Sue has taken Emily this afternoon to a geneticist appointment that was made ages ago.
Someone who gets paid to know what they're talking about suggested that we might want to clear with this professional to ensure that Holly won't become autistic, or at least review the likelihood.
We have since been told that the correlation between autism and genetics (or hereditary genetics anyway) is about as sound as not being to conceive while breastfeeding - i.e. complete hokum. Although, I'd like to explore further the theory that more scientists and uni profs (the "smart people"), etc. have autistic kids than the general population.
Still, the appointment was made, so it's probably worthwhile to see at least what the geneticist has to say on any matter regarding Emily. I'm just quite sure whatever is discussed it won't be about autism... or at least we'll be told that Emily is autistic because Sue and I are really smart.
Thursday, 19 April 2012
Monday, 2 April 2012
Holly is home. For good.
 |
| Holly as she is now. At home. |
It's been quite the trying month, starting with Holly's cardiac arrest on the 3rd of March and culminating in her being well enough to be discharged today, albeit with a bevy of drugs and a physio plan.
It's going to take some adjusting to not having the hospital around us. For Sue, Holly and myself it will be that safety net the NHS provides, with doctors and nurses only a raised voice away. For Emily, it will be having her family back in one place - mummy and daddy in the same building, sleeping in the same bed and "the baby" back to disrupt her rule of the roost.
In the last few hours, Emily hasn't been as ambivalent towards Holly as she normally has. We've even got her to give Holly a kiss which she has willingly done. I don't believe this is the start of any great thawing of diplomatic relations yet, but it might at least be a small amount of acceptance on Emily's behalf.
Now with Holly back and the family unit together again, we're about to attempt our next great hurdle - taking Holly on an airplane. We've got a week booked in Northern Ireland. The doctors and nurses see no reason Holly CAN'T go and we have an introductory letter for any hospital or doctor we need to contact outlining the story so far.
Now that Holly has spend 1/3 of her life in a hospital (including her initial birth stint) we're hoping not to have to see the inside of one for a long, long time.
Friday, 23 March 2012
EarlyBird information session for Emily
Sue came last night for the first time since Holly's incident on the 3rd of March. We had scheduled ourselves to go to an information session for an EarlyBird course put on by the National Autistic Society that we want to attend.
For 90 minutes we were able to forget our woes regarding Holly, and remember our woes regarding Emily.
The course is going to encompass 12 weeks, including 8 group sessions and 4 home visits.
From everything we saw last night, we can't get onto the course soon enough.
Monday, 12 March 2012
Incredibly hard times for Holly
As I type this, we've well and truly entered week 2 of Holly being in hospital.
We've reached a few milestones in that time, but the hard fact is - she's still in hospital.
Sue and I have managed to keep people updated on Facebook with daily updates, which has been a Godsend. In the "olden days", we would have had to maintain a list of people to contact and ring round to give them all an update. Now we post on Facebook and watch the "likes" and replies come in, so we can get back to the very necessary job of worrying.
For the uninitiated, and to make a reference in this blog, here are the facts from the last 10 days.
On Saturday 3 March, we were shopping in B&Q and Holly was feeling a bit aggravated. She was in the Bush Baby carrier and Sue was attempting to feed her as we walked around the lighting section. After a few minutes, Holly went quiet so we thought she'd fallen asleep after having a quick drink.
When we got to the car a few minutes later, she was blue and lifeless and her eyes were open, rolling back into her head. I sat in the back with her and called 999, while Sue drove like a woman who's child was about to die, all the way to the local hospital... about 10 minutes away.
On the way, Holly eventually did die in my arms.
Once we got to the hospital it was a mad rush for the resuscitation unit to bring her back to life, which they eventually did. It was touch and go how well she was going to be, but they were eventually able to give us some optimistic news.
The retrieval team from St. Thomas' hospital in Lambeth eventually arrived and whisked Sue, Holly and myself to the PICU ward at Evelina Children's Hospital.
Over the next few days, tests were run to determine if she was ill on that Saturday; drugs were given to help her and her temperature was kept low to keep brain function to a minimum and give it time to recover.
She's been having intermittent seizures which are to be expected given the "insult" (their words) her brain has been dealt and we just have to wait to see what kind of brain damage she'll be left with.
Certain milestones have been reached which we've been told we can view as positive. She had her ventilator removed on Thursday, and she was discharged from ICU on Friday. She's now in the neuro ward in the hospital where the care is not 1 to 1, 24 hours a day, but they are better suited to dealing with children with neurological issues.
This week is going to be a very difficult week as the doctors and nurses play around with drug levels to try and find out which ones and which levels work best for Holly.
All this time, Sue and I have to endure the unknown - will she cry, will she coo, will she focus on us or objects, how much brain damage is there, what is temporary and what is permanent. It's all a guessing game and it's made all that much harder as the only one who can tell us any answers is Holly, and she's going to take time.
Sue and I both feel that our lives are in limbo at the moment and they are. We've received the most incredible support from almost everyone we know. Our friend Mo has given us a bolthole to stay at while we go through this; our other friends have dropped in to see us and Holly and provided us with food and drink to offset the crazy prices at the hospital. The well wishes from people on the internet and stories of other children with epilepsy or similar situations has given us hope that we can help Holly overcome this.
I feel like the entire Internet is rooting for us, which is a bit selfish I guess, as I saw 19 other beds in ICU that needed the love and support we were receiving as well.
We've received one miracle - having our baby come back to life. We're just hoping that lightening can strike twice and Holly recovers from this as much as is possible.
Thank you again to everyone who's got in touch, it's kept us going.
 |
| Holly shortly after being admitted to ICU. |
We've reached a few milestones in that time, but the hard fact is - she's still in hospital.
Sue and I have managed to keep people updated on Facebook with daily updates, which has been a Godsend. In the "olden days", we would have had to maintain a list of people to contact and ring round to give them all an update. Now we post on Facebook and watch the "likes" and replies come in, so we can get back to the very necessary job of worrying.
For the uninitiated, and to make a reference in this blog, here are the facts from the last 10 days.
On Saturday 3 March, we were shopping in B&Q and Holly was feeling a bit aggravated. She was in the Bush Baby carrier and Sue was attempting to feed her as we walked around the lighting section. After a few minutes, Holly went quiet so we thought she'd fallen asleep after having a quick drink.
When we got to the car a few minutes later, she was blue and lifeless and her eyes were open, rolling back into her head. I sat in the back with her and called 999, while Sue drove like a woman who's child was about to die, all the way to the local hospital... about 10 minutes away.
On the way, Holly eventually did die in my arms.
Once we got to the hospital it was a mad rush for the resuscitation unit to bring her back to life, which they eventually did. It was touch and go how well she was going to be, but they were eventually able to give us some optimistic news.
The retrieval team from St. Thomas' hospital in Lambeth eventually arrived and whisked Sue, Holly and myself to the PICU ward at Evelina Children's Hospital.
Over the next few days, tests were run to determine if she was ill on that Saturday; drugs were given to help her and her temperature was kept low to keep brain function to a minimum and give it time to recover.
She's been having intermittent seizures which are to be expected given the "insult" (their words) her brain has been dealt and we just have to wait to see what kind of brain damage she'll be left with.
Certain milestones have been reached which we've been told we can view as positive. She had her ventilator removed on Thursday, and she was discharged from ICU on Friday. She's now in the neuro ward in the hospital where the care is not 1 to 1, 24 hours a day, but they are better suited to dealing with children with neurological issues.
This week is going to be a very difficult week as the doctors and nurses play around with drug levels to try and find out which ones and which levels work best for Holly.
All this time, Sue and I have to endure the unknown - will she cry, will she coo, will she focus on us or objects, how much brain damage is there, what is temporary and what is permanent. It's all a guessing game and it's made all that much harder as the only one who can tell us any answers is Holly, and she's going to take time.
Sue and I both feel that our lives are in limbo at the moment and they are. We've received the most incredible support from almost everyone we know. Our friend Mo has given us a bolthole to stay at while we go through this; our other friends have dropped in to see us and Holly and provided us with food and drink to offset the crazy prices at the hospital. The well wishes from people on the internet and stories of other children with epilepsy or similar situations has given us hope that we can help Holly overcome this.
I feel like the entire Internet is rooting for us, which is a bit selfish I guess, as I saw 19 other beds in ICU that needed the love and support we were receiving as well.
We've received one miracle - having our baby come back to life. We're just hoping that lightening can strike twice and Holly recovers from this as much as is possible.
Thank you again to everyone who's got in touch, it's kept us going.
Sunday, 26 February 2012
Coo Coo ca Choo
I realise I write primarily about Emily and that Holly will most likely come to resent me in later years for this. However, Em was the first and an ongoing blog was interesting (and I had time - which seems to be less the case now with two). Also, now that Em is "special", I hope that some of what I write about will help other families in similar situations.
Now that's out of the way - Holly's started cooing and she's becoming really alert. Whenever she sees me, she smiles and I can spend minutes mouthing hello to hear her coo it back, making similar mouth movements.
When you have your second child, you tend to forget the joys of milestones, but this is a really nice one. I'm glad that Holly is becoming more attentive and focused.
In other news, we recently got Holly weighed and heighted. She's on the 91st percentile for height, so it looks like we've got a couple of Amazonian sisters in the family. Be interesting to see if this peters out or if they both end up towering over Sue and I.
Now that's out of the way - Holly's started cooing and she's becoming really alert. Whenever she sees me, she smiles and I can spend minutes mouthing hello to hear her coo it back, making similar mouth movements.
When you have your second child, you tend to forget the joys of milestones, but this is a really nice one. I'm glad that Holly is becoming more attentive and focused.
In other news, we recently got Holly weighed and heighted. She's on the 91st percentile for height, so it looks like we've got a couple of Amazonian sisters in the family. Be interesting to see if this peters out or if they both end up towering over Sue and I.
Autistic dinner conversation
Went out for dinner last night with friends and the subject turned to children. Having some around the table deal with special needs children as their job, the conversation was soon high-jacked by discussions about Emily and how she's doing, what we could do better for her, what help is out there we need to get, etc.
It was quite a lively, informative chat and Sue and I took a lot away from it. I did feel continually guilty that we basically took over the conversation with talk about our special needs child, but I think the others we happy to have the discussion and to offer their help.
I guess if you have NeuroNormal children, it can get a bit boring as there's nothing untoward to discuss, no help above and beyond that you need. Just talk about dance recitals and report cards. I guess.
It was quite a lively, informative chat and Sue and I took a lot away from it. I did feel continually guilty that we basically took over the conversation with talk about our special needs child, but I think the others we happy to have the discussion and to offer their help.
I guess if you have NeuroNormal children, it can get a bit boring as there's nothing untoward to discuss, no help above and beyond that you need. Just talk about dance recitals and report cards. I guess.
Saturday, 25 February 2012
Lost a tooth
Well this was a bit odd.
Emily lost a tooth tonight, a few years before she should have, according to websites.
She'd been complaining for a while whenever she bit into an apple, but we just put it down to mouth ulcer or similar.
Sue thought her tooth was loose earlier today and on her recent trip back from her bookshelf, she was missing a tooth and had quite a bloody mouth.
Not really sure what's going on as Em doesn't eat that much sweet stuff (barring apples and pears). Conjecture includes genetically "interesting" teeth, or perhaps some hidden trauma to that particular tooth that was missed (someone knocking it perhaps).
Whatever the case, we're just hoping that Em's gappy smile won't last long.
Emily lost a tooth tonight, a few years before she should have, according to websites.
She'd been complaining for a while whenever she bit into an apple, but we just put it down to mouth ulcer or similar.
Sue thought her tooth was loose earlier today and on her recent trip back from her bookshelf, she was missing a tooth and had quite a bloody mouth.
Not really sure what's going on as Em doesn't eat that much sweet stuff (barring apples and pears). Conjecture includes genetically "interesting" teeth, or perhaps some hidden trauma to that particular tooth that was missed (someone knocking it perhaps).
Whatever the case, we're just hoping that Em's gappy smile won't last long.
Thursday, 9 February 2012
Behaviour workshop
Had our second ASD workshop at Emily's school today.
It was quite informative, and we had chocolate hob nobs with our tea, so that was a bonus.
We discussed behaviour and rewards and the usual things you'd talk about regarding any child.
With someone like Emily though, the key seems to be visuals. As she has delayed speech and sometimes can't fathom what we're talking about, it's good to find a common point - usually an image or photo - to get either her or our point across.
We also need to ensure that we get to the bottom of any behavioural issues. If she doesn't want to eat breakfast, instead of yelling and throwing the bowl across the room (something we'd never do), we have to empathise with Emily and try to get into her head. Why doesn't she want to eat now? What is a higher priority?
Sometimes, a PECS-powered schedule can come in handy, so Emily doesn't have to think that eating will last forever. We can show her - eat, wash hands/face, read book (i.e. reward).
It's a hard slog and sometimes it dawns on me how much work Sue and I actually have ahead of us.
It was quite informative, and we had chocolate hob nobs with our tea, so that was a bonus.
We discussed behaviour and rewards and the usual things you'd talk about regarding any child.
With someone like Emily though, the key seems to be visuals. As she has delayed speech and sometimes can't fathom what we're talking about, it's good to find a common point - usually an image or photo - to get either her or our point across.
We also need to ensure that we get to the bottom of any behavioural issues. If she doesn't want to eat breakfast, instead of yelling and throwing the bowl across the room (something we'd never do), we have to empathise with Emily and try to get into her head. Why doesn't she want to eat now? What is a higher priority?
Sometimes, a PECS-powered schedule can come in handy, so Emily doesn't have to think that eating will last forever. We can show her - eat, wash hands/face, read book (i.e. reward).
It's a hard slog and sometimes it dawns on me how much work Sue and I actually have ahead of us.
Tuesday, 7 February 2012
My mental freakout
Sue and I have been quite good at keeping it together with regards to Emily and her disorder.
When Em was diagnosed, it was badly kept secret, so it didn't phase us ALL that much. However, sometimes I let my guard down and give my imagination free reign to think what it likes. This is dangerous.
The first rule of ASD is that no two people are the same, thus comparing Em to people or characters is a childish folly. That, however, doesn't stop the imagination from doing so.
I got to a point in my mind where Emily was an ageing spinster, without a family as she unable to hold a relationship, living hand to mouth and not able to hold down a job. It was a dark place that I didn't want to find myself in, as it was an amalgam of situations I'd gleamed from literature, conversations and pop culture as opposed to extrapolating on any reality that's actually based on Emily.
I'm confident that with Emily's attention to detail, her memory and her love of books we could have an amazingly successful little person on our hands as opposed to a "ward of the state".
When Em was diagnosed, it was badly kept secret, so it didn't phase us ALL that much. However, sometimes I let my guard down and give my imagination free reign to think what it likes. This is dangerous.
The first rule of ASD is that no two people are the same, thus comparing Em to people or characters is a childish folly. That, however, doesn't stop the imagination from doing so.
I got to a point in my mind where Emily was an ageing spinster, without a family as she unable to hold a relationship, living hand to mouth and not able to hold down a job. It was a dark place that I didn't want to find myself in, as it was an amalgam of situations I'd gleamed from literature, conversations and pop culture as opposed to extrapolating on any reality that's actually based on Emily.
I'm confident that with Emily's attention to detail, her memory and her love of books we could have an amazingly successful little person on our hands as opposed to a "ward of the state".
Saturday, 4 February 2012
Autism chat
Sue had gone onto the national autism website and arranged for a parent to parent call to talk to us about autism. I personally think this is a great idea, having parents in the same boat talking to each other, knowing we're not alone in the world.
We had great chat for about 90 minutes, and Sue and I both felt at the end that we were doing what we could for Emily; giving her the care we could and reaching out to those we could.
During the call, the usual pop culture references popped up again - Temple Grandin and Sheldon Cooper from Big Bang Theory. We also threw Abed from Community into the mix of people and characters with the disorder.
The call didn't solve anything, and it was never designed to, but Sue and I felt more at ease with the situation having been able to discuss it and I guess that's probably the point.
We had great chat for about 90 minutes, and Sue and I both felt at the end that we were doing what we could for Emily; giving her the care we could and reaching out to those we could.
During the call, the usual pop culture references popped up again - Temple Grandin and Sheldon Cooper from Big Bang Theory. We also threw Abed from Community into the mix of people and characters with the disorder.
The call didn't solve anything, and it was never designed to, but Sue and I felt more at ease with the situation having been able to discuss it and I guess that's probably the point.
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