Aerobics Anyone?

I think Sheena looks ready to go for to the gym in this outfit. She has been very playful and fun now that she is back 100% healthy. It was bad ear infection, so we're glad its finally over. We're also glad not to be woken up every hour or two over night while she was unwell.

She had speech pathology on Friday, and she has a love-hate relationship with her Speechy. She loves the attention for 70% of the session but when the oral-motor stuff comes in she gets quite upset with the Speechy getting her hands on Sheena's mouth to show her the movement for various sounds. It is very hands-on, but the Speechy is smart enough to leave that bit to the end of the session, so it is mostly fun for Sheena. She thinks Sheena is very sweet and cute, and of course I have to agree :)

Some of the activities including trying to get Sheena to blow out a candle, putting Nutella on a spoon, and getting Sheena to raise her tongue so that it licks her upper lip without lifting her chin in the process, general vibrations in and around the mouth to develop her overall tone and awareness of the area. Putting pressure on her tongue so that it uses muscles to build up resistance. There is a lot more activities too, but you get the idea.

We're teaching Sheena to sign "I want more sultanas", or "I want more .....". She concentrates hard, but hasn't got the "want" worked out yet, so we usually let her get away with just signing "more", but assist her with the "I want more ....." before we give her more. She's still go a few words developing, which is nice to see.

Not so nice is Sheena's apparent claustrophobia. She freaked out massively in the lifts at the hospital like I mentioned, got distressed when we took her into a maze, and then yesterday cried for 10 minutes after I took her into a public toilet with me at the library. Hubby read that it can be just a phase like some kids have separation anxiety when they're around 1 yr old. Hopefully this is the case.

Runaway

e

After a restful Easter, Sheena has improved from her infection.

She's back to her usual self now, and is all go, go, go. I've promised myself I'll never complain about a healthy amount of energy given we were asking the Dr at one stage if she'd ever walk.

Here she is on one of her many runaway as fast as you can adventures.

Easter Time

We've had a quiet Easter. Sheena is recovering from a very bad ear infection. She picked up on Good Friday, after the Dr changed her antibiotics Thursday afternoon. You wouldn't think from her tummy in this photo that she's been off food for a week.

We did check out a fantastic new playground today, where there is lots of very modern swings, flying foxes, sandpits and slides. The swings and flying foxes had a variety of seats, some that cater to children with special needs. Sheena is still too floppy to hold herself in a swing without back support, but this playground had a few that let her swing independently. I think we'll leave the flying foxes for another year yet though.

A new look.

Just wanted to share the pigtails.

Our Horrible Wednesday

We had a horrid day. 2 hospital appointments. Sheena had a febrile convulsion 3 wks ago, so she needed an EEG to see if it was epileptic, or 'just one of those things' that baby's can have to stress out their parents. With Sheena's history the stress levels were +++++.

Her EEG was at 10.30. She hates them with a passion, and gets very stressed out and cries. Fortuntately Hubby came with me to the EEG, as I knew it would be a horrible experience. It was...

Anyway, Sheena also has developed a fear of lifts. Impossible at RCH to manage a chubby bubby, a pram and 8 flights of stairs without using a lift. Of course the lifts are crowded, so its a case of stopping at each floor, and her trembling and screaming all the way. I don't know why she is so fearful - whether its the noise, or confined space or the pressure.

As hubby was there after the 1st appointment, I walked her down the 8 flights of stairs rather than her getting more upset in the lift again after having just had the EEG.

Then, we had and early lunch, and Hubby had to go back to work. She wasn't very hungry after her EEG, but afterwards she was a ball of energy, and wanted to run up and down the corridors. I have to shadow her, because you never know where the stairs are, or if a door is going to be opened. Sheena doesn't manage stairs at all yet, so even a step could be a disaster. Of course at 7 months pregnant, the frequent pick-ups to stop her causing a raucus got rather wearing. The Starlight indoor play area was closed over the lunch hour, so I took her outside to the playground. With the temperature in the high 20s and in the the midday sun, fair Sheena (without a hat - because why would you take a hat to hospital), and her pregnant mum could only manage the sandpit for 15 minutes before we got too hot. Back inside, and more running up and down the corridors (with me now rather hot as well as bothered). The Starlight room was 20 minutes late to open, so we only had 10 minutes of relatively easy playtime with cool toys before we had to go up the dreaded lifts again to our Neurologist Appt. Another 8 floors of screaming and genuine fear. Very stressful. Now at 1.30 Sheena was tired, and happy to give me cuddles in the waiting room rather than running the corridors.

The Neurology Appointment was all good news. Sheena's EEG was perfectly clear. While she had her EEG which lasted about an hour, she fell asleep from exhaustion from crying so much, and this optimal for the test. While she lay in my lap, she did several 'jumps' in her sleep that Hubby had been worried about. Fortunately from her being monitored and videotaped, the Neurologist could rule them out as being anything sinister, and they were just normal myoclonic jerks that everyone has in their sleep.

So, an eventful day. When Sheena and I got home from hospital, we both managed to have a much needed nap.

Ap-ple

Here we are eating a big chunk of Apple, or Ap-ple in Sheena-talk. A dietition came to speak to the mum's at Sheena's EI Playgroup. After talking about eating issues with the other parents of kids that are developmentally delayed, I realised that Sheena is actually doing very, very well. She doesn't mind variety, textures don't stress her out too much, and she'd prefer bread over a muffin, actually I think she'd prefer bread over anything at the moment. This is not to say that we don't have issues on the eating front. Sheena's system is not 100% and she'll still spit-up about 3 times a day. We could opt to go down the medical line of having drugs to stop the reflux, but its not bothering her, so we're going down the regular washing line instead. Also, as I have mentioned before, we're having a long haul with the spoon feeding, but that is a fine motor/co-ordinatation issue. She can finger feed OK, and she's recently learnt to eat toast in mouthfuls herself, rather than me cutting it up for her.

Sheena has spoken

We're getting a few words from Sheena these days. She can say book, apple, paper, more, ta and once she said Wiggles as clear as day when I put it on for her. Her signing is expanding - she can now do biscuit, saltanas. Biscuit is rather flash for those that know Auslan, as it takes a bit of fine motor to perfect it. We're currently working on 3 sign sequence: "I want food", or "I want book". I was baby-sitting a baby boy recently, and its a habbit for me now to do sign language with little ones. I was reading Sheena and him a book and asking him if he wanted more, doing all the signs for the animals in the books and the sign language naturally just goes with it these days.

Sheena is going to have a little bro or sis in the house to keep her amused in 3 months time. Should keep her mum and dad amused too I am sure. Sheena has been wondering why her mum is soooooo tired these days. The tiredness did not seem to go away after the first trimestor like it is supposed to.

Maggie Simpson

Sheena has been doing a very good Maggie Simpson impersonation after she wakes up in the morning: see the video.

She's doing fairly well. She's on the mend from a bad cold that she caught from me. Saturday was not a good day, when she had a fever of 39 in the morning. We're looking at her weekly routine, and we're investigating an alternative EI program that she'll be eligible for in August. Her current program is only 2 hours a week, whereas this alternative one is 12 hours a week over 2 days (sort of school hours). We're going to visit the centre this week to see if it looks suitable for Sheena. Early Intervention is far from uniform depending on where you live in the world, and which service you're tapped into, so it will be good to see what else is available for Sheena.

Drummer Girl

The big hit (quite literally) for Sheena's 2nd birthday was her drum kit. Here she is jamming with cousin Mark:

http://au.youtube.com/watch?v=X4KbU7SgZOQ

She had her first day in the 2 y/o + room at creche. She managed it very well, and even had a 2 hour sleep on a floor mattress.

She's learning the new routine for the toddler room, like having to go and get her own hat before going outside. Thankfully one of her favourite carers from last year is also in the room, so she's in good hands as she adjusts.

Goodbye Tears (hopefully)

The tear duct probe surgery went fairly smoothly yesterday - but we're not sure if the operation was a success. She was still tearing a bit today, but we have to wait 1-3 weeks before we'll be able to tell for certain. The doctor said that the blockage was significant.

She was far from thrilled when she woke up after her operation. She was awake 5 minutes after it was over, and its usually 15 minutes. She howled for the 10 minutes that she should have still been under - really disorientated from what she was feeling. Although they were convinced she wasn't in pain, they gave her a big dose of panadol, and that allowed her to relax.

Sheena took the hospital visit (pre-op) as an oportunity to practice her walking. The long hospital hallways were irristable, and her toddle combined with squeals of delight at her own efforts had quite a few hospital staff chuckling. Today, she walked to Nan's neighbours house - all the way from the back door, along the driveway, and along the street. Its taken over as her main means of getting around, and we're not seeing as much of the bum shuffling.

The (therapy) holidays are over

We've had quite a break from all the Early Intervention therapies over Christmas and NY. I really needed the break, and Sheena has probably liked it too, where she can play completely on her own terms without me trying to tell her to sit/stand/walk in a certain way, hold her mouth in a certain way, and basically without me in her face as the mum-meets-therapist. You never lose it altogehter, because the techniques are definitely never completely out of your mind, but lets just say, that I have been pretty easy-going about it for about 2 months However, it all starts again this month. As you can tell, I am still trying to rev up the enthusiasm for it again, but it got off to a good start yesterday. I've started Sheena with private speech pathology sessions. She had her first session with Mrs M yesterday, and we both liked her energy. Sheena was giggling at her antics quite a lot, because she was nice and animated. Our homework is practicing labeling of objects. Sheena doesn't point at things to show me what she is after or looking at, so we don't say, 'Thats the light", or "Thats the red flower", etc etc. We really just interpret what she's interested in, and tell her, but it is harder to get the connection. Otherwise, our homework is we have to teach her "the same" (common objects), and try to get her to nod or shake her head rather than doing sign language for yes and no. Mrs M thinks she is very capable of that. We're going to try to blow tissues, and to bubbles which we haven't quite mastered yet.

I am happy to have found a speechy that Sheena immediately liked, who connected well to Sheena and who only lives 5 minutes down the road. She seems really good, and seems to be quite proactive in getting rid of bad habits nice and early, and giving me solid strategies for her day to day. Hubby is going to go to the next one that he is able to make, that is how useful I found her.

Next on the therapy list is setting up Sheena's six monthly goals with her Early Intervention Special Ed teacher. Spoon feeding is going to be on the top of the list, because that is one that we think she's able to do, but is happier to have mum and dad do it instead. We also think she could learn climbing up and down stairs which will give her a bit of a go on playgrounds outside.

Otherwise, Sheena needs people to wish her good luck this week, as she is going to have tear-duct surgery on both eyes. It is a day procedure, but she'll need a general anesthetic, so that makes it a big enough deal. Sheena-pops has to fast for 6 hours before the afternoon procudure.

Persistence, persistence

Sheena is rapidly improving with her walking. She is very keen at the moment in getting into standing to walk without holding onto anything. She managed it very well tonight, and persisted at it for half an hour. I was exhausted just watching her, its like watching a gymnast's floor routine, because its not the usual pattern of squatting then elegantly standing, it is much more impressive than that - and involves a remarkable amount of acrobatics. She was puffing and panting by the end of it, and I was offering her milk just to get her to sit for a while.

Thankfully, her parachute reflex of putting the hands out to catch her falls is working remarkably well for a little girl that didn't ever crawl. Her arms and shoulders have never had that opportunity to build up the strength to catch her falls, but Sheena doesn't seem to bothered by that.

The Year Begins on a Good Note

Sheena is back at creche. She'll be going 2 days which I'm trialling now that she doesn't need as much sleep during the day. We are all going to miss her carers from last year, who took so much interest in her, but hopefully the new ladies in charge of the room are equally as nuturing.

This week, Sheena had a review appointment with her Neurologist. She got the all-clear, and we don't have to make another appointment with him. Given that at at 9 or 10 months she was having 150 seizures a day, this is an outstanding result. Her Neuro was delighted with her overall development, and said that this can sometimes happen with Infantile Spasms - especially in children with DS. While usually considered a catastrophic form of epilepsy, if tackled aggressively enough with medication, it can have no ongoing significant impacts. Looks like our Sheena has fallen into this category. I never thought I'd ever be greatful for Prednisolone - which made her so sick and unhappy, but it was her miracle drug.

Yesterday, she walked all the way from the TV to the couch at Nan's house - which is about 5 meters. She can only get into standing by climbing up on something. She hasn't yet sorted out squatting, then standing on her own.

Toddler Time

A lot has happened to Sheena since the New Year. She's turned 2, and she's started walking. The day before her 2nd birthday she took her first independent steps, and now its at every oportunity. She doesn't like me putting her into standing - she has to get there on her own, work out her balance, then take a few steps between A&B. She's managed about 5 feet so far - going towards food that time of course.

I see the sea

It would be an understatement to say that Sheena enjoyed our holiday at the beach over Christmas. We took her to see the seals, the koala reserve, she had a few ocean swims, and lots of bike rides. We had lots of time to practice spoon feeding - which is taking us a long time. Holidays are good for that of course, as there are no appointments, and everyone is relaxed. Her hands are really soft like marshmallows, so spoon feeding is proving to be quite a challenge, but she is progressing well. Just happy to have some progress.

Santas little helper

Sheena is over the worst of her gastro, and she is back to eating and drinking. She lost a lot of weight, naturally enough, so she'll be able to have a few extra Christmas treats - namely trifle I am sure.

We had some flooding in the house yesterday. Luckily hubby was home caring for Sheena at the time, as I'd have hated to be the one rushing around getting buckets, let alone neither of us being home, and the house being properly flooded. Here is the water gushing through the lounge

window:

:

Wait and see.

Sheena had to get a nasal-gastric tube put in today, as she's become worse with her Gastro. She was so sick, she had no energy to put up a fight when they put the tube in, but they had 'boxing glove' bandages on her anyway just in case. They loaded her up with 600mls of gastrolite, and I was expecting a bright and bubbly little girl by the end of it, but she was still very lethargic and listless. There is nothing they can do to treat Gastro, other than make sure the kids don't get too dehydrated, so once she was loaded up, we were sent home.

The Doctors and Nurses were annoying me by saying, 'oh, she's looking a lot better', after 300mls had gone down, while she was still wilting away in my lap barely able to lift her head off my chest. At first I went along with their positive talk (or at least tolerated it), which I am sure is a strategy to rush everyone home from hospital as soon as possible, but after the 600mls had gone down, and they tried it again, I said, that she was a long, long, long way from looking anywhere near ok. They fairly took a step back because it was so disingenuous anyway. She probably took her head off my chest for a total of 2 minutes for her whole 6 hours in hospital. The hard thing is that with gastro, you're meant to treat it as an emergency and get your kid seen to if they become listless. However, we were sent home with a very weak and listless girl. Very frustrating on one level, but at the same time, if there is no intervention they'll do anyway, everyone is much more comfy at home. They didn't want to overload her with fluids any more on account of her heart defect. So we shall see.

Anyway, in the big scheme of things, we're so lucky we're close to such a good children's hospital, where we get A1 treatment for free.

A walk with Daddy

Sheena has had a tough past couple of days with gastro. Not much fun for me either - she had 3 emergency baths on Friday for obvious reasons. Oddly enough, she was in fine-enough form on Friday, but yesterday and today, has been more unsettled than usual. Doesn't help not being allowed milk, and probably being slightly dehydrated.

She still has bursts of being very playful. Here she is doing some walking with her favorite person of the moment:

http://au.youtube.com/watch?v=OgAqWQX4dsU.

Quite a short walk, but she was distracted by the video camera.

On your bike

There are lots of cute pics of this little exploit, but here are 3 rather cute ones.

Summer Accessories

Sheena got a matching hat and bag from Kris Kringle. Very smart.

She's fond of doing push-ups with her daddy, generally making it harder for him anyway she can. She now calls him "daddy" rather than "dada". If there is a noise anywherein the house, she thinks its him, and then "daddy, daddy". She uses him as her own baby walker, taking steps behind him as he shuffles forward.

Sheena took a few steps just holding onto one hand today. She's also going through books on her own, and she'll flick through the pages by herself before coming over for me to read her a story. It was her last playgroup for the year. I didn't go as I was not 100%, but they had party food, and a nice little celebration to wrap up the year.