What some people would call taking a couple of steps, stumbling and falling over, we're considering a triumph.
Holly has begun to take independent steps, which can only mean proper "walking" is on it's way. By proper steps, I mean she puts one foot in front of the other without being aided to stand and then (if we're lucky) we get the second foot moving in a walking motion followed (if we're REALLY lucky) by a third footstep. Then, there's the invariable wobble and drop.
When I picked her up from nursery today they were so excited to tell me of this. Apparently Holly was quite self congratulatory as well (in that hiccup laugh that she does so well).
The downside of this (if there is one) is that she's getting quite impatient with people carrying her. She's squirms out of your arms (if you're not lucky) and wants to walk with you holding her arms.
She is hands down the most determined small child I have ever come across (and a number of her key workers have said the same thing).
Rather curious how the flight to Australia is going to pan out later this month.
Showing posts with label holly. Show all posts
Showing posts with label holly. Show all posts
Monday, 9 December 2013
Friday, 25 October 2013
Doctor's notes about Holly
Sue went to see Holly's paediatrician earlier this month, and we received the notes from that meeting in the post today. It still floors me that the letter was sent out to 11 different people/departments - all for one little girl!
As Holly is progressing and showing noticeable signs of improvement, we still think she's doing well. Reading through the notes, I realise that I may be deluding myself. There's a lot of development delay which isn't all that apparent to me, because the only yardstick I have to compare to is Autism. Also, seeing the phrase "Diagnosis: Cerebral Palsy" really makes it a lot more real.
Apparently various things that Holly is doing are at 15 month levels or 18 month levels. She's behind, but only by a few months (as she's only 22 months old tomorrow). This is really why this early intervention is key. I can only imagine how far she'd be behind if we DIDN'T have 11 departments/people working on our team.
The notes did point out that she's a happy little girl, which is very true (apart from when she's tired cranky or teething) and that good progress is being made.
Regardless of where she is on the months development scale, I'm still proud of my little girl and happy to have her here at all.
As I type this, she's happily sitting next to me playing peekaboo by herself and saying "oh dear" while I make dinner. I guess it's time I sign off and ask (to noone in particular) "Where's Holly?"
Until next time.
As Holly is progressing and showing noticeable signs of improvement, we still think she's doing well. Reading through the notes, I realise that I may be deluding myself. There's a lot of development delay which isn't all that apparent to me, because the only yardstick I have to compare to is Autism. Also, seeing the phrase "Diagnosis: Cerebral Palsy" really makes it a lot more real.
Apparently various things that Holly is doing are at 15 month levels or 18 month levels. She's behind, but only by a few months (as she's only 22 months old tomorrow). This is really why this early intervention is key. I can only imagine how far she'd be behind if we DIDN'T have 11 departments/people working on our team.
The notes did point out that she's a happy little girl, which is very true (apart from when she's tired cranky or teething) and that good progress is being made.
Regardless of where she is on the months development scale, I'm still proud of my little girl and happy to have her here at all.
As I type this, she's happily sitting next to me playing peekaboo by herself and saying "oh dear" while I make dinner. I guess it's time I sign off and ask (to noone in particular) "Where's Holly?"
Until next time.
Saturday, 3 August 2013
Intense therapy for Holly
At this week's physio session for Sue, it was decided that due to Holly's progress no further intense sessions were required.
This was wonderful news, as not only does it mean Holly's progress is going well, we also get to reclaim some holiday time and have a break together! Whether this means we try and steal some of the fading embers of the summer and go away or book a couple of weeks at Christmas, we've now been given a get out of jail free card.
The only caveat we were given was to take Holly's walker contraption wherever we go, so we can keep up with her walking therapy. This thing is a massive thing and could potentially limit any holidays to staycations, but that's not really a problem.
This also means we don't have to wait and see about the Bobarth Centre therapy sessions in North London.
In case you were wondering, Holly IS making wonderful progress. She hates lying down and if you pick her up to sit up, she will throw a strop if you don't pick her up to let her walk around. She's still really weak in her trunk but the dedication and strong-mindedness is there to want to do it. More home therapy around trunk strengthening is really needed and hopefully she will eventually walk unaided.
We've been told she may never be able to do a trek, but instead may either need a cane or walking stick or only be able to walk small distances before needing to sit down again. I'm hoping small distances equates to around 4-5 miles, because I'm there with her on that. Somehow, I assume it's much shorter than that.
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| Holly in her special high chair. |
This was wonderful news, as not only does it mean Holly's progress is going well, we also get to reclaim some holiday time and have a break together! Whether this means we try and steal some of the fading embers of the summer and go away or book a couple of weeks at Christmas, we've now been given a get out of jail free card.
The only caveat we were given was to take Holly's walker contraption wherever we go, so we can keep up with her walking therapy. This thing is a massive thing and could potentially limit any holidays to staycations, but that's not really a problem.
This also means we don't have to wait and see about the Bobarth Centre therapy sessions in North London.
In case you were wondering, Holly IS making wonderful progress. She hates lying down and if you pick her up to sit up, she will throw a strop if you don't pick her up to let her walk around. She's still really weak in her trunk but the dedication and strong-mindedness is there to want to do it. More home therapy around trunk strengthening is really needed and hopefully she will eventually walk unaided.
We've been told she may never be able to do a trek, but instead may either need a cane or walking stick or only be able to walk small distances before needing to sit down again. I'm hoping small distances equates to around 4-5 miles, because I'm there with her on that. Somehow, I assume it's much shorter than that.
Thursday, 18 July 2013
It's not the pox
Having had to take Holly out of nursery early yesterday due to suspected chickenpox, Sue has clarified - via a doctor's appointment this morning - that it is not actually the pox. The doctor confirmed what Sue and I THOUGHT it was - heat rash. The bumps apparently don't conform to what the pox would resemble and they weren't all over her body.
This is good news for all involved - but does emphasise how this heat wave is taking it's toll on poor Holly. Even though she's not "poxy", she's still listless, grumpy, has a upset stomach and seems to break out grizzling for no reason. All, apparently, symptoms of being stinking hot.
At the behest of my mum, it really does sound like a good time to invest in an A/C unit for the house.
This is good news for all involved - but does emphasise how this heat wave is taking it's toll on poor Holly. Even though she's not "poxy", she's still listless, grumpy, has a upset stomach and seems to break out grizzling for no reason. All, apparently, symptoms of being stinking hot.
At the behest of my mum, it really does sound like a good time to invest in an A/C unit for the house.
Wednesday, 17 July 2013
Chickenpox for Holly
Got a call today from Busy Bees that Holly potentially has chickenpox.
She's been quite moody and crabby the last couple of days, and this would explain her foul mood. I had to race home to pick her up before my call today at 2pm.
I still swear she's had chickenpox before, but I was told that depending on how mild she had it the previous time, she could get it again.
Wonderful.
She's currently quite placid and sleeping, so a little better off than she was the last couple of days.
She's been quite moody and crabby the last couple of days, and this would explain her foul mood. I had to race home to pick her up before my call today at 2pm.
I still swear she's had chickenpox before, but I was told that depending on how mild she had it the previous time, she could get it again.
Wonderful.
She's currently quite placid and sleeping, so a little better off than she was the last couple of days.
Monday, 22 April 2013
Silver lining to the unemployment cloud
I've now been unemployed (outside the "gardening leave" state) for just over a week.
While it's utterly annoying to be without work, it came at a good time for Holly. It meant that I was able to attend her intensive therapy sessions without worry of missing work or having to take holidays. Unfortunately Sue could only attend the days she didn't work (Tuesdays and Thursdays).
We're looking at booking more intensive therapy in 4 to 6 weeks. I really hope I'm not still job hunting at that point.
While it's utterly annoying to be without work, it came at a good time for Holly. It meant that I was able to attend her intensive therapy sessions without worry of missing work or having to take holidays. Unfortunately Sue could only attend the days she didn't work (Tuesdays and Thursdays).
We're looking at booking more intensive therapy in 4 to 6 weeks. I really hope I'm not still job hunting at that point.
Friday, 19 April 2013
Intensive therapy for Holly
Over the past two weeks we've been doing intensive therapy with Holly. Given that she's only one year old, this really means doing an hour a day for four days a week (she has Wednesday as a rest day).
Sue and I were sceptical and hopeful before we began the sessions that they would aid Holly overcome her movement related issues. At the beginning of the session we had to list some goals we had for the two weeks.
Happily enough, one of the goals - Holly sitting unaided for a small amount of time - was achieved long before the end of the two week session.
Both Sue and I are really ecstatic with the progress Holly has made and we've seen how tiring it has been for her to do the work, even for the hour session. Now that the two weeks is over, Sue and I have our homework to continue what we've learned, while going back to having the one hour a week session (plus the hour a week NHS session).
Sue and I were so happy with how things progressed that we're eager to book in another two weeks. This won't be for another 4 to 6 weeks, to give Holly time to take on board everything she's gone through these past sessions.
Sue and I were sceptical and hopeful before we began the sessions that they would aid Holly overcome her movement related issues. At the beginning of the session we had to list some goals we had for the two weeks.
Happily enough, one of the goals - Holly sitting unaided for a small amount of time - was achieved long before the end of the two week session.
Both Sue and I are really ecstatic with the progress Holly has made and we've seen how tiring it has been for her to do the work, even for the hour session. Now that the two weeks is over, Sue and I have our homework to continue what we've learned, while going back to having the one hour a week session (plus the hour a week NHS session).
Sue and I were so happy with how things progressed that we're eager to book in another two weeks. This won't be for another 4 to 6 weeks, to give Holly time to take on board everything she's gone through these past sessions.
Tuesday, 9 April 2013
MMR jab for Holly
Let it be said that scare tactics do work.. sometimes.
In the case of the measles outbreak in Wales and its impact on our decision to get Holly the MMR jab, job done.
Sue and I had really been humming and hawing about whether to get the jab for Holly (it should have been administered about 3 months ago, around her first birthday), but all the horror stories of it opening the floodgates to autism were all too real for us to want to proceed any further.
It's really the lesser of two evils - the horrors that can come with infant measles (which are NOT nice) or a lifetime communication problem.
This hasn't stopped us videoing Holly in an attempt to remember the good times (and to have evidence if the worst does happen). We realise the evidence linking MMR to autism has been discredited, but when you read about people winning lawsuits, it makes you sit up and notice.
We're hoping for the best with Holly in all this, and if Emily wasn't an Autie, we probably would have no concerns. Time will only tell if we did the right thing. I'm hoping this is not yet another instance where I wished I had a suped-up Delorean.
In the case of the measles outbreak in Wales and its impact on our decision to get Holly the MMR jab, job done.
Sue and I had really been humming and hawing about whether to get the jab for Holly (it should have been administered about 3 months ago, around her first birthday), but all the horror stories of it opening the floodgates to autism were all too real for us to want to proceed any further.
It's really the lesser of two evils - the horrors that can come with infant measles (which are NOT nice) or a lifetime communication problem.
This hasn't stopped us videoing Holly in an attempt to remember the good times (and to have evidence if the worst does happen). We realise the evidence linking MMR to autism has been discredited, but when you read about people winning lawsuits, it makes you sit up and notice.
We're hoping for the best with Holly in all this, and if Emily wasn't an Autie, we probably would have no concerns. Time will only tell if we did the right thing. I'm hoping this is not yet another instance where I wished I had a suped-up Delorean.
Tuesday, 2 April 2013
Therapy is paying off for Holly
Sue just called me with two pieces of excellent news.
The first is that Holly not only sat up by herself (which she CAN do when she really wants to) but she then sat unassisted for just over two minutes! This is fantastic news really. Her trunk is the part of her body that's letting her down and will most likely be the cause of issues for her in later life, so if she's able to control it already, things are looking up!
The second piece of good news is that BUPA have agreed to pay for another set of sessions. We WILL have to look for some money to continue the private therapy, but at least we have another 6 or 7 sessions sorted out!
All around good news then.
The first is that Holly not only sat up by herself (which she CAN do when she really wants to) but she then sat unassisted for just over two minutes! This is fantastic news really. Her trunk is the part of her body that's letting her down and will most likely be the cause of issues for her in later life, so if she's able to control it already, things are looking up!
The second piece of good news is that BUPA have agreed to pay for another set of sessions. We WILL have to look for some money to continue the private therapy, but at least we have another 6 or 7 sessions sorted out!
All around good news then.
Sunday, 3 March 2013
Holly died a year ago today
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| Holly, one year ago. |
I keep thinking sometimes that in a parallel universe somewhere (OK, I've been watching WAY too much Fringe lately) Alternate Sue and I are visiting a grave today and wishing beyond wishing that what happened hasn't actually happened. I can't begin to imagine what our lives would be like, what mental state we'd be in had the alternate reality happened. Thankfully we haven't had to find out.
Not to say the past year has been without it's problems due to this - we've had medications, therapies as well as a diagnosis of Choreoathetosis, which is a type of Cerebral Palsy where there are too many unwanted movements. At the moment, we've been told worst case scenario is wheelchair and never walking - but that's worst case.
It's been a long year and we made it through. I'd like to thank everyone again one year on for their wishes and prayers and I would be utterly remiss not thanking all the professionals and specialists who have been working with us to ensure that Holly's little brain recovers as much functionality as it possibly can.
Tuesday, 12 February 2013
Holly's additional therapy
Sue started Holly's additional therapy today. After a bit of a harrowing start (getting lost, having Emily's nappy on not quite right resulting in "leakage"), so finally found the place and got on with the job at hand.
We were wondering initially whether Holly would benefit from additional therapy, but I think the session put our wonder to rest. Sue regaled me afterwards about what transpired through the session.
Thankfully, BUPA are giving us 6 sessions as part of our membership. After that, we're not sure what happens. The specialist said she'd try to shake the tree from her end to see if the PCT (Primary Care Trust) will help us out (even though our own doctors have said no, as we're already receiving treatment on the NHS - although this kind of treatment is really unavailable anywhere else).
The most gut wrenching thing was Sue telling me Holly might have Cerebral Palsy. I realise those two words separately loosely mean brain damage, and that we're living in cloud cuckoo land if we think she escaped dying with no lasting injuries. It's just when you say terms like "Cystic Fibrosis", "Multiple Sclerosis" or "Cerebral Palsy" it sounds so final. I guess it's the label and the society baggage that comes along with it.
The therapist was not eager to label Holly yet, but said signs points to this being the diagnosis. On a positive note she was really impressed with how bright and alert Holly was and some of her movement were also good.
Here's hoping. Here's hoping.
We were wondering initially whether Holly would benefit from additional therapy, but I think the session put our wonder to rest. Sue regaled me afterwards about what transpired through the session.
Thankfully, BUPA are giving us 6 sessions as part of our membership. After that, we're not sure what happens. The specialist said she'd try to shake the tree from her end to see if the PCT (Primary Care Trust) will help us out (even though our own doctors have said no, as we're already receiving treatment on the NHS - although this kind of treatment is really unavailable anywhere else).
The most gut wrenching thing was Sue telling me Holly might have Cerebral Palsy. I realise those two words separately loosely mean brain damage, and that we're living in cloud cuckoo land if we think she escaped dying with no lasting injuries. It's just when you say terms like "Cystic Fibrosis", "Multiple Sclerosis" or "Cerebral Palsy" it sounds so final. I guess it's the label and the society baggage that comes along with it.
The therapist was not eager to label Holly yet, but said signs points to this being the diagnosis. On a positive note she was really impressed with how bright and alert Holly was and some of her movement were also good.
Here's hoping. Here's hoping.
Tuesday, 22 January 2013
Holly's paediatric check up - therapy and the MMR jab
Went to the paediatrician today for Holly's 6 month check up and all seemed to be in order, which was nice.
The doctor was very impressed with Holly's progress, her ability to do peek-a-boo, her sensory awareness (turning when she heard a noise, etc.), and general progress.
We discussed the hot topics that Sue and I are thinking about right now - further private intense therapy and the MMR jab debate.
While the NHS won't sanction any more than 6 sessions of additional therapy (£70/hr if your curious), we did discuss that we're prepared to pay for it ourselves after the initial "freebies".
We were told that while intense therapy is good on paper, there's a question about how effective it actually would be. If Holly is going to eventually get to 95% normalcy anyway, the therapy may only serve to get her there quicker and then there's no telling how much quicker. It most likely wouldn't serve to provide any additional help.
Regarding the MMR jab, we were regaled with horror stories of the effects of measles (which just sounded ghastly). While the jab itself may not actually cause autism or other illnesses, it may trigger any dormant neuro problems that are not yet detected and allow them to manifest themselves.
Sue and I are quite confident that Holly is a lot less "Emily-like" (for lack of a better term... "austismy"?) than Emily was at this age. A lot more engaged, verbal and alert.
Again, with the benefit of hindsight, all those people telling us we were lucky having such a lovely placid baby in Emily didn't know how utterly wrong they actually were.
We're still really skittish about the MMR jab as it's still not 100% certain that we wouldn't be signing Holly up to a lifelong disability if we did go through with it.
More sleeps and convincing required.
The doctor was very impressed with Holly's progress, her ability to do peek-a-boo, her sensory awareness (turning when she heard a noise, etc.), and general progress.
We discussed the hot topics that Sue and I are thinking about right now - further private intense therapy and the MMR jab debate.
While the NHS won't sanction any more than 6 sessions of additional therapy (£70/hr if your curious), we did discuss that we're prepared to pay for it ourselves after the initial "freebies".
We were told that while intense therapy is good on paper, there's a question about how effective it actually would be. If Holly is going to eventually get to 95% normalcy anyway, the therapy may only serve to get her there quicker and then there's no telling how much quicker. It most likely wouldn't serve to provide any additional help.
Regarding the MMR jab, we were regaled with horror stories of the effects of measles (which just sounded ghastly). While the jab itself may not actually cause autism or other illnesses, it may trigger any dormant neuro problems that are not yet detected and allow them to manifest themselves.
Sue and I are quite confident that Holly is a lot less "Emily-like" (for lack of a better term... "austismy"?) than Emily was at this age. A lot more engaged, verbal and alert.
Again, with the benefit of hindsight, all those people telling us we were lucky having such a lovely placid baby in Emily didn't know how utterly wrong they actually were.
We're still really skittish about the MMR jab as it's still not 100% certain that we wouldn't be signing Holly up to a lifelong disability if we did go through with it.
More sleeps and convincing required.
Monday, 14 January 2013
Holly's movements
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| Random Holly shot. |
We're not sure if this is down to natural forces or a side-effect of her being weaned off her anti-seizure medication topiramate.
She seems to be going through a rough bout of teething again, and these actions could be a result of that, OR they could be some underlying physical issue that was masked by the meds.
She doesn't push back all the time, and it could be an effort to get out of a situation she doesn't want to be in (like sitting up? or having a really sore mouth?). It really is too soon to tell at this point.
We're just trying to collate some further information at this point before raising any alarm bells, but at the end of the day I don't want my one year old child dependent on ANY medication for any longer than is necessary.
We had such high hopes the medication had become redundant (she's due to come off them this week), it would knock the wind out of our sails a bit to discover the opposite is true.
Thursday, 3 January 2013
2012 in Review
It's been quite the 366 days for our family this year. Utterly worthy of noting down for reference in years to come.
Q1 - Jan - March
This was our most tumultuous time. We had brought Holly home from the hospital days before 2012 began, and it was a year sold to us that would be unrivalled - Jubilees, Olympics - Britain would never have it so good.
Come February, we'd received the news we didn't want to receive, but really knew was coming - Emily got her Autism diagnosis. Close went the door with the small chance that it was really a learning difficulty, and we struggled to come to terms with our first born dealing with a life long condition.
March saw Holly have a cardiac arrest and die for around 20 minutes. The vision of a blue, lifeless 10 week old child in my arms sputtering her last breath, mixed with blood is one I will never be able shake - as much as I try.
We spent a month in various hospitals - including a very tense week in ICU at Evelina Children's hospital at St. Thomas', near Westminster.
March also saw Emily turn 4, celebrating near Holly's hospital with all four grandparents in tow. Probably the first and only time this will ever happen. Speaks volumes of the "global community" these days.
Q2 - April - June
Mere days out of the hospital and still on the rocky road to recovery, we all bundled over the sea to Northern Ireland for an Easter holiday - complete with local hospital and doctor details and medication for Holly.
As Holly's condition improved, the weather went in the other direction and we had quite a wet trip of it. A weather phenomenon that we're still experiencing in January 2013.
June found us in sunnier climes as we flew to Spain to celebrate the wedding of our friends Amanda and Dave. Not yet 6 months old and Holly is already a Euro-traveller! Emily was even flower girl for the happy couple.
Q3 - July - September
Sue and I celebrated our 40th birthdays during Q3 of 2012. Momentous occasions for both of us. In August, Sue took both the girls to Australia for three weeks to celebrate PROPERLY. Of course, the trips down and back were not without their peril, but they made it back and Holly added another 10,000 miles to her already impressive first year haul.
September also saw us move into our new house, complete with sizeable girl's bedroom. Holly, for the time being, would reside in Sue and my bedroom - mainly so we can keep an eye on her, but also so she doesn't wake Emily up at 5am.
Mid-September saw Emily start big girl school. We got her into the Rainbows Opportunity Base (that's fancy talk for "Autism special needs school") at Green Wrythe Primary School near St. Helier's Hospital.
Thankfully, as it's quite far away, we also managed to maintain the transport she had for Dragonflies, complete with the same escort - Claire!
Q4 - October - December
Sue's maternity leave ended during this quarter, and she went back to work three days a week. The other two were taken up almost exclusively with medical appointments for one or both of the kids.
Holly and Em had their Canadian grandparents come over and spend Christmas. Their first UK Christmas since 1974. They DID reckon a few things had changed since then - including the abundance of Christmas lights everywhere.
Q1 - Jan - March
This was our most tumultuous time. We had brought Holly home from the hospital days before 2012 began, and it was a year sold to us that would be unrivalled - Jubilees, Olympics - Britain would never have it so good.
Come February, we'd received the news we didn't want to receive, but really knew was coming - Emily got her Autism diagnosis. Close went the door with the small chance that it was really a learning difficulty, and we struggled to come to terms with our first born dealing with a life long condition.
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| Our little girl in ICU. |
March saw Holly have a cardiac arrest and die for around 20 minutes. The vision of a blue, lifeless 10 week old child in my arms sputtering her last breath, mixed with blood is one I will never be able shake - as much as I try.
We spent a month in various hospitals - including a very tense week in ICU at Evelina Children's hospital at St. Thomas', near Westminster.
March also saw Emily turn 4, celebrating near Holly's hospital with all four grandparents in tow. Probably the first and only time this will ever happen. Speaks volumes of the "global community" these days.
Q2 - April - June
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| Emily as flower girl at Dave and Amanda's wedding |
As Holly's condition improved, the weather went in the other direction and we had quite a wet trip of it. A weather phenomenon that we're still experiencing in January 2013.
June found us in sunnier climes as we flew to Spain to celebrate the wedding of our friends Amanda and Dave. Not yet 6 months old and Holly is already a Euro-traveller! Emily was even flower girl for the happy couple.
Q3 - July - September
Sue and I celebrated our 40th birthdays during Q3 of 2012. Momentous occasions for both of us. In August, Sue took both the girls to Australia for three weeks to celebrate PROPERLY. Of course, the trips down and back were not without their peril, but they made it back and Holly added another 10,000 miles to her already impressive first year haul.
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| Emily in her new school outfit. |
Mid-September saw Emily start big girl school. We got her into the Rainbows Opportunity Base (that's fancy talk for "Autism special needs school") at Green Wrythe Primary School near St. Helier's Hospital.
Thankfully, as it's quite far away, we also managed to maintain the transport she had for Dragonflies, complete with the same escort - Claire!
Q4 - October - December
Sue's maternity leave ended during this quarter, and she went back to work three days a week. The other two were taken up almost exclusively with medical appointments for one or both of the kids.
Holly and Em had their Canadian grandparents come over and spend Christmas. Their first UK Christmas since 1974. They DID reckon a few things had changed since then - including the abundance of Christmas lights everywhere.
Thursday, 29 November 2012
Holly's neuro-review
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| Random shot - Holly enjoying messy play. |
She said the meeting was quite positive and Dr. Lim was happy to see the progress Holly was making.
He broached the subject of doing an MRI again to ascertain the actual extent of brain damage Holly will have. Just to be clear as well, there IS brain damage, the question at this point is how much.
The MRI done just after Holly's accident back in March was too close to the actual event to provide any lasting effects, and we always knew we'd have to do a follow up (or two) to figure out how bad (or good) things are.
Sometimes I con myself into believing there's nothing actually wrong with Holly and that Emily is the only child with "issues". Talk of MRIs to determine brain damage and the fact that Holly still can't sit up by herself at 11 months brings it all home in horrible technicolour.
I guess while others are wishing for their two front teeth for Christmas, we're wishing for a very limited amount of brain damage for Holly.
Friday, 16 November 2012
Holly gone done be ill, like
She's been teething for ages and wearing all the hallmarks of that process like a trooper, but after last night it's occurred to Sue and I that Holly is actually ill.
She's been dribbling and having "pink cheek" like any teething baby, even a touch of warmth on her forehead. Last night though, she was restless, really really warm and kept hocking up all we gave her, usually accompanied by coughing fits.
Sue took her to the doctor today and she's actually got a chest infection. In the grand scheme of what we've endured this year, this is really nothing in comparison, but to see the usually happy joyful little Holly reduced to an exhausted listless mess is not nice.
I guess this is all in anticipation of all the wonderful bugs she'll pick up when she starts nursery properly from next week.
She's been dribbling and having "pink cheek" like any teething baby, even a touch of warmth on her forehead. Last night though, she was restless, really really warm and kept hocking up all we gave her, usually accompanied by coughing fits.
Sue took her to the doctor today and she's actually got a chest infection. In the grand scheme of what we've endured this year, this is really nothing in comparison, but to see the usually happy joyful little Holly reduced to an exhausted listless mess is not nice.
I guess this is all in anticipation of all the wonderful bugs she'll pick up when she starts nursery properly from next week.
Thursday, 25 October 2012
Impacts meeting for Holly
Sue and I attended an Impacts meeting for Holly today.
We had all the professionals in Holly's life there - speech and language, paediatrician, physiotherapist, dietician, and occupational therapist. Only person missing was her play therapist.
We sat around a talked about how we all thought Holly was getting on with health, feeding, development, etc. and if there were any concerns.
It was quite a good forum for everyone to get to understand Holly and her condition from all angles and get a better idea of the big picture.
It was also encouraging to hear from all the professionals there that they thought Holly was making wonderful progress and that some of the concerns Sue and I had (like Holly not really taking to the sippy cup all that well) were to be expected for a normal child of her age. She's not out of the woods yet though, as her development is still behind a "normal" child of her age.
We are going to reconvene in 6-months time to see where we are with Holly's situation.
We had all the professionals in Holly's life there - speech and language, paediatrician, physiotherapist, dietician, and occupational therapist. Only person missing was her play therapist.
We sat around a talked about how we all thought Holly was getting on with health, feeding, development, etc. and if there were any concerns.
It was quite a good forum for everyone to get to understand Holly and her condition from all angles and get a better idea of the big picture.
It was also encouraging to hear from all the professionals there that they thought Holly was making wonderful progress and that some of the concerns Sue and I had (like Holly not really taking to the sippy cup all that well) were to be expected for a normal child of her age. She's not out of the woods yet though, as her development is still behind a "normal" child of her age.
We are going to reconvene in 6-months time to see where we are with Holly's situation.
Tuesday, 25 September 2012
Holly is "Chatty Patty"
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| Holly. Things are going well. |
Neither Sue nor I have a yardstick to measure her development against, with Emily's autism viewed in hindsight, but I'm not sure if things DO happen overnight.
Sue and I have been trying to get Holly to mimic us, doing the "buh, buh, buh" sound and shape with our mouths, but recently, Holly's started "talking" to us. She's also developed additional cries. She's previously really only had the "I'm awake feed me"cry. This has now been augmented by a sort of "I'm here, play with me" cry that's not as intense.
It's very interesting seeing the development of Holly and even the experts are saying they're seeing quite an advance in her behaviours, etc.
On the flipside, she still has more movement than she needs and there's still concern over this. Over the past months, Sue and I have learned to take any silver lining as a silver lining though. I'm just happy something good is happening.
Wednesday, 18 July 2012
Holly's first tooth
Holly's been dribbling like a maniac for the last few weeks, which is generally a sign for a number of things, including teething.
This morning, Sue yelled through to me quite excited that she could feel a tooth coming through. This would explain the dribbling. We bought a box of "toothy powders" a couple of weeks ago as we assumed the dribbling was caused by this, but now we know! Queue the screaming pain as the teeth start poking through.
With Emily losing teeth and Holly's coming through, it's quite an oral time in the John household!
This morning, Sue yelled through to me quite excited that she could feel a tooth coming through. This would explain the dribbling. We bought a box of "toothy powders" a couple of weeks ago as we assumed the dribbling was caused by this, but now we know! Queue the screaming pain as the teeth start poking through.
With Emily losing teeth and Holly's coming through, it's quite an oral time in the John household!
Monday, 25 June 2012
Holly is looking brighter
Over the last couple of weeks we've noticed a definite, positive change on Holly.
She's much brighter, more alert, smiles more and follows you around the room. It's all the things we could have hoped for, for a child verging on six months old (tomorrow).
She still has her spasms, especially in her leg (for which I've nicknamed her "Mississippi Leg Hound" purely for the crazy leg movements, not for the rest of the Christmas Vacation reference).
She's rolling on to her stomach unaided, which is good. Usually this is followed by a little "help me" cry as she lies there unable to turn back over. Today, however, she was able to roll on to her stomach and then back on to her back, unaided.
We've also introduced new flavours and textures into her diet, to promote the next stage of eating. She's eating more paste-consistency food (thanks to our food processor) and Sue's cooked up some baby recipes with chicken in them, so Holly's getting her first taste of meat!
Emily's still ignoring Holly, but every now and then we notice her spying Holly out the corner of her eye. I think as Holly grows up and becomes a bit more predictable and less of a random crying machine, Emily will warm to her. She's only been around Holly for about six months now, which isn't all that long in the grand scheme of things (obviously it's a lifetime for Holly).
She's much brighter, more alert, smiles more and follows you around the room. It's all the things we could have hoped for, for a child verging on six months old (tomorrow).
She still has her spasms, especially in her leg (for which I've nicknamed her "Mississippi Leg Hound" purely for the crazy leg movements, not for the rest of the Christmas Vacation reference).
She's rolling on to her stomach unaided, which is good. Usually this is followed by a little "help me" cry as she lies there unable to turn back over. Today, however, she was able to roll on to her stomach and then back on to her back, unaided.
We've also introduced new flavours and textures into her diet, to promote the next stage of eating. She's eating more paste-consistency food (thanks to our food processor) and Sue's cooked up some baby recipes with chicken in them, so Holly's getting her first taste of meat!
Emily's still ignoring Holly, but every now and then we notice her spying Holly out the corner of her eye. I think as Holly grows up and becomes a bit more predictable and less of a random crying machine, Emily will warm to her. She's only been around Holly for about six months now, which isn't all that long in the grand scheme of things (obviously it's a lifetime for Holly).
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