Prop and Rock

Today, Sheena was not up to much on the living room floor, so I popped her in her high-chair, and then she was off. She started banging toys around, and was very pleased with herself. She can be so hit and miss. Sometimes she will be so excited about not much, whereas other times we'll be trying hard to get her interested in something, and she couldn't care less.

When she is propping in prone, she now rocks from side to side. It is very cute.

Last night while at friend's house for a party, it was our first night that we've had to do the sleeping baby move from spare-room, to car, to bed. We'd relied on Nan or baby-sitters previously. Sheena woke up, but was just really smiley, and when I tucked her into bed, she went down no-worries.

Black Cockatoos

I have added several photos to recent posts for everyone that has missed Sheena pictures lately.

A nature update from our house. We had some Yellow-Tailed Black-Cockatoos over the back fence.

Hangin' out with Cousin Mark

My sister's family are down in Melbourne for a visit. Spent the day yesterday shopping for some clothes for her. Sheena was lugged around a bit. Feel bad sometimes if she is in the buggy or the car for too long, as it certainly doesn't help her muscle tone. Nevermind, she had a few baby-cise sessions, and was very lively in the evening.

Today, I finally took her into the Childrens for a blood test. It was a disaster. We were both crying by the end of it. Sheena was crying so much she was choking. She is alright now, but at the time it was horrible. The senior guy couldn't find any veins, and they had to resort to a heel prick that they'd usually only do on a younger baby. She now has 4 band-aids. 2 on her fingers, 1 on her arm, and 1 on her heel.

A First Tooth from Santa

We had Christmas in the Bush this year. We visited family in Nathalia, which is about a three hour drive from Melbourne. They have a dairy farm, with about 60 cows – no break from the milking so it suits them better to stay at home have family visit them. We loved getting out of Melbourne, and the Bush was great for mountain-biking, although the flies were disgusting.

Sheena had a wonderful Christmas. She got her first tooth on Christmas Eve. Bottom left, and thankfully she hasn’t seemed too fussed with it breaking through. She was very excited on Christmas day, and was all chat, and all smiles. She liked being rolled around, and liked being helped to sit up and watch everything. She was delighted to have all the extra company. She skipped puree for Christmas lunch and instead had roast pumpkin, and cooked turkey sitting on my knee at the table.

The family we were visiting had a son who passed away a couple of years ago in his early twenties. He had a genetic condition called Fredrick’s Ataxia. Not noticeable until he was about 8 when he all of a sudden started having trouble with reading, and with co-ordination. It took them 18 months to get a diagnosis. Before we had Sheena I had no idea about the emotional turmoil that having a kid with extra needs can place on parents. I would think of the practicalities, like the extra time it would take to get him in and out of the wheel chair, or how restricting it might be for holidays. I did not at all understand how difficult it would be to see your child’s abilities regress. They saw it slowly, and while Sheena had her epilepsy we saw the process happen rapidly. I feel a lot more equipped to be able to talk to people about life’s hurdles these days. I would have dodged the subject previously, but now I know how nice it is for people to show genuine interest. Live and learn.

Sitting Up like Jackie

Sheena recovered very well from her General Anesthetic. I still gave her plenty of re cooperation time, and she had a pretty relaxing day all up.

She is slowly starting to eat bigger quantities of food. This morning, she had almost a whole weatbix, for lunch she had carrot and yoghurt, and for dinner she had pumpkin, a taste of mango, a taste of banana, and then finished off her yoghurt from lunchtime. Yes, Sheena LOVES yoghurt. She might have been so interested in food today because she only had jelly yesterday during her recovery.

Here she is sitting up like Jackie during a good long chat with Nan.

MRI

Well the day did not run smoothly at all. I barely slept, thinking that Sheena would be very difficult to manage all morning because of the fasting. I was awake waiting for the 4.30am alarm to go off, so I ended up feeding her at 4am, just to get it over with. She went back to sleep, not a bother, and all morning she was a dream. I kept her activity levels to an absolute minimum, and left her in her cot until 8am, despite her being awake at 7am, as I thought she'd start expecting food if I got her up. I only got her up at 8am, because she needed her Epilim then, but she was absolutely fine.

Hubby took some time off work to come into the hospital with us, and we got in there by 11am, as requested. "They'll just be 20 minutes". Fine, that is expected... Had a brief consult with a nice nurse who read through the brochure we'd be given. "The anesthetist will just be 20 minutes" OK... This went on and on and on and on. Several people came to speak to us that did nothing at all, other than move us from one area to another, or maybe come to say, "they're just a bit delayed because patient X had to have a lumbar puncture while under the GA". Then at 12.30, we were told that it wouldn't be until 2pm. By this time, Sheena was wilting on my lap, her fontanelle sunken, and she was not asking for food. I said to them that I didn't want Sheena to be sick for the next week because of getting dehydrated thanks to all of these crazy delays. They said that they wouldn't let that happen, but even-so, I ensured that they give her some fluids while she was under so that she'd have the oportunity to bounce back. I also asked them if it was a 'lunch time' issue, because by this stage, I didn't really care if that came across as rude. "No, that's not it", the Dr said, not looking me in the eye. I don't think it was any coincidence that she was held further still from 12.30 -2pm. Eventually 2pm came, and Sheena was given the gas, and the MRI took 30 minutes. Just as she was about to go in, I overheard them requesting a bed so that Sheena could recover for 4 hours. Upon asking what that was all about, they explained that after we'd had the consult with the Anesthestist, Sheena was classed as 'high-risk' because of her heart issues, DS, Pred treatment, and dehydration. In short, it was really only the dehydration they were worried about, because previously they've only ever given her the usual 30 minute recovery period. I know that some delays can be expected, but it was really ordinary that her health was being comprimised to the point that the procedure became 'high-risk'.

So eventually she had the MRI, and we all got home in one hot-piece. Sheena is recovering well, and is smiling and cooing, along with crying and whinging.

Muma Mumma

We had a much needed day at home. Sheena had her physio session - a bit grumpy with the whole affair, but not too bad. After stressing and stressing about this blood test that Sheena has to have, I have decided to wait until after Christmas, because it is not urgent anyway. The whole MRI ordeal will be enough for her this week, so if I can avoid the bloods, I will.
Sheena is now saying muma mumma. When I bring her close to me, she says it, with a very concentrated look on her face. When she is grumpy, she says, Nan Nan Nan Nan, Nan. Sorry Nan.

So tomorrow is the MRI day. She has to fast from 5am, so I am going to wake her up for a feed, then hopefully she will fall back to sleep OK.

Sheena has gone from a love affair with her hands to a love affair with her feet.

T'was the Week before Christmas

I had a very hectic start. We've got a lot of appointments this week, and they were at difficult times. I spent the first hour of my day trying to rearrange things so that things could run reasonably smoothly. This is the smooth version....

Today: Chiro across town
Tomorrow: Physio at home
Thursday Morning: Blood Test at the Children's
Thursday Afternoon: MRI (under a general anesthetic) at the Children's

I had really wanted Sheena's blood done while she was under a GA, but that is not going to work. She needs to have the blood test just before she has her Epilim first thing in the morning or at night. The MRI is booked in for midday, and that can't be changed. I am still thinking of not doing the Blood test on Thursday morning, because Sheena will be fasting, and I won't be able to give her a comfort feed after the blood test. She screams, and gets very distressed. I might end up doing that Thursday evening, or Friday morning.

It's really difficult navigating through all of this stuff - and this is just the medical side of things. Concurrently, I am also working out what sort of Early Intervention we are going to have for Sheena next year. With a week like this, I can see why we qualify for respite even when Sheena is not acutely sick.

So that was the hectic bit, then the fun bit. We had our Mother's Group joint birthday party for the babies. Sheena had a fantastic time, and played very well on an activity mat, and smiled at the other babies when they came over to play with her. It helps that she had a 12 hour sleep overnight. She was much better at this party than at the outdoor celebrations over the weekend, so maybe she was more comfortable.

Here she is asleep in the car after too many Christmas parties.

Catch Up - The Rest

The rest of the week was all good. Sheena is now playing with her toes for a good length of time. Her Childcare day went fairly well, but she didn't sleep well again. We took her to Christmas Carol's with some friends, but she seemed pretty overwhelmed by everything, so was not really in the groove of it. Likewise for a BBQ we went to Ava's first birthday party. She was pretty non-plussed, but I think she was effected by the heat - even in the shade it was hot. She doesn't really play much outside, mainly because she isn't mobile yet. Probably just sitting outside in amongst all the celebrations was enough for her.

Catch Up - Sheena's Scare

Sheena has had an eventful week, but I haven't posted any updates because our ISP has been messing us around.

Last Tuesday, before the mother's group Christmas Party, Sheena looked to have a cluster of spasms. It felt like we were back to square one. I rang the neurologists to request an urgent EEG. Thinking that they would be fully booked until after Christmas, I was ready to go into battle for Sheena, but they got us in the following day. I somehow managed to stubbornly pull myself together to go the Christmas Party, because I think normality helps. Besides, I had already made the strawberries dipped in chocolate, and bought the champaign.

So the next day, Nan, Sheena and I head off to the Childrens for another EEG. The whole thing was very nerve-racking for us, and for Sheena, quite distressing. She hates having the things stuck to her head, and screams so much, that once it is finished she goes into an exhausted sleep (exactly how they want her for the test). We could immediately tell that the EEG looked fine. We now know what a really bad EEG looks like vs an organised one. The technician who does it is great. For one thing, she is really fast at sticking all the stuff to Sheena's head, and she provides a lot of information about epilepsy in general. She said that some people have a bad taste in their mouth before a seizure, which is their 'aura' which could explain why Sheena was obsessed with her mouth for a while there (but not teething). She also said that even if people are on anti-convulsants they can still have an aura, but not a seizure.

We had to wait for one of the neuro's to check the EEG, and Monique said that it looked 'very good'. Sheena has never even had a 'good' EEG - she has had an 'improved', so we were delighted that it was 'very good'. We all agreed that her cluster of spasms, were most likely just little jolts as she was going to sleep. Of course, with Sheena's history little jumps are pretty scary for us to watch.

Nan and I celebrated with a lemon slice and a coffee at the hospital cafe.

Sheena Snuggles with Santa

Yes, Sheena didn't just sit on Santa's knee, she went straight in for a snuggle. We had a Christmas party with my local mother's group today, and one of the girl's had organised a visit from Santa. Some of the babies were not too sure when it was their turn to get their present, but I think they could all tell that it was a big deal to sit on Santa's knee.

Chatty Sheena.

Sheena has started consonants. It was Nan Nan Nan Nan (Aussie accent) this morning while she was in bed trying to get our attention. Then later in the morning it was Da Da da Da. As usual, Mum hasn't been uttered yet, but it did sound like it when she was saying Nan with rings in her mouth. I get the most smiles, so I am not complaining.

She is very funny at the moment with her chatting. You can tell when she is waiting to say something, and then when you give her a chance to speak, she goes on and on and on and on. She isn't interested in just saying Ga, or GaGaGa, she says Gaaaahhhhaaaaahhhgggaaaooooohohhhhhhhhhhoohhh, for 20 or 30 seconds before she has got it off her chest. She spoke to her Nan and Pop at great length today. They had not seen her for a few days, so there was a lot to catch up on.

Here is Sheena in her Canadian Skort (skirt and shorts in one). One of her aunties in Canada gave it to her. Check out those rubber-band arms.

Still Hot

We are still stuck in side from the heat. We even moved downstairs for the day, because it is a lot colder down in the rumpus.

We received a parcel from hubby's mum in Ireland. She sent two gorgeous smocked Christmas dresses for Sheena. One green, and one red. Isn't it just gorgeous - all the detail, and even the little sleeves are shaped like a fairy-dress.

I saw the poor baby-possum trying to get comfortable in the ensuite window sill this morning. The window wasn't open, but he was still trying. Must not have been much good, because he'd moved on the next time I went in there.

No Possums, Spiders Now

Sheena was stuck in the house all day. It was 37'C today, with lots of smoke in the air from distant bushfires, so not a good day for a baby to be out. We stayed in too, apart from me doing a grocery shop and an early morning bike-ride (despite the smoke).

The possum has left. A good thing too, because we needed to close the ensuite window for the air-conditioner to work. Never boring at our house, there is also a red-back spider living on our front fence. We were doing some weeding, and I came across this deadly little spider, and her egg-sac of more deadly baby-spiders ready to wreak havoc.

So, back to Sheena. She was great in the bath tonight. She's always liked a bath, but just having one was usually exciting enough for her. Now she is getting a lot more interactive, and laughs when we squirt her with a bath-toy. She also seemed to like being dunked for a change. I had her sitting facing me, and I was trying to get her to balance herself. I was giving her kisses, and she leaned in for more, and put her hands up against me to stop her face falling into the water. This is great, because we haven't seen this reflex before, and its needed for when she starts to sit on her own to avoid whacking her face into the floor.

Here is a photo of Sheena about a week ago while she was going through a "My hands amazing" stage.

Possum Patrol

We've got a baby possum that is living in our ensuite window sill. It is really freaky to be brushing your teeth, and this little possum is staring at you - half looking terrified and half looking friendly. I am generally scared of wild animals, so I am always assessing if the little thing is going to claw its way into the bathroom, and start scratching me all over. It is probably wondering the same thing. So we have this I am scared of you, and you are scared of me thing going on. I wonder if it will be there tomorrow morning.

Sheena had a physiotherapy appointment today. She worked very hard for an hour, then had a drink and a 2 hour nap. Poor bubba, its like doing a triathlon for a 11 month old. Her physio is keen for Sheena have lots of over-the-top activities to get her going. I will give it a go, but I think Sheena is moving ahead leaps and bounds all by herself at the moment anyway. Sheena has to do so many exercises: kneeling, squating, rolling over a cylinder thing - it is really intense. It is actually very hard for me to support her while she is doing it, so my abs get a work out at the same time. She is over 9kg now, so she is heavy to hold while trying to make her use her own muscles to move or bear weight. Our project of the week is to get Sheena's lower abs stronger, so we'll keep this in mind whenever we carry her or position her.

Sheena's First Report Card

Here is Sheena with Cam from her play group. Aren't they the cutest.

Two days in a row, Sheena has decided to barely sleep in the day. Hmmmm. Not happy with this little trend, although it has not been her fault. Yesterday she was dozing off, and she got rudely awoken to have some Chiropractic treatment. Today, she was in Childcare for the day, and she is probably struggling with the noisy environment. Despite not having good long naps, she has been a delight. She has been really smiley, and very enthusiastic to chat, play and wriggle.



At Childcare, they write a little summary of the baby's day. Here is what they reported about Sheena:

"Sheena has been very alert today with good strong movements whilst on her tummy. Sheena enjoyed one of the older children interacting with her. Sheena enjoyed playing with the rattles and has had a good palmer grasp of these. Sheena has also been very vocal today and has responded well to carers."

I was assured that her being very vocal was not been her being upset, but rather her very chatty nature, where she likes to ahhhhhgggoo back to anyone who pays her the slightest bit of attention.

She was so excited and alert when we got home after picking her up from the centre. I was expecting her to be really warn-out from such a long day, but she was so stimulated and responding to everything with great enthusiasm. This wasn't a 20 minute patch, but it went on for almost 2 hours. She only gave in after having a bath and then a cuddle.

Jo's Theories

One of my theories about the 20 second seizures that Sheena developed while she was on her Prednisolone treatment, was that they were caused from severe calcium deficiency - or hypocalcemia. Other than the seizures, the most prominent symptom was her dreadful grimacing and eye fluttering.

Today, I started to Google for some fresh blogs to read - particularly other bloggers that have kids with IS and DS (none found so far - but still looking). While searching, I found an article on 'Calcium and Myoclonic Seizures'. http://www.researchinghealth.com/?p=3174 which also theorises that calcium levels can have an influence on seizures - particular seizures in kids that have DS. The main reason that I am VERY interested in this still, is not to prove that my hypocalcemia theory was right, but rather, it might mean that Sheena doesn't have to take Epilim to control seizures. She might have only been having the seizures because of the Pred. When I told the Neuro about my calcium theory, he said 'unlikely', but I plan to push the topic a lot more in our next appointment with him.

Other than my latest and greatest medical theories, Sheena and I hosted Local Mother's Group today. I call my 'Mother's Group', my 'Local Mother's Group' to my family to avoid confusion with the 'Down Syndrome Coffee Group'. I wanted to avoid having to say my 'Normal Mother's Group', for obvious reasons. Recently I got completely confused, and called my DS Coffee Group, my 'Local DS Coffee Group'. Anyway, it was boiling hot, so we ramped up the aircon, and stayed inside the house; talking, eating chocolate-cake and icecream. A typical day in the life of a new mum...??? The babies all had a ball playing with the Christmas tree, and Sheena's toys got a work-out too. Sheena got kissed, hit on the head, and surrounded by the boys (not all at the same time). All the babies loved it.

In Amongst It

Sheena had a very exciting day yesterday. She seems to have really responded to all the new toys we bought her, and is a lot more excited about things. It helps of course that she is on her 'happy pills' (antibiotics) and is feeling good.

I was hopeless again, and opened more of Sheena's Christmas presents, because I couldn't wait. Here she is in amongst her new balls playing catch. I didn't get a good photo of her looking really excited, but here she is looking shocked instead.

I had to go to Noah's Arc toy library to borrow another corner chair for Sheena so she can have one Childcare. They found one that fitted her, but it is really old and ugly (really ugly), so I asked them if I could paint it, and jazz it up a bit. It wouldn't be right for her to be sitting in such an ugly chair. The therapist was fine with that, and actually said, that she couldn't agree with me more, and that she hated having to lend out such old equipment - but as usual, its a funding thing.

Can't wait for Christmas

Sheena is feeling good today. Unfortunately it took antibiotics again to get her there. She's been sick since Tuesday with a cold/infection, so she's been miserable and running temperatures on and off. I went to the Doctor yesterday as she was 38.3 and sleeping most of the day, off her solids etc etc.

She missed childcare on Thursday, which is a big shame. Childcare have already organised an extra staff member in the baby's room for when Sheena goes. It is government funded, and its been approved for Sheena very quickly. One of our friends took 6 months to secure an extra staff member for her daughter. As usual it makes such a difference depending on who is coordinating it, and we lucked in this time. After my friend's experience, I was hassling them a lot about it, so that probably pushed them on a lot. Most of her issues are small at the moment, but add them all up, and she is a lot more work than most 10 month olds. She's only taking puree, slow with her bottle, needs early intervention activities. All this stuff takes more time - so I am feeling happier that she's going to be well looked after while in the centre.

The upside is that now Sheena is back on her happy pills (i.e. antibiotics), she is interested in life again. I went to Windmill's today, and got Sheena a few things for Christmas. Their toys are fantastic, so I couldn't wait for Christmas, and Sheena had a great time playing with them in her corner chair.

Sheena's Daddy gets smiles very easily as you can see.