Wednesday, July 30, 2008
On Tuesday Abacus went to visit a new baby at the maternity ward, where she'd previously only been in utero where we knew her only as a heart beat, he was a few hours old and already bigger than her!
Thursday, July 24, 2008
He loved Abacus and remembered her from the ward, he loves her name. He's really impressed with her progress saying that her feeding and muscle tone are good indicators of her intelligence, and that she is doing better than most babies of her age and prematurity, so she should have a bright future ahead of her. She was really patient as he checked her heart and he thinks she has a really positive and happy personality. He said not to listen to what people say, which we probably already know, he was just the perfect sort of personality for our situation, the type of maverick doctor role required for any story of this type.
We are sooooooo happy for this news. We are in such a good mood and are so excited for Abacus, I wanted to throw her a party but all she could have is milk, and she'd have that anyway. She has another appointment in October after her heart test, I can't wait to meet him.
Wednesday, July 23, 2008
Abacus has become steeped in intellectualism, yesterday she attended a lecture on native American sign language stowed discretely in Danielle's sling, from where the occasional squeek escaped as she slept. Later she hung out in the linguistics department for an hour or so, much to everyones delight, assisting her godmother in writing her phd, while Danielle attended a seminar.
That night she went to meet her second cousins, lets just say cousins for ease. It was pouring icy rain in a howling gale as we weaved our way through peak hour traffic to their house, at one point taking evasive action to avoid a crazy big rig that pulled out in front of us. Her cousins loved her so much, they petted her as she fed. Then we raided their old baby stuff and got some awesome helpful things (thanks Susan and Sean!), while we did that Hazel and Iris played with Abacus in a dolls bed, she actually fit in it! They had so much fun playing with their real life doll, and Abacus liked it too, she stayed awake through the whole visit, which must have worn her out because then she slept for about 5 hours ! I'm not used sleeping so long!
Monday, July 21, 2008
We drove everywhere to avoid the driving rain and every time we stopped at the lights she started crying and as soon as we moved again she chillaxed. She loved going through the Hataitai tunnel, the intermittent bands of bright light punctuating the darkness made her eyes bulge with interest and she turned her head from side to side to not miss any of the action. She was on her best behaviour while visiting, keeping her little cries to a minimum and mainly just feeding and sleeping, she gets on really well with new people, I hope that sustains through development.
She's grown into some of her really cool clothes now and almost right back out of them again! I'm not surprised as she's also taken to waking every 2 hours to eat !!! So our sleep has been reduced to the sum of naps collected between her feeds. But as I write this, weary after a night of such disturbed sleep, she's sleeping beside me and has been for the last 4 hours !!
Wednesday, July 16, 2008
Abacus is so lucky! You're such a young mother, yet you're so wise and you've made a fantastic start.First: you WON'T be devoting every moment to your 'disabled' child. That was definitely a fear I had and at 27 had no desire to devote the rest of my life to self sacrifice in that manner. Thank heaven that's not at all how it turned out. I think among the most important realisations that came to me (probably encouraged by some sensible well-wisher) was to take each day as it came and not to dwell on the future. I found that absolutely liberating.
Obviously, people like you and me DO think about the future. We wouldn't have managed to plod through degrees etc without that future orientation. But there's a difference between constructive preparation and being weighed down by anxiety.
Another vital piece of information for me came from a psychologist I met a grand total of once. He was the one who set me on the path of helping Jamie develop much better than would otherwise have been the case. What I remember so clearly from him were two pieces of advice. One was that Jamie would be likely to be placid and be happy to lie hour upon hour in his cot. I should resist the temptation to let him do that, but should ensure that he received good levels of stimulation. I took that advice to heart and I'm so glad I did.
The second piece of information was that I shouldn't settle for unnecessarily low levels of achievement. He said that (remember this was 35 years ago) researchers would go into institutions, put a book in front of someone with DS, find they couldn't read it and conclude that people with DS weren't capable of reading. He said, "Nobody had ever tried to teach them!" So I bore that in mind.
Three years later, when Jamie's speech therapist suggested to me that if I taught him to read, it might help his spoken language, I privately thought she was crazy, but set about doing it. I devised a really effective and simple and fun system, which I'll be delighted to share with you if and when you're interested, later.Jamie became a really, really good reader and that opened up every door, subsequently. So I'm hugely grateful for that one encounter with one uniquely encouraging individual.
I really identify with what you say about the kind of people you mix with – bookish, word-minded, interested in the world. We too. The wonderful thing, as it's turned out, is that Jamie has 'imbibed' from his environment a comfort with that sort of milieu. He has developed his own particular interests that have greatly surprised us. He was a pioneer in DS terms at Auckland Grammar School and just loved learning history. He actually won a prize for achievement in history. The things that most fascinated him were the build up to the Second World War and everything to do with President Kennedy, Cuba, assassination etc. So he's our family expert on those things.
For me, the most amazing time was when his younger brother, David, who is known by us to be the brightest person in our family (now a lawyer in New York, gggrr!!) had left till the last minute a project he had to do for 5th form history. It was due in the next day. I was tired and wanted to go to bed, but couldn't leave David to struggle alone. Then I remembered Jamie, who was lying on his stomach in the family room watching TV. David had to complete a time-line about the time preceding WW2. I remember yelling out to Jamie, "Jamie, when was the Reichstag fire?". The answer came back immediately. "Jamie, when was the Anschluss into Austria?" The answer came back immediately. "Jamie, when was...." And the answers, accurate, came back immediately. The time-line was completed fast!
Jamie is our resident expert on elections in New Zealand and the United States. If we're home late-ish and there's been a poll result, he'll give it, with the greatest accuracy. He has worked out possible Cabinet places in the event of a National or a Labour Government. He goes on to the websites and ensures he's up to date.
I remember my mother and her sister, both in their 80s, having a dispute about the dates of the Boer War. Mum phoned Jamie to settle it!!
It's not all heavy. He's up to date with 'Shortland Street', too, and just loves a number of 'soaps'.
Our other children went to Hebrew School – the Sunday morning session to learn Hebrew and some religious knowledge. We wanted Jamie to go too, for integration purposes. We didn't have any expectations. It turned out that he picked up Hebrew reading very fast and is still faster than I am at it. He also picked up grammatical structures, so that he could ensure agreement in gender and number. That amazed me. He's probably lost that latter capacity for lack of practice. But at Grammar School, he was one of the better ones in his class at French. He's probably lost that, too, now.
So – no lack of talents and no difficulty in fitting in with a group of people of the kind you describe. If we're playing Scrabble, we'll usually pair Jamie with someone. Same with Trivial Pursuit, but somehow there's no problem. And his grasp of the world plus his natural social graces mean that he can mix very widely. If and when the conversation is puzzling to him he simply sits quietly, but never offers comments that are out of place.
Anyway, I must return to duller things, but I wanted to respond to you as soon as I felt well enough to sit in front of the computer for a while.
Do please keep in touch, Danielle. Warmest regards to you, to your partner and to the lucky little Abacus!
we'd joked about a blog that was just "awake and feed her and sleep three hours, awake and feed her and sleep three hours . . ." written about 200 times and all the photos would be of those words written all over the walls of our flat. So how it goes is, after a night of the above we awake and Danielle leaves for university at about 8:30 and I go to the lounge to work from home which is juggled with feeding Abacus some more and myself and comforting her and changing her and myself as I prepare for the change over at 10:30 when danielle arrives home and I leave to get to uni by 11 for an hour lecture before arriving at the office at just after 12 to work until my lab at 3 which is back at uni for 2 hours and then back to the office and then leave for home by about 630 And meanwhile danielle is juggling study and Abacus and meetings with plunket.(lack of punctuation is intentional - there is no punctuation in our routine) . Have we taken on a bit too much? Today it feels like it and I just wanted to exorcise the exhaustion from my system somehow. But everything balances out eventually.
Monday, July 14, 2008
One was for an appointment with the pediatrician who was assigned to Abacus during her month long stay in hospital - with whom we never met during that time. There are clearly massive flaws within the system. And we are honestly a little skeptical about the appointment, the anticipation of meeting with someone who knows Abacus only through notes submitted as a composite opinion of various nurses, coupled with our previous experience of such medical professionals making judgements based soley on her condition and not her as an individual, we feel it is going to be yet another meeting where we are told everything we already know, adhered with generalisations. And honestly does she need this? Does she need to spend her formative years surrounded by doctors assessing her and comparing her and enforcing the idea of her condition as a sickness? Obviously we want her to have all the help she can get, but also only the help she needs, and where do you make that distinction? We have many questions. But lets see what he says. And no cars this time, (they sent us another "parking permit") we're going by foot.
The second letter was very good news.
It was from Learning Media, and was addressed to Abacus "the cuteness" Catan and contained four $25 Just Kids gift vouchers "for some new digs" as payment for her participation in the photoshoot for their brochure, along with a note thanking her for helping them. It was signed "Liz (that wierdo lady)" We don't think you're wierd Liz!!! And thanks so much to you and Jodi.
Sunday, July 13, 2008
I finally put her mobile up but it still need some serious work. I need to add some high contrast to it to get her center surround receptive fields firing. It's way too light at the moment for her low spatial frequencies.
She's been playing a few practical jokes on people too. Well at least assisted us in playing some but she's a real good sport in them. Danielle and her were hiding from my niece Amelia the other day and then we heard Abacus' little noises give them away, then the next thing you just see Abacus head peak out from around the corner at adult eye level, it was pretty hilarious.
Thursday, July 10, 2008
Her neck control is getting so good. We give her a lot of "tummy time" and she is lifting her head and holding it for ages looking all around. The neurodevelopmental therapist also sent us some laminated black and white flash cards and she enjoys staring at them, especially the one of the cat.
Also last night she met her cousins for the first time and seemed to have a good time. She stayed up for ages with them.
Monday, July 7, 2008
Yesterday Michelle, the Visiting neurodevelopmental therapist came. She didn't stay long, it was more like a formal introduction, she took a few notes about whether Abacus was attending to voices or was she observing things visually, did she makes noises? did she cry ever? (some babies don't) and so on. She said the exercises we've been doing with her are really good and just to keep doing them, especially "tummy time". Abacus pretty much slept through the whole thing so we didn't do any tests or anything. She's going to send us some black and white graphic images on flash cards to have Abacus observe. And then she left and said she would visit pretty much monthly, depending on Abacus' progress. For now she's just observing to see whether there is slow development and then we'll see what needs to be done.
She seemed really nice (too).
Saturday, July 5, 2008
Jenna and Warren and their 11 month old son Leo are really nice and we think we have made a good choice in a babysitter. Leo is huge next to Abacus, literally over three times the size, he was really interested in Abacus, his eyes lit up when he saw her and apparently he does have a big fascination with babies, so they should be good buddies. They all loved Abacus too and had a bit of a hold, they'd already forgotten what it is like to hold a "new born" - though Leo was about 800grams heavier than Abacus is now when he was born. This will be a good test too, they said, for juggling two kids at once. We're really happy that she will have lots of different people in her life and that we're able to find people through alternative solutions to institutions for now - not that we're anti them, there's just a lot less waiting lists and forms this way and more community.
On friday Abacus celebrated forth of july with sparklers and slept in front of a nice warm fire in a wooden laundry basket - see photos.
There was also a tense few moments today when we left her trusty pacifier at a cafe and had to double back to get it - she was pretty pissed off - but very forgiving when we reunited them.
We've been doing exercises lately to strengthen her muscles. Trisomy 21 babies are known to have lower muscle tone - which Abacus hasn't really shown, definitely not to the extent of being what they call a "floppy baby", her arms and legs are strong, but now we're working on her neck - which again is on the lower end of the spectrum but she is benefiting from her push-ups and sit ups. Tomorrow the neuro-developement team is coming to visit, that will be interesting, she will help with muscle tone too, as the problem is not her muscles but more a neural issue with the motor-cortex. But we'll know more tomorrow.
Wednesday, July 2, 2008
So back when Abacus was in neonates - I went to fuel to get a coffee, which is in this tiny little corner of the hospital and reminds me of that lemon, lime and bitters commercial (kind of like this one http://www.youtube.com/watch?v=xLigxFg5Whs . except she goes to a vending machine and selects lemon, lime bitters, and the vending machine opens up and there's a posh bar inside with a smooth bartender) because there's this surrounding setting of a sterile pale walled hospital, then in this tiny corner there's this flash little takeaway cafe bar.
So anyway, I ask for a mochachino with 2 sugars. The barrister is hella european and he shakes his head with a smile and simply says "No".
And I'm like Um?
And he says - "It'll be too sweet . . . I'll put one in."
And then went to making it.
It was a truely awesome moment in my life.
And the wierd thing is - that no one else has ever seen him.
We had instructions to arrive at 830am and feed her and get her relaxed so that he could do all of his tests.
Unfortunately Abacus had decided to wake up early for her morning feed and so we were not really looking forward to getting up to get there by 830. But we made it.
When we got into the hospital Abacus started looking up at all the lights down the corridors and seemed really interested in where we were.
We took her back into the room where she had her photoshoot and he scrubbed down her head to put on the electrodes, which she HATED, but the solution he used smelled like maple doughnuts, which was nice. Then we had to feed her and swaddle her so that she would go to sleep. It didn't take long at all for her to nod off, she spent a bit of time trying to fight sleep off but it finally overpowered her.
the doctor - who loves babies, and I'm sure must have a million - attached all the electrodes, which looked like the crown of some futuristic buddhist ruler and stuck something in her ear. The piece in the ear sends a signal, which creates a steady and controllable charge of neuro- impulses which are detected by the eletcrode crown and interpreted by computer.
The doctor had to run back and forth between us and his other patients - but we were relieved when he said "Her hearing is normal and there's absolutely nothing to worry about". Yay! Another one checked off the list.
Apparently downs kids can be more susceptible to glue ear and ear infections (glue ear is a build up of fluid behind the ear drum and can be caused from colds - and can incidentally be as common, it is in part influenced by undeveloped passage ways between the throat and ears) we just need to keep an eye on her. He also gave us some pamphlets on how to work with her in terms of speech and give her good a head start in developing skills which might be a bit harder for her to pick up.
So it was a really possitive experience.
Then we returned to the Neonates ward.
I'd forgotten the heat - and also how it effects peoples breath, which I noticed almost immediately. We were here ironically for our homecare visit - whcih we thought we may as well do in the hospital while we were there.
Danielle first borrowed a couple of books on downs syndrome from the neo nates store, where the store owner remembered us well as she loves Abacus. We had to wait a while in the waiting room where we could hear a distraught mother crying and I soon remembered the reality of the neonates ward.
Veree was very impressed by Abacus' growth and progress and skills and how she's gotten chubby and even more cute. She had to take some blood, but Abacus is used to that - it didn't flow so easilly - as she has more fat in her heel now. Haha. Hopefully it was a good enough sample - though I'm pretty sure there's not much more to find in there.
Afterwards we realised our parking permit was only good to allow us parking in the out-patients car park - but wasn't free????? What the hell? So - yes - we got another $45 fine. I'm about sick of this carpark.
Abacus was so good through all of it. So patient and content with all the prodding poking and testing.
She's changed so much over the last couple of months. Her skin has lost that ethereal softly electrical raspberry texture and has become like real skin. She's also almost doubled in weight - today she was 2710grams, and grown about 9cm, from 40cm to, well, 49cm of course. She loves looking around, she likes looking up at lights with her wide eyes and seems very keen at observing everything around her.
Last night when I got home, she looked at me with a huge grin before burping loudly in my face and resuming a more disinterested look before turning her attention elsewhere.
She's getting good at gripping things too and being more aware of things that she can grab, like her bottle - or danielles hair.
She's pretty good at amusing herself, just lying there and looking around and making noises. But she also really likes to be held, which we might oblige too much - but we also really like holding her.
She's really good at feeding and is getting really fast at it now - which is helpful in those 3am situations. She's reasonably good at going back to sleep for hours afterwards at night, or a couple of hours in the day with a bit of time pencilled in for looking around and gurgling.
She also seems interested in foreign languages- which is probably something to do with a little thing called "novelty preference".
She also likes cafes, where her prefered drink is milk, I like how she just wakes up in random places and is completely unfazed by it. I also like how she's 2 months old but looks 2 days old, and people are wierded out by how we're so comfortable at taking her around places.