The Asher Chronicles - Part 9

Diary Entry - 10th January 2008

The new year has been okay so far. Indie started crawling on the 1st of the new year which was exciting!!. Asher has been fitted for his AFO's, which are his leg splints. In a couple of weeks they will be completed and they will be fitted to make sure they fit and take them home. Ash will be getting ones with cars and trucks on them. Im hoping he likes them and takes to them well. Next week I also have an appointment with his pediatrician, I dont know that he'll have much to say though.

The kids are driving me insane at the moment, they wont stop fighting. Its unbelievable, you wouldnt think that at this age they would fight so much. They havent stopped in the last 3 days!!

Diary Entry - 17th February 2008 - Sunday Night

Asher has his orthotics now which has been really promising as he stands up a lot more and actually wants to. In the past week and a half Indie has also learnt to stand up against things and take a couple of side steps whilst holding on. Its really exciting seeing them both progress, but the frustration Ash feels at his 'slowness' is evident. It really does bother him to see other kids 'walking all over him' or doing things he cant or really struggles with.

Ashy in his new orthotics

This week he will start playgroup through Novita and hopefully met other kids like him. As its through Novita its likely he will and I can only hope that Ash and I fit in. These days it feels like everyone is staring at us and it makes me really anxious about going out. It makes me wonder what the world is coming to and why people feel they have to be so rude. Im nervous about playgroup, I really hope the other mothers actually speak to me. For Ashers sake to, because this is meant to help him get along with other children.

Diary Entry - 17th March 2008 - Monday Night

Well Indie and I have just had our birthdays. I cant believe she is one already, and I cant believe I am closer to thirty than I am twenty. We had a really good party for Indie, the kids really had a great time.

The kids have been really good lately. Ash is growing up so fast. He is making loads of progress especially with his language. He amazes me all the time. I have a really strong connection with Ashy and I think he trusts me a lot. He's my best little guy and I love the way he wraps his little arms around my neck and plants a kiss on my lips and says 'I love you mummy'.
Indie is a real sweetheart to. She smiles so much, she is such a happy little girl.

Ashy with a chocolate freckle in his mouth and Indie staring at her butterfly cake

Birthday Girl

Diary Entry - 8th April 2008 - Tuesday

Indie has started walking around these last couple of weeks. At first it was just a couple of steps and now she can go from one side of the room to the other and turn around. She is still falling on her butt quite a bit but shes getting there.

The first few days Ashy was quite distant and seeming like he didnt care and he was ignoring all of us, but now its really hard to know what hes feeling. He is a little sick at the moment to so hes a bit tired and grumpy actually - the poor little guy.

Diary Entry - 17th April 2008 - Thursday Night

Lately Asher has been saying 'Thats not (insert word here)...NOT funny!!' as if im trying to trick him on purpose. Today he wanted to draw so I would ask him what color he wanted - he'd choose one and i'd give it to him. Anyway he changed colors a few times and each time he drew with a new color he would say 'Thats not (insert word here)...NOT funny!!. At first I thought he was saying 'frozen', I really actually couldnt understand what he was saying. It turns out though he was saying 'orange'. It was so confusing - especially considering he never asked me for 'orange'. I think he was trying to be silly and joke around.

Indie is walking really well by herself now. Her and Ash play so nicely together sometimes it melts my heart. Then at other times they drive each other completely batty and fight so rough.

Diary Entry - 20th May 2008 - Tuesday Night

Asher saw the Ophthalmologist today to see why his eyes bother him so much. He was such a nice Dr and really thorough too. Anyway it turns out his eyes are really dry because he cant close them properly. Its called 'Lagophthalmos' or 'Lag eye' for short, and apparently is pretty common. He needs to have eye gel for during the day and a stronger eye gel at night, everyday and night.

I find in particularly frustrating that the responsibility is solely left to me to do this as Greg still struggles to cope with Ashers disability still. Its exhausting when I am the one doing all of his treatment and therapy. I just dont feel like I can keep doing this by myself.

Diary Entry - 5th June 2008 - Thursday

Ash has been doing really well lately. If he has his orthotics on he makes the effort to walk with his walking frame. Its really encouraging to see him trying and its boosted his confidence ten-fold.

His speech is also coming along and he is at the stage where you can have little conversations with him. He can be so funny and is at the age where they say funny things all the time.

I went to buy Greg some bourbon yesterday and as I put the alcohol on the counter Ash said 'mum thats dads pepsi'. I smiled and said 'yes it is mate', and he said 'mum dads pepsi is gross!'. It was very cute and the guy behind the counter was smiling.

Indie has been really good to. Shes a stomper though. She stomps around the house like a little whirlwind destroying everything in her path.

Indie and Ash have heaps of fun together when they arnt fighting, and especially when they are making mischief together. It can be exhausting but still we troop on!

Mischief Makers

Diary Entry - 13th August 2008

Indie and Asher drove me nuts today. It was just a pretty full-on day really. I spent most of the day running after them, trying to stop them from destroying the house.

We went to see Justine Clarke today with their cousin Isabella and Aunty Kelly. It was heaps of fun, but when we got back the kids were all psyched up and crazy-fied.

Ash has been 'walking' for about a month now which is great! He is doing such a great job. We have been so busy with Kindergym, Playgroup, Hydrotherapy and toilet training - its such a hard job.

Diary Entry - 25th November 2008

In they last few weeks we have enrolled Asher into kindy which is exciting. He'll be going to The Briars Early Learning Centre (for children with disabilities) and Golden Grove Kindy.

Im really nervous but I know he's going to have heaps of fun. I dont know how he is going to react when I leave him there though. I hope he doesnt get too upset.

Diary Entry - 2nd February 2009 - Monday

It was Ashers first day of kindy today. Apparently he had heaps of fun. He did a painting of a dinosaur and he played with a turtle in the water. He was so exhausted when I picked him up, he fell asleep in the car on the way home. When we got home he woke up with glazy eyes and asked for lunch.

I've asked him a million questions since he has been home but he hasnt answered and wont part with any info!!. Its really frustrating. Im hoping that he's tired and just cant be bothered talking. Maybe he'll tell me tomorrow when he's had a big sleep.

I think Indie enjoyed being the centre of attention whilst she had the chance when ash was at Kindy, but when Ash got home they fought heaps. He was tired and she missed him and wanted to play. They've both had an early night tonight.

Diary Entry 23rd February 2009 - Monday Night

I have been so tired today, I think it must be from having such an exhausting weekend. I was painting at mums all weekend to earn some extra money. Indie was really naughty all weekend, full of attitude. Asy was my little policeman telling her off. Its really cute actually. They can fight like cats and dogs but they still love each other and give each other kisses and cuddles.

Diary Entry 3rd March 2009

This past week I bought Asher his first big bed. He loves it and he looks so grown up in it. He needs a step stool to get up on it though as he doesnt have the strength to pull himself up by himself.
Indie got Ashers toddler bed and she also loves it. The only problem being though that two days after shes in it she learns how to open doors, the cheeky monkey.

Bedtime hasnt been great the last two or so nights as one would imagine but thank goodness she went down tonight okay. Shes waking up a lot earlier also now that she can escape, so hopefully she sleeps in in the morning, although we do actually have playgroup.

Asher is a bit sick at the moment with croup and tonsillitis.

Diary Entry 26th March 2009 - Thursday Night

Indie and Asher have been a real handful lately but today they were really good. Indie has been learning to use the potty, and today she only had two accidents which was encouraging.
The fact that Indie has picked it up so well gives me more confidence in the way that I have been teaching Asher. It also makes me aware that he really doesnt know when he needs the toilet and cannot control it. At least I think thats what is happening anyway. If he's incontinent forever I can handle that, its not so bad. All the trying and failing is the worst thing.

The Asher Chronicles - Part 8

Diary Entry 4th November 2007

Sunday Night

Im still feeling depressed and im not sure why. I have such a sadness inside that it physically hurts. I cant think of anything in particular that has brought this on, maybe just a bit of everything. Life is a constant struggle, I have to keep reminding myself about why we are here and where I am headed and what my personal goals are for this 'physical experience'. My spirit hurts a lot on this earth, I must have many lessons to learn.

I am tired. I dont cope well with little sleep. I wait for the days when I am an old woman who can lay in bed and sleep well after the sun has risen once more. Lying in bed next to Greg and soaking each other up, laying in love and warmth.

Greg is on night shift again now and will be for a few weeks. He has just left for work, my heart aches for him to return. I relish the weekends when we can sleep in each others arms.

This past weekend has been a bit crazy. On Friday Greg, Mike, Ash and myself slept over at Sams house which was really good. It was nice to get to spend some quality time together. We haven't seen Sam in a few weeks and I always get a bit anxious when we don't.

Then on Saturday night Kelly went to the Justin Timberlake concert and left Isabella at our house to sleep over. But what ended up happening was that Isabella decided she didn't want to sleep here and I had to get Kelly to pick her up. I felt heaps bad for Kelly because I can imagine she'd be shattered. I really empathize for her and I think that's why Im feeling a bit sad to. I hope Kelly is coping and isn't depressed or anything like that.

The whole experience has made me really anxious and panicky over my own kids and sleep etc. I don't know what I would do if Ash and Indie didn't sleep or were difficult like that. I just wouldn't be able to deal with it. 

It brings back terrifying images of the first nights at home with Asher, that was a real black haze. Until he was about 9mths I was stuck in that moment. It brings a lump to my throat just thinking about it, it makes me feel nauseous.

Anyway just so we end on a positive note, Ash has kindergym tomorrow. Im really looking forward to it, he had so much fun last week, and I actually really enjoyed it to. 

Diary Entry - 13th November 07

Tuesday Night

I am so bitter. Here I am trying to be the best person I can be and trying to figure out what lesson it is that Im meant to be learning that got me in this life with a disabled child. I mean stop with the f#@king cryptic clues and give me the f#@king answer and I'll fix it!!

What sort of stupid game is this that life is playing at. I am trying my best dammit!

Diary Entry - 15th November 07

Thursday

I am so angry right now I could scream! I have been doing all of Ashers therapy myself and Greg doesn't seem to give a shit! You think that this is a couple of hours a week? - wrong! I do it every minute of every day!! You think that this is easy?? No! Its driving me insane, but you think you can go to work, come home and do nothing for us. Going to work is not enough. I didn't ask for this. I wish I could just run away from all of this, then you might find out how hard this is. Not to mention being told Im a bad mother all the time because Ash throws so many tantrums.

Diary Entry - 17th November 07

Saturday

Im running out of energy, its taking all that I have left just to write this. Nobody has any idea what Im going through. I asked mum again when she is going to take the kids but she just wanted something in return which defeats the purpose of having a break. She gave some stupid idea of how to get Ash speaking more, lecturing me as if I don't have a speech pathologist over every week. As if I don't have a million and one other strategies Im meant to be doing. I am so exhausted I just need a break.

I am so angry, everyone around me has 'normal' kids and some of them arnt even good mothers. This was meant to be easy. I got pregnant by accident and then we decided to keep him, and it was meant to be easy from there - but it has been hard. Especially watching the same thing happen to people around me, people who have had babies after me and their kids are already walking and talking and toilet trained etc etc. Its so unfair. It makes me angry, sad and hurt to see their kids, or reading about 'baby milestones'. I just want it to be all over.

I've been under some illusion that once Ash starts walking it will all be okay, but you know it wont be. He'll still have Cerebral Palsy and he'll still have problems walking and he'll still have other problems. Its not going to be okay, and its not going to be okay for a long time. He has this forever and so do we.

Diary Entry -9th December 07

Sunday

Asher has casts on his legs at the moment. He has had them on since Wednesday and he can have them off this Friday, and he had them on for a week before last Tuesday. He is doing quite well in them, standing and balancing more which is apparently common for kids in casts. The physio, Jill, measured his feet on Wednesday and there was a noticeable difference which was great news. Now we are just waiting on funding for his splints which hopefully will be granted late December, early January. Im really hopeful that this is going to work. 

His third birthday is coming up in April, which is just un-real. He's my little prince, I love him so much. He called me a princess the other day. He has so much personality now and says the funniest things. I've just managed to get him to understand that boys and girls are different and that Aunty Helei has a baby in her tummy. I pointed to Helei's tummy and said 'Helei's baby' and later he pointed to helei's tummy and said Helei's baby and then he pointed to his tummy and said 'Ashys baby'. It was so hilarious!!

Helei's baby is due this coming weekend which is freaking me out. Im loosing another baby-sitter and I don't know what the future will bring. That really scares me. 

Helei and Jed were and have been my biggest support after and since the birth of Ashy. They've had him at least once a week every week since he was a one week old. I would not have made it without them.

Novita's structure is changing again also at the end of this year and the start of the new one, so im going to have to adjust to something, and someone new again along with Ashy.

Diary Entry - 29th December 07

Well another year is nearly over and another about to begin. I wonder what this coming year will bring.

Helei ended up having Jaxxon on the 22nd December at 6.02pm weighing 8 pound by emergency cesarean. His heart rate was dropping so they had to get him out fast. Anyway she spent christmas in hospital which didn't really matter. Christmas wasn't that great anyway, me and Greg fought the whole day and for three days following. We are both really stressed out at the moment.

I have a few goals this coming new year, the main one being to get Ash walking. Ash has been a really good boy. He's been a bit attention seeking at the moment and really competing with Indie. I've been trying to give him a bit of extra time with mum. He really likes playing games, just the two of us, like cars or something. He's my little prince. I love both of them to bits.

The Asher Chronicles - Part 7

6th August 2007 - Diary Entry

We found out yesterday that Asher has been  accepted into Novita which is great. Its such a relief to know that he'll be receiving the help he needs. I dont know much about it yet but we will have a meeting with them to discuss everything.

28th August 2007 - Diary Entry

Life is so busy at the moment with all of Ashers appointments. At least they come to our house some of the time now.

25th September 2007 - Diary Entry

Ash is standing up a lot more lately and his confidence is growing. Indie and Ash are so cute together. Ash loves trying to make Indie laughg and they both tease each other, its hilarious to watch. Indie will tug on his clothes and pull at his dummy and raspberry and laugh in Ashys face. Asher will hug her, hold her hand, and ask her whats the matter when she is upset. Its pretty cute.
They're a handful though. Ash has become a mummys boy and Indie is quite demanding also, and they usually demand my attention at the same time. Thankfully they are good kids and they sleep well. It can only get better and easier from here.

4th October 2007 - Diary Entry

Ashy has just started pushing his trolley along which is truly amazing and such an achievement for him. On the other hand he's finding his frustration difficult to cope with and some un-wanted behaviours are popping up. I think he has been having some difficulties with the way he interacts with both strangers and the people that are familiar to him. Its been dreadfully heartbreaking seeing the frustration in his eyes, and his actions when he cant do exactly what he would like to. It makes me cry thinking about how he must be feeling, and actually I really wish I could get into his mind and see whats going on. Ash gets a holiday at mums next week so it will be interesting to see what his behavior will be for mum.

31st October 2007 - Diary Entry

I went to Ashers Hanen course tonight which I do every Wednesday night, and there are two more weeks until the course is finished. I feel so alone when I go there. I feel like the odd one out, and I feel sick sitting there actually. Its the same sort of feeling I got at the hospital surrounded by middle age women. I feel like an idiot, like I dont belong and shouldnt be there. There are no young women I can relate to, just older couples who dont talk to me. It makes me feel worthless and like im the only young mother with a disabled child.

I also hate the fact that Greg doesnt get involved with any of Ashers therapy - none of it. He doesnt even ask me about it or seem to care if I try to talk to him about it. I cant talk to him or anyone about what im feeling either because there is noone that understands or is/has experienced the same thing.
I feel so depressed and alone but I guess I just have to cope. I keep wondering why me, what am I meant to  be learning from this? Im trying my hardest for Ash but I just dont know what else I can do to help him.

It was cute the other day. I put Ash in the naughty corner for some reason and when I went to get him out he was crying and had a couple tears rolling down his face. Anyway whilst he was telling me he was sorry and that he wouldnt do it again, he got his chubby little hand and finger pointing to each tear on his face going 'pop' 'pop'. Geez Ashy you sure do know how to break mummys heart! I thought.

The Asher Chronicles - Part 6

Physio Outpatients Referral and Progress Notes with physio at The Childrens Hospital
December 5th 2006

Parental Concerns - Not Walking

Attended for Assessment

Commando Crawling

Sat @ 9mths

Crawled at 12mths

Age: 19mths

Referred by Dr M for assessment of delayed gross motor skills.

Basic muscle tone - Low tone, slip through sign.

Range of movements - NAD, full range of movement in hips and ankles. No knee hyper extension, MCP hyper-extends. Automatic responses - PE of arms present in all directions but not strong.

Volitional Movements:

Asher is able to roll from supine to prone to come up to sitting, his movements are slow and require effort. He will crawl slowly on his hands and knees and pull up to a tall kneel.

Asher needs assistance to move from tall kneel to standing. On weight bearing, he shows decreased strength and endurance, needing to lean his body against support surface. He can only stand briefly and then collapse at the knees.

Asher is unable to take weight when held in standing. He is unable to cruise sideways along furniture. He has a positive slip-through sign.

Impression

Asher has low tone & hypermobile MCP joints and in his hips. His movements are generally slow and requiring moderate effort. Asher moves quite well on the floor but lacks control in upright position. He is crawling but not cruising. His gross motor skils are functioning at about 9 month level.

Plan Given mother advice on positioning and handling. Given home program. See Y12.

Physio.

Calendar Dates

January 4th 2007
Physio at The Childrens Hospital

Progress Notes

Age: Nearly 20 Months

Dribbles alot, chews food ok

says 'mum, dad, no, nana, tractor, asher, what that, oh oh, makes car noises'.

His fine motor skills are age appropriate. Stack lots of blocks, putting straw into fruit box, recognized familiar faces in photo album.

Physically asher still prefers to crawl on all fours but up on fingers. He needs slight assist to get up to standing. Tends to flex @ his hips and WB through forearms. Mostly go up onto his toes (has good calf range). When feet are flat, heels valgus - foot prunated right to left.

TS Dr Munt 6/2/07, may benefit from muscle biopsy.

Plan to commence Baby Swim. Given Tubigrip G Stocking to strengthen lower legs.

Physio

January 11th 2007
Asher - Hydrotherapy at The Childrens Hospital

January 15th 2007
Ash is 21mth's Old!!

January 31st 2007
Baby Swim Hydro

Progress Notes
Attended for Baby Swim - with Mum and Dad. Reported to be pulling up to stand more and cruising along furniture. Still tends to go up onto toes but not as much.
Generally low tone and lacks strength in all limbs.
Plan continue baby swim

Physio

February 6th 2007
Ash seeing Dr M @ 10.20am

February 14th, & 21st 2007
Baby Swim Hydroptheraphy

February 15th 2007
Ash is 23mths Old!!

February 28th 2007
Baby Swim Hydro and Physio





Diary Entry - 6th March 2007

Ash has been popping out heaps of new words all the time.  Its good because at least I know that part of his development is coming along normally.

I've been trying to get him walking on his legs a bit but he doesnt really want to.  He is still very wobbly in his hips and he cant seem to get his legs in the right spot.  He will take a few steps though while I hold his arms.  He's strong enough to stand there.  I think he really needs me and Greg on the floor with him for a bit of extra encouragement.

Diary Entry - 9th March 2007

On Wednesday when Greg took Asher to swim class the physio said to Greg that she wanted Ash to see an occupational therapist because they were a bit concerned about him.  Anyway I had no idea what they were talking about because I was at my midwifery appointment and had only heard this from Greg.
Afterwards though I was waiting outside the hospital because Greg had gone back in to get his glasses that he'd left behind and the physio had followed me.  She said that she'd made an appointment for Libby to see Asher at 9am next Wed 14th (the day i'll be induced!!).  She said they were a bit concerned about his behaviour because he tends to be very clingy with certain things.

Anyway now they have me worried and thinking about what the problem, if there is one, might be.  The only things I could come up with was Aspergers or some form of Autism.  I have thought in the past that he might show some signs of that but I never really though he would.  I mean he is funny about some things such as lights and fans.  He obsesses over those things quite a bit and whenever he see's either one he'll scream 'on!'.  He wont let you put your head on his pillow and he is funny about what he puts his hands on.  I dont know cause I mean any of those things I would have thought could be put down to just his age group.  He is very smart and at the moment he is saying a lot of words.  He's a little parrot and repeats everything you say.  The list of words he can say is amazing.  I never thought he spoke that much but now he can really communicate and let us know what he wants.  Im hoping it will be nothing and that he'll be fine.  Everyone i've spoken to so far doesnt seem to think he does anything out of the ordinary but then again no one thought he had a problem before he was diagnosed with Hypotonia either.

Its just a bit hard thats all.  Our new bub can come at any minute now and we are still finding out two years after Ash was born more problems.  He hasnt really had it very easy so far, it just seems to be one hurdle after another.  We see the pediatrician again on the 24th April so I guess I can see what he thinks about this then to. You dont really expect your baby to have so many problems, if any at all.  Its unfair.  He was born brand new but no-one can say whats caused it because they say he was born like that.  I guess that leaves me as being the cause.  Im a defect.  Hopefully Indie makes it out okay without any problems.  People who's children are born 'normal' just dont seem to understand.  Its really hard having all this go on.  Im not saying i've had it harder over anyone else, but it is very exhausting emotionally and physically.  Leanne has taken him today anyway so I can have a break until Sunday which is nice.

Indie-Jaye is Born!! 10th March 07

Diary Entry - 5th April 2007

Well Asher saw the occupational therapist yesterday.  It was quite interesting actually, although very hard to explain to someone, and hard to understand, if your not an occupational therapist.  Basically she observed his behavior to check his development level and she asked us a bunch of questions.  She said she thinks he is a bit behind compared to other two year olds only because he cant do the same things as normal two year olds - he isnt having the same experiences as them because he isnt walking and exploring.  She is also going to look into if he might have a sensory sensitivities.  Basically the way we perceive the world is through our senses - taste, smell, sight, sound and touch.  Its all connected to our brain and sometimes there can be a sensitivity to one of these things and the way Ash perceives the world could be very different to the way we do.
Anyway she wants to see him again next week and she is also going to speak to the speech pathologist to see if she wanst to see Ash.  If not we will just be given some exercises for him to do because the muscles around his mouth are weak.  She said we should keep reminding him to swallow and close his mouth and also we have some exercises for his mouth.  Its all a bit full on at the moment going from one thing to the next.  Libby was really helpful actually and very informative.  She said this is something that he will always live with and he'll always need to do some sort of activity to keep his muscles 'awake'. Anyway hopefully in all of this we will find out why Ash doesnt like standing on his legs and then fix it and get him walking!.

Diary Entry - 10th April 2007

Asher saw Libby again today, the occupational therapist.  She was assessing Ash to see if he had a sensory sensitivity which was why he might not be walking.  Anyway we went through the sensory questionnaire which assesses and scores Ash on a number of different things.  I cant actually remember everything she said because its to energy consuming.  All the physios though got together with Libby and they all agree that further tests need to be done because they think there is something else physically wrong.

Diary Entry - 23rd April 2007

Well Ash has his pediatrician appointment tomorrow.  I've been looking forward to it for ages but im really nervous all of a sudden.  I want him to do more tests but at the same time im nervous about what Ash will have to go through and also what they might find.  I just want to know whats wrong and find out if its something that can be fixed.  I've really been worrying about him.  I desperately want him to walk.  I think he does to.

Diary Entry - 12th May 2007

Ash has had some blood tests and he will also be having a MRI on the 4th July.  On one hand I hope it shows something so we know whats wrong but on the other hand I dont because I dont want it to be something we cant fix.  All this not knowing is really getting to me and im at the stage where I just want to know what it is whether its good or bad so that at least we know what we are dealing with and how to deal with it instead of guess work.

Diary Entry - 22nd Mar 2007

Well Ryder apparently has started walking as Helei informed me via text this arvo.  It makes me so angry that babies that were born after Asher - some up to a year afterwards, are walking and he still isnt.  Im so angry, why Ash, why our family - what did I do that was so bad to deserve this?. Its so frustrating for me and its really getting me down.

The time alone spent helping him is becoming exhausting.  Its also so hard waiting long periods between tests and appointments - I am so close to just giving up.  I just feel like walking away from everything and hiding for a long time.  I hate people telling me he will be okay and trying to predict outcomes - it doesnt help it just increases my frustration ten fold.
Everything already isnt okay and I just feel like screaming at everyone to just shut-up.  I dont want to have to hear or think about Ash in that way or any other kid. I dont even know what im doing anymore or if im headed in the right direction.  I feel stupid - I feel really stupid.  Like a fraud - I feel like a stupid mother who doesnt know whats wrong with her son and is just trying a bit of everything just in case.

Diary Entry - 29th May 2007

Asher had physio with the student until today.  I took Helei with me because I thought it was going to be a complete disaster. It actually turned out to be okay, I mean he did cry a bit but he didnt turn blue like last time.  The physio is on leave for 3 months so Jane will be taking over with Asher.  Its about 4 and a half weeks until his MRI so im getting quite anxious and nervous again.  Im also preparing myself if they dont have anymore answers.  I think one of the worst things is not knowing and not having any answers.  I have noticed a couple of changes in Ash though.  He is standing a little bit straighter and going down on flat feet a little more.

Diary Entry - 30th May 2007

Ash had hydrotherapy this morning at the hospital like he does every Wednesday.  The lasted couple of weeks its really sucked my energy, Im so tired after it, its actually a really good work-out.   Anyway the last two weeks he has also been wearing splints on his legs and shoes in the pool.  He seems to be doing really well in them - even standing up a little straighter.

He has developed, just in the last few weeks, a fear of heights.  He screams and screams and clings on for dear life whenever I put him up on the change table at home or at swimming.  He also screams if I put him on the bench at swimming which is closer to the ground.  He is genuinely terrified and I have no idea where his fear has stemmed from.  He hasnt fallen from anywhere at home nor anywhere else that I know of.

Diary Entry - 1st July 2007

Ash goes in for his MRI on Wednesday. I hope they still do it actually because he is on antibiotics and has bronchitis.  We have been waiting two months for this appointment so they better not change it.  Two weeks after that we have an appointment with his pediatrician to find out the test results from his MRI and blood that was taken.

Diary Entry - 4th July 2007

Well Asher had his MRI today.  He was such a brave little boy. As they were putting him to sleep, just before he was completely under he whispered "mummy?" - then struggled a bit and fell asleep.  Helei and I then went to get something to eat and wait for him to be finished.  It was nearly two hours before he came into the pediatric day unit where we were waiting for him. He was just lying down on his tummy on a bed and was still groggy and sleepy.  He just kept saying "mummy, hold, hold, hold" - it was very cute he just wanted me to cuddle him. After he'd woken up a bit he was allowed some cordial and then a cheese sandwich which he scoffed!!!.  I also bought a mandarin for him. At about 5 we were allowed to go home and he watched cartoons in front of the tv on his couch.

Waiting for his MRI

Diary Entry - 17th July 2007

Well Asher has his pediatrician appointment today and we got his results from the blood they took and the MRI.  It turns out he has mild Cerebral Palsy or Floppy Cerebral Palsy which is minimal motor damage, in his legs greater than his arms.  Which they use the word Dieplegia for.  This is due to scarring on his brain around the edges of the fluid sacks and also in his left frontal lobe.  Dr M said the damage probably occurred sometime between 3mths into my pregnancy anywhere up until the delivery.

I cant help thinking that maybe it was something I did that I could have prevented.  I guess we will never know.  Anyway the Dr also said that there is a possibility there is further scarring to the brain that the MRI couldn't pick up.  The only way we will know everything is by watching him develop and overcoming obstacles when and if they arise.
He also has an increased risk of developing seizures during his lifetime because of the scarring and because of the circuitury of his brain.  He may develop epilepsy, he may not.

Anyway the next step from here is to increase his therapy, physio and occupational therapy. Asher will be referred to an organisation called Novita which helps kids with special needs and gives extra help and support and care if he needs it later in life.  Asher will most likey be put in calipers which are brace things for his legs.  The Dr is optimistic but cautious that with the way he is going Ash may be walking in 6 months.  We will see Dr M again in 6 months also to continue monitoring his progress.

Anyway thats about all I can remember about what they said today.  It could have been worse so yeah.  Im glad we finally know what we are dealing with and Ash will now get all the help he needs. We are just going to be very busy!!  I feel a bit bad for Indie actually because of all the extra attention Ash needs, shes dragged along everywhere.  She'll be okay though, at least shes not at home doing the same boring things everyday.  Im actually really glad she is so good in the car, except when shes hungry.

The Asher Chronicles Part 5 - Diary Entries

Diary Entry - 4th January 2007

Asher had his first appointment with his Physio today to see how well he is progressing. The prognoses wasnt that good but all we can do is keep helping him with his excercises. She observed him and played with Ash for an hour. She said that he had improved slightly but was still weak. She said that he seems to have muscle weakness as well as low tone and she has written a letter to his pediatrician saying that further investigation is needed. She suggested that they do a muscle biopsy to see if it shows up anything.
Anyway we see the pediatrician on the 6th of February so I'll be able to ask him some questions and maybe they can give us some answers after testing. Ash also starts hydrotherapy swimming at The Childrens Hospital on the 31st of January.
I asked the physio when she thought he would walk and if she thought he would ever walk and she couldnt answer that. I think she couldnt because she cant say unless they know for sure what is wrong with his muscles. She did say that whatever the outcome the treatment would remain the same. So for now all we can do is help strengthen his muscles.

I mentioned about him standing on his toes and also that his ankles roll in. She said at this stage she wasnt to concerned about standing on his toes as long as he was standing and cruising furniture. Shes not entirely sure why he stands on his toes. Its a bit strange because when he is on his toes he's standing up straight but when he is on flat feet his ankles roll inwards and his bum sticks out and he leans over. She said both the toes and the ankles can be converted later on with splints. The physio has also leant him a brace which goes over both his legs like a mermaid. It gives him resistance and also helps him balance etc..

There is so much stuff to remember it seems things just continue to become more complex. Im feeling a bit sad and upset about the whole situation but I have hope that things will turn out positive in the end. Its just hard not knowing and also having a baby due any week now. I dont want ash to miss out on the time he needs because of it. I wish I could help him more or he could tell me how he is feeling. Im also sick of people telling me he's gonna be okay when I know he's not okay.

Diary Entry - 6th February 2007

Ash saw the pediatrician again today, Dr M. He is such a good Dr, I am so glad that Ash has him for a pediatrician.
Anyway he said that because Ash was progressing, although slowly, it was a good thing and that more tests were not yet needed.  He said that the physio was good but he was better and that Ash was doing well.  He said that the other tests were invasive and in order to do that it requires a general anesthetic and so that wasnt a good option and one that wasnt needed as yet.
He said Ashers ankles roll because he is floppy and that this winter they would put him in ankle boots to bring his feet down.  Usually they dont put them in shoes until they have been walking for 3mths but in his case he could start wearing them sooner to support his ankles. He also said that Ash is intellegent and reaching his other milestones even if it was a bit slow.  He said that Hypotonia is fairly common and because Ash has benign hypotonia that its just the pick of the draw when in comes to having it.

Ashy

The Asher Chronicles Part 4 - Diary Entries

Diary Entry - 6th November 06

Ash is well and has been really happy for the past week or so. He has an appointment with a pediatrician this week Thursday to see why he hasnt started walking yet - he is also due for his 18mth old vaccinations.

Diary Entry - 10th November 06

I have been having a pretty rough week and havent been feeling the best. On Thursday Asher has his appointment with the pediatrician to determine why he isnt walking yet or isnt even interested in it.
He has been disgnosed with Congenital Hypotonia Syndrome which is also known as low muscle tone or Floppy Baby Syndrome. Although its not all bad news and we have an answer finally but I am still very worried and disappointed and angry.

The pediatrician said that its just going to take him a while longer to walk, the goal at this stage is to have him walking by 22mths.
We have to put all his toys up where he'll have to reach for them, he can only ride his bike for 20mins a day max and he has to crawl everywhere.
We have to help him with his language by using picture cards and he might need physio at The Childrens Hospital.

I feel like a failure in some ways. I feel sad and angry that this has happened to him and us and im hoping that there are no further complications. If he's not walking by 22mths then they will have to do more tests on him. I am also angry that not one Dr picked this up sooner, especially since we have been to so many of them. I am also angry because I feel like I cant talk to anyone about this.

Diary Entry - 15th November 06

As part of Ashers development stuff its recommended that he does an hours swimming a day so I took him to the aquatic centre. I just have to get him used to the water first because he is scared of it, he clings to me like a monkey. Anyway he cried for the first 30 minutes and then after that he was happy in my arms and we walked around the pool just getting used to it.

Diary Entry - 18th December 06

I cant wait until Wednesday so that I can finish off my christmas shopping. Asher and I might go to Toy R Us and see if they have something. I really worry about his development and if what im doing is helping him. He is my number one priority at the moment, I just cannot fail at this. I am taking him swimming again tomorrow. He is really enjoying the water lately, he loves it!. He's really moving around a lot in the bath too and I have noticed his confidence grow and grow. To think that the first time I took him swimming he screamed and screamed and now he splashes and kicks about and even trys to drink the water!. He is doing so many things now. He can even feed himself with a fork really well. A spoon is still a bit messy but we'll tackle that one next!.

The Asher Chronicles - Part.3 - The Missing Pieces

To be honest I dont know why I cant find any diary entries of what happened in between the events that had already taken place. Maybe its because it was to hard to write, or maybe its because it was to hard to read.
Whatever the reason I guess it doesnt matter because it will always be clear as day in my mind. There are things I questioned but being a first time mother believed that a Dr knew best, despite that feeling deep down that something wasnt right and questioning mothers around me.
So I'll try my best to fill in the blanks up to the point we have currently arrived at.

On April 15th 2005 Asher was born at 2.30 in the afternoon. My labor was about 8hrs long with few complications. My waters were stained, which is something they left out of my hospital notes. Actually they didnt even leave it out they put no when it was a clear yes in his blue book where it specifically asks that question. Anyway this showed early on that he was in some distress. He had mild shoulder dystosia - yes babies can die from this in severe cases. So they had to use the suction to get him out quickly, which was used with such force that it took a patch of skin off the back of his head.
When he finally made it into this world I was so happy. Being a parent, first time or not, its easy to worry about your new bundle of joy. Its the times you stand over their crib after they are asleep listening for their next breathe and then the next..and not convinced still you put your hand gently to their chest to feel it rise and fall. I guess what im trying to say is that as a parent its easy to over-react sometimes and worry about minor ailments. That being said I guess thats why Drs seem to also find it easy to fob us off, reassure us its nothing and tell us to go home.

After my labor, baby in arms, I had to wait for the epidural to wear off, my legs were completely numb. So before I could be moved onto the ward I need my legs to wake up enough to stand. They were also waiting for a bed to free up. It was in this time that Kelly and Sam popped in to spy my llittle bub. Laying in the hospital crib wrapped in a tight little bundle I noticed his breathing was very loud and he was gurgling. I asked the nurse and she said sometimes babies have mucas still in them and find it hard to bring up. Anyway satisfied to an extent I took her answer as reassurance even though I had never heard a baby gurgle before. This did not stop either. Later back up in the ward for new mothers and babies Greg and I were marvelling at our boy when he turned blue, he had mucas coming from his mouth and his nose and couldnt clear an airway. I told Greg to run and get a nurse so he ran Asher to the nurses station and they took him down to the special care unit where he continued to have more episodes. If I was a little older and a little wiser I might have asked more questions, I might have demanded an explaination but I didnt and that is something that I regret. I dont know why it was never investigated further by the nurses or Dr, especially when he had repeated episodes.

On our day of discharge a pediatrician comes around to give the all clear to send you home so they came around and checked him out and he had a clicking hip. They said to have our GP check it again at our 6 week check up and we were sent home.

The first night at home was horrible. He was awake all night and I remember sitting in the lounge room crying in the rocking chair with him in my arms. I was so tired and I didnt know what to do.
The next evening he started turning blue again with the mucas and he was taking a really long time to feed and he would wake up completely wet through his clothes everywhere with sweat. So Greg and I worried took him to the emergency room.
We were in there the Drs asked a million questions and came back and forth and then asked more questions. It almost seemed like they didnt believe us and we felt stupid for having brought him in. So we ended up saying this is stupid we are just going to take him home. It was only then that they said no you were right for bringing him in and told us they were sending the cardiologist down to further investigate.
They did and they gave him an ecg or something like that. They put those little heart things all over him and also sent us up the the cardiology ward for further testing.
This happened regularly up until 6mths of ages as it was discovered that he had a hole in his heart. This was the reason he took so long to feed and woke up drenched in sweat. Thankfully at 6mths of age it had closed over and he needed no more monitoring.

At Ashers 6 weeks check up the Dr said that Asher hip was fine and she couldnt feel it clicking anymore. I mentioned to her that his shoulders felt like they were slipping out of the sockets and she said they were probably loose ligaments and they would get stronger as he got older.
To this day they never have because that was not the problem.

Asher only smiled at 7weeks old. He had no expression on his face at all until then. He never laughed until the end of June, and even then it was forced with little expression.

Asher still couldnt hold his head up at four months old. Still today when lifting him from lying on his back his head needs to be supported as it lags backwards.

Asher only squeeled for the first time at the start of August. It was then that he started testing his voice out and sucking both thumbs at once.

Asher had problems feeding at 2 and a half months - he was having problems suckling so he was changed to bottles which was less effort for him.

He has always projectile vomited - a lot - what would seem like everything you had just fed him.