Saturday, February 19, 2011

Having a hard day

I'm feeling a bit emotional these last few days.  Joshua is 9 months old tomorrow, and I am starting to think a lot about his birthday.  The up and coming birthday mostly, and what we are going to do to celebrate that, but in thinking about his first birthday, it also brings me back to his actual BIRTH day.  The best and worst day of my life.  I know I want his birthday to be special, to celebrate Joshua and the miracle that he is, and how far he has come from being that baby in the NICU, but at the same time, his birthday is the one year anniversary of a time that was filled with a lot of stress, worry, grief and uncertainty.  All of those feelings are still around in varying degrees.
Several of the other HIE parents have said that they allow themselves the day before their child's birthday to be sad, and mourn for the last day that their baby was "perfect" and then they pick themselves up, dust themselves off and use their child's birthday to celebrate all the wonderful things about their life that is.   I am not sure how I am going to go.  I cry just thinking about it.
I think now, at 9 months old, the gap between Joshua and other children his age is becoming more and more apparent, and his struggle is becoming more and more evident.  Last week, for the first time, I cried while watching him try and do something.  He wants to do things so badly, and it is so hard for him.  He is getting really frustrated, and he is starting to cry a lot because he can't do things.  This particular day, he was so angry he started banging his head on the floor.  Last week at Baby group, Joshua didn't do anything.  He cried every time the physio came near him, and spent most of the time laying on a mat with his dummy and snuggles.  It is hard for my heart to take.
I've said it before, and I will say it again.  It is not fair.  But as I laid in bed this morning with Joshua and had a cry, he looked back at me with his big toothy grin.  He is truly amazing.        

Monday, February 7, 2011

What's in a name?

Like many young girls, I used to day dream about what I would name my future children.  I remember my best friend Holly in our early high school years used to pride herself on her made up names.  She loved writing stories in English class and giving the characters in them crazy names.  When it came time to name her own children, she didn't give them a crazy made up name but she did still go for ones that were pretty unique.  We used to write our baby name lists, boys and girls, names we liked for our future babies with husbands we hadn't yet met.  (They'd have been way too old for us if we met them back then anyway!  Hahaha!)  Anyway, Joshua was always on my list.  I just liked it.  When I was pregnant, I made a list of names I liked and it wasn't nearly as fun as it was back in the days, because naming your child is serious business.  They are stuck with it for the rest of their life!  Not only that, but apparently Rod didn't like anything I did and I didn't like anything he did!  Fortunately, finding out the gender via ultrasound meant we were able to narrow down our options.  Although I was actually hoping for a girl, it was a good thing he was a boy because we had even more trouble agreeing on a girls name!
My feeling all along was that he was a boy though.  People have lots of things to say about what dreams mean in relation to a pregnancy, but I had a dream a few days before I got my positive pregnancy test with Joshua.  I dreamt that I had given birth to a baby boy, and in the dream he was freakishly tiny and his neck was the size of my finger.  He was in the hospital because clearly he wasn't normal and I was trying to breast feed him.  Yes, this is a very weird dream, but the fact that the baby was a boy in that dream led me to believe that I was having a boy.  Looking back on that dream, you have to wonder if it was some kind of premonition of the future - not only did I have a baby boy but there was something wrong with him.  (Although he definitely wasn't small and freaky looking!  LOL)
Anyway, I am getting off topic here.
I chose the name Joshua simply because I liked it.  It was set in stone from the time I knew I was having a boy at 18 and a half weeks pregnant.  His name was on his bedroom door before he was even born.
Joshua is a biblical name and it means God is Salvation.  While I was pregnant, this didn't really mean too much to me, but after he was born, I couldn't help but feel that this was the perfect name for him.
I admit that while I believe in God, I am not overly religious in that I don't go to church or do things to actively worship.  Sometimes I have a private word with God and I say grace before meals when my Nanna is around (LOL) but that is that.  But after Joshua was born, I confess to praying to God every single night that he would let my baby be ok.  And I know for certain that I wasn't the only one.  Every time I gave my Dad an update on Joshua's condition, he would tell me he was praying and to make sure I was too, and many friends and family were also offering their prayers.  Some people even said they would put him on their church's prayer list.  While he was in intensive care, a lady and a little girl came around giving teddy bears to all of the babies in the Special Care Nursery.  They were from a church and they told me they would pray for my baby too.  I would like to think that they did.
Some people would say "If God is real, then why would he do something like this?" but I don't think that way at all.  I think God was listening to everybody who was asking for Joshua to be alright.

People say "God works in mysterious ways".  That "God doesn't make mistakes".  For some people, a traumatic life event causes them to question their faith, but for me, it has cemented it.  I thank God every day that I get to wake up to that adorable grin.

On another side note:  Holly and I used to enjoy going to cemeteries.  They intrigue me.  Seeing the graves of old people doesn't make me sad.  Of course they left behind people who missed them, but this is the circle of life and they had a good innings.  What really gets me, are the graves of children and especially babies.  I look at them and want to know what happened, why their lives were over so quickly.  On our recently holiday we were in Cowra in NSW.  They have a Japanese War Cemetery there, and it sits right beside a regular cemetery.  So while Rod was looking at the war stuff, off I wandered, with Joshua in the sling, looking at all the graves.  Most of them were not recent, they were 40, 50, 60 years old.  Babies who lived just a couple of hours, or a couple of days.  I looked at them with tears in my eyes because I have no doubt at all that if my Joshua was born all those years ago then he too would be buried in the ground.  Hooray for modern medicine!  In the 2008/2009 tax year, I paid more in tax than I could ever dream of earning now.  And at the time, I wasn't impressed.  But now, I don't mind at all because I know my baby has benefited from those tax payer dollars!  Blessed we are to live in a country with a great public health system :)    

Sunday, February 6, 2011

Homemade "Therapy"

One of the most important things a parent can do when they have a child who is "developmentally challenged" is to come up with creative ways to help their child gain the skills they need.  Of course, there are many over priced specialty items available to help children with special needs, such as the corner chair I have posted about previously, and some of these things are undeniably necessary for some children.  At this point in time though, with Joshua being as little as he is, we are able to use many things that we already have around the house to assist us in our therapy goals.

One of our major goals is for Joshua to sit unassisted, and we are making good progress.  Initially, for him to sit, I had to provide hip support and continue to maintain that throughout the session.  We are getting to the point now, where I am able to provide hip support after initially placing him into a seated position, and then withdraw it after a minute or so, leaving him sitting unassisted.  His posture is not 100%, but he is getting there.  One of the main challenges that I face with Joshua and independent sitting is the fact that he is a very "oral" kid.  He wants to lick and mouth everything.  If I place a toy on the floor in front of him, he simply leans down to the floor so that he is folded in half and able to suck on the toy.  If I don't give him a toy, then he does this with his foot!  I needed to do something to position an activity directly in front of him rather than on the floor to encourage him to keep his back up and straight while playing.  I tried using a shelf that I could place over his legs and use it as a table for toys.  This didn't work for us.  It caused Joshua to extend backwards away from it.  So....  enter the "Elmo Sit me up" and the "Fisher Price Brilliant Basics Activity Walker. "  With the walker set in the "Busy baby" mode for floor play, I stuffed Elmo's head through the handle (Sorry Elmo!) and created the perfect vertical activity centre to keep Joshua's attention focussed in front of him, allowing him to concentrate more on sitting and less on licking the floor.  After I position him, and withdraw my hands, I place a feeding pillow behind him.  It provides him with no support in terms of sitting, but it does kind of fool him into thinking I am still right there, and it offers a cushioned surface for him to land on when he inevitably topples over.  He can sit like this for about a minute now.

Joshua sitting unassisted while playing with the toys on the activity walker

Looking a little bit less than impressed about it!

Another one of our major goals is to encourage weight bearing on his arms.  In a typically developing child, this usually naturally happens during tummy time with little effort required on the part of the parents.  They push up on arms while using the other to reach for a toy, and eventually they push up on both arms and begin to move into a hands and knees position for crawling.  For Joshua, his high muscle tone means he naturally prefers to keep his arms in a flexed position and he resists bearing weight on his hands.  If you try to place his hands on the floor, his typical response is to pull them up away from the floor.  We have to make a conscious effort to get Joshua to do this.  It is important.  Firstly, Joshua is lacking what some people call a "parachute" reflex.  This is usually evident from about 6 months of age, and is essentially what causes people to put their arms out to break a fall.  It is an important safety reflex that remains for the rest of a person's life.  Typical children, who fall over while sitting are able to break their fall (or try to) with their hands from about 6-8 months of age.  Joshua makes no attempt to put his hands out when in a simulated fall of any kind.  This reflex needs training and can be achieved with hard work.  Weight bearing on arms is also obviously needed for crawling, another important milestone.  Joshua also rarely rolls from stomach to back, because this requires him to push up with one hand (though he seems to be starting to do this lately, as he has rolled that way twice in the past week).  We have a few different approaches to encouraging weight bearing.  The first requires no parental input apart from the initial placement, so it is a good one for independent play.  It merely involves propping his chest up to give him that little bit of extra help (He can push up, without having to bear ALL of his own weight).  You can basically use anything for this, such as a rolled up towel, a small cushion, a foam wedge, or, like in my example here, a feeding pillow.  You can place toys in front of the child and pretty much leave them to it.  

Joshua making a reasonable attempt at pushing up on his arms, though you can see
by the look on his face that he is not very pleased about it.  

One of my favourite weight bearing activities is using a roller that Joshua was giving for Christmas.  It is essentially an inflatable barrel intended for crawling children to push along with them.  Joshua doesn't crawl obviously, but it has been extremely useful to us.  We are able to place his body over the barrel and roll him forwards, encouraging him to take his weight on his arms.  On a good day, he can hold himself there in a wheelbarrow position only needing my hand on his bottom for stability.  He refused to role model this in a photo, but I did get one of him demonstrating another use for the barrel, which is sitting in short kneeling.  He is able to kneel while supporting himself on the barrel.  Joshua being Joshua, likes to bounce around in this position also, and usually eventually falls to the floor, but short kneeling is another position that is beneficial.  

Kneeling- using arms to support the upper body
Another activity that we have only recently added to our repertoire is weight bearing on the legs.  Of course, we were doing this informally, holding him in our lap in a standing position etc, but the PT has given the go ahead to start paying more attention to this.  Children with high muscle tone have a tendency to stand on their tippy toes, so the key to good standing is that the heels are nicely on the floor. I have to assist him in positioning his legs well (feet apart to provide stability, with the feet straight or slightly outwards)  Ideally, he will be able to support himself on an object using his hands, but for the moment he often leans his chest against the activity tables and thats ok, you have to start somewhere.  He thinks he is pretty clever and for some reason I keep setting the tables near the curtains so it gives him a bit of a thrill to pull on the curtains too!  

Hello Clever Bum!

Playing while standing up
These are just a few of some of the many things we have to do every day in order to work towards the kind of mobility that most people achieve with minimal effort.  Sometimes it can be tiring, and sometimes I get to the end of the day and feel that I haven't done enough with him that day and so I feel guilty.  Sometimes I wish the words "He will do it when he is ready" was in my vocabulary, but it is just not.  And so we push on - hard work for Mummy and hard work for Joshy - who is a super kid through it all.  

Blurry Baby of Steel :)  


Thursday, February 3, 2011

Video - "Myoclonic Jerks"?

I took this little video of Joshua the other day, mainly because it was his first time drinking out of a straw cup (Yay, Clever boy!) so naturally that is a film worthy moment. During the course of this little film however, I managed to catch one of the "jerks" I have mentioned in previous posts. When described to the doctor, she was not concerned unless they get worse or I notice something happening with his eyes during them. You can see the jerk just after the 50 second mark in the video and it is pretty localised to his right shoulder. (The left side for us looking at him!)
If anybody who "knows" about this kind of thing has anything to comment, then I would be interested to hear what you have to say :)