Dressed for Success

Here is Sheena ready to go to Playgroup. She now genuinely fits into the cardigan that her Granny made for her.

Her signing vocubulary is rocketing ahead. She now has picked up cat, pig, yes (although yes is over enthusiastic, and both arms go at once), dad, toilet, car - as well as all the others she was doing already. It is fun teaching her, as she's so into it.

She is also starting to stack blocks, which means that her releasing is improving.

So there we are for the weekly Sheena update. She is still the healthy one of the house, while I'm still sick with this virus.

Squishy Sheena

Sheena was the healthy one of the house this week, as hubby and I struggled through a nasty virus. We didn't even have the energy to take her for a walk around the block, but Sheena was quite happy to cruise around the living room while we flaked in front of the TV.

She has discovered the Wiggles. We have the one that has Auslan sign language in the corner, so I watch it sometimes to learn more signs.

When I am washing Sheena's hair, I always get her to put her own shampoo in, and I say "squishy,squishy, squishy" when I squeeze the shampoo into her hand. She holds her hand out and then squishes it into her hand before putting it in her hair. Now its getting hotter, I found myself saying the same thing when I put sunscreen on her, and she squished her hand in the same way. It was a nice little incidental learning, showing me once again that she is very tuned-in.

A year until we walk.

We had to go to the GP today to get a referral (for the Pead that we saw last week - go figure). While there, Sheena was bum shuffling the room, and putting on the charm. Another mum of a 9 month old asked how old she was and when I said 21 months, she said, "Oh - a late walker, you're lucky, my first started at 11 months".

When Sheena saw her Peadiatrition last week, he guessed/assessed that it'll probably be another year before she walks. I'd guessed the same, given that she's quite tentative with her gross motor, and she carefully calculates every situation before taking a risk - like lurching off her rocking horse, which she's started to do.

Occassionally people ask when do kids with DS start walking. In a way, it is like with most kids, in that there is a range, but with the DS, it tends to start at the later age, and then the range from that is a lot bigger. Factors come in too of course, general disposition i.e. whether the child is motor driven or an observer, medical history (operations, illnesses, medication, hospital stays), male vs female, if the child has low tone which is quite common with DS, whether the parents themselves were early walkers, and the amount of encouragement/stimulation the child has to get going.

Sometimes Doc's come out with things that take you off guard. I didn't mind the walking comment as it was consisent with what I'd thought anyway. However, when she was 16 months or so, her Neurologist said that she was X months delayed from a typically developing child. I don't personally think of her like that, I just take her as she comes.

Standing Up by Myself

Here is Sheena showing off how flexible she is. She's effortless in that way

I had to post this video of Sheena getting up into Standing. It is an almighty effort. http://www.youtube.com/watch?v=ZSFnqjHchWE She did it for the first time yesterday :) She is now trying to do it everywhere. I'd only said to her physiotherapist on Tuesday that I was pretty relaxed about her achieving it, because I knew she would.

Sheena had an appointment with her Peadiatrition today. She is going along marvelously. He said she is one of the few people that have a decent life after hypsarrythmia - only 10% do from the rare form of epilepsy.

Sheena had a blood test straight after the appt for a routine Thyroid Function test (which has to be closely monitored in people with DS), along with an FBE while we were at it. She didn't cry!!! (but did give them a lot of cross expressions). What a little champion. As soon as I went into the Pathology Collection room, I went into bat for Sheena and said that she needed a very, very, very experienced person to take bloods. It has been a disaster every other time, so I am glad it isn't always going to be the case. We find out on Tuesday if the Thyroid is OK.

Releasing Now

Aunty Christy and cousin Mark have been down to visit, and Sheena has enjoyed the extra company.

She picked up a really bad cold. She is better today after a dreadful night. I even called 'Nurse on Call', which is a govt initiative to reduce the number of people visiting doctors. She'd had 4 doses of panadol within 14 hours, and that is well and truely the limit, so I wanted to know what to do when we came to the next fever, and crying episode. The advise was to use Nurofen if she got a fever again overnight, as it is apparently less harmful on the kidneys, so we gave her 2 more doses of that at 10pm and then at 2am when she woke up sick and miserable. She woke up happy and much better.

Our big developmental thing of the week, is that Sheena is now releasing objects. She was placing bath toys on the edge of the bath, and she's been placing balls into her gumball machine.

On a mission

Sheena is very funny in the sandpit at the moment. She gets in with it full of plastic balls and sand. She gets on a mission, and is not satisfied until every ball has been thrown into the garden ready for mum to pick up so that she can start the whole process again.

Today we went to quasi-Wiggles gig at the local shopping centre with the Mother's group. Wag the dog was there. Sheena loved it, and had a bit of a wiggle, and lots of clapping.

Her standing has progressed to assisted walking where I can hold her hands above her head while she takes steps. She's not cruising the furniture quite yet, and can't get into standing by herself, but you can see the pattern getting more fine-tuned each day.

Kidding Sheena

Here is Sheena having fun with some other kids. Sheena's idea of gentle is not exactly predicable, so I was holding her hands for everyone's sake.

Sheena had a great speech pathology appointment, and she's got a few more activities to help her lip seal and ultimately her speech. I thought that the lip seal activities in particular would be a tediously long haul, with very slow results, but we're told it will be 6wks to 6mths, and we'll should see significantly more control. Fortunately Sheena is enjoying the activities, particularly all those that involve looking in the mirror, and all that involve someone singing songs to her. She is definitely babbling considerably more, with more variation, and this is only after 3 days of doing the activities 3 times a day. The lip seal issue is because of her low muscle tone. With delays in trunk control, jaw control is also delayed. This, along with a high arch in her mouth, all make the lip seal more of a challenge.

Sheena is loving her books, and has recently started to consistently turn the page herself. This took her ages to achieve, so it is a nice one.

She had a hearing test today, and got an 'A' as a result. She was very dramatic when she turned to look at the noise - a soap opera performance.

My computer has not been co-operative lately, so I have not posted much lately.

Perspectives

It was the last of Sheena's EI playgroup for the term. One of her friends at playgroup has just been diagnosed with Retts Syndrome. It is a complex condition that I'd read about while scanning over all the various genetic conditions when I read up on DS. It was helpful to know the basics about it when I spoke to her mum.

One of Sheena's other friends at Playgroup is scheduled to go into hospital for major surgery over the school holidays. The particular surgery is not usually done until kids are 5, but the Doctors now consider it appropriate for a 2 y/o. Naturally, it is a daunting time for her parents.

After hearing all this news, I went to work. I'm enjoying work, but nothing seemed stressful after playgroup.

Fancy Feet

We've been shoe shopping. I've had Sheena in soft booties all winter, but one of Sheena's friends that is 2 and cruising very well, but not quite walking, benefited from having some more stability by wearing shoes.

However, when we hit the shops all the sales people said that you shouldn't wear proper shoes until you've been walking for 6-8 weeks. Anyway, Sheena has petite feet, and she only fits into shoes that are designed for pre-walkers, so that is what I came away with. One of the criteria was that they were easy to put on. Her feet are very soft, and don't have resistance to push against like you usually would when you're putting on a shoe. They're great, and she's not trying to take them off - thankfully, because they were pricey little pink numbers.

Sheena is signing so well. People often ask if she's talking, so it is nice to be able to say, "Not much, but she does sign language". Never fails to impress. She signs dog, book, more, food, eat, drink. She looks like she is trying to work out biscuit, but hasn't done it yet. I can tell by her expression that she is concentrating to learn it. Dog is the odd one out. The others are in her life daily - but she has only encountered dogs occassionally, so she's learnt that purely from books.

Sheena the Socialite

Sheena has had a great few days as we had friends stay with us. She was very content to play wih their 3 y/o and 14 mth old. Here is Sheena and B having a race in the lounge room. You can see that B was introducing tactics outside the rules of racing. You can equally see that Sheena was distracted by the camera and needed to beam accordingly.

Our biggest news for Sheena is that she is making huge progress with eating from her bowl with a spoon. We'd been having a few dramas with that, but now she needs assistance with a few of the steps,.... and a big bib.

The Birds are Back

The Kookaburra's are back. It even gave us a laugh this time. For all the non-Aussies that read this blog, Kookaburras make a great laughing noise that is really distinctive. I was cooking a quiche at the time, so I suspect the smell might have attracted it. It hung around for ages, which was exciting.

Sheena is really close to pulling to stand. She is now a lot more confident on her feet when standing against something, and will step to each side with a bit of support and encouragement.

A Dad's Perspective for Father's Day

A+ for enthusiasm Sheena.

This is a much longer post that usual for me, but I got a transcript of the radio piece by a Father from Sheena's Hey Dad Playgroup. Here 'tis:

"I'm looking forward to Father's Day. We didn't really celebrate it in my home-country when I was a kid, so it's still a bit of a novelty for me. It's not really about me of course, but it's a nice to give my kids a special occasion to feel good about their family.

From my eldest daughter, C*, I'm expecting a big hug, maybe a new painting she has made for me at kinder and, if I'm really lucky, she might help her Mum make breakfast in bed.

From my youngest daughter, S*, I'm not sure what to expect. I am used to that with S* now though, so I'll be glad for whatever I get. You see, S* has been diagnosed with "developmental delay", and despite being three years old, doesn't really understand what Father's Day is.

It's a voyage of discovery with S*.. She doesn't have an exact condition like Down Syndrome or anything like that, so we just never know what to expect from her next. In many ways she's just like any other girl her age: she's got a cheeky smile, she's an expert at hide and seek and she just loves taking the mickey out of her dad.

In fact, she's so like any other girls that it took us a while to notice that there was something different about S*. She just seemed a little late to make some of the achievements we'd seen C* make. She was slow to put weight on her legs and to learn to walk.

We were hoping that she'd start speaking by her third birthday, but that's come and gone now. Still, she's getting very close to "YES" and "OK" and she always finds a way to get her point across. She may never talk fluently, but that's something we'll cope with as we go along.

The fact that we can't know which milestones S* will pass and which ones will always be out of her reach can make things a little tough - especially for a dad. While I'm at work, my wife takes S* to all her medical appointments and talks to experts about what might be coming next.

I try to remain as involved as possible in these aspects, but sometimes I feel that I'm missing out on a lot of S*'s development. We're trying to teach her sign language at the moment and it's always a bit of a shock when I realise that my four year old daughter, C*, is much more proficient that I am.

That is why I'm really glad to part of "Hey Dad" group at Yooralla's Early Childhood Intervention Services. It's a group, designed for that dads of kids like S* to give us a chance to spend a little time with our kids, see what they're up to in playgroup and meet other dads just like us.

There I spend a bit of time with S*, doing the kind of things she normally does at her playgroup. We do a painting together, mould some play dough, play with a few toys. It doesn't sound like much but it keeps me in touch with what my beautiful daughter is up to and helps me learn how to reinforce at home what she learns in her weekly programme.

I talk to other dads, sometimes about our kids, sometimes about sport. I can see what their kids are up to and how they're growing. It's normal, its just a different kind of normal.

That's what I love about Yooralla. They don't just look after S*; they make sure the whole family unit is involved in everything. When S* was first diagnosed, it was hard for all of us. Yooralla staff took time to talk to us through what was happening and helped prepare us for dealing with how to cope when you don't know what to expect.

And most of the time, life's actually pretty good. S* is the undisputed champion of indoor soccer and loves wrestling with her sister and dad. When she laughs at something, you have to repeat it at least five times. She's not a bad dance partner either and she's clever enough to ignore Dad when it's time to be serious.

Sure, it can be tough at times. But we live in hope, we aim high and we deal with reality as it comes.

Yeah, I'm looking forward to Father's Day. Even more though, I'm looking forward to Father's Day next year. I don't know for sure, but I like to believe that by then my youngest daughter will understand what Father's Day is."

A Fairy in the Garden

This morning, Sheena Pops had a Hey Dad Playgroup. Its Fathers Day tomorrow, so the Dad's had a BBQ, while the kids played outside. One of the other Dad's that go did a pre-recorded radio segment that we listened to at lunchtime today. He talked about his 2 daughters, only three and four, the younger of which has developmental delays - but with no medical diagnosis as to why. He talked about how she doesn't yet understand what Father's Day is, but that she is full of surprises - so you never know. Three seems quite young regardless. He was very complimentary of the Yooralla program - especially how they include the whole family with things like Saturday Hey Dad and various Sibling Programs.

After a nap, Sheena helped do some gardening in the front yard, and she had a great day all-up.

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Pigtails for Gabi

Gabi, and her trade-mark pigtails didn't make it through, and these Pigtails from when Sheena was 13 months are in memory of her.

Springing into Spring

Although its still August, we've had some early spring weather that is going to last for a few more days. Its nice not to have to rug Sheena up in so many layers, and have some more outdoor play.

She had a grisly week with a head cold, and missed creche a couple of weeks ago, but she recovered from that on Tuesday ready for Play Group, then a normal week this week.

The head-cold was tiresome. She actually slept quite a lot, but was not much fun to be around when she was awake. Grizzle, wine, grizzle. She could turn on the grumpiest face, and then she decided it was cool, so did it whether she was cross or not. I took her to the Dr's twice, because she was not at all happy, but it was just a nasty cold that she had to ride through.

However, the turn-around is very easy to take, and she has been great fun the last couple of days. Our friends and their 2 kiddies are visiting Melbourne, so we caught up with them in St Kilda. Sheena was in such good form at the restaurant. She was delighted to be passed around, sit in the high chair, then bum-shuffle around the floor for a while. We're finally moving out of that awkward big-baby stage, where she wasn't very strong, and wasn't mobile, to the stage where she is into everything, and getting around as much as possible.

A dream

Sheena is usually a dream to put to bed. Pop her in, a small happy baby dance, then she'll lie on her side, and contentedly pop off to sleep. If she resists in anyway to rolling on her side, I know I have put her down to early. Recently she's taken to squealing as I walk out the door, but I ignore that, and it rarely lasts.

However..., now that Sheena has been getting into sitting by herself for over a week, she has some other options to add, and today I went back in, she was sitting in the middle of her cot. It is so odd for me to see her in all these different possies after so long. Resettling her from now on in going to be quite different I am sure.

Surfing Sheena

Sheena has been tracking along very well, and my sister has told me off for not writing in Sheena Time to boast about her recent efforts.

So, we are now getting ourselves into sitting, and using a sippee cup. Her standing is getting better too, and there are heaps of other subtle developmental things that she has come on with.

Physically, I can now hold onto her hands while she is standing without it seeming like her arms are going to fall out of their sockets. This is really new, and I have no idea how this has all of a sudden changed, but we previously had heaps of problems with pulling to sit because of her lax joints, but this doesn't seem to be as much of an issue with her arms anymore.

I recently bought her a scooter-board to encourage the crawling movement, but I haven't really worked out how to best replicate the pattern, so in the meantime, Sheena looks like she is surfing while I drag her around the lounge room.

Determined

Sheena has learnt how to push herself up into sitting from rolling to the side then up. She uses her arm to push up, and it is very much like the manoever the physio got us to use whenever we picked her up to encourage the pattern. Its good that she's using her arm to do it, as it will help develop her shoulders and arms which are pretty weak from lack of crawling.

She can be quite determined and patient when she is trying to sort something out. Tonight she was in the bath, standing up at the edge banging at a toy boat. After throwing it away, I replaced it with a rubber toy that was much harder to grasp. She was awfully determined to get a hold of it, all while she was standing on her wobble-board legs.

Kiwis and Kookaburras

Sheena has had a quiet week for no obvious reason. Not sick, but not much spark. She picked up a lot yesterday when we had visitors, and she has been better today too. As of yesterday, I've taken her off weatbix for breakfast, wondering if its too heavy for her, and making her sluggish. Could possibly be a gluten intolerance, but I am not sure. She's moved to rice bubbles, and its going OK.

Sheena loves birds. We'll all be sitting inside the house, and she'll spin her head whenever a bird makes the slightest sound. When its not cold, hubby likes to take her out onto the balcony for her morning fix of the passing birds. Today, I had her outside on a mini-trampoline with her kiwi and kookaburra soft toys and she was the same, spinning around a the slightest chirp.

Remiss

Sheena started her EI playgroup today after the school holiday break. Fortunately she is back to being healthy and happy after her umpteenth illness for the year. This one lasted only 4 days which is a record. Unfortunately she missed a fun 3rd birthday party during this one, but thats the way it is.

Sheena is rather obsessed with her Nan at the moment. Nan is rather fond of Sheena too, so that is no surprise. Nan met us at playgroup today to pick Sheena up, and the little one couldn't control herself. She got stuck on the carpet and couldn't shuffle over, but she jumped up and down on her rear trying to propel herself over. Everyone thought it was very cute. Lots of new songs. Fortunately Sheena liked Hadie-Ho, where they have to be positioned in quadruped, because its usually hard to keep it fun in that possie.

We got cc'd on correspondence from Sheena's Neuro to her GP regarding her last appointment. He mentioned that her Infantile Spasms or West Syndrome is in remission. How much I wish he'd written 'cured', because that is generally what I say to Doc's etc when they take a history. Its a very dark shadow. They've never used the remission word before, so it was a bit of a shock. Anyway, its just a word, I think she's cured.

Le Tour

Here is sheena enjoying the peloton at le tour, no doubt dreaming of cycling in France in the years to come.

Sheena has had some big gains this past week. She now wants to pull to stand, and can do it so long as her feet are in a good position to get it happening. She also followed me into the bathroom and the kitchen, and she pulled herself up to stand using the hand-rail in the bath. One of my girlfriends told me that kids often make a few steps all at the one time because certain muscles gain strength and it helps with several things.

Oh no it's Winter!

Baby had a trip to Emergency Department this week with Croup. It came out of no-where, other than a cold for the preceding few days. Her Nan was looking after Sheena that night, and rang me with a barking baby in the background at 11pm. Nan is not one to panic, so when she said it looked like we should take her in, I didn't argue. We didn't have to stay at hospital for long, as she recovered really quickly after treatment, and her breathing was much improved. After that episode, Sheena's cold is a fair bit worse, and she is very quiet and asking for a fair bit of sleep to get over it.

So, we're stuck in the house, not that I would have been up to much anyway, because I have a bad cold myself, and its miserable weather outside.

Yesterday, we had a visit from Sheena's EI service to discuss her six monthly goals. Sheena has come a very long way since February. Sheena is very alert these days, but watching her be unable to get around bothers me a lot. I'd love her to come over and ask for a cuddle, or to be able to follow me into the bathroom or the kitchen. Not being able to move from one room to the other means that she is still very reliant on us for stimulation. The pressure is off from a while back when she couldn't roll or sit or shuffle about, but physically she's still far from where most kids with DS are at 19 months. She certainly had 6 months wiped because of her illness last year, and while on high-dose Pred she went back to newborn skills, but although there are reasons for her being behind with her gross motor, I'd rather she wasn't. So our goals are all normal things, like gross motor, fine motor and speech.

Sheena has recently taken up a few new hobbies to pass the time.

Drawing, very, very seriously.

Assisting with the vacuuming, and looking rather guilty about it.

Driving her big red car inside the house.

Practicing her yoga moves.

Ears and Eyes

Sheena breezed through a hearing assessment last Friday. There was a fair bit of fluid in both her ears, but it certainly isn't effecting her hearing. She was very impressive.

Her eye test today was not good. Quite a few things are quietly brewing. She is moderately long-sighted, so we knew she'd be wearing glasses by the time she hits school, but she's recently started to have a slight turn in her right eye for fleeting moments. It might happen 3 or 4 times a day, then another day I wouldn't see it at all. It didn't come up during the examination, so it is not bad yet at all, but the doc said it doesn't surprise him because of her long-sightedness. The long-term issue is that she might stop using that eye, in favour of the stronger one, so vision won't develop - but this is not the case yet. So we now have 4 things on the cards:

1. Glasses to help vision and correct a turn, 2. a patch for an hour a day to help the same, or 3. surgery to correct the turn, but that is only for appearance as it doesn't help vision. Finally, as it happens, 4. she also has a blocked tear-duct, which might require surgery - however it is not causing her issues other than some excessive tearing so we're sitting on that one for now.

Basically we're sitting on all of it for now, and reviewing in 6 months. These things are not effecting her vision for the time-being, and they might correct themselves. I am not holding my breath.

I'd just like to add that Sheena completely worked the room in both of these appt's to ensure that she put a smile on every one's face. She had everyone getting out of their normal doctor's waiting-room etiquette, as they cooed over her while she beamed at them.

Pots and Pans

We've all been good, except Sheena's had a runny nose, and I am a paraoid that its going to develop into something, but so far so good.

We've said goodbye to Aunty Daphne and Aunty Sheila who ar heading back to Canada.

Sheena had a play in the kitchen cupboards while I cooked lunch yesterday. I figured most kids at Sheena's age are into that, so I decided to put her in amongst it. She had to finish her cracker before playing with the tupperware.

Horsing Around

I borrowed a rocking horse from the toy library, and it is a big hit. Sheena looks like a toddler when she plays in it.

We had a physio appointment, and we're working on improving her 90/90 sitting. Her balance is excellent, but she doesn't position her feet in the best way, so that is a tricky one. Sheena just wants to play ball or pop bubbles, and couldn't care less that her feet are not in the 'optimal position'. Persistance, persistance. She was extreamely good. She was agreeable to all the positions we put her in for 40 minutes which is a long time of working out.

Up-front

Sheena LOVED a bike seat we've borrowed to test out. Being up- front she is guaranteed smiles from everyone we pass, and being Sheena, she beams back at them too. It only got tricky when Hubby was talking to her, and she'd look up at him, and her helmut would fall off.

Otherwise, we've had a very quiet weekend mostly. Just a couple of more active bike rides for hubby and I as we tag teamed looking after small-one.

We went to a dinner with the DS coffee group (that I never get to go to anymore because of work). Its a good night out - always good food and good conversation. Naturally its a good network to hear what their kids are up to and what services they get out of the various EI centres in our area. Luckily there are some really cool parents in the group, so its fun.

Playtime

At the EI centre that Sheena goes to for Playgroup, they have a couple of 'Hey Dad' sessions on a Saturday each term. Hubby goes along with Sheena and its a good chance for the Dad's to see what its like. Having said that, 2 of the kids in Sheena's Tuesday playgroup are always looked after by their dads, so maybe they need to change the name of the Saturday sessions. Sheena is always the youngest at these sessions, as most of the kids are about 3, but she always gets to sit at the table with the other kids, and has a bit of a play. She has been down for 2 1/2 hours since she got home, so it exhausted her.

Heart of the Matter

Sheena has been stuck inside for the past 2 days, as it is freezing and blowing a gale outside. Her chest is still very crackly so I was not going to risk it. She has enjoyed a millon cuddles from Aunty Daphne and Sheila all the way from Canada. Even the Canadian's are finding it cold here.

She was reviewed by her cardiologist today, and her heart has improved. The Doc things her VSD has closed, but she still has a small ASD and PDA. He thinks they are smaller than before, and he only wants to see us in 2 years time for a review. Sounds good to us.

He thinks none of her current symptoms are related to her heart, but just that she's been hit with the double whammy of 2 isolated viruses at the same time. That's why she's dropped so much weight, and is still breathing hard. Like the doctors at the hospital he reminded us that this virus can take a month or several months to get over. Its going to be a long winter.

My feet are Standing

Sheena-pops has all of a sudden decided that standing is the position to be in. Here she is in her PJ's last night standing and proud of it. Understandably she still needs support at this stage, but it has progressed from holding her under her arms, and holding her whole weight, to Sheena standing with our hands on her hips only. I don't know if any of her EI activities helped her in this, as it was really hard work to get her to bare weight. We'd do 'my feet are stamping' songs to get her to use her feet but its taken a long, long time. She is there now though.

No News is Good News

Other than a walk to the post office with a girlfriend and her bub, Sheena and I spent the day around the house. You wouldn't think Sheena had dropped to only 8kgs looking at that double chin when she does a full-body smile.

Home

Sheena is obviously happy to be home again.

She got out of hospital yesterday. She is more herself, and her breathing is much better. She lost 13% of her bodyweight overnight after having a diuretic on Monday. She's down to 8kg - literally dropped from 9.2kg to 8kgs overnight. This is not good. We have to go to her cardiologist for another assessment to see if the fluid build up was not just related to her Bronchilitis. I had been treating this hospital visit as a short-term hiccup, but now I am worried that her heart is an a poorer state than originally reported.

While in hospital I met a lady that had just been told their 18 month old had a serious genetic condition that has major health impacts. She was in the raw stages of crying non-stop, and reading all of the material saying how her kid is going to have kidney failure, is not going to grow properly etc etc. I gave her a very brief history of bubba, and she was saying 'how do you cope'... It was good to be able to pass on a few comments that had helped me. Most of the time I just acknowledged that it is really hard, because in the early days it is.

Winding Down

Today Sheena's Pead decided she had Pulmonary Edema. After some diuretics she had improved a lot, and her breathing is immensely better. She still needs the oxygen for now, so we're still stuck in hospital, but at least we're in a private room so we can sleep easy enough. We'll be in here until Wed or Thursday, so I am pacing myself. The hospital environment is brain-numbing. Its hard to read or watch TV or do anything other than care for Sheena and eat and sleep. I am treating it as a good way to completely wind down with no other demands other than Sheena's health. There is no point getting frustrated and impatient with it. Sheena's Nan is going to sit with her tomorrow while I have to work, so I will get out amongst the real world for a while.

A few more days.

Sheena took a turn for the worse last night. Hubby was about to go home for the evening at 7.30 when Sheena's panting started to look more labored while she was drifting off to sleep. We asked the nurse to come and have a look.

We had to get her up to have a proper look at her and she was not happy about it. She was blue in the hands and very mottled all over. She had a temp of about 38.3, and her oxygen levels had dropped to the low 80's so we also had to give her a mask along with the nasal tubes she already had. The nurse paged the Doc, and he examined her very closely. Given the rapid change in her, they did another chest xray to see if her bronchitis had developed into pneumonia, and by the time that happened her temperature had spiked to 39.8. She was extremely distressed, and they gave her codeine to calm her down somewhat. Given the temperature, they also decided that bloods and an IV were required. We stressed to the Registrars that she is impossible to get bloods out of let alone an IV, and that we wanted a neonatal or ICU Doc to do it, but ICU Doctors were too busy, and they were very keen to start treatment given her state. We had to let it happen.

Two Registrars had an attempt, all the time Sheena being awfully miserable and distressed. They finally made an urgent call to ICU to get one of them up to do it. By this time it was about 11pm, but it only felt like 30 minutes with all the panic. The ICU Doc tried her foot with no success, and they ultimately decided that they'd have to use a vein in her forehead. I could not handle that so left the room while hubby helped Sheena relax.

Still not 100% sure it is bacterial or still viral, but her chest xray did show a change so it is likely.
She is better today after fluids and general antibiotics overnight. It's possibly still viral but Sheena's Pead said that with her weakened immune system and heart defects she may take longer to recover. Even though the heart defects are small, it still means that oxygen is not as efficiently circulated as you'd like. He said we might still be in here for a few days yet.

Anyway the positives are that Sheena is still eating and drinking, albeit custard and yogurt only. Her temperature has come down, they're trying to reduce her oxygen again throughout the day and she looks a lot better. This picture is of her relaxing after custard for lunch today. Thankfully we were in hospital, as I would not have liked Sheena to deteriorate so rapidly anywhere else.

Another 48 Hours

Sheena is coming along ok. She is a bit up and down, but predominantly very floppy and lethargic. I would not trust her to sit in her cot as she'd just as likely flop down in any direction. Last night and this-morning were a bit tough on bubba. They had to increase her oxygen and her fever spiked a bit, but it has come down again. The Pead said that we might be able to go home on Monday, so here is hoping that it will be the case, if not earlier. She is much happier this afternoon, but she is still working hard with her breathing.

She looks to be having a particularly bad hair-day in these pics, because she had an EEG. Coincidentally we'd had an outpatients EEG appointment booked for yesterday, and they were still able to do it, so that was convenient. The EEG was fine which is great.

TLC for Sheena

Sheena is in hospital with a bad case of Bronchitis. She is awfully lethargic, and is on oxygen to support her - she is just really worn out. She hasn't improved since coming in yesterday, but she is stable and OK. I thought we'd be in for one night tops, but now her Pead has mentioned that we'll probably been in for another 2 nights. I am not too worried about it, in that it seems like an acute illness that she'll get over quickly enough with a lot of TLC.

Little Miss

Sheena has been in a grotty mood the past 2 days with a bad cough still lingering on from the bronchitis that started 2 weeks ago... She woke about 20 times last night with her cough, so back to the Dr we went just to make sure it wasn't anything nasty. Instead of being in a grotty mood at the Dr's she sat in the waiting room and beamed at everyone. When she was satisfied that everyone had smiled back at her appropriately, she played with some toys and was the picture of happiness. This photo is exactly how she looked while at the Dr's. She giggled when he checked her with a stethoscope etc etc. Little Miss. After coming home and having a nap she went back to being grumpy and sick.

Sheena in her Sleeping Bag

Here is Sheena in her night-time attire and me.

Sheena is getting rather mobile. She is getting into things, and makes her way across a room. Its not like it happens in 5 seconds, but these days we have to clear the floor of everything but toys and she will slowly make her way around the room. Today she was investigating the full clothes basket and was making a good effort at tipping it over.

Time to get a gate for our staircase down to the rumpus.

Understanding

Sheena has recently started to show clear signs that she understands me which is really cool. I told her to 'come mumma', and she rolled four times in a row to get to me. She doesn't do that often - she got quite pleased with herself for doing so too. At a first birthday party we went to on the weekend, I was feeding her fairy bread, and then said no more (even though there was plenty more), and immediately the bottom lip came out, and tears followed. Sheena has started to follow my pointed finger to look at things which is a big step too.

From an Infantile Spasms Yahoo Group that I read occassionally, I recently learnt that with the dual diagnosis, co-ordination in using hands can be effected. This is a bit of a relief to me in some ways, in that I have been annoyed/frustrated that we're taking so long to competently use a sippee cup. I am going to back-off somewhat, as I figure she'll be closer to getting it in a month or so, so I have decided to be satisfied in giving her water and milk in a bottle only for the time-being. IS makes all normal brain patterns completely disorganised, so normal patterns in fine and gross motor have to be completely relearnt once IS is controlled.

Light Weight

I took Sheena to the Dr about pink-eye, and he said she's got Bronchitis. Glad I went...

Although she's got this, she is doing well otherwise. I had hoped to take her swimming today, but we'll take her for a ride in the bike chariot instead.

I weighed her, and she is 9.2kg... I thought she'd be closer to 11kgs so I was very surprised. Glad she isn't, because she is heavy to hold as it is. She doesn't eat much, but she always has something (3 meals and 2 milk drinks). We only weighed her yesterday, because her jeans were loose, its like she is instantly thin. She has probably grown a bit, so is stretching out. I considered going to the maternal health nurse as I would like to get her measured, but am reluctant as they have a tendancy to stress you out if your kid does not sit on 50% - 75% for everything.

Tai Chi Fanatic

Sheena had creche today. I didn't dress her in her fancy Chinese gear, as I thought she'd be too slippery and they'd drop her, but here are 2 more picks of her looking the part.

So Sheena is on Gingko, and has been for about 2 weeks. I have noticed that she has picked up, especially in terms of response time when we ask her to do something, like choose a book. She'll grab one really quickly and then really enjoy every page. She likes to go through all the books, so she picks a different one each time, until I've read her about 5 stories.

Beijing Baby

Sheena had a mini-vacation at Nan's house while I was on my business trip. She enjoyed luxurious uninterrupted naps, lazy lunches, and more cuddles than you could count.

Sheena was jumping out of her skin when I got back. She did a butterfly dance with huge smiles for 5 solid minutes while I cuddled her, and she kept on hitting me on the chest as if to say, "don't you leave me for a week again mum". I bought her a rather sweet outfit as you can see.

We had a busy weekend straight after I got back. A wedding on Saturday, a trip to the zoo on Sunday, then a comedy festival show on Sunday night. Trust me, this was all organised before I knew I had the week in China, but they were all seemingly fun. That was until we went to the comedy festival finale, and an the act straight after intermission openly mocked Autistic and DS people. We were sitting there with a group of friends, and I was sitting there thinking this can not be happening. It was horrible hearing the material let alone hearing the crowd laugh. At first it was the Autism jokes, and I was thinking imagine if there are any family members of someone with Autism, and then the next joke was on the DS, and it was like a punch in the guts. Anyway, I got upset and left in tears with my girlfriend, and then hubby who was sitting a few seats also left. It was not comedy. I emailed to the Comedy Festival Director, to which I have still not received a response 2 days later...

Baby Bliss

Sheena is doing great. Here she is dressed up like a doll in a cardigan that Granny made her.

We've dropped her to just 1 BF a day in preparation for my week away. We've started giving Sheena some Ginko Biloba which is really good for blood flow/circulation and memory. I hope it helps her circulation now that summer is over. I want to find some that is already in powder form rather than having to crush the tablets each time. She already has her Epilim and Fish Oil in a oral syringe, so its getting to be a hassle again have to give her all this stuff. At least only the Epilim is compulsory, and she takes that not a bother.

She was just delightful today. She had a 2 hr sleep in the morning, then another 1 hr sleep in the afternoon. Text book for baby-bliss. She is getting much better with her bottle holding, and she wants to do it herself now as long she's reclined upright just-so, but she isn't prepared to properly use a sippee cup yet. She will pick it up and hold it properly for a few seconds, but then she'll just start playing with it, and throwing it around.

Miss the days.

Easter Holiday was OK. My tummy bug only lasted 24 hours down to the hour.

Visited friends at their new place near the beach in the city. Other than a rather extreme nappy change situation, (a change of clothes and a bath later), Sheena had a pretty good time. She played with another baby for a good long stretch, where they played a very peaceful version of tug-a-war with a toy.

It was a dinner party where half the guests had young children, and the other half didn't. Makes me miss the parties where we could go to and be reliable to engage in good conversation rather than managing extreme nappy changes.

Speaking of conversations, I am very confident that I would not have been the type to ask 'did you have the tests?'. I am starting to think that it is very disrespectful to Sheena to answer the question. I am mostly very patient with questions like this, but given that Sheena is my much-loved daughter, I don't think people really understand the virtuality of what they are asking. People also assume that I am an expert on pre-natal testing which is ridiculous. I recently was close to walking away from a conversation around this, but decided to change the topic of conversation instead. I could not be stuffed going through the verbiage for no benefit of my own. A while ago, to a remote acquaintance who asked me in front of about 5 other people, I just answered, "Why?" I don't even think the women got the point, but I think the more intelligent people in room did.

Hi Everyone

I am sick. Started getting much better around 11am, and could actually move from the beanbag to the couch without it taking an hour to will myself to make the mighty move. Thankfully this bug is looking like it is going to be one of those 24 hour bugs that people like to refer to.

We had a review appointment with Sheena's Peadiatrition this week. He was very impressed with how well she is looking. He is going to organise another EEG in case we are missing absence seizures, but even if she is having these events, they are not effecting her development or happiness, so it is not panic-stations like before. There have been a couple of signs of absences, but most of the time they could also be her being tired or not liking her food, so only an EEG can tell for sure. He has given her a lotion for her craddle cap that was resilient to every home remedy and chemist treatment there is on the market. Yea, it has worked. 8 hours later and it is looking much much better.

Sheena is now pivoting 360' while she is sitting. She also sits and rocks, but hasn't exactly got enough momentum yet to make distance. It is very cute.

So, with this stomach bug, I can't see myself eating too many easter eggs tomorrow. They will wait. Happy Easter.

Picnic with Pop

Here is Sheena a while back catching a few too many rays. She ended up with a very red face after this play in the backyard.

All is running smoothly. I think I am finally coming to terms with the fact that Sheena is OK, and that every little bit of progress is not a miracle.

We seem to have had a weekend catching up with other parents that have kids with DS. It is good to hear how they're working/using the system, and to see how their bubba's are going. Often with the services it depends so much on the person rather than the service structure. It is truely a maze out there.

Otherwise I have work trip at the end of the month, and baby Sheena is going to have 5 whole nights without mum. Worse still 5 whole morning and nights without mummy-milky. This is going to be interesting.