Dear all,
Just received a letter last week to let us know that Mitch & Harry have been accepted into Elsie Ey Kindergarten for their pre-entry program. They will attend 2 3/4 hours once a week for 5 weeks and then start fulltime kindy which is 3 hours four days a week in the following term. I can't believe where the time has gone. It only seems a heartbeat ago that these tiny babies were struggling for survival and now they are heading out into the world. They are very excited! Mummy is a bit nervous. And Daddy is worried about Mummy.
The great thing is that they will have a support worker with them each day for pre-entry - to assist them with focussing on tasks, toiletting and generally learning the kindy routine. This was organised by the Principal prior to the team meeting last month as she felt the boys would benefit from additional support (and is at no additional cost to us).
When they start at kindy they will be evaluated to ascertain wheher they will qualify for the Possum Room - a room where they have one teacher to 8 students with special needs. Part of me wants this not to be necessary, but if this makes their lives a little easier then Kev & I are both very supportive of this option.
So think of me next Thursday when I drop the boys off for their first session. I am sure there will be tears. BUT I have a sneaking suspicion that they will be mine.
Hugs,
Lisa
Wednesday, August 20, 2008
Sunday, August 17, 2008
Happy Birthday Mitch & Harry
Our beautiful boys turned four on August 16th.
This was the first year that they really understood what was happening and we had to do a countdown of how many sleeps there were until the big day. This year was extra special because they got to spend it with Nana & Grandpa from Queensland. They had a lovely party at Hungry Jacks and even though the weather was dreadful the boys and their little friends had a wonderful time.
Next week is their cousin Liam's birthday and they are now counting down to that party! Then the three boys will share a combined family party at Gran & Grandad's place.
Here are some photos from their big day...
Harry and his dinosaur from Nana & Grandpa
Mitch and his special construction blocks from Nana & Grandpa
The boys enjoy the icing for their birthday cupcakes
Mitch has cuddles with Grandpa
Yummy birthday cup cakes
Harry enjoyed his 5 cup cakes!
Cuddles with Nana
Thank you to everyone who wished the boys a happy birthday :-)
Hugs,
Lisa
This was the first year that they really understood what was happening and we had to do a countdown of how many sleeps there were until the big day. This year was extra special because they got to spend it with Nana & Grandpa from Queensland. They had a lovely party at Hungry Jacks and even though the weather was dreadful the boys and their little friends had a wonderful time.
Next week is their cousin Liam's birthday and they are now counting down to that party! Then the three boys will share a combined family party at Gran & Grandad's place.
Here are some photos from their big day...
Harry and his dinosaur from Nana & Grandpa
Mitch and his special construction blocks from Nana & Grandpa
The boys enjoy the icing for their birthday cupcakes
Mitch has cuddles with Grandpa
Yummy birthday cup cakes
Harry enjoyed his 5 cup cakes!
Cuddles with Nana
Thank you to everyone who wished the boys a happy birthday :-)
Hugs,
Lisa
Saturday, August 2, 2008
Thank you...
Just a quick note to say thank you to everyone who has contacted us over the past week. We feel truly blessed to be surrounded by so much love.
The boys are coming up with new phrases all of the time...
Mitch's latest - "Look you guys, just stop picking on me okay"
In response to being tickled
Harry's latest - "Mummy I am a baby banana and bananas have cheeks that need to be kissed"
And my favourite expression?
"muddlepops" - muddy puddles (grin)
Hugs,
Lisa
The boys are coming up with new phrases all of the time...
Mitch's latest - "Look you guys, just stop picking on me okay"
In response to being tickled
Harry's latest - "Mummy I am a baby banana and bananas have cheeks that need to be kissed"
And my favourite expression?
"muddlepops" - muddy puddles (grin)
Hugs,
Lisa
Friday, July 25, 2008
A medical update on the boys...
Today we had a team meeting with the hospital child development unit team. Attending were the physio, OT, speech, paediatrician, kindy director and a paed reg. Each of the team members who have treated the boys over the past 12 months presented their findings on the boys and their views of ongoing needs.
Speech - both boys have severe receptive and expressive language disorders. They cover this by deflecting the conversation when they can't understand and as a consequence most people don't realise the depth of their language problem. The speech therapist also commented that they have areas of very good knowledge and understanding, but the basic building blocks of understanding and expressing themselves are disordered. She stated this will be a lifelong problem - that they will learn, but that this will take a great deal of effort on their part.
OT - she noted that both boys are extremely busy and still struggle to focus on activities. Harrison in particular is easily distracted and has difficulty working out the "voice of authority" in the room. She discussed their sensory issues and stated that they have significant sensory problems at times which typically manifest with meltdowns. She noted that their poor muscle tone means they tire very easily and that Mitchell can only cope with standing in one place for 5 or 10 minutes. Their fine motor skills are poor and they struggle with holding a pen or any activities which invole dexterous movements. She also commented that both boys have difficulty with motor planning and as a consequence tend to struggle with physical activities. She stated that this is a lifelong problem and that as they progress through school they will need a lot of support and parental involvement. On the positive side she commented on how far the boys have come with learning to sit for activities and follow instructions.
Physio - she noted that both boys have very low tone and poor core strength which means that any gross or fine motor activity takes a lot of effort. She voiced concerns that they have not significantly improved their muscle strength, gait or general movement over the past 12 months. Although she acknowledged that there has been a negative finding for Cerebral Palsy, she is of the belief that their problems are very similar to those with Ataxic CP and she feels this diagnosis may be made later. She stated that these problems are lifelong and will become more self evident as the boys grow older (in comparison to their peers).
Paed - acknowledged all of the therapists' assessments, but stated that both boys present as very bright and personable. He discussed the possibility of ADD or ADHD and stated he would not diagnose these kind of problems at this young age - and that meds to control aspects of these disorders are not particularly effective in this young age group, with the side effects generally outweighing the benefits.
Kindy - the director of the kindergarten attended and told us that she has applied for additional support hours for the boys and she is endeavouring to get them into a session with a small group where they will be with neurotypical children and have additional support. She is also seeking government approval for the boys to attend an extra term of full time kindy (4 x 1/2 day sessions/ week). Usually children receive 4 terms of full time kindy - and she hopes for 5 or even 6 terms for the boys. She was very encouraging about the supports the kiindy can offer and they have a number of children with special needs who already attend the kindy in mainstream and special groups.
The conclusion is that the boys will be referred to NOVITA which offers OT/ Physio and special groups for children with disabilities. They are hoping that NOVITA can offer the boys (and us) extra support at no extra cost. Speech therapy will be provided by DECS (Department of Education and Community Services) and we can supplement this with private therapy if required. Once the boys are accepted by NOVITA then they will be discharged from the hospital's CDU. The paediatrician will continue to coordinate their care.
Sorry to be so clinical, but this is the best way for me to explain it. At the moment Kev and I feel totally overwhelmed. Its not that we have been told anything we didn't know, it's just to have it all spelled out in detail is confronting. We are so grateful for the care and concern the staff have shown our boys (and us). So now we just have to pick ourselves up and move forward. On a lighter not I came home and both boys insisted I join them in Harry's bed for a "triple cuddle" - kind of puts it all in perspective :-)
Lisa
Speech - both boys have severe receptive and expressive language disorders. They cover this by deflecting the conversation when they can't understand and as a consequence most people don't realise the depth of their language problem. The speech therapist also commented that they have areas of very good knowledge and understanding, but the basic building blocks of understanding and expressing themselves are disordered. She stated this will be a lifelong problem - that they will learn, but that this will take a great deal of effort on their part.
OT - she noted that both boys are extremely busy and still struggle to focus on activities. Harrison in particular is easily distracted and has difficulty working out the "voice of authority" in the room. She discussed their sensory issues and stated that they have significant sensory problems at times which typically manifest with meltdowns. She noted that their poor muscle tone means they tire very easily and that Mitchell can only cope with standing in one place for 5 or 10 minutes. Their fine motor skills are poor and they struggle with holding a pen or any activities which invole dexterous movements. She also commented that both boys have difficulty with motor planning and as a consequence tend to struggle with physical activities. She stated that this is a lifelong problem and that as they progress through school they will need a lot of support and parental involvement. On the positive side she commented on how far the boys have come with learning to sit for activities and follow instructions.
Physio - she noted that both boys have very low tone and poor core strength which means that any gross or fine motor activity takes a lot of effort. She voiced concerns that they have not significantly improved their muscle strength, gait or general movement over the past 12 months. Although she acknowledged that there has been a negative finding for Cerebral Palsy, she is of the belief that their problems are very similar to those with Ataxic CP and she feels this diagnosis may be made later. She stated that these problems are lifelong and will become more self evident as the boys grow older (in comparison to their peers).
Paed - acknowledged all of the therapists' assessments, but stated that both boys present as very bright and personable. He discussed the possibility of ADD or ADHD and stated he would not diagnose these kind of problems at this young age - and that meds to control aspects of these disorders are not particularly effective in this young age group, with the side effects generally outweighing the benefits.
Kindy - the director of the kindergarten attended and told us that she has applied for additional support hours for the boys and she is endeavouring to get them into a session with a small group where they will be with neurotypical children and have additional support. She is also seeking government approval for the boys to attend an extra term of full time kindy (4 x 1/2 day sessions/ week). Usually children receive 4 terms of full time kindy - and she hopes for 5 or even 6 terms for the boys. She was very encouraging about the supports the kiindy can offer and they have a number of children with special needs who already attend the kindy in mainstream and special groups.
The conclusion is that the boys will be referred to NOVITA which offers OT/ Physio and special groups for children with disabilities. They are hoping that NOVITA can offer the boys (and us) extra support at no extra cost. Speech therapy will be provided by DECS (Department of Education and Community Services) and we can supplement this with private therapy if required. Once the boys are accepted by NOVITA then they will be discharged from the hospital's CDU. The paediatrician will continue to coordinate their care.
Sorry to be so clinical, but this is the best way for me to explain it. At the moment Kev and I feel totally overwhelmed. Its not that we have been told anything we didn't know, it's just to have it all spelled out in detail is confronting. We are so grateful for the care and concern the staff have shown our boys (and us). So now we just have to pick ourselves up and move forward. On a lighter not I came home and both boys insisted I join them in Harry's bed for a "triple cuddle" - kind of puts it all in perspective :-)
Lisa
Wednesday, July 9, 2008
Just for a laugh...
Love this clip which I found on YouTube.
For all the scrappers out there this one is for you :-)
For all the scrappers out there this one is for you :-)
Monday, July 7, 2008
Being a Mum...
It is now two years since my own dear Mum died. I miss her every day. Harry in particular talks about his Gran and he often asks to see photos of her. I don't think he completely understands at this stage, but he tells people he loves his Gran and she is in the sky and in our hearts. Mum often talked about her fear that the boys wouldn't remember her, but in my own way I am trying to create a memory for them of their Gran.
Thinking about my Mum got me thinking about my own experiences of being a Mum. And I realised that my mothering style is a reflection of everything that my Mum taught me. Sometimes I catch myself saying something and I have to smile, because I remember Mum saying the same things to me as a small child. Mum has been the single biggest influence in my life and I only hope that I can give my children the kind of childhood she gave me.
Family is so important to me. That is why I feel so blessed to have a close relationship with my family. I may not see everyone as often as I like or I may not keep in contact as often as I should, but they are often in my thoughts. I look at my beautiful boys learning about the world and sharing special times with their cousins and I am truly happy. These precious times my Mum would loved to have shared. And while there is sadness that she can't be here with us in a physical sense, I know that the life she helped create for me will continue to influence myself, Mitch & Harry and future generations.
Being a Mother is the most important thing in the world to me. And I thanks my beautiful Mum for showing me the way.
With much love,
Lisa
Sunday, July 6, 2008
Feeding the cows and other great adventures...
Don't you just love these photos! Harry is clearly loving his first experience of feeding cows. And Mitch is sleeping through the entire process! This was taken a few weeks ago on my Uncle M's 60th birthday. We all went out for a beautiful meal and then afterwards headed back to Uncle M's and Auntie M's farm. The boys are still talking about it.
Each week sees another small step forward. Harry is trialling wearing underpants at night and he is very excited with being such a "big boy". It is not unusual for him to loudly announce to anyone that "now I do poos in toilet" - which I am sure thrills others no end. Both of the boys' speech is certainly improving and while they do have obvious difficulties with understanding, they really try hard to express themselves. Only over the past couple of months has Harry been able to really tell us what he wants without us taking forever with multiple guesses to work out what he is saying. And as a result he has become much more responsive to us and the meltdowns are far less frequent. Apart from that Mitch has taken to his glasses like a real trooper - which is great and he suddenly looks so grown up and serious.
The biggest news is that in less than 2 months both boys start early entry kindy. It is hard to believe that our little men are grwoing up so fast! I am sure they will love kindy. Mummy however may find it a bit of a challenge (grin). They will start off with 90 mins once a week for the last 5 weeks of term 3 and then will move into pre-entry. They are doing a extra term to aid in assessing what support they may need in the full time kindy setting. At this stage we are waiting for the team meeting and will take it from there.
Some of you may notice I am posting this at 3.15 am and wonder why I am not in bed like all sane people! Well unfortunately I can't seem to sleep since I started trying to get to bed earlier (lights off by 11.30pm). I am sure this is just my body's way of saying "hey you have knocked me about with all those late nights don't just think I am going to do what you want" (grin). Hopefully this will improve soon! Because I certainly need all the energy I can get running around after Mitch & Harry.
Sending lots of love to you all,
Lisa
Friday, June 27, 2008
A quick update...
I just realised I need to update a few things...
Firstly I was lucky enough to be chosen to be in the final for the Scraptacular 2008 for Scrapbooking 4 Less - Toni's beautiful layouts saw her declared the winner. Congrats Toni and all the other entrants. It was a lot of fun!
Also my cousin and his wife have had a beautiful little boy - congratulations S&S on the birth of your beautiful boy. He is gorgeous.
Finally unfortunately our meeting with the team for the boys therapists, paediatrician and kindy was cancelled today. I had myself all prepared for today, but it wasn't to be. Makes me realise how in all my years in hospital I truly didn't understand how much the health system seems to give families the run around. But no use in complaining (any more than I have) and we just have to wait for another appointment... hopefully before the boys leave Uni (grin).
Oh and this is a layout of the boys visit to the Big Rocking Horse with a little friend of theirs :-)
Hope everyone has a lovely weekend,
Hugs,
Lisa
Wednesday, June 25, 2008
Mitchell's Glasses
As promised here are some photos of Mitch with his new glasses. He is actually very good at wearing them, but now and then he rebels and you find them carefully placed on the bookcupboard or a table. They obviously are helping him because he doesn't squint as much and doesn't stand on top of the TV anymore.
Hugs,
Lisa
Friday, June 6, 2008
Speech therapy update
Well a fortnight ago the boys had their formal speech assessment in preparation for the Development Unit Team meeting next month. And the abridged version is that both have been diagnosed with a severe receptive and expressive language disorder and they tested in the first percentile for their age, meaning that if 100 children were
tested 99 children would score better than them. I actually took this news in my stride (which surprised me) and I took the literature I was given and left the rooms.
My poor hubby is devastated - he said he thought that "one day the boys would be fine" and this has hit him really hard. I have tried to emphasise to him that they are still our two beautiful boys who are social butterflies and love life, but
it is hard. Mitch & Harry are of course oblivious and they told me they "did a good job" :-)
So now it just needs to sink in...
The Speechie was great and took ages to explain this all to me. She agrees with my belief that the boys have microscopic damage done to their brains as a result of the extreme prematurity (even though all CTs etc have been clear). And she explained that the problems the boys have with their speech can never be cured, but can be managed to varying degrees.
On a happier note - Mitchell has his glasses and he loves them. The firt time he put them one he turned around and said to me... "Mummy I can see. Now I can read books!". He is very good with keeping them on and carefully puts them on if they fall off. At this stage the only problem we have is when Harry and Mitch have a fight - then the glasses seem fair game :-(
If I get myself organised I will post a photo of Mitch with his glasses - he looks so grown up!
Sending much love to our family and friends.
Even though we may not be in touch often you are in our thoughts and hearts,
Love Lisa
tested 99 children would score better than them. I actually took this news in my stride (which surprised me) and I took the literature I was given and left the rooms.
My poor hubby is devastated - he said he thought that "one day the boys would be fine" and this has hit him really hard. I have tried to emphasise to him that they are still our two beautiful boys who are social butterflies and love life, but
it is hard. Mitch & Harry are of course oblivious and they told me they "did a good job" :-)
So now it just needs to sink in...
The Speechie was great and took ages to explain this all to me. She agrees with my belief that the boys have microscopic damage done to their brains as a result of the extreme prematurity (even though all CTs etc have been clear). And she explained that the problems the boys have with their speech can never be cured, but can be managed to varying degrees.
On a happier note - Mitchell has his glasses and he loves them. The firt time he put them one he turned around and said to me... "Mummy I can see. Now I can read books!". He is very good with keeping them on and carefully puts them on if they fall off. At this stage the only problem we have is when Harry and Mitch have a fight - then the glasses seem fair game :-(
If I get myself organised I will post a photo of Mitch with his glasses - he looks so grown up!
Sending much love to our family and friends.
Even though we may not be in touch often you are in our thoughts and hearts,
Love Lisa
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