTF.  
Talk about being in a bind!  I really don't know what the best thing for him is.  To stay somewhere that we know and love and risk missing out on better service, or to go and find out that we should have stayed.  As it is, I am going to give it a chance with Carpentaria because I don't know what that is like until we try it.  I Was talking to a friend the other day who told me she knows a mother who was crying when her child reached school age and got transferred back to CDT (Carpentaria only does until they go to school and then they go back) She loved Carpentaria so much...
Before, I thought we were changing services because it was the right thing to do but now I don't know if it is the right thing to do!!   I am thinking if I don't like it we can change back though....   But we are not allowed to go to both at the same time...  LOL   (I asked if we could still come to baby group, and the answer was no!)

I am still so confused by all this though, seeing as people that live elsewhere get seen by all of the different therapists..  I still can't help but wonder if we are getting jipped with this whole "Multi-disciplinary" service delivery.   AUGH!!!!