Saturday, December 8, 2012

Why you should have another baby after HIE

It is a common theme among HIE parents.  "I want another baby but I am terrified."  And understandably so.  Nothing prepares you for the HIE experience.  You get pregnant, you are happy and excited, you can't wait to meet your beautiful baby, to finally meet this little person and hold them and kiss them and love them, and to go off and live the happy life you imagined for them, your little boy playing soccer, your daughter doing ballet, oh what fun life will be with this little person.
And then it happens.
Your baby is born very sick.  Maybe they needed to be resuscitated immediately after birth.  Maybe you didn't get to hold them for days.  Maybe you had no idea whether or not your new baby was going to live or die.  Maybe you were even told to withdraw life support.  Maybe your health was also in a bad way, or your experience was physically and/or emotionally traumatic.  It is no surprise then, that the prospect of doing it all again doesn't exactly sound all that appealing.

I never ever would have imagined that I would spend the first night of my son's life laying in a hospital bed alone, while he lay ventilated in the NICU, after having witnessed him be resuscitated twice after he stopped breathing due to seizures.  That was certainly a far cry from the cozy picture I had painted myself during pregnancy.  And you don't get over that.  Ever.  Watching your baby literally fight for their life, Doctors not knowing what was wrong, then discovering your child suffered a brain injury and was very unlikely to live a normal life.  Not having any idea how long your baby would need to be in hospital, not being able to hold them, having to feed them through a tube, and having to re-evaluate all those hopes and dreams that you had for that child.  Maybe they will never be able to play soccer, or do ballet.  You will just have to "wait and see".  Yes, it is a shitty place to be.  Your child was permanently injured during the process of their birth.  And birth is not exactly optional....  there is no way to get around that if you want another baby.  So what to do?  Well, I say, Just do it!

After Joshua was born, my immediate thoughts were "that was fucked, I need to do this again right away, I need a do over, I need to do it properly, because this was all wrong, totally not how it was meant to be".   Then I told myself that logically, I should wait until he was a year old before trying to get pregnant again.  As he approached his first birthday, I thought, No way man, that is so soon.  I had absolutely ZERO desire to get pregnant again.  Don't get me wrong, I always planned to, Joshua was never going to be my only child, and I would have made myself do it, but I had not yet reached a point of "wanting" another baby yet.  Joshua was not an easy baby.  He cried a lot.  He didn't sleep.  (He still doesn't sleep very well).  Our days were full of appointments, therapists, paediatricians, orthotics, audiology, ophthalmology, specialists.  How could I ever manage to look after Joshua and do all that with another baby in tow?  I am already so busy.

When I thought about having another newborn, I didn't get warm fuzzies.  I just thought about how much more work it would be.  I imagined myself with another newborn that was just like Joshua had been, that screamed and didn't sleep.  And I thought, no thanks, I can't do that again.

And then I got pregnant again.   Joshua was 15 months old and it happened before I had actually made the decision that we would start actively trying again.  In some ways, that was a blessing, because it removed the need for me to actively make that decision to jump off a cliff again.  Or so it seemed.

My first reaction?  Panic.  Yep.  I felt sick with worry.  At that point, I had no idea what happened to Joshua and whether or not it might happen again.  It was just lucky for me that I had already submitted our records to Dr Hill for review, and just days later, I spoke with him.  I was assured that Joshua's HIE was a random event, unlikely to re-occur and that I didn't need to worry about this happening again, as I was at no greater risk of having a problem with a future pregnancy than any other woman who had never had a HIE baby.  That was music to my ears.

That is the first step.  If you are unsure what caused your child's HIE and you are worried about it happening again, you need to get your records reviewed by someone like Dr Hill, and find out exactly what happened and what your risks are of it happening again.  That really goes a long way to put your mind at ease.  At least it did for me.  After that, I really didn't worry too much about HIE reoccurring.  Many people continue to worry through their whole pregnancy though.  And that is normal too.  But have the facts to talk those dark thoughts back into their box.

People would ask me if I was excited about having another baby, and the honest answer was No.  I wasn't.  Which is really not a socially acceptable answer to that question, so I guess I mostly just smiled and said yes.  It did help for me to find out the gender though, knowing I was having a little girl and to start preparing girly things did help me feel a bit more bonded.  I know many people find it hard to bond with their post-HIE pregnancy.  You've already had your hopes and dreams for a newborn baby shattered once, so its almost a protective measure to not let yourself get too attached to anything just in case it didn't work out that way.  Did I love and want my unborn baby?  Yes I did.  But pregnancy was no longer a period of joyous expectation that it once was.  HIE bursts your bubble, it really does.  But slogging your way through that next pregnancy is so worth it.

For me, it has been the best thing I have ever done, and thoroughly healing.  It is true, not everyone finds their next birth to be a healing experience, but many people do.  Why?  Because you get to do everything right.  And by "right", I mean "right for you".  The ultimate goal for everyone is to bring that baby into the world safely.  The journey to get to that point however, is highly personal, and something one can only decide for themselves.  Many people express the desire to hear the baby cry right away, to be able to hold their baby soon after birth, to basically have an overall positive experience to help erase the negative ones that came about with their HIE babies birth.  Once you decide on the course of action that feels right to you, and you bring your baby into the world, and they don't have HIE (and they won't!), you will be so happy.

I can't really describe what Amelie's birth has done for me, but it was absolutely positive and healing.  Many of you would know that I had a drug free natural birth at home, which is not a popular choice, but it is the choice that was right for me.  But many people choose an elective c-section and also find that to be a wonderful, positive experience.  Getting to have a birth you feel happy with, combined with a happy newborn experience, it just does a world of good to heal your heart.

Adding a new baby to our family is something that can only be described as joyous.  Not only did I have a positive birth experience, but it is also a real thrill to see my new baby meeting all of her developmental milestones easily.  I admit, there are some hard moments because sometimes you can't help but draw comparisons, and especially when your HIE child is your first child, having that second child really makes you realise what you missed out on the first time around.  Like when you are snuggled up in bed cuddling your newborn baby and think to yourself that at this point in your first child's life, they were in a "plastic box" attached to tubes and wires, instead of warm and cosy with their Mama.  It is gut wrenching really.  But at the same time, it also brings an element of peace to get to experience things as they should be.  Sometimes it really hurts to see how easily she does things, knowing how hard those things were for Joshua, but it is so nice to not have to worry about her, and to really be in a special position that allows me to fully appreciate how damn miraculous "normal" really is.

Enough about *me* though.  Been there, done that parents always say that having a sibling for your child is wonderful for them.  And now that I am on the other side of that, I can confirm that it is true.  My son, who is 2.5 years old and has yet to call me Mama....  calls his baby sister "Bubba".  Within two weeks of her birth he had learned that word.  He loves her.  It is true that he is not always gentle.  (ok, he is pretty damn rough with her most of the time) Some of that is accidental, some of that is on purpose, but despite that, you can tell he is thrilled by her.  And it didn't take long to realise that she too had a special smile that she did just for him.  Watching your children interact with each other is nothing short of amazing, and I have no doubt that as they both grow and develop more, and their interactions with each other become more elaborate, it will only get better.

As they say though, Pictures are worth a thousand words, so if you are still umming and aahing about taking the plunge and having another baby, don't take my word for it, just look at these pictures.....

And if that wasn't enough to convince you, here is a video for good measure!

Joyous right?  Now go make a baby!    :)

Monday, November 12, 2012

Living with Cerebral Palsy - Little Things that make meal times easier

I just thought I would do a blog post about some of the items we use on a regular basis that help us out. All of these things are relatively inexpensive baby or toddler items that are designed for typical children but which lend themselves perfectly to assisting a child with Cerebral Palsy like Joshua.

Plates and Cutlery

We are currently using the OXO Tot Plate and the OXO Tot Fork and Spoon.
The main features of this plate are that is weighted and has a non skid bottom to help prevent it from moving about the table when the child is trying to eat, and also, a removable ring that goes around the top of the plate which is designed to assist children when they are trying to scoop food up with utensils.  Self feeding with utensils is still quite difficult for Joshua. He is very good at bring the spoon or fork to his mouth and eating, but he struggles very much with actually scooping food onto a spoon or stabbing it with a fork.  The design of this plate makes that a little easier.  The Cutlery is also weighted and non slip so it will not roll across the table when dropped or slide into the bowl of food when put down against the edge.

Joshua eating using the OXO Tot Plate and Spoon...  Yes..  it is still messy!

Food Pouches

Yoghurt is a popular snack with most toddlers and Joshua is no exception.  These days, many commercially prepared baby food, as well as yoghurts, custards, pureed fruits and even jelly is available in squeezy pouches where the food can be sucked out of a straw like opening.  Anything that Joshua can master independently, or almost independently, really makes my life easier, especially as I also have a baby to care for.  Eating yoghurt with a spoon from a bowl or tub is not something Joshua can manage independently and attempting to do so is tedious and messy.  So I was quite thrilled when Joshua learned to eat yoghurt from a squeezy pouch.  He often still needs help to squeeze up the second half of the tube, but overall it is a quick and easy snack option that he can manage with minimal help and minimal mess.

Joshua eating a "Squeezy Yoghurt"
These pre-packaged 'Squeezy Yoghurts' can get pretty expensive when you are buying a lot of them (and I was!)  until I learned about Squeeze'ems.  Reusable Squeezy Food Pouches, that are BPA Free and can be cleaned in the dishwasher.  They are cheap to buy, and I can simply refill them using yoghurt from a large tub which is much more cost effective than continually purchasing the pre-packaged yoghurts.   These are a great product for kids that are on a totally blended diet or, like Joshua, have difficulty eating with utensils but can suck food from a pouch.

Some of our re-usable food pouches filled with Yoghurt ready for Joshua to enjoy :)  


Many kids love drinking pre-packaged juice or milk drinks.  The kind that come in a box with a straw.  Joshua is not a real fan of juice, but he does LOVE milk, especially chocolate milk and it makes a fun treat.  The problem with these boxed drinks, is that they can be really messy until your toddler learns the right amount of pressure to use to hold the box without squeezing the liquid out everywhere.  These is an even harder skill to master for a child with Cerebral Palsy.  When Joshua wanted to drink such a drink, I would have to hold it for him while he sucked the straw.  If I was to let him hold it, then it would result in an instant mess.  That is, until we started using the Baby U Juice Box Buddies.  A container that holds the drink and prevents the contents from being squeezed out, with the added bonus of having handles, which make it easier to hold.  Now Joshua can sit and enjoy his special milk without his Mum annoying him all the time :)

Joshua drinking an 'Up & Go' using the Juice Box Buddy

Well that is all for now folks, hopefully by sharing a few of the things that work for us, it might help anyone else that is looking for things to help their child :)

Monday, October 1, 2012

Height Right Chair

Today we received a new chair for Joshua.  It is called a Height Right Chair and we were able to purchase the chair using some of our money from our Better Start for Children with Disability Funding.    Well I purchased the chair after having to get it approved from a Therapist that is on the Better Start Panel, and she will arrange for me to be reimbursed.  I am still waiting on the paper work for that.

The reason for wanting this new chair is because it is fairly important for children with Cerebral Palsy to be well supported when they are seated.  Everything involves a lot more effort for a child with CP.  When you are just sitting in a chair you may take for granted the fact that you are having to keep your body balanced in certain ways to remain upright, it comes very easily to the average person.  But for a person with CP, it often requires an active effort on their part just to remain seated.  When you combine that with trying to do other things while sitting, such as using your hands to eat or play, it makes things extra hard.   By having a good supportive seat, that takes the effort out of sitting, it frees the person up to concentrate on being able to use their hands more effectively.  One of the main things that make a seat a good fit for Joshua, is that it has a foot plate for him to rest his feet.  Imagine for a moment, or even try it out, sitting on a chair with your feet in the air.  When you lift your feet from the floor, you suddenly need to engage a lot more of your core muscles to keep your upper body upright.  When you place your feet flat on the floor, you are able to relax those core muscles again, as your feet help to keep you stable.  This is what we wanted to achieve for Joshua, so we could maximise his ability to do things such as feed himself with utensils, which is still very much an emerging skill for him.

Up until now, Joshua has been using a Fisher Price Healthy Care Booster Seat, strapped to a regular chair and pushed up to the table.  These seats work very well for most children, and we could certainly make do with it, but it was not ideal for Joshua as it lacked somewhere for him to rest his feet.

Joshua in the Fisher Price Healthy Care Booster - You can see his feet just dangle
So the chair I decided that I wanted to get is called a Height Right Chair.  I liked the look of it because not only does it meet our needs to provide adequate seating for Joshua, but it also grows with him, as it can go from 6 months of age (Can be purchased with a high chair tray and infant insert) and last until adult, up to 110kg.  So basically, we should not need another chair for him.   There were two options for the Height Right Chair.  One is a Special Tomato Height Right Chair, which is basically marketed as a special needs chair.  And it also comes with a Special needs price tag.  The other option was the Keekaroo Height Right Chair.  Which is basically the exact same chair but it is marketed to the general public and is therefore cheaper.  So I chose to purchase the Keekaroo Height Right Chair.  The price of the chair is quite good really, the only downside for me is that this chair is not sold in Australia so I had to pay $140 to have it shipped here from the United States.  If it wasn't for the shipping price, it would be a bargain!  LOL. (oh and the shipping price is covered under the Better Start funding too, in case that was confusing).  The other good thing about the Keekaroo one is that it comes in two choices of wood stain and has a greater number of colour choices for the cushions than what is available with the Special Tomato Seat, which only has one wood colour and less cushion colours.  It can also be purchased with or without the comfort cushions, but I definitely chose to get the cushions.  The cushions are made of a material that is similar to a Bumbo for those that are familiar, but slightly squishier.    

Of course, the chair arrives flat packed and has to be put together, which is always fun (though it wasn't too bad) and then after configuring it in the right position for Joshua, it was ready to go!  In an ideal world, I would actually have him seated even higher, but you can see that my table has a silly bit of wood that hangs down below the table top, so I can't make him any higher than this or there would be no room for his legs...  ideally his elbows are supposed to be at table height, but what can I do...  (I mean other than buy a new table or cut a hole in this one...  LOL)

Joshua seated in his new Keekaroo Height Right Chair

Feet on the foot rest to improve stability
Working on Eating in his new chair.  It also has a waist belt to keep him secure.

Another plus, is that because I was able to choose a dark wood stain, it goes quite well with the rest of our furniture and doesn't look like an obnoxious piece of equipment :)

Just part of the furniture!  

Anyway, I think the chair is great, I really like it, and I am planning to buy another one for Amelie (with pink cushions of course!) and the high chair tray and infant cushion, for when she starts solids in a few months.  Of course, we have to pay for hers ourself, but it will be good to do away with ugly plastic strap on booster seats, and they will both have their special chairs for the table and she won't be left out :)

Friday, September 28, 2012

Hospital Appointment- 28 months

Today we had a routine checkup for Joshua with his Doctor at the Hospital.

Before every appointment, he gets weighed and measured by the nurses.

Today, for the first time, his height was done standing up instead of laying down using the device that babies get measured with :)  That is because today is the first time he could stand up well enough!  He was 87cm tall, which is just over the 20th Percentile, and he weighed about 11.8kg, which is just below the 15th Percentile.  Which is great.

Today, we had a student doctor along with our normal doctor, and we got to start the appointment with the student doctor.  The Student Doctor was actually a trained physiotherapist, so she did know stuff about stuff (Ha!) and have experience with children with Cerebral Palsy.  She did a full check up on him, checking his chest and ears and throat and all the rest, and she also took his head circumference.  She got 43.3cm.  I think at last measure, I got about 44.4cm.  I know my fellow Mum's of children with Microcephaly will be laughing at that, because we have it down to a fine art when it comes to positioning the tape measure to get the true maximum head circumference (Which is how it is supposed to be done) but health professionals often just slap it on and get a reading without particular care for trying to get the biggest possible measurement...  and hey...  every millimetre for our kids counts!!  LOL So yes, either way, his head is still small.

So the particularly great thing about this appointment was that Joshua was able to debut his solo walking to his Doctor.  His Doctor was of course, thrilled to see it.  He has told me many times that Joshua is doing so much better than expected and he said it again today.  That for the severity of the insult to his brain that Joshua suffered as a baby, he would never have imagined that he would be seeing him like this.  I told him "well there you go, when you see babies like that, don't doubt them!" Hah!  He says he although he doesn't see a lot of children like Joshua, Joshua is the first one he has ever seen "get better" over time, that every other child he has seen has either gotten worse or just stayed stable.  He asked me if there was anything in particular that we have done over the last 6 months or so that has contributed to Joshua's great gains and I said No, honestly, it is just him and the fact that he wants to do things.  That is the truth.  I know it would sound great to say it was due to a lot of hard work on my part, or that we'd found a magical therapy that has amazing results, but we haven't.  We've only ever done conventional therapies like Physiotherapy and Occupational Therapy and compared to a lot of parents, I think my focus on "therapy" is a lot less, this is all Joshua.  He woke up one day and decided he wanted to walk.  He walked with his walker for 6 months and then took his first independent steps when he felt like it.  He is doing great with his walking.  He still falls a lot, and still crawls as well, but he is doing a lot of walking around the house and I don't take his walker to day care anymore either.  We have been taking a break from day time AFOs since he started walking independently but I think we need to get back into using them, at least on the right foot, as it does do a lot of silly things still.  The left leg is not too bad.

So they still think that Joshua is a Level 3 on the Gross Motor Function Classification System (GMFCS).  I am not sure how much I have talked about that in the past, it is basically a grading system that grades the severity of the impact of a person's Cerebral Palsy.  1 being Mild and 5 being Severe.  So they are still grading Joshua as Moderate.  I said now that he is starting to walk on his own do you think he is moving more towards a level 2, but she wouldn't say that, but she did say that it is not fixed.  Honestly, there is not really any doubt in my mind that he will end up a lesser level.  I think he will end up at most a 2.  This is the levels for 2-4 year olds:

Sunday, August 26, 2012

Joshua's Communication Folder

So, for some time now, I have been meaning to getting around to printing out some photos I had taken of different parts of Joshua's day, so that we could use them to help facilitate communication.  I had taken some photos, and even imported them into an ipad app that involves choosing the correct picture when asked, but I hadn't yet gotten around to printing anything.

Then, a fellow HIE/CP Mother kindly told me about an app she had downloaded to make picture cards.  Interestingly enough, the App is called Picture Card Maker.  Hehehe!  There is a free version, and also the "Pro" version, which cost me $6.95.  You can make your cards just fine on the free version, but you need the full version if you want to be able to customise the size of your cards.  This is essentially what is known as PECS (Picture Exchange Communication System) and PECS cards are usually smaller than the ones I have chosen to make.  I made mine 7cm by 7cm for easier handling for Joshua.  The idea is that the cards can be selected and then placed on a "sentence" strip to convey what the person wants to say.  A 'real' PECS contains cards that are "sentence starters" things like "I want" "I don't want" and then other picture cards can be chosen to complete the sentence.  At this stage, that is still a bit too advanced for Joshua, so right now I have done pictures only.

I found a tutorial online for how to make a nice communication folder, but this wasn't going to work for me because I chose to make my cards larger than the standard PECS cards, but if you are planning to make small cards, check this out as it might be really useful - Make a PECS Book.

So, instead I set about making a more basic version for us to start with.  By the way, I am still very optimistic about Joshua's speech, he makes improvements all the time, his receptive language has made noticeable leaps lately, and he is always adding to his expressive language too.  Right now, he has about 20-30 words that he can say, some consistently, some not, and I am certain that he will continue to add to that, but for right now, his speech is still significantly less than that of a typical child his age and hopefully providing an alternative form of communication might help to alleviate some of his frustration.

So the first step in creating a Communication folder, is of course, going shopping for the needed supplies.  Joshua took great delight in helping with that!

Pushing the Child Size Trolley at Office Works
So the things that we needed were:  An A4 folder, Some paper, laminating sheets, a laminator, a hole punch, a labelling machine, and some self adhesive velcro strips.  I had most of this already, we just needed to buy a folder, the velcro, and some black paper.  I chose black to be the colour for the background of the pages for the contrast, but I was thinking later that maybe it would be good to use different colours for different sections so you can find them easily.  So if you are making one, you might benefit from my after thought :)  And of course, you can do things slightly differently with what you have already.  Oh and by the way...  the most expensive part of this was the velcro...  So if you are planning to make one and have the luxury of time and patience, then I would recommend trying to source cheaper velcro!!!  If I make another folder, then I will look for cheaper velcro next time :)

I created all of the picture cards using the ipad app, and printed them out onto photo paper.  Cut them out, laminated them all, and then cut them out again.  I was a little disappointed in the print quality, I think it was because I was using cheap ink in my printer and not the genuine Canon cartridges, so you get that I suppose...  and they will do the job still.

I gave Joshua the choice between a green or blue folder and he chose a Green one.  Naturally, the first step to any good folder is stickers....

Joshua's name and Car stickers
Then I had to laminate my black paper, and hole punch them so they could go into the folder like so:

Then, each page needed two strips of velcro on it.  I also labelled each page using my label machine with a category.

This is the rough "Hook" side of the velcro, and the category label at the top of the page
The Categories I did are:
Food and Drink
Personal Care
Toys and Activities
TV Shows

On the front of the folder, I also placed a strip of hook velcro, to be our 'sentence strip' if required.

The last step of course, is to cut small pieces of the soft "loop" velcro and stick it to the back of the picture cards.  And then stick them all into the folder.  Here are a few examples of my finished pages.

Toys and Activities
Now, we can take the cards on and off their pages and stick them onto the front of the folder if we want to.  So we might take out the Picture of Joshua, a picture of the car, and a picture of his day care to say that Joshua is going in the car to day care.  And that is basically the gist of it, so now all I have to do is start working with Joshua and the folder.  He loves looking at all the pictures, so the next step is to start incorporating them as a mode of communication, encouraging him to use them to tell us what he wants.

In other news, Joshua is doing really well, progressing nicely in all areas, but the most exciting thing of the past few weeks is that Joshua has started to take independent steps.  He started going for it with such gusto that I didn't think it would be long before he was really walking all around the place.  But I think that was wrong...  it has been two weeks now and most of the time, he isn't taking more than 2 or 3 steps at a time before dropping to the ground even though I have seen him do more.  So, that is that, slow and steady he will get there, but we know for sure (not that I ever had any doubt) that Joshua is going to be a walking boy.

Here is a video of Joshua, taking some of his first steps at 26.75 months old :)

Sunday, July 1, 2012

Home Birth after HIE

On 29th June, 2012, at 12:12am, we welcomed into the world Joshua's little sister, Amelie Jade Shepherd.  She was born at home in water, after less than 4 hours of labour.

Amelie Jade Shepherd
Born 29th June, 2012
12:12 am
4.195kg (9lbs 4oz)
51 cm (20.5 inches)
Head Circumference 38cm

If you haven't already read it, it would probably be best to start with my previous post about Birth Choices, where I talked about my decision to plan another Home Birth.

Unlike most HIE parents, I can honestly say that I worried very little about a re-occurance.  I recognised the situation with Joshua for what it was, a rare and random event that was bad luck, and I had no doubt that it would not happen again.  When I imagined Amelie's birth in my head while I was pregnant, I imagined everything going well.  The main point of difference for me, was that when I was pregnant with Joshua I was 100% confident that everything would be fine, I knew sometimes people could have bad outcomes but I never imagined that could happen to me.  After having Joshua, I knew that it could.  People would ask me "Are you having a home birth?" and I couldn't reply yes, because honestly, I didn't know if I was going to have a home birth, even though that was the plan.  I knew from experience that the plan can change, even at the last minute!

Before we could even get to the birth, I had to get through the pregnancy with everything going well.  This was a rather stressful point for me, because as it was with Joshua, my blood pressure was on the high side again this pregnancy.  This was potentially an obstacle to having my home birth, and resulted in me having weekly appointments with my midwife from 32 weeks into my pregnancy, including blood work every week to monitor for pre-eclampsia, and attending several appointments with the hospital to make sure all was ok.  I had no desire to have any additional monitoring during my pregnancy as a result of Joshua's HIE, but in the end I did agree to an extra ultrasound at 36 weeks to check on the growth of the baby and the blood flow through the cord.  Everything looked well at that scan.  But every week that I remained pregnant was another week that I needed my blood pressure to behave for.  Thankfully, although it was on the high side, it stayed pretty stable and never got to the "too high" point.  My blood work also showed no signs of pre-eclampsia.  What it did start showing though, was that my platelet levels were dropping.  Something that also had to remain above a certain level in order to be able to have a home birth.  So that was another worry for me.  All of these things are very stressful because honestly, the last thing that I wanted to hear was that I had to go to the hospital to have the baby.  I just wanted the baby to be born so that I no longer had to worry about any of these things, and once I reached 37 weeks, I wished every day that this baby would come out!!

In the weeks prior to my due date, I had a lot of signs that things were starting to happen, which also started to get a bit draining.  I was having quite a bit of pains, most days around dinner time I was having contractions for a few hours that would then fizzle out, for weeks I was losing globs of mucous, lots of signs that things were heading in the right direction, and yet, no baby.  With Joshua, I woke up one morning to a "bloody show" and was in labour that night...  so Imagine my frustration when I had passed my due date and had three days of having a bloody show and not going into labour.  So there I was, at 40w6d pregnant with no idea when this baby might decide to actually come.  I was quite amused at the thought I was about to hit 41 weeks pregnant, considering that most parents choose to have their post HIE babies early, either by C-section or induction, under the "better out than in" mentality...  and I wondered if maybe I was a wee bit crazy after all.  I was also really beginning to seriously consider a stretch and sweep to try and get things moving, even though it was not something I really wanted to do.  So, as I was sitting there pondering all of this, I was sitting on my ball and chatting on Facebook, as you do.  Miss Amelie had not engaged before labour, though I felt that she was going in and out of my pelvis all the time, she didn't ever stay there.  This can be pretty normal for a second baby but also seemed a bit annoying to me, when I really just wanted her down (and out).  So I was sitting on the ball while I was on the computer doing circles with my hips.  This is supposed to help jiggle the baby into the pelvis.  Maybe it worked.  Because one minute I was replying to someone who had said "Karissa, what are you doing on Facebook, you should be having a baby!" and I replied "Tell me about it!" still feeling like this show was NEVER going to get on the road, when all of a sudden, I was in pain.  A lot of pain.  I got up straight away because this was not "Keep Face Booking" kind of pain (as it was when I first went into labour with Joshua!)  I decided to go and have a warm bath and see what that did (and took my phone into the bath to text my midwife!).  Nothing changed after having a bath, and the pains were so bad that I had to stop and hold onto something and breath through them each time.  I had planned to pack a "just in case" hospital bag once I went into labour thinking I would have plenty of time to do so while in early labour, but I honestly couldn't do anything at this point.  With Joshua I walked around a lot, used my heat pack and we didn't start filling my pool until about 5 hours into my labour.  This time, I wanted the Pool ready and I wanted it ready now.  I was in it before it was even full, and didn't leave it until she was born.  My brand new heat pack I got for this labour is still in its packet!

The Birth Pool getting filled up
My "bed" in the lounge room (a blow up mattress) 
In the pool while it was filling up
Checking the Baby's heart rate.  My Two Great midwives who were also there for Joshua's Birth!
It was really quite an amazing experience, especially after Joshua's birth.  Although most of my labour with him was spent at home, his actual birth was at the hospital, and due to the circumstances, he was born via vacuum extraction and I was given an episiotomy.  I really didn't "feel" him be born and it left me feeling quite detached afterwards.  Like one minute I was pregnant and the next minute I wasn't, but wasn't really sure how I got from one point to the other.
With Amelie, I felt everything, and just trusted my body to bring her out.  One minute I was having contractions, and then next thing I know, I am pushing.  I did think for a second "Should I be pushing now?!" but just went completely with what my body was telling me.  Before I knew it, I was pushing her out.  I was on my hands and knees, and when she came out behind me, my midwife pushed her through under my legs and I pulled her up out of the water.  

She was quite floppy when she came out, and they did put the oxygen on her for a little bit to start with (while she was in my arms in the pool) but it didn't take too long for her to start pinking up and have a bit of a cry.  I did it!  After everything, I had my baby, at home, and she was perfect!

Holding Amelie in the pool after she was born

Joshua slept through the labour and woke up right as she was born.  He was very emotional about coming out and finding me in a pool in the middle of the house holding a baby, with the midwives there!  He took one look at things and started crying.

Rod and the teary Joshua who had just woken up to find a baby in the house
I passed Amelie out of the pool while I delivered the placenta, and then got out of the pool and went and laid down on the bed we had set up.  I put Amelie on my chest and let her do the "breast crawl" to initiate our first breast feed.  This is where the baby is allowed to make their own way to the breast and latch on by themselves.  I had wanted to try this with Joshua but never got to, given the situation, so it was great to get the chance to try it out.

Joshua checking things out after Amelie had made her way to the breast
Amelie was weighed and measured and it revealed that she was indeed a good size baby.  700 grams heavier than Joshua had been!  And her head was 3cm bigger than his was at birth.  I joked saying that her head was already almost as big as his now!  It won't take long and it really will be!

On the scales
As I had the episiotomy with Joshua's birth, I ended up tearing along that scar when I had Amelie.  It is possible to repair minor tearing at home, but mine was considered too extensive to stitch at home and better to go into hospital to have the sutures done.  So that was a bit of a dampener, to have had my home birth but then still have to go into the hospital anyway.  We called my Dad and asked him to come and stay with Joshua, and then the rest of us headed into the hospital.  As I was getting into the car to go to the hospital, I started gushing some more blood.  I had a towel with me to sit on to soak things up (as well as wearing undies and a pad) but it was getting quite soaked.  We got to the hospital and my midwife wheeled me up to the delivery suite where the Doctor took a look at things.  If it was bad enough, they would want to do the suturing in theatre, but thankfully mine was ok and they were happy to do the stitches there in the delivery suite.  The Doctor was lovely and gentle compared to the Doctor I had at Joshua's birth and the whole experience of stitches (which I considered to be the worst part last time, pain wise!) was totally not that bad.  I was dreading it based on my past experience, but it turned out to be much better.  Unfortunately though, I was still losing a fair amount of blood and ended up passing out.  I've never fainted before, so that was quite an interesting experience and resulted in the room suddenly being full of people as a team was sent from the ICU.  Anyway, obviously I woke up and was pretty ok, but was then put on IV fluids and given some medications to help control the bleeding.  They estimated that I lost about 800mls of blood altogether.

So, we had a bit of a bump in the road there, and I stayed at the hospital until later that afternoon.  It was nothing like Joshua's birth though.  Although I ended up at the hospital, My baby was completely healthy, the problem was with me, and I was laying there with my baby on my chest and all was still right with the world.  It doesn't take away from the overall birth experience for me at all, because I did it, I stuck by what I wanted all along and even though it didn't seem like an easy road to stand up for what I wanted, in the end I got it.  A healthy baby, born at home, where I wanted to be!

Amelie is doing great, though I definitely feel a lot worse physically this time around, I am getting there too!  And Joshua is slowly warming up to his new role of Big Brother.

My little chubby girl while we were at the hospital
Joshua has kisses for his sister
A truck should make her happy!

Testing out some accessories!


Monday, June 25, 2012

No Botox for Joshua!!

Three months ago, we first saw the visiting Rehabilitation Team from the Adelaide Women's and Children's Hospital, who specialise in seeing children with Cerebral Palsy.  At that time, they recommended Botox injections to reduce Joshua's spasticity (high muscle tone).  They do not do the Botox here until the child is 2 years old, so he was booked into the clinic this week since he turned 2 last month he can now have the botox.

So the plan was that today he was to see the Rehab Team again, and the Botox would get done on Wednesday if we were going ahead with it.  This would have involved putting him under general anaesthesia and injecting his muscles with the toxin.  Needless to say, I was anxious about the whole thing and the timing was not the greatest being that I am pregnant and my due date was last week, so either way you look at it, we would have been dealing with this and a newborn, or dealing with this and me being heavily pregnant with the potential to go into labour at any minute.  Neither option is too appealing really.

So we took him back to see the team today and we had an extremely positive appointment.  They were very happy to see the progress that Joshua has made over the last three months, and in fact, his muscle tone has improved so much since they last saw him, that they are no longer recommending the Botox treatment at this time.  This is really a relief to me right now!  The Doctor basically said that even though he does have high tone, he doesn't think that the tone itself is going to be his biggest obstacle.  That his challenges are more to do with motor planning than with muscle tone.  By that he means, the way he plans out movements in his brain...  an obvious example is the fact that Joshua crawls with a bunny hop crawl rather than the normal reciprocal kind of crawl.  In other words, his brain is planning out weird ways of doing things rather than what we would consider the normal or correct way of doing it, and he sees that as being a bigger problem than the actual muscle tone.
He also said that sometimes, what are initially seen as being big obstacles (In our case, the high tone, the marked preference for using only one side of his body) can decrease over time as the child gets older and the fact that Joshua is moving well, using both hands (even though they are not equal) and getting better with those things at 2 years old is extremely positive.  What can sometimes happen is that as the child's bones grow, the muscles have trouble growing with them because they are too tight, and in that situation, we may consider botox at some time in the future but not right now.  He thinks his AFOs are enough to take care of the tone in his ankles, and his right heel not touching the floor all the time is not a huge issue.  They said it is the case because the knee is tighter but that hopefully, the longer he is on his feet and walking, the more that will improve.

Basically, they are really happy with Joshua's progress and Joshua was showing off in his walker and doing a bit of standing on his own, the Doctor kind of said that he will need his walker for a bit but who knows what he will do from there.  And "Is he going to walk in the next year, well we don't know, we just have to wait and see" and I was like Um yeah he definitely is.  The physio from Adelaide said he thought he was pretty close to being able to take independent steps, and that is what I think too!  And when you see him showing off with his walker it makes you think it is more a confidence thing...  the walker gives him confidence, he just needs to get brave enough to try on his own.

So overall a super positive appointment, and they have said they don't want to see him back at the visiting clinic until early next year.  :)

Friday, June 1, 2012

2 Years Old - Where we are at

This is a little bit late, but I thought I would wait and do it all at once.

Joshua turned 2 years old on May 20.  I woke up on the morning of his birthday and I could hear him playing outside with his Daddy, and I updated my Facebook status while I was still in bed.  I shed a little tear then, but it wasn't really sad tears.  More just emotional, thinking about how far he has come and how he is not a baby anymore.  They were short lived though, and I didn't dwell on any of the negatives from the past.

Joshua is really continuing to do amazingly well.  We have our challenges, but in many ways, Joshua is just like any other 2 year old boy.

He loves Cars.  In fact, he loves anything transport related.  He would be happy pushing his toy cars around all day long.

He loves playing outside and riding his bike.

He dances along to music and has favourite TV shows.  He loves Giggle and Hoot, Thomas the Tank Engine, Roary the Racing Car, Chuggington, Driver Dan's Story Train, and Play School.  

He throws tantrums when he doesn't get his own way.

He gets excited when his Dad comes home from work and loves to play on the floor and climb all over him.

He sleeps with his two favourite bed time friends, his "Snuggles" (A blankie with a Monkey head on it) and Hoot the Owl that plays a lullaby.

He loves swimming and he is great at it.

He likes other kids and he goes to Day Care two days a week.

When Joshua was a newborn and in intensive care, his Doctor told me that no matter what happened from that point in time, Joshua would be followed up until he was 2 years old.  He said to me that he had just seen a little girl for her two year old appointment, that she had a similar start to life to Joshua and that he'd just discharged her from the outpatient clinic as she was doing great, 100% on track with all her milestones.  I appreciate that he told me that, it is nice to have hope especially when all around you the news is so bleak, and the reality is that the possible outcomes are many and varied.

Well today, we had Joshua's 2 year old appointment with that very same Doctor.  We don't have that same kind of "happy ending", where Joshua gets discharged from his follow ups because he is 100% where he should be.  Because he is not.  He is however, continuing to make steady and pleasing progress.  The appointment wasn't anything much, really just checking in with his Doctor so he can see how he is doing.  I decided to let Joshua walk in there in his walker, and the nurses just loved seeing him walking.  One of the nurses said that it made her day.  His Doctor was also impressed and said it was great to see him getting around so well.  His Doctor filled out the form for me to be able to get a Disabled Parking Permit.  That will really make my life easier when taking Joshua out with his walker.  I feel a bit guilty about it, like we shouldn't have one, and I won't use it if I am just using the stroller or something, because in that situation it is really no different to any other mother putting a 2 year old in a stroller.  But when he uses his walker, it is really hard work when I have to park so far away from where we are going.  I like taking him out to do activities and things, and most parents can put their toddler into a stroller, walk to where they are going, and then let them out so they can walk and run and play.  If I take Joshua somewhere in the stroller, it means he cannot walk when we get where we are going, and if I cannot park close by, it is a marathon effort to get him and his walker to where we want to go.  One day I took him to the library and the only spare car park was right at the end (apart from the disabled parking spaces) so I parked at the end, and then my heavily pregnant self began to wrestle Joshua and his walker across the car park to the entrance.  Meanwhile, an older couple pulled up into the disabled parking space (they had a permit) and out they got from their car and walked in.  Neither of them appeared to have a lot of difficultly walking, they just got out of the car and in they went, and I couldn't help but think in that sort of situation that I really could use the disabled parking spaces more than them, cos I am pretty sure it was much harder for me and and Joshua to get in there than it was for them.  So, I will put the paper work in now that his Doctor has filled it out, and hopefully that will make things a bit easier for us when we go out with the walker.  His Doctor said yet again, that he feels Joshua's biggest problem is going to be with communication.  Maybe I am not worrying enough about this, because I see him making progress and just assume that he will continue to do so and it will all be fine.  He has pretty much been saying it to me for a year now, and every time I take him back he is better than he was the time before but he still says it.  Joshua's physio has also suggested that I take Joshua to a private Speech Therapist because we are really not getting a great deal of support in terms of speech from our Early Intervention Service.  Technically, we don't see a speech therapist, his Occupational Therapist is also supposed to work on speech with him and she does, but I don't totally agree with the methods they use.  Well theoretically I do, but in practice, it honestly just seems too much to me.  For instance, they are big on labelling...  giving labels to everything that the child is seeing and doing to help expand their language.  Good idea.  But I just feel that they go on TOO much.  For example, one day, we arrived at Therapy and were waiting in the waiting area for our therapist.  Another lady walked through the doors and Joshua got upset, presumably because she went through the door and not him.  I said to him "Oh you are sad because the door opened and you didn't get to go in" (so, I labelled it for him) and then his therapist appears and no joke, the whole walk to the therapy room she is saying over and over again "You are sad but you are still walking"  on repeat.  I am thinking seriously, can we just move on, yes he was sad, but he doesn't need to stay sad and dwell on it, lets distract him from that little incident and go be happy and play with toys.  I feel like my strategies are more in line with speaking to him like a real person, than with speaking to him like...  I don't even know what.  Because if he is playing with a car, I am quite happy to say "Yeah, you got the car, drive the car" but I am not so happy to sit their repeating over and over again, "Car, thats right, you are looking at the car, you are holding the car, Joshua is driving the car, yeah you are looking at the car" like a running commentary of every single move he makes.  I don't think he needs that and its not natural.  Every single word that he has learned has not been because of a therapist, it has been because of me and the way I do things with him so obviously it works ok for him.  And then there is the part where if I happen to say something during the session that the therapist thinks is good, she will praise me for saying it and it just feels so patronising.  I am curious to see what approach a different speech therapist would use so I may look into it over the next few months.  His Physio doesn't do this stuff.  I think she is supposed to, because it all comes down to the DIR/Floor time Therapy model our Early intervention is supposed to use, but she is just a lot more natural.
Anyway, back to the Doctor's appointment...  it was fairly short and nothing much to report from it, the main gist of the appointment was that Joshua's Doctor said he is certainly doing much better than they would have expected from his scans.  Exceeding expectations.  My response to the Doctor saying that was "Yep, Neuroplasticity!".  He smiled and looked a bit surprised by my response.  Neuroplasticity basically refers to the brains ability to re-wire itself around the damaged areas, and is the reason why it is virtually impossible for a Doctor to look at a child's MRI and predict their future, because nobody really knows how that child's brain is going to go on and rewire itself around the damage.  So, Joshua's brain hasn't done a perfect job of rewiring itself, but its done a pretty good job, as the impact of his brain damage is not as severe as they would have expected.  One good moment of the appointment was when Joshua decided to climb up onto the Doctor's brief case which was beside the desk, and then pull up to a stand on top of the brief case using the desk, and start banging all the keys on his computer keyboard.  It was just a little reminder for the Doctor not to underestimate him LOL.  He said "Oh I can see you are one that we need to keep an eye on, getting into things!"            

At 2 years old, Joshua does not yet walk.  He got a walker when he was 21 months and does wonderfully with it.  It took him a month to learn how to steer it, and now, three months later, he can practically run around in it if he wants to.  He doesn't yet get himself up into the walker to walk around, only when I put him into it (though he has all the skills to do it himself, he just doesn't yet) but he does so well in it, and shows his head strong nature by running off in the opposite direction to where I am wanting him to go!

He still crawls non-reciprocally, or bunny hops around the place.  He is cruising the furniture much more now, and is really starting to test out his legs by letting go and standing independently for short periods (up to about 30 seconds) He is now quite stable when you walk with him holding only one hand.  It is really just a matter of time before he starts to take his own independent steps.  (I have no idea how MUCH time, but he is putting all the pieces of the puzzle together and it will certainly come, possibly sooner than later!)

He is now wearing hinged AFO's, which support his feet and ankles in the optimal position for standing and walking, while still moving to allow for some of the natural up and down movement of the foot.  (His first pair were fixed AFOs, which did not allow for any movement of the ankle)

In terms of fine motor skills, he is learning to feed himself with a spoon or fork.  He is very good at the hand to mouth action, he mainly struggles with the scooping aspect of things.  In the true spirit of a 2 year old though, he often insists on doing things himself, even if he can't *actually* do it himself.  Which is both good and bad at times!  He has also started to understand some basic things like trying to stack large wooden blocks on top of each other to make a tower, and with other building sets (such as Duplo) you can see him trying to work out how to put pieces together.  Even though he may not successfully be able to do things, you can see his brain understands what is supposed to happen even if his body can't make it work.  The other day during a physio session, we witnessed Joshua appear to sort colours.  He intentionally placed an orange ball down on top of the orange hole, and then when given other colours, he correctly placed them most of the time.

Language wise, his receptive language is improving all the time, which is evidenced by his ability to follow instructions.  For example, basic requests like "Give Mummy your Bottle" he is starting to comply with.  And even if he doesn't actually follow the instruction, I can usually tell whether or not he understands what I am saying, for example if I ask him to get me something and he looks over at the object, then I have a fair idea that he knows what I am talking about, even if he doesn't actually go and get it for me.  Same as when I am asking him to choose a certain object when given options (for example, with flash cards, apps on the iPad etc)  If I say "Where is the Apple?" if I see him look at the picture of the apple, it is fair to say that he knew what I meant, even if he then decides to grab hold of a different picture. Not quite as satisfying as if he was to actually do it properly, but still encouraging.
His expressive language is also making slow progress.  He says a few words now, including Car (which he uses for all modes of transport and anything with wheels including things like strollers, vacuum cleaners etc), He says Brrrrrrrv, being the noise for a car or other transport, He says Ra Ra, which is his word for all animals and also the sound that all animals make.  He calls his Monkey Snuggles Blankie Ra Ra, and also calls Hoot the Owl Ra Ra, he calls our cats Ra Ra, and all other animals, Ra Ra.  He says Door and Wall (which he has learnt from coming into the toilet with me!  LOL)  And he says Star and Dada or Dad, and Bye bye.  He also says Ball.  He also likes to say "Whoa" as a bit of an exclamation.  And his word for everything he doesn't have a word for is "Da".  He is not totally consistent with all of these, and I think as his Mum, I understand his attempts at verbal communication better than anyone else (which is pretty normal really) but he is certainly trying to express himself with the limited number of words he has.  I consider him to be very expressive and communicative, even without having the typical number of words for a child his age.  Interestingly, he also puts two words together, despite having a limited vocabulary.  For example he says "Bye bye Car".  The girls at Day Care have commented to me about him doing that also.    

As always, I am pleased and grateful for the progress that he continues to make.  June is going to be a pretty big month for Joshua, as in the next few weeks, he will become a big brother.  Nothing like a new sibling to turn your little world upside down.  He is also going to be getting his Botox on the 25th June.  his Doctor has never seen this done before and has asked me to get the nurses to call him to come and see it when it happens (so long as he is not busy doing something more important) as he is really keen to observe it, and wants to see Joshua again a few weeks after his Botox so he can see what kind of difference it makes for him.

Joshua's 2 year Stats are:

Weight:  11kgs (24lbs 3oz)  (8.5%)

Height:  85.2cm  (33.5 inches)  (24.7%)

Head Circumference:  They don't measure this anymore once they turn 2, which is crap because I don't know where my tape measure is.  LOL  I will have to find it because I am really curious to know what it is now.  I know it is still well below where it should be, but want to know how much growth it has had over the last 4 months since it was last measured.  I am sure it is still on the 0% though!

It appears that he has jumped up the percentiles since his last weight and height check.  I am pretty sure his weight was about 3-5% last time and his height around 15%, so he is obviously growing....  I really need to check his head.

If you haven't already seen it on Facebook, I made another video, this time for Joshua's second year.  You can watch it here :)

Joshua's 2 Year Old Video

Also, if you have the time and haven't already seen it, I would also like to bring your attention to another great video that was made to promote awareness of Cerebral Palsy.  It was made by Rachel, one of my fellow HIE parents, her son Cohen is also a May 2010 Baby just like Joshua who also suffered from a HIE event and now has Cerebral Palsy.  Cohen is the main star of this video and he is just gorgeous, but Joshua has a few second of fame in it too :)

Cerebral Palsy - What I want you to know!


Friday, April 27, 2012

Occupational Therapy Session 27th April 2012

This term Joshua is getting weekly Physiotherapy, and fortnightly Occupational Therapy.  Today we had a session with his Occupational Therapist and I decided to take a few photos.

Crawling over uneven surfaces helps to encourage reciprocal movement of the arms and legs.  (Joshua usually crawls in a 'bunny hop' style, moving both arms together and both legs together, rather than alternating his arms and legs like in a traditional crawl)
Climbing the ladder to the slide also encourages reciprocal movement.  Joshua can't do this without assistance, but here his OT Andy is trying to get his interest by putting the Doll up the ladder.  
Joshua having a look in the container of toys...  these toys were oral sensory toys for mouthing, and whistles for blowing to work on oral motor skills  
Happy Boy sitting on a wedge on a platform swing.  This helps to work on core strength, as he needs to work his tummy muscles to stay upright while the swing is moved.  
Here he was using this rod to push and pull himself back and forth
Trying to Multi-task and blow a whistle as well...  You can see the more he has going on the sloppier he sits, because its hard work to keep everything going together. Blowing the whistle helps to work on muscles needed for speech.   
Joshua sitting on the 'car'.  This also helps with core strength as the movement of the car makes him unstable and he has to work to remain upright.  
Another activity on the car..  Using his arms to pull himself around.  Good for upper body strength and encouraging reciprocal arm movement.  
Go Cheeky boy!
Crawling through the tunnel and playing peekaboo is fun too!
Some more crawling, look at that big crocodile ready to gobble up any naughty boys!  
Pushing Puppy around on the car