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!!!!  

Wednesday, July 20, 2011

Appointments, so many appointments!

We have a few things coming up, I almost need to write them all down here so that I will remember!!

As I mentioned a few posts ago, following Joshua's Cerebral Palsy diagnosis we have been referred to a different Early Intervention Service, which is Carpentaria Disability Service.  This service is intended for children who are more severe than the ones that go to the Children's Development Team (where we have been going so far).   The ball is now rolling for that, and I have an appointment with someone on Monday August 15 to have a general chat about the service.  (I am actually not sure who/what this person is..  as in, their job title..)   It is just to go over how everything works.  Then the following Monday, 22nd August, we have an assessment with the psychologist.  After this initial assessment, he will start therapy the following Monday.  It worked out well as his therapy is going to be on the same day as it was at CDT, so I have not had to change anything work wise.  I did have a chat on the phone the other day with the Occupational Therapist, she seemed really nice on the phone and she told me that she was going to be Joshua's therapist. I asked her if he would see each therapist (as in physio, Occupational Therapy, Speech) separately, and she told me No, that they operate as a "multi-disciplinary service" and they try to make it so that one therapist is assigned to each child and that they will work on all areas.  But if there is specific concern/complex issue in a certain area they will bring in the relevant therapist on an as needed basis.  I find this to be interesting, as I haven't really heard of it being done this way in other places.  It is no different to the therapy we have been receiving so far though, where the OT and PT would alternate running it each term.  That therapy was 1.5 hours per week and in a group setting...  he will now be getting 1 hour a week on an individual basis.  Hopefully that is better for him?  I initially thought that we might be placed on a waiting list before starting with the new therapy, but when I asked the OT about this she told me No, that based on the Doctor's referral Joshua is a high needs case and will get straight in without going on a waiting list.  Interesting really, as I would expect there would be worse kids than Joshua....  I wonder what they will be expecting when they meet him for the first time, as many times I think he sounds worse on paper than he seems in real life.

So our days at Baby group with the Children's Development Team are numbered...  though his new therapy is on Monday afternoons so technically I could still go...  so we could keep seeing our little friends there...  But I am not sure if they will kick us out...   LOL.  It really is a bit sad, we have been going since Joshua was 5 months old and I usually enjoy taking him.  If we don't keep going, I might have to find something else to do with him on Monday mornings.  Oh, and the other interesting thing about the new therapy is that it is going to be home visits.  (Darn it, now I have to make sure the house is clean, Hahaha!)  The physio at CDT basically told me last week that they want Joshua to have AFO's and they were hoping to get the ball rolling with that before we started at Carpentaria.  This is interesting, because you might remember I posted about this a little while ago, and brought it up at his most recent assessment with the CDT and the OT told me she would rather see him crawl for a while before he got AFO's.  Now they seem to want to do it...  I am not really sure if this will fall into place in time because I am waiting on the forms from Centrelink regarding the disability/carer stuff, and as part of that, we should be able to get a health care card for him.  The physio said that the orthotics cost money (obviously) but if we had a health care card for him then we would not have to pay anything.  So that will be really helpful.  Anyway, it will take a few weeks to get the centrelink stuff sorted once I have the forms, so it may end up that the whole process takes too long and they won't actually have sorted him for AFO's before we change over.  I think the physio at CDT anticipated we'd have to wait longer before getting in too.

So, we also have to go back to the hospital on Friday 5th August.  I think this appointment is a little pointless, but I do appreciate that it was made.  The Doctor is basically expecting us to have gone away after receiving a Cerebral Palsy diagnosis and to have had a bit of a panic attack and then want to go back and ask him a million questions once it all settled in.  In reality, this is not the case for me.  I was not shocked to receive a Cerebral Palsy diagnosis, I was quite certain by the time that he was 8 months old that we were headed that way.  When you read about cerebral palsy and the way it affects movement, the descriptions fit Joshua exactly.  Also, being active in online support groups for HIE means that I have seen many different outcomes for children with HIE...  and for a lot of children Cerebral Palsy is one of them.  Through seeing photos of other children and hearing stories from their parents, I have learned that Cerebral Palsy does not have to be a scary word.  It is true that sometimes Cerebral Palsy can be very severe, but many times people are able to live full and happy lives despite having Cerebral Palsy, and that continues to be my hope for Joshua.  Anyway, I have seen many discussions over the last year about Cerebral Palsy and all of the different options there are for treatment, so I don't really have any questions.  The only questions I really want answers to are not about Cerebral Palsy in general, but would be ones that relate specifically to Joshua and his prognosis, but the truth is, that is still up in the air, the Doctor cannot tell me those things now, just like he couldn't tell me when he was born.  So, for right now, I am totally at peace with a Cerebral palsy diagnosis and we will just deal with things as they come up, one step at a time.  If they are recommending specific treatment options, certainly I will have questions then, but for right now, we carry on our merry way.  

The other appointment we have is another (!$%##!!) Hearing Test.  They called me today and said they want to bring him back to do some other kinds of tests.  I have no freaking clue what, and I wish I did now.  But they told me that the tests they want to do will require two Audiologists to do.  This appointment will be on Wednesday the 10th August.  And this whole hearing thing is pissing me off more than anything else!!          

So, this is what is going on with us right now, and I guess I will be updating after some of these appointments have been and gone, or if something awesome happens in the mean time!  Like crawling!  (Yep..  still waiting on the crawling!  LOL)

Friday, July 15, 2011

Developmental Bursts

Sometimes it seems like we are just cruising along with not much new happening, and then other times we seem to have periods where lots of things happen.  A developmental burst, where his skills suddenly shoot forwards.  These periods are very exciting and definitely make you feel hopeful about the future.  I wanted to write and share some of the new things Joshua has done over recent weeks:

  • Joshua learned to uncover a toy that was hidden by a cloth.  
  • Joshua is starting to try and pull to a stand.  He is quite good at it when holding onto my hands and has made three pretty good attempts on his own with a piece of furniture, so its coming!
  • When you try to put him down on his rocking horse he has started to spread his legs apart to go over the seat.  Last week I was still having to physically open them myself in order to sit him down.  
  • Joshua is starting to try and converse with us.  By this I mean he has started to turn take with babble. When I talk to him, he looks me directly in the eye and makes a sound back to me.  If I keep talking he makes another sound in reply.  Very simple sounds like "Arg", but he is purposely saying it "to me" and not just babbling away to himself/not directed at anybody.   
  • He is *starting* to try and put his arms out to break his fall if he loses his balance while sitting.
  • He is starting to snuggle up to us/show affection.  (Lay his head down on our shoulder for a cuddle)  
  • When I am standing up, he has started to army crawl over to me and try to climb up my leg (show an active desire to want to be picked up or interacted with)  
  • He is starting to show interest in other children...  following them when they play and trying to see what they are doing (and interfere!)
  • He is taking an interest in our pet cats.  He now giggles when he sees them and tries to chase after them and grab them.  
There is probably a couple more things but I can't think right now ;)  All of these are new things to emerge over the last few days up to about 2 weeks ago.  You just never know what will happen next!  

Monday, July 11, 2011

Hearing Test - Take 2

Today Joshua had a follow up hearing test.  The last one did not go so well, and left me pretty upset.  I was not expecting this test to go any better and I really didn't want to take him.  Nevertheless, I did take him.  Much to my surprise, this one went a lot better.  Last time he was not able to condition to the test, where they wanted him to turn his head towards the sound and be rewarded by a puppet that lights up in a box (while distracting him with toys!).  This time, miraculously, he did do it.  Not 100% consistently, but he did  understand what to do to a degree and was doing it fairly well.  The man in the room judging his responses was very nice and I think I 'gelled' with him a bit more than the lady that was there the first time.  Not that the first lady was unpleasant, but Joshua definitely engaged with this man and I felt like he was working with us rather than against us.  Joshua is a bit unwell at the moment, and one of his ears showed some slight resistance when she did the ear pressure test, which is due to the congestion of current sickness, so they only tested one ear (the good one) and the results were consistent with mild hearing loss, however the audiologist stated that she would not be comfortable making that diagnosis at this point in time because Joshua is still not responding to the test with enough consistency to say that with any certainty.  He did however, respond consistently to sounds that are within the range of normal speech, so even if he does have some hearing issues, they do not feel that they will effect the development of speech.  So overall, this was a lot more positive than the last attempt.  They want to see him again in six weeks, when the congestion from his cold should have cleared, and the man did also say that sometimes it takes a few tries for the child to really understand what to do with the test (Which they didn't tell me last time, they didn't really say anything to reassure me at all!), so he might respond even better next time.  So, now I am feeling a lot better about the whole hearing thing.

We also went to baby group today.  Fortunately baby group is at the same place as the hearing test, so I was able to go to baby group and then just duck straight out for the hearing test.  This week was the first week of the new term and there are two new therapists running it this term.  I can already say that it is a ton better than last term.  I mentioned before that I really got nothing out of last term at all, which frustrated me a lot and is part of the reason I am pleased that we are going to be referred to Carpentaria Disability Services now.  However, that will take time, we will have to have an initial intake appointment with them and then there is often a waiting list to get in, so until we do get in there, I will continue to go to the Children's Development Team.  The physio was very good and spent a fair bit of time with Joshua today and made me feel like she was actually understanding some of my concerns that might have been brushed over in the past.  She thinks the best thing for the high tone in Joshua's leg is weight bearing, which of course comes with its own challenges.  She has suggested getting him to stand with his right leg on something like a bread board to create extra stability for him due to the right leg being slightly shorter...  She also wanted to be able to loan us a stander for him, which would be really great, as a stander enables him to stand up and bear weight on his legs without me having to hold him the entire time.  Unfortunately though, she went and looked and the smallest stander they have was too big for Joshua...  he needed to be about an inch taller to make it work...  In any case, I feel that baby group is going to be a lot better this term...  far more helpful than last term which is great, especially as I don't know how soon we will be able to change services!

Friday, July 8, 2011

Cerebral Palsy

Today we had our 5th follow up appointment at the hospital.  I am used to them sort of dodging around things in a way, and my plan was to go in there and ask them straight out when they would make a diagnosis like Cerebral Palsy.  As it turns out, I didn't have to try too hard, and we have received an official diagnosis of Spastic Quadriplegia Cerebral Palsy.

Some Facts about Cerebral Palsy:
Cerebral palsy refers to a group of disorders that affect movement. It is a permanent, but not unchanging, physical disability caused by an injury to the developing brain, usually before birth.
Cerebral palsy may only be mild and cause only a slight disruption to a person’s daily life. It can also be more severe, affecting the whole body and may significantly impact how a person participates in daily activities.
In Australia, there are approximately 33,000 people with cerebral palsy. Worldwide, the incidence of cerebral palsy is 1 in 500 births. For most people with cerebral palsy, the cause is unknown. There is no known cure.
There are three predominant types of cerebral palsy and each are characterised by different movement patterns. Movements can be uncontrolled or unpredictable, muscles can be stiff or tight and in some cases people have shaky movements or tremors.
In addition to their motor disability, people with cerebral palsy may have other associated impairments including epilepsy, and disorders of speech, vision, hearing and /or intellect. 
Most people with cerebral palsy have a normal life expectancy. The damage to the brain that causes cerebral palsy does not progress (get worse) as the person gets older.

Cerebral palsy is classified in two different ways, that is its impact on movement, and the parts of the body affected.  

In our case, the impact on movement is "Spasticity" which refers to the muscles being spastic or having high muscle tone.  The muscles are tighter than they should be, therefore more difficult to move.  Quadriplegia refers to the fact that all four limbs are affected.  (There is also Hemiplegia which is when only the right or left side is affect, or diplegia where either only the arms, or only the legs are affected)   

So back to our appointment...  Virtually the first thing the Doctor said to us was "What have you been told so far in regards to diagnoses and prognosis for the future?" to which I said "Not much, basically everyone just says how well he is doing under the circumstances and are happy that he is continuing to progress, but I was planning to ask you today about when you would make a diagnosis like Cerebral Palsy, because in my opinion that is where we are heading"  He said Ok and proceeded to ask some questions and have a bit of a look at him, just the normal stuff really, and then he said "Yes, today we can say that he does have Cerebral Palsy."  I specifically asked him what type of cerebral palsy because I could never decide if he was quadriplegia or hemiplegia.  The Doctor feels that although his right side is worse than his left, that all of the limbs are affected.  Slight negativity there, in that he said that Children with quadriplegia have a harder time learning to walk than children with hemiplegia, because they have to struggle with two "faulty" legs rather than one.   He also mentioned Joshua's microcephaly and reiterated again that for the  extremely small size of his head, he is really doing very well.  He also said that it is great that he is as mobile as he is already because many children with Cerebral Palsy are not.  He also said that right now it is really impossible to tell how all of this has affected his cognitive function.

He then went on to discuss some of the different things that will need to happen.  First of all, he wants us to apply through the Government for disability/carers payment, as he believes in the future Joshua will need more assistance and the sooner you are in the system, the better.  We have another hospital appointment in three weeks where they will help with the form for that (as the Doctor needs to fill out part of it as "proof" there is an issue).  He also said that Joshua will need to have regular x-rays on his hips, as the tendon tightening associated with Cerebral Palsy can cause the hips to dislocate.  He is also initiating referral into the Carpentaria Disability Service that I have mentioned in the past, which is basically Early Intervention for children that need more help than what we are currently getting at the Children's Development Team.  I am pleased about that because I feel that he was falling through the cracks a bit at the CDT.   He also said that the hospital has a "Rehab Clinic" for people with Cerebral palsy, where they have specialists come up from interstate every few months, and he is getting Joshua into that.  He also wants to see Joshua more frequently, and says that the next 12 to 24 months are really quite critical in terms of getting help for Joshua.  He also agrees with my suspicions that Joshua's right leg is shorter than his left, which I brought up with the Physio at his 10 month assessment, so that will also need monitoring.  So yeah..  basically we are going to start having a lot more appointments and my biggest concern about that is really financial...being able to juggle them all and still be able to work.  I will have to see how it all works out.

So that is it, the verdict is in, and overall I am happy about it because it means that we will be getting access to more services and obviously the more help he gets, the better off he will be.

Oops, Edited to Add:

Joshua's stats at 13 months:

Weight:  9.2kgs
Height: 75cm
Head Circumference: 41.6cm  

Tuesday, July 5, 2011

13 Month Assessment

Yesterday Joshua had his assessment with the OT at the Children's Development Team.  His assessment was supposed to be last week with his Physio, but it was cancelled as she was sick and unfortunately still is, so the OT took over to get the report done for his hospital appointment on Friday.

The following is basically cut and paste from the report (except it isn't, because it is a read only PDF and I can't copy and paste... Grrr.. )

Assessment used:

  • Ages and Stages Questionnaire (ASQ-3) 12 Months
  • KIDSCREEN Occupational Therapy Profile 0-18 months
  • General Observation of Play

Presentation during assessment:
Joshua was largely content and he easily occupied himself with the toys available.  He would smile in response to interactions with people, however he was most content playing on his own.

12 months Ages and Stages Questionnaire:
Joshua's development was screened using the 12 month ASQ.
Results are summarised below-
Communication    10/60     Below cut-off
Gross Motor           0/60     Below cut-off
Fine Motor            20/60    Below cut-off
Problem Solving   20/60    Below cut-off
Personal Social      5/60     Below cut-off

Joshua was able to:

  • Sit unsupported and reach for toys close to him- increased muscle tone noted in his right leg, affected his ability to sit and occasionally caused him to lose his balance.  If he fell sideways he was unable to correct and often fell from his sitting position.
  • Commando crawl using both his elbows/forearms bilaterally and simultaneously, as well as his left leg to propel himself.  His right leg remained extended.  
  • Commando crawl position- using his left arm/hand to reach more frequently than the right.
  • Pull into a kneeling position using furniture.  He could remain in this position for approx. 1 min.
  • Once positioned in standing he could stand for short periods supporting himself with his arms.  Increased muscle tone in his right foot/leg made this difficult.
  • Get into a crawling position (hands and knees).  In this position he rocked backwards and forwards, reached for toys using his right hand more than his left and pivoted on his knees using his arms reciprocally to move himself.
  • Transfer toys between both hands
  • Reach and grasp toys with either hand.
  • Hold toys simultaneously in both hands and bang them together.  
  • Use a pincer grasp with his left hand without need for forearm support.
  • Use a raking motion and successfully pick up a small object with his right hand- no pincer grasp yet.
  • Drop an object out of either hand in response to a request "Ta" from an adult.
  • Bring an object to his mouth using either hand or using both hands together.
  • Retrieve a toy which is completely hidden under a cloth (not done previously)
  • Visually search for an object dropped out of sight.
  • Shift attention from one object to another, in the same visual field.
  • Track objects for short periods in all planes however visual attention often shifts from object.
  • Hold and move both eyes equally
  • Converge both eyes equally
  • Play with objects by repeatedly mouthing, banging, shaking or tapping
  • Play with a toy by tapping it away and then moving towards it repeatedly
  • Play by pushing a wheeled toy along the floor and watching how it moves
  • Smile and laugh in response to an adult playing peek a boo with him
  • Shift his attention to another toy easily eg. if one toy taken away
  • Hold his right hand in a fisted position when commando crawling and with some other movements, however when directly weight bearing through his hands either in a crawling position or in supported standing, his right hand was fully extended as was the left.
Joshua is reportedly:
  • Showing more interest in others  eg. watching other Children play
  • Eating a family diet.  He will eat small bits of finger food however is noted to avoid biting on larger bits.  He will eat from a spoon offered by an adult and is beginning to accept using and taking food from a spoon he is holding with assistance.  
  • Sleeping reasonably well.
Joshua was not observed to:
  • Use arms to right himself in sitting if falling laterally.
  • Release an object with control into a container, or onto a surface, or into a person's hand.
  • Imitate routine/social/play actions of others eg. wave good bye.
  • Take turns in a simple game eg rolling a ball
  • Crawl on hands and knees
Other observations:
  • Full passive range of movement in his upper limbs with stiffening at end ranges.
Summary of Findings:
  • Results from the Occupational therapy assessment indicate that Joshua has significant delays across all areas of development, related to his neurological impairment.  He presents with increased tone in his right side, lower limbs greater than upper limbs, causing asymmetry in movement and function.  His play is limited by his motor skills and is largely sensory (self or object focussed), however it is pleasing to see he is beginning to show interest in others.  However, despite this Joshua is progressing and this is largely due to the dedicated and focussed input provided by his parents.
Intervention Goals:
  1. For Joshua to voluntarily release an object from either hand into a container.
  2. For Joshua to imitate social/routine/play actions eg. waving goodbye, playing ball.
  3. For Joshua to sustain tracking a moving object in all visual planes.
  4. For Joshua to sit without falling using balance reactions.
  5. For Joshua to crawl using reciprocal movement in his arms. 
And that is it basically....  We have our appointment at the hospital on Friday and I have to give this report to his Doctor.  I asked her about Ankle-Foot Orthotics (AFOs) as I mentioned in a previous post and she basically told me that she would rather see him crawling for a while before going that direction.  Admittedly, his ankles have not looked as bad while in standing over the past week so perhaps by the time he is crawling well and they would be willing to consider AFOs, he won't need them...  Time will tell I guess...   Although Joshua is SO close to crawling, I am beginning to think it is going to take longer than I first anticipated.  Certainly, I don't think it will happen before his appointment on Friday and I think on Facebook I speculated it would be a month max..  that was a couple of weeks ago, and now I am starting to think it might not happen that soon.  Well, we will see...  Joshua is the boss of these things :)