I have a lot to be grateful for, so I don't like to complain about our situation. I don't cry, I don't dwell on the 'what if's?' and I never forget that there are so many people who are worse off then us. The last few months have given me a new perspective on life that I cannot put into words. I appreciate every moment I share with my son. Sometimes, I pause and try to take a snapshot in my mind of those blissfully happy moments. I feel privileged and honored to have 'met' (through the wonders of social networking) other mothers who's children have survived strokes. I may never meet those woman in real life but there's great comfort in finding others who are dealing with the same issues. Having said all that, sometimes I get tired of being positive. I'm tired of trying hard to not make people feel awkward. I'm tired of the cliches that people come out with. Sometimes, you don't need to say the 'right' words to show support. Just listening is enough. So, for this post only, I'm going to indulge in a rare moment of self pity and say what I feel deep down, WITHOUT a fairy floss ending....
Deep down I'm jealous. I'm jealous of all the other mummies who don't have to do therapy with their babies all day long. I'm jealous that those babies are easily ticking off the developmental milestones and my baby has to work so damn hard. I'm jealous of mummies who have the energy to talk about petty, insignificant shit.
Deep down, I'm angry. I'm angry that a lot of my sons innocence was taken away when he was only 10 weeks old. Sometimes, when he flashes one of his trademark grins, I want to run outside and scream "It's not fucking fair. Why him?". I'm angry that he'll never know a life without therapists and doctors appointments.
Deep down, I'm scared. I am so fucking scared. I'm scared that other kids might pick on him when he's older. I'm scared that he'll have low self esteem. I'm scared that he'll struggle in school. I'm scared that he'll be unhappy. I'm scared that he'll be diagnosed with autism. I'm scared that he might need another bone marrow biopsy soon because his white blood cells have been inexplicably low for awhile now. More than anything though, I'm scared of the day he asks me "mummy, when will my stroke get better?".
Because no child should have to ask that question.
- Posted using BlogPress from my iPhone
Monday 31 October 2011
The boy needs therapy!
It's really hard to search for answers, when you're not really sure of the question. Regular readers of this blog, will probably know that I've devoted a lot of time researching various therapies and treatments for Max. Partly, because I want to understand how his brain injury might affect him and partly because I feel that there's so much more we could be doing. The brains ability to 're-wire' itself (ie neural plasticity) is at it's greatest in the first few years of life. So, it makes sense that now is a really important time to be working hard with him. What complicates this though is that (a) He is still only a baby so problems with learning, behavior and cognition aren't yet apparent; (b) All of the 'experts' have a "we'll have to just wait and see" kind of attitude; and (c) All of the different specialities working with us don't really communicate that well with each other. For example.....For the first month or so after the stroke, Max could only look left. The physio and OT gave us loads of exercises to help him regain his visual tracking. Towards the end of his hospitalization, the Neurologist informed us that Max was looking left because of the lesions on his brain and that this was common after brain injuries. Well gee, thanks for telling us that now....
I'm feeling pretty happy right now about the supports we've got in place to assist in his physical development but I've been wondering what we can do to help him cognitively. My research has taught me that it's pretty common for kids like Max to have learning and behavioral problems when they get older. I wasn't sure if there was anything I could do to help him now, but I wanted to at least try. So, I've spent hours typing various words into google and following link after link after link. Some lead to dead ends, some I investigated further and a few, were absolutely brilliant.
I don't know how many emails I've sent off in recent months but it was a lot. Sometimes, I'd get replies back that were friendly, until I told them that I was only researching for now & wouldn't be making any financial commitment at this stage- they'd stop emailing. One service, bordered on harrassment and spent the better part of a week calling & calling & calling.... And then I got an email back from Andrew Brereton from the Snowdrop Program in the UK. Snowdrop is a Neuro-developmental program for brain injured children. Through the research I'd done, I saw some amazing results the program was achieving. The email I got from Andrew was from someone who genuinely wanted to help me. Andrews own son was severely brain damaged, he gave up his career as a pharmacist to study everything Neuro and managed to help his son achieve things that no one thought possible. When his son passed away, Andrew devoted his life to helping other children all around the world.
I spoke to Andrew a few weeks ago and completed an assessment for Max. Within that 40 minute conversation, Andrew gave me more answers than any doctor here had ever given me. He identified various issues that we'll need to work on with Max and he's in the process of developing a program for us. The basis of Snowdrop is that neural connections are formed through repetition. I don't know what our program will involve, but I do know it's going to be extremely intensive and challenging for us all.
I've learnt (so far), that Max probably has a sensory processing disorder. For example, we've had his hearing tested and he scored 100%. But, when you try to get his attention, you'd think that he was almost deaf. I tested this by banging saucepans about a meter away from where he was playing with his toys- no response. We know that he can hear us but things aren't being processed properly by his brain. Sensory processing problems are really common in kids with brain injuries. This kind of behavior is also common in kids with autism but at the moment, he doesn't fulfill the rest of the autism criteria. I pray that he never does.
- Posted using BlogPress from my iPhone
I'm feeling pretty happy right now about the supports we've got in place to assist in his physical development but I've been wondering what we can do to help him cognitively. My research has taught me that it's pretty common for kids like Max to have learning and behavioral problems when they get older. I wasn't sure if there was anything I could do to help him now, but I wanted to at least try. So, I've spent hours typing various words into google and following link after link after link. Some lead to dead ends, some I investigated further and a few, were absolutely brilliant.
I don't know how many emails I've sent off in recent months but it was a lot. Sometimes, I'd get replies back that were friendly, until I told them that I was only researching for now & wouldn't be making any financial commitment at this stage- they'd stop emailing. One service, bordered on harrassment and spent the better part of a week calling & calling & calling.... And then I got an email back from Andrew Brereton from the Snowdrop Program in the UK. Snowdrop is a Neuro-developmental program for brain injured children. Through the research I'd done, I saw some amazing results the program was achieving. The email I got from Andrew was from someone who genuinely wanted to help me. Andrews own son was severely brain damaged, he gave up his career as a pharmacist to study everything Neuro and managed to help his son achieve things that no one thought possible. When his son passed away, Andrew devoted his life to helping other children all around the world.
I spoke to Andrew a few weeks ago and completed an assessment for Max. Within that 40 minute conversation, Andrew gave me more answers than any doctor here had ever given me. He identified various issues that we'll need to work on with Max and he's in the process of developing a program for us. The basis of Snowdrop is that neural connections are formed through repetition. I don't know what our program will involve, but I do know it's going to be extremely intensive and challenging for us all.
I've learnt (so far), that Max probably has a sensory processing disorder. For example, we've had his hearing tested and he scored 100%. But, when you try to get his attention, you'd think that he was almost deaf. I tested this by banging saucepans about a meter away from where he was playing with his toys- no response. We know that he can hear us but things aren't being processed properly by his brain. Sensory processing problems are really common in kids with brain injuries. This kind of behavior is also common in kids with autism but at the moment, he doesn't fulfill the rest of the autism criteria. I pray that he never does.
- Posted using BlogPress from my iPhone
Wednesday 19 October 2011
This one's for all the (soon to be) new mummies
I know five people having babies in the next month or so. FIVE! Some of them are first time mummies and some of them are going back for seconds (crazy huh?). I read one of those articles this morning on the topic of 'the first few weeks with a newborn'. It was the biggest load of shit I've read in ages. Full of lots of helpful advice like 'eat organic food or food with less then 10 ingredients', 'exercise, because you'll need that energy to keep up with a toddler' and 'now is the time to start reading the labels on the back of food packaging'- really? Now? Gee, how's about adding some more pressure on top of an already stressed, sleep deprived, hormonal woman? All I remember thinking in those first few days was 'when is my arse gunna stop hurting from these damn hemorrhoids?' and 'why is the baby crying? Again?'. Turns out that babies don't read 'the book' or listen to 'the experts'. With that in mind, I've decided to put together my own list of advice for new mummies (and daddies).....
1. On more than one occasion, you will think "what the fuck have I done?". This is normal and nothing to feel guilty about.
2. Don't put too much pressure on yourself. The most important thing at the moment is healing from the birth and bonding with your child. Don't waste this precious time by fluffing about reading food labels and stressing about losing baby weight.
3. It does get easier
4. Most babies cry more in the first 3-4 months, then they will for the rest of their life. This always made me feel better.
5. Establishing breastfeeding can be difficult....oh boy can it be difficult. You'll be discharged from hospital before your milk comes in and you'll have fuck-all practical support once you get home. Seriously? What is the point of the National Breastfeeding Hotline? I don't care if they're on call 24/7, how are they meant to help the baby attach onto dodgy nipples over the phone?? Don't beat yourself up if you can't breastfeed. Putting Max on formula enabled me to enjoy him, rather than stressing my head off about my milk supply. By the time kids are 5, they'll have consumed KFC, Maccas and various other shitty foods anyway. (*Disclaimer: breast is best)
6. It doesn't matter where the baby sleeps. Well...ok it does, don't be leaving it in the garage or anything (as tempting as it may be). What I mean is, so what if you bought a beautiful Moses basket and baby likes sleeping in the rocker? Big deal. Once baby is a bit older, you can develop a healthy bedtime routine. For now, it's about survival.
7. This one's a total gem, that really reassured me (in regards to crying) "nothing you do will work every time". Hmmmm so yesterday baby loved being patted and today screamed in your face for doing the same thing? Normal.
8. Babies love to suck. It's really soothing for them, hence why they love dummies so much. Unfortunately, this also means they like sucking on nipples, not because they're hungry, but because they can. After a few days, your nipples will be falling off and they'll be covered in hickies. Also, getting baby to attach correctly isn't as easy as it sounds. The book says "simply glide your finger between the babies mouth and your nipple to break the seal". The book doesn't mention that the baby will still manage to take away half your nipple when the seal is broken and then flail it's arms around, screaming like it's being tortured. If you don't have lanolin now, BUY SOME. That stuff is the bomb! One more thing on breastfeeding.....set up a table where you plan to feed with all your essentials (ie water, phone, tv remote). I remember one night I sat on the couch feeding Max, sobbing my heart out cos I couldn't reach the remote OR my phone and my most hated movie was on TV (Riding in Cars with boys- hate it).
9. Fresh air really does help you feel better. Even if it's only for a few minutes.
10. For awhile, you'll leak continuously from various places and you'll leak a lot. It's shit.
Sorry if this post sounds negative. It's really not meant to be! I just wanted to share what I've learnt in the hope it might help someone else.
I wish all my friends who are expecting all the very best and I hope their babies are born safely and in good health. See you on the flipside!!
- Posted using BlogPress from my iPhone
1. On more than one occasion, you will think "what the fuck have I done?". This is normal and nothing to feel guilty about.
2. Don't put too much pressure on yourself. The most important thing at the moment is healing from the birth and bonding with your child. Don't waste this precious time by fluffing about reading food labels and stressing about losing baby weight.
3. It does get easier
4. Most babies cry more in the first 3-4 months, then they will for the rest of their life. This always made me feel better.
5. Establishing breastfeeding can be difficult....oh boy can it be difficult. You'll be discharged from hospital before your milk comes in and you'll have fuck-all practical support once you get home. Seriously? What is the point of the National Breastfeeding Hotline? I don't care if they're on call 24/7, how are they meant to help the baby attach onto dodgy nipples over the phone?? Don't beat yourself up if you can't breastfeed. Putting Max on formula enabled me to enjoy him, rather than stressing my head off about my milk supply. By the time kids are 5, they'll have consumed KFC, Maccas and various other shitty foods anyway. (*Disclaimer: breast is best)
6. It doesn't matter where the baby sleeps. Well...ok it does, don't be leaving it in the garage or anything (as tempting as it may be). What I mean is, so what if you bought a beautiful Moses basket and baby likes sleeping in the rocker? Big deal. Once baby is a bit older, you can develop a healthy bedtime routine. For now, it's about survival.
7. This one's a total gem, that really reassured me (in regards to crying) "nothing you do will work every time". Hmmmm so yesterday baby loved being patted and today screamed in your face for doing the same thing? Normal.
8. Babies love to suck. It's really soothing for them, hence why they love dummies so much. Unfortunately, this also means they like sucking on nipples, not because they're hungry, but because they can. After a few days, your nipples will be falling off and they'll be covered in hickies. Also, getting baby to attach correctly isn't as easy as it sounds. The book says "simply glide your finger between the babies mouth and your nipple to break the seal". The book doesn't mention that the baby will still manage to take away half your nipple when the seal is broken and then flail it's arms around, screaming like it's being tortured. If you don't have lanolin now, BUY SOME. That stuff is the bomb! One more thing on breastfeeding.....set up a table where you plan to feed with all your essentials (ie water, phone, tv remote). I remember one night I sat on the couch feeding Max, sobbing my heart out cos I couldn't reach the remote OR my phone and my most hated movie was on TV (Riding in Cars with boys- hate it).
9. Fresh air really does help you feel better. Even if it's only for a few minutes.
10. For awhile, you'll leak continuously from various places and you'll leak a lot. It's shit.
Sorry if this post sounds negative. It's really not meant to be! I just wanted to share what I've learnt in the hope it might help someone else.
I wish all my friends who are expecting all the very best and I hope their babies are born safely and in good health. See you on the flipside!!
- Posted using BlogPress from my iPhone
Wednesday 12 October 2011
I climbed Mount Everest. Twice.
In June, 2010, I had a dream that I climbed Mount Everest. Twice. It felt so profound and prophetic at the time. A few weeks later, I discovered that I was pregnant with Max. Surviving pregnancy and childbirth was my first mountain to climb. Boy was that an epic journey! I started climbing the second mountain when Max first got sick. I've just reached the pinnacle and now we're on our way down....
So many things going on in my mind right now, that I'm a bit confuzzled as to how to articulate myself. I don't really know exactly what I want to write about in this post, so I figure that I'll just start writing and see what happens.....
Starting with some good news....Thanks to a random act of kindness, Max has been accepted into an early intervention program. This entitles him to 2 hours of therapy per fortnight. So now, I don't have to beg the hospital for services AND I can choose how often he sees the private physio (who I'm definitely hanging on to!!). Because our appointments at RCH are dwindling off (more about that later), I feel like we are now truly embarking on the next leg of our journey. The early intervention team, will be seeing Max until he starts school so they're about to become almost 'part of the family'.
(a gorgeous photo, just to break things up a bit)
We have now been discharged from Neurology at RCH. Max has (so far) successfully weaned off his anti-seizure medication. He is so much happier without the medication. I'd read that phenobarb can cause agitation, so I think this may have been causing his mood swings. I am loving 'getting to know' my baby's true personality. And boy, does he have bucket loads of personality!
We have also been discharged from Neurosurgery at RCH. Last week we had our last appointment and saw some images from the latest MRI. This time, I was prepared for the anguish I'd feel but nonetheless, I felt like I'd been slapped across the face with a wet fish. Even though I know that he is young and his brain will learn to compensate for the damage, it feels completely shit seeing your baby's brain so badly damaged.
I'm feeling a sense of freedom now that we are less tied down with appointments. I've celebrated by not doing as much housework and consequently, there is 'stuff' every where. It bothers me, but not enough to rectify it. In some ways, now that life has granted us some respite, it is making me realize how much we've been through these past few months. It sounds silly I suppose, how could I not have realized that my baby having a stroke was a significant life event? I guess, I've been running on auto-pilot for awhile. So the house is messy? Big flipping deal.
And finally.... Now that life is getting more predictable, I've run out excuses for eating junk food and being lazy. I've joined Weight Watchers online and have embarked upon getting myself healthy again. If I'm going to teach Max a healthy lifestyle, then I have to have one myself. I admit though, it felt strange this morning doing something for myself. I'll keep you posted on my progress.
If my dream is true, then I've climbed Mount Everest twice now. Hopefully, this means that we can begin the downward decent towards 'normality'.
Ain't love grand?!
- Posted using BlogPress from my iPhone
So many things going on in my mind right now, that I'm a bit confuzzled as to how to articulate myself. I don't really know exactly what I want to write about in this post, so I figure that I'll just start writing and see what happens.....
Starting with some good news....Thanks to a random act of kindness, Max has been accepted into an early intervention program. This entitles him to 2 hours of therapy per fortnight. So now, I don't have to beg the hospital for services AND I can choose how often he sees the private physio (who I'm definitely hanging on to!!). Because our appointments at RCH are dwindling off (more about that later), I feel like we are now truly embarking on the next leg of our journey. The early intervention team, will be seeing Max until he starts school so they're about to become almost 'part of the family'.
(a gorgeous photo, just to break things up a bit)
We have now been discharged from Neurology at RCH. Max has (so far) successfully weaned off his anti-seizure medication. He is so much happier without the medication. I'd read that phenobarb can cause agitation, so I think this may have been causing his mood swings. I am loving 'getting to know' my baby's true personality. And boy, does he have bucket loads of personality!
We have also been discharged from Neurosurgery at RCH. Last week we had our last appointment and saw some images from the latest MRI. This time, I was prepared for the anguish I'd feel but nonetheless, I felt like I'd been slapped across the face with a wet fish. Even though I know that he is young and his brain will learn to compensate for the damage, it feels completely shit seeing your baby's brain so badly damaged.
I'm feeling a sense of freedom now that we are less tied down with appointments. I've celebrated by not doing as much housework and consequently, there is 'stuff' every where. It bothers me, but not enough to rectify it. In some ways, now that life has granted us some respite, it is making me realize how much we've been through these past few months. It sounds silly I suppose, how could I not have realized that my baby having a stroke was a significant life event? I guess, I've been running on auto-pilot for awhile. So the house is messy? Big flipping deal.
And finally.... Now that life is getting more predictable, I've run out excuses for eating junk food and being lazy. I've joined Weight Watchers online and have embarked upon getting myself healthy again. If I'm going to teach Max a healthy lifestyle, then I have to have one myself. I admit though, it felt strange this morning doing something for myself. I'll keep you posted on my progress.
If my dream is true, then I've climbed Mount Everest twice now. Hopefully, this means that we can begin the downward decent towards 'normality'.
Ain't love grand?!
- Posted using BlogPress from my iPhone
Wednesday 5 October 2011
Some beautiful photos part 2
This week I feel so tired. I've actually been getting (comparatively) decent sleep and not working as much, so I'm not sure why. So, even though I have loads of things that I want to write about, I'm going to share some photos instead because (a) He's beautiful, and (b) I can't be bothered writing.
Learning to drink from his sippy cup.
He liked my cooking!
All grown up and forward facing now!!
Naw ;-)
Ummm.... We need to tilt the chair back me thinks.
Don't let the perplexed face confuse you, he LOVED hanging out at the park.
Mr Grass Inspector
See? He loved the park!
Cheeky boy, trying to use his feet to grab toys instead of his right arm!
The first time he has worn a Bonds 'Easysuit'. It wasn't so easy....
Good morning happy boy ;-)
Studying hard, learning his Alphabet.
Amazing what you can buy at Safeway these days ;-)
I love you so much Max xxx
Posted using BlogPress from my iPhone
Learning to drink from his sippy cup.
He liked my cooking!
All grown up and forward facing now!!
Naw ;-)
Ummm.... We need to tilt the chair back me thinks.
Don't let the perplexed face confuse you, he LOVED hanging out at the park.
Mr Grass Inspector
See? He loved the park!
Cheeky boy, trying to use his feet to grab toys instead of his right arm!
The first time he has worn a Bonds 'Easysuit'. It wasn't so easy....
Good morning happy boy ;-)
Studying hard, learning his Alphabet.
Amazing what you can buy at Safeway these days ;-)
I love you so much Max xxx
Posted using BlogPress from my iPhone
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