Adoration

Sheena is besotted with her big cousin Mark, who is now almost 10. She calls him Marr.

He came around to our house for an evening visit 5 minutes before Sheena's usual bedtime. Bedtime was then out of the question, and her eyes were full of wonder (like this photo) for his whole visit. It really melts the heart how much she adores him.

Meanwhile, I am rather pleased to have realised that Sheena will tolerate me holding onto her wrist when we are out walking. Up until now I've tried holding her hand, and she'll pull it away. If I persist, she'll sit down in protest. Quite the Miss Independence. Naturally this was not ideal from a safety perspective, especially if we're on a busy street, so I'm glad to have worked out that she'll still walk if I hold her wrist.

Sheena is very keen at waving hello to people at the moment, and when she sees a car, she'll do the car sign first, then wave hello to the people in the car as well. She was busy waving hello to a car driving outside the front of our house, and she got a few waves back as she usually gets. The front passenger of the car was a young woman with down syndrome which was nice to see.

Elevated TSH

Sheena had a blood test yesterday, because she's been unwell recently, then came up with an unexplained black-eye. I had been planning on taking her to the Doctor, but this was a certain visit. People with DS are 30% or so more likely to develop leukemia, so unexplained bruising, especially around the eyes is worth getting checked out. While we were having a blood test, we also got her Thyroid levels checks, as people with DS are rather prone to Thyroid disorders, and annual check-ups are recommended for this. That extra 21st chromosome likes to throw in a few issues for us parents to worry about.

So with all this, Sheena didn't go to creche, and I didn't go to work.

This morning, before 8am I got a call from the Doctor. Knowing how Doctors work, I figured this was important. Her white and red blood cells were OK (no leukemia), but she has mild hypothyroidism. Elevated TSH, but normal T3 and T4 levels. From what I have read, this means that we might have come across it early, and it probably has not been bothering Sheena. We now have to see the Peadiatrition in the next week, and probably he'll refer us onto an Endocrinologist to get her on medication. Just happy that we know about it, and can sort it out.

We think now that the 'unexplained bruising' was a knock on the side table Sheena had at Nan and Pop's house.

Beach babe

Sheena had visit to the beach, and desperately wanted to have a dip, but it wasn't going to happen as she has been a bit unwell, and it was basically too cold to swim anyway. It was her first visit to the beach since she started walking, so she

made the most of that.

Anyone in the market for a beachhouse? The one on the right is for sale

Visual Perceptions

Sheena's physiotherapist theorised that her lack of coordination in going downstairs using a good crawling pattern might be because she relies on using her sight a lot. Good theory I think.

She is making progress in her awareness of heights, and she's occasionally rummaged up the strength to pull herself up on the couch. She needs constant supervision at the moment when she's at a height, as she still needs directions to turn around to get down. I don't have the confidence that she'll do it without being told - she's just as likely to bum-off the the couch.

She had a great speech appointment this week, and impressed the Speechy with her chattiness and heaps of signs. Her healthiness makes such a difference to her developmental progress.

Sheena's Con

You wouldn't think it from a little pink princess like this, but Sheena conned me that she had thoughtfully adjusted to daylight savings slightly ahead of schedule. One day before the change in time she slept in to 9am, then didn't go to bed until 8.45pm. Of course I was very pleased, and thought that we'd smoothly transition into the new time, but that just hasn't been the case today. She woke up at a good time-adjusted time today, but then wanted her mid-day nap back in the old time zone. She was really cranky wanting her nap.

Pirate Dress Ups

I finally made it to a DS Coffee Group today that I haven't been able to go to for about 8 months. This was a school holiday catch up, so children of all ages - siblings, and children and babies with DS were there. Fortunately they had some students there as extra hands on deck to help supervise the children, and to give the parents a few moments to enjoy a coffee and a chat. The little ones played dress-ups and everything else under the sun. Sheena decided a pirate vest was the best, so we might have a tom-boy in the making.

Sheena slept for 3 hours today. Must have been worn out after the morning adventures and creche yesterday.

Otherwise, we're tracking well. I found a bowl at Toys R Us that has assisted Sheena in her spoon feeding. Its got an extra large edge that helps her load her spoon without spilling too much. It is really getting there (at last). Naturally we'd love to that to be well developed for when baby # 2 comes along soon. While on the shopping expedition, we got Sheena a pair of gorgeous new shoes. She's got small, broad, very soft feet, with very flexible ankles, so we have to find something with good support - but at the same time, are not too heavy. The shoe-shop lady seemed to know her stuff, so I am happy with what we've got. Apart from them being $65 for size 5 toddler shoes!!!

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.