Daryl - Ann

30 July 2010

Gosh, doesn't a year pass quickly! We have been non-stop moving since we moved into our new home. The house is great, with much more space for Daryl-Ann to move about in here various pieces of equipment, and I can hang out the washing while keeping Daryl-Ann in eyesight - instead of having to carry her and the washing halfway down the section! It's the little things that really make a difference.

Speaking of which, Daryl-Ann's continued weight gain and retention have been quite amazing. While we struggled for the first two years of her life to put every gram on and keep it there, since her first course of stem cell therapy she has put on a whopping 4.5kg, and has grown out of two pants sizes! So much for the little girl who was 'failing to thrive' and needed a tummy tube! Now the only operation we might need is on our backs from carrying our little heffa-lump around! This weight gain has opened so many doors for us, but mainly it means that Daryl-Ann can go to daycare, amongst all the other kids her age, with all those bugs that all kids catch, and we do not need to fear her catching a cold and losing weight, or ending up in hospital with a simple tummy bug. She still gets coughs and colds like all the other kids, but she gets over them so much faster, and with no weight loss.

She continues to eat really well, and we're so pleased we did not have to take this basic human pleasure away from her. She eats up all her meat, veges and fruit and often is opening her mouth at us, indicating she wants more! However her favourite is still her chocolate milk, a special milk that many kids with CP have to help them with their weight and provide extra fibre. If I get distracted while giving her her milk, she will tap my hand, a gentle little reminder that she's still thirsty! She has done this for a while, but it usually resulted in both of us wearing the whole cup of milk. She has now figured out the right way to work her arm muscles to give me a reminder and not a dousing!

Daryl-Ann goes to Jade Star, and she just loves it - and the kids love her. The 'big' 4 year olds started a game called 'Daryl-Ann' which involves one child lying down and pretending to be Daryl-Ann, while another helps them to sit, and eat, just like the teachers and Daryl-Ann's parents do. The game has even migrated out to Macandrew Bay Playcentre, where the children were so taken with Daryl-Ann that they held a trike-a-thon to raise money for Daryl-Ann.

Daryl-Ann's vision continues to improve. It is interesting to look back and see how amazed we were when she first started to look at us when we spoke. Now it seems normal - she will watch a conversation going back and forth across a room as if she were watching a tennis match. She recognises the sound of her Daddy's motorbike and gets excited, looks up/around and starts kicking if she's on the floor. Daddy can now make her laugh out loud with tickles and wiggles, and she has even started smiling when people around her are laughing, just like toddlers normally do.

Daryl-Ann continues to be much more tolerant of all her equipment, from her car seat to her standing frame, and has found a love for baking, with her new best friend Nina, who has experience with Conductive Education and is our new baby-sitter. They also do lots of arts and crafts - often it is hard to tell what is messier - the child or the kitchen! But they have a great time together.

Daryl-Ann's seizures continue to affect her daily. We have taken her off all anti-epileptics as a trial to see how she is without drugs - and it turns out she's not much different! However she is more alert and happy without them. We will continue to search for the drug or combination that will sort out her epilepsy, but for now we are all enjoying her having meals that aren't covered in powder!

So with me now working full time, and Daryl-Ann's dad being primary care giver now (I know, flashes of 'Daddy Daycare!!'), it has been a very busy year. While we would have loved to have started fundraising straight away, it has simply been an impossibility. However we are back on the case now.

Recipe books are still available (3rd Edition! New photos, and one new recipe plus a wee update, but otherwise the same books that we get emailed about often, when people need to get another copy because their daughter/mother/sister keeps stealing their one!), and our first big event is Otago Rugby hooker Peter Mirrielees' pledge to shave off his beard (as well as some of his team mates) for Daryl-Ann. Check out the new fundraising page for more details. Still a couple more events waiting in the wings, and it would be just awesome if we could get the money together for Daryl's next (and final) trip for a March departure again. That worked out to be a perfect time of year, as it was not too hot, nor too cold over there, and the off-season rates keep the prices down!

Caleb Turner - Dunedin's other famous CP toddler! - has recently returned from his second trip. He is again much improved - now a very vibrant (and noisy!) boy with a cheeky grin when he knows he's being naughtier (and Mum is trying to tell him off J ). We have been told tho that with kids as severe as Daryl-Ann, two is the maximum number of treatments suggested for us to get real results from. So at least we know we won't be fundraising forever. We'd really like to get this treatment done before Daryl-Ann turns five and starts school (November 2011) so we can call settle down and relax for a bit!

Right - must dash - so much to do!

17 August 09

Daryl-Ann had routine surgery on August 12th. She had her tonsils and adenoids out, the cysts on her eyelids sorted, her adductors snipped and Botox in her hamstrings. She came through really well, but was very grumpy and sleepy with the anaesthetic, and basically slept for the whole day (and all night - YES!). She was almost her usual self the next day, and we were okayed to go home. She's a bit bruised and sore, but it doesn't seem to bother her much (during the day anyway lol). Our main problem is getting all the liquid medicines into her, which tend to make her gag. We've noticed her legs in a more relaxed position since the adductor snip. And she gets out of leg stretches till the 22nd.

Sadly the operation has meant we will be missing out on Nanny Bev's 60th Birthday up in Rotorua. Daryl-Ann is a high risk for bleeding for at least a couple more weeks, and the ENT doctor would only put her on the list if we promised not to travel afterwards - very sad but the only choice that could be made. Hope you have a good time anyway Nanny!

We move into the new house on Friday, and as soon as we're unpacked we'll be back into fundraising! We're hoping to get a nice new photo of Daryl-Ann for the 3rd Edition of her recipe book. Hopefully she'll co-operate!

So if you have any spectacular fundraising ideas, get them in! We've been watching the USD very closely, as it really effects how much we will have to raise, and the sooner we make the money the better! The rate has just dropped from a high of .68 to .66. Hopefully it will stay well up there, but I had seen indications that it would drop as low as .44 by the time we're (hopefully) ready to go. I hope they were wrong!

7 August 09

Daryl-Ann is now on Twitter!

Follow her Tweets, the username is DarylAnnsTweets.


Daryl-Ann is going in for surgery on Wednesday - tonsils, adenoids, groin muscle release, botox in hamstrings and sorting cysts on eyelids. Hopefully we will then have a wee girl who can BREATHE AND SLEEP at night!! Our big move across to Allanton happens on the 21st, and fundraising for Round II will kick off after that. Recipe book will be reprinted - get your orders in now!

We will be producing a calendar, and invite all amateur (or not so amateur) photographers to submit a photo! - It could be up to 16 months long so plenty of space. The theme is 'What makes New Zealand special'. So think about it. What does NZ mean to you? What would you miss the most if you moved overseas? What do you think visitors should experience to get a feel for the REAL NZ? Maybe riding horseback up north with a Maori family and having a hangi afterwards? Maybe it's K Road on a Friday night? Is it sitting in a hotpool in Rotorua while your sweetcorn cooks in another pool beside you? Is it your local wharenui? Is it the bush? Pig-hunting? The beach? The mountains? Is it your local school's 'bring your pet' day? Is it your local volunteer firefighter's putting out a scrub fire? Maybe it's SH1? A camping ground? A pohutukawa tree....

It could be a photo taken years and years ago, or you might not take it till next week - everything will be considered. Keep in mind this is a fundraising calendar for an 'almost' 3 year old girl - so please, nothing crude, or with hidden naughtiness!

Email me (janine.bolton@gmail.com) a high resolution pic, along with your name, age (if you don't mind) and where you're based, along with 2 sentences saying what/where the pic is of and why you chose it. This info will be printed on the calendar. Those who get published will receive three copies of the calendar. Pics will become property of the CP Hope Charitable Trust and may be cropped to fit the calendar well. Please have your photos in by August 31st at midnight.

The intention is to only publish one picture per photographer, but should we have a poor response we will consider publishing multiple pictures per photographer, so send in more than one photo if you wish. Happy snapping!

25 June 09

Just a short note to let you know that Daryl's story is in the 'Lucky Break' magazine that came out today. We're the first story so that's pretty cool!

Speaking of whom, although she played her usual tricks and was sick the whole time Nanny Bev was down (adenoids as it turns out), she has started doing a few new little things that we've noticed. If she's sitting on your lap for example, and you start talking to her, her eyes pop open and she looks up to your face. It's quite cute.

Also, she was on the floor watching her singing frog, and we started the new Donkey (thanks Mum) on the other side. After just a couple of seconds she turned her head straight over to the Donkey on her right side. Doesn't sound that amazing I know, but she tends to look to her left all the time, especially when on the floor, and the later in the day it is, the worse it gets. Well this was at night time. Rob and I were almost in tears it was so amazing to see.

We continue to get comments on how well she is holding her trunk and head and she smiles a lot more. She also now smiles in response to people around her laughing (me too! me too!), and she continues to smile lots more! Oh, and one new tooth.

15 May 09

My apologies - it's been ages since the last update!

Things have been manic here - we have renovated the house so that we can sell and move to somewhere more suitable for Daryl in terms of accessibility and bathing, and learning to walk etc. That has kept us VERY busy!

So we got Daryl weighed again on April 28th. I must say I was nervous, I was worried that the weight gain might have stalled or worse - that she would have lost weight! But as it turns out she is now 9.42kg - basically back to the heaviest she's ever been.

Daryl went back to daycare mid April...and picked up the first cold going around! So that meant reduced intake (and quite a few 'ejections' if you catch my drift) - her gag becomes very sensitive when she is ill, so that was a real bummer, but she has still put on weight.

I really think that her eyesight is improving. Her eyes seem more steady and she seems to take more enjoyment from things that she is looking at....well, she seems to actually be LOOKING at them, it's a heard thing to describe. The vision lady came around and left her with a great tactile book with lots of bright colours. We knew that Daryl was using her vision to decide if there was something fluffy on the page because she immediately put her hand out on pages that had fluff, whereas with no fluff, her hands stayed where they were. She really 'makes a meal' out of each page of that book (haha literally too - she loves to mouth things). At the next session with the vision lady, we had Daryl laying on her side, and we watched for 10 minutes while Daryl tried repeatedly to stretch and get a toy she was after that was at about her brow height on the floor beside her. She tried and tried, and then finally - yay! - a finger came out and she nabbed it. She pulled it straight to her mouth which is the next thing. She is actually able to get things to her mouth when she is sitting up. Granted, they have to be long things - her hands don't go right up there yet - but she definitely knows she can do it. I've now taken to giving her a folded up net scarf and a rattle to hold while we are in the car, and she puts them to her mouth and is quite content. So the improvement with her in the car continues (except when she's really sick - but hey, we can't have it all!). On the whole she is still a lot calmer in the car, chair and during her grumble hours of 5 - 7pm. Over just the last few days she has started making new sounds...like she found her vocal chords. It's not regular yet tho, so I won't get too excited about that one, but it was really cute.

She's still loving singing songs, and really enjoys a cuddle. Daycare commented that she really liked playing with the paint (they made Mother's Day cards - my first one!). Oh, and the last couple of nights in the bath she has made an attempt to splash her hands.

She's still rolling around! - Have to watch that when she's having nappy free time now! Occupational Therapy this week was great, Daryl's first real go at the 'buttons' since being back, and I was quite impressed at how purposeful her movements where (OT agreed). Music has started up again at Vera Hayward and we are using the Big Mac buttons for the kids to sing their part of 'Who stole the cookie'. It's great fun, and really shows you the potential for these kids to communicate. Also at music, Daryl was sitting (1/2 pie long sitting, 1/2 pie cross legged), unsupported for 10 secs at a time, and she did it about 4 times. Yippee!

She also pushed her walker for the first time this week. She has always lifted her legs when I walk her along, but this was the first time she caused the walker to move through her own movement of muscles, so long may that continue!

Rob and I have noticed a few days where we haven't seen her big seizures during the day. She still has them when she wakes up, but those ones at least seem to be reducing a bit.

All in all we are still really positive about her changes to date. When I spoke with Caleb Turner's Mum last month she said she'd seen more changes in the last 3 weeks than she had in the previous 3 months, so it could be that the changes seem to 'heat up' between that 3-6 mth post treatment phase...which means we're still a month away from the good stuff! But, Daryl-Ann's damage is quite different to Caleb's so we cannot compare them unfortunately...but you gotta have a bit of hope!

27 Mar 09

Yippee! Finally we have proof that the treatment is doing something! Today Daryl got weighed. The best her recorded weight we got was 9.24 in September last year. I know I have seen it around 9.5, a wee bit earlier in the year, but basically for the last year her weight has stalled, and then started to decline. It stalled again for a few weeks around 9.25 and then dropped again to 8.98 the week before we left. Getting a tube put into her stomach for feeding was looking immanent.

Well Daryl got treatment 3.5 weeks ago, and for the first time in months we have seen an increase in her weight - a dramatic increase! She now weighs 9.34kg - 360 grams heavier (1/3 kg) than she was just one month ago!

On 15/05/08 she weighed 8.9kg. It took her 5 months to put on another 340g to get to 9.24 - and now she has put more than that on in just one month! - after a long downward trend - quite spectacular and we are ecstatic.

Quite a few people saw Daryl-Ann for the first time since her treatment, and a recurring comment was (and has been since we got back) 'gee she's holding her head up much better' - and she is. Sure, she picks her lazy moments, but when she knows it's time to hold herself up, she does it very well.

Also today was the first day where she's been stuck in the car with me for an afternoon of errands since treatment. From 12 till 4.30 today we were in and out of the car, the doctor, plunket, my client, pick up a gift, change cars back with the mechanic, get the WOF retest (she stayed in the car while that was done), visit Dad and then home - not one grump, grizzle or moan - quite amazing. Even on the best of days Daryl would be at the very least whining by the time we were homeward bound, especially by that time of day, but she still had a big smile plastered on her face when we got home! And, she even had her AFO's (leg braces) on that whole time! - That usually causes her to stiffen up and usually I'll have to take them off her to settle her down an hour or so into the trip ... not this time. Every time I looked back at her she seemed to be absolutely taken with her toys, like she was opening Xmas presents. Quite a change, and fast. The eating/drinking and the tolerance of her car seat and pram are two things that just seemed to happen overnight, and have been a constant since. She has been so happy all day, all week, all month! The only time she has been grumpy is when she's been REALLY tired, otherwise she is just BEAMING. Other comments we've received: her eyes are open wider, she looks taller, she just 'looks different'. I noticed tonight as well that she was paying even more attention than usual to her bedtime book (I have only read it to her a couple of times since we've been back, so it was quite noticeable). Her arm kind of 'jumps' when she's ready to turn the page, and even dead tired as she usually is by that time, she makes a big effort to turn the pages. She also seemed to be making an effort to make noises back at the little 1 year old at the doctors surgery today. She is definitely participating in our sing-songs to a far greater extent than she used to, with a lot more vocalisations. She also seems to enjoy cuddles even more, really tucks herself in.

A mystery was solved today - why she was such a grump for all those nights while we were overseas. We were at our wits end, beginning to wonder if some damage had been caused by her screaming all the way from LA to San Diego, nothing seemed to settle her, no position, Panadol, cuddles, leaving her alone, drinks, food.... - well our little bunny rabbit with only her two top and two bottom front teeth has managed to pop through two molars! Right up the back top and bottom on her right hand side! Only noticed while at the doctor following up the mild temperature she's had, doc agreed everything seemed fine, Daryl lolled her head back and laughed and there they were - 'what on earth is that!?' I said... - well we know why now! So I guess teething in order is just not for her, so next time she's grumpy I'll have to slather ALL her gums with Bonjela!!! Feel like a useless Mum to think my poor little girl was popping through such huge teeth and I didn't even realise! I'll be keeping a much closer eye on her mouth from now on!

23 Mar 09

Well we are home again and unpacked, and slowly falling back into a recognisable routine. Daryl was not a happy chappy on the flight back, putting on a great performance for the poor air hostess crew in the back of a very bumpy plane. All of our eyes were hanging out by the time we arrived in Auckland. However flights were all on time and we didn't miss anything, so can't complain too much! Daryl has pretty much come back to the right time zone now, and had a very happy day today (after a grumpy night which had the two of us sleeping on the couch for the 2nd night in a row!).

The 'grumpy' episodes consist of Daryl being physically very stiff and emotionally very clingy. No-one has been able to tell me what it is yet, but thinking about it now, I don't recall her having many of them if any while she was receiving Bowen Therapy so it will be something to watch when we start that again.

She seems to have finished her 'grumpy' session today tho, and has been a good girl playing in her chair, her standing frame, going for a walk and rough-housing with her dad. While she brought dinner up twice in a row on our return, I think that was due to being jet-lagged and falling asleep with wind, as she seems to have kept tonight's dinner down well. We are really anxious to get her weighed, as we both think she has been eating a lot more than usual, and drinking more milk. She feels heavier to me - but I have thought that before and then been shot down with another weight loss, so I'm trying not to count my chickens! I have really felt for a couple of weeks now that her smile is bigger. There are new creases in the sides of her mouth when she smiles, almost dimples but not quite, that I think were not there before. I'm not sure if it's because her smile is bigger or if it is more even, but it is certainly more readily displayed. I have heard Rob getting a lot of giggles out of her lately too. Granted, they are during 'blinky' seizures, but this is almost always when we have heard her laughs.

She does seem to have a bit more trunk control as well. Sitting back in my usual seat with her, playing our usual games involving her leaning right back and then pulling up again, like a baby sit up, she is definitely lifting her head higher and you can feel her saying 'up now' with her body quite definitely each time, where this used to only be once or twice and very subtle, then it was too hard for her or she lost interest. She seemed to really want to crawl this afternoon as well, while kneeling on my torso as she often does with assistance. She wanted to go and see what was on the coffee table to the side, and made definite moves in that direction.

But it is a hard thing to explain, to define. She does seem a bit 'different', but not spectacularly so - not that we are expecting amazing changes yet. As I tell everyone: 3 - 6 months!! She is a happier child on the whole I feel, which is good, and eating better than she was before we left. Fingers crossed that means a heavier child at the next weigh!

No noticeable decrease in her seizures, but this is difficult to monitor with her having brought up most of 2 nights' worth of meds, so we'll look at that again once her levels will have stabilised again.

Returning to Dunedin has reminded us just how many people have been waiting, hoping and praying, and I'd like to take this opportunity to thank everyone who has been involved in getting Daryl-Ann this treatment. We know there are many people out there who have been really touched by Daryl-Ann. We met many more people like this while in the States. At a fastfood outlet, Rob and a man started talking about football in the bathroom...and that ended up with him coming over to our table afterwards to meet Daryl-Ann and wish us all the best. The lady on the next table overheard and came over to pass on her regards and to ask if she could pray for Daryl. When eating our last lunch before leaving the US in a diner type place, the waitress asked where we were from, and the whole story came out (as it often did while we were there). The waitress' daughter had 5 year old triplets, and said we reminded her of her daughter, in that we all had the attitude when asked 'how do you do it' of responding 'this is normal for us - we know no different.' I think Rob and I forget that a lot of the time, which is why we are so surprised when Daryl-Ann has such an effect on people! By the end of it the waitress and I were shedding tears and Rob er-hum,...had something in his eye.

13 Mar 09

Daryl's feeding and drinking continues to improve, she is eating more and faster. Her tolerance of sitting in her seats is still good as long as that seat is moving! Unfortunately her sleeping remains quite awful - with last night's screaming continuing from midnight till 7am! (Granted it slowed after 5am!) Hopefully when we return home we'll be able to establish a better routine with our familiar things/times/places. We are enjoying our last day in cruisy San Diego's Ocean Beach before returning (only due to our bungalow being booked from tomorrow again) to LA before our flight out on Wednesday night. Unfortunately they threw daylight savings at us here too, so we will be having 4 time changes in 4 weeks! Not looking forward to that LOL! So we can say Daryl has seen no ill effects from the surgery, the two sites where catheters were inserted have healed just fine, and she has not received any damage. There is some slow improvement in her eating and interaction with her world. We just have to keep reminding ourselves we're not really meant to see anything for a few months!

10 Mar 09

I feel we have improvements, in that daryl can now sit in her car seat for long spells with minimal entertainment, she sat in her pram the whole way around the zoo, and that was like 4 hours or more, and in the car seat there and back without problem. She is more tired at the moment which is what we expect.

She smiles more readily, and seems to smile more in response to us or a toy she really likes. She may be holding her head better but I can't be sure on that one, nor do I think there is any real improvement with her seizures. It will be hard to see improvements until we get back home and get a real routine with all her normal equipment. I think she's improved since treatment anyway.

3 Mar 09

I am writing this in the recovery room. Rob is sitting very uncomfortably on the bed, holding Daryl who is now out like a light. The surgery went well, although it seemed to us that it took them a long time to get the catheter threaded, it appeared they were having difficulty. However it was done, Dr Ramirez said they got all the way up to the brain. I defrosted the stem cells in my hands. George our driver had brought a small eski type thing and it had dry ice and a signed vac packed bag with the two vials of stem cells in there. He opened it onto my hand, I defrosted them (still ina plastic bag tho) and then I opened the bag and put them into the metal tin that was taken into the OR. Just after they put the stem cells in they were flushing the catheter and the tube popped off! Caught it on camera. They got it sorted in the end, and drew out the blood we need for the blood tests which we'll drop off at a lab in San Diego. They'll send the results to Dr Steenblock. Daryl has had a few of her screaming fits in recovery. They gave her an extra bit of tranquiliser I think it was to help her calm down while the sick feeling of the anaesthetic was wearing off. She S just starting to wake up now. She has a drip in her leg giving her fluids in the meantime. She's still pretty tired and drifting in and out, but not really waking up properly yet. She's still doing the occasional scream but just because she's tired and feeling sick. George picked us up at about 10.45 and took us through the border and to the hospital, which is literally like the 2nd building on the right once you're through the border. We came up to the 4th floor and were brought into what would be her recovery room. We filled in a form, they gave her the pre-med and then took her into the operating theatre. George kept us occupied in another room while they put her under and got started. Then we went into the viewing area, I did the stem cells, Rob did the video recording. There was a bit there where it seemed her heart stopped. Brings back memories of NICU and all the machines there, but there they don't run every time a machine alarms, and it was the same here. All seemed better after that tho. We went back into the waiting room and hung out there until she was in recovery. So she's naked except for her `Pampers` which is what they're calling her nappy, and a fluffy maroon blanket around her. Rob's uncomfortable so Daryl must be fine! Rob and I are both tired and will very much be looking forward to lunch at some time! (its 2p now). So that was stem cell therapy. So easy, hope it does something!

26 Feb 09

Another day of getting organised and used to the move in timezone. Of course we're still wanting to wake 3 hours after everyone else, so by the time we get out of the hotel room it's lunchtime! Have met many people over the last couple of days who have stopped us to say how cute Daryl-Ann is! Lovely. Vast majority of Americans we've met are very friendly, although service tends to be slow and they don't really go the extra mile like Kiwis do. Picked up rental car today, off to San Diego in the morning.

25 Feb 09

Hello to all the wonderful, interested people out there! We have made it to LA with no hiccups. that's the hard part over! We did take the trolley bus down to a shopping centre today, to go get nappies and puddings for Daryl etc...but we couldn't find the stop to get back on the bus! So after a bit of enquiring and a 20 minute walk down the road carrying Daryl and the shopping (100 nappies are pretty heavy!) we got on the trolley and came home in the dark! Rob fell asleep early after getting no sleep on the plane, and Daryl was a pretty good girl too - think she was pretty tuckered.