Sheena Time

New Year, New Kinder

2010-02-10T21:27:00.003+11:00

Sheena is settling into her routine nicely for year. Early Intervention Kinder is going well so far - she has adapted to the new room and new teachers with ease. I am very excited about her starting a weekly swim program. Its a full excursion every Tuesday, where they leave kinder on a bus trip to the public pool. They have to carry their own bags into the swim centre, but they'll get oodles of support with swiming and with dressing etc which she definitely needs. I am so going to spy on her, and be very careful not to let her see me. I want to see how different she behaves at the pool when I am not around. When I go swimming with her is very clingy, but at the same time really likes it and does lots of kicking and uses the kick-board with a lot of enthusiasm.

Summer swimmers

2010-01-10T21:04:00.004+11:00

These are the first proper swimmers Sheena has ever worn! She always used to wear swim-nappies. Speaking of which we are have a lot of success with toilet training. Sheena is consistently going wee or poo in the potty 2 or 3 times a day. We started in October, so thats good progress as far as I am concerned. She still has some accidents, but it does not seem far off that we'll be able to tick off this huge milestone.

Her other big milestone is that she has just turned 4. She had an intimate party at home with ice-cream cake, then a family dinner at nan and pop's with her big-cousin Mark down from NC to share in the occasion. This little girl LOVES a party. She pretended to be shy during Happy Birthday at the party, but then was jumping out of her seat at Happy Birthday at Nan and Pops.

Sheena is being very tricky with her little brother. Taking his toys, pushing him over, and just getting in his space every living minute. The minute they are alone together Roy cries from some antics. Supervision is really intense at the moment, but hopefully it will pass.

November News

2009-11-08T22:08:00.003+11:00

Sheena is toilet training at the moment. It is 100% parent-led as she is not showing the usual signs of readiness, but we're keen for progress and Sheena sometimes needs a push with these things. We've had 2 successes, which is fantastic. She is very reluctant to go to the potty, but once she is there she does a fantastic job with the whole process from start to end. I have to completely help her with getting her pants up and down, but the rest she can manage very well (other than turning the taps on which is fair enough). We're taking her six times a day after each meal, but she still wears a night time nappy. I've got she early intervention and creche on board so that they keep the pattern going when she is outside the home.

She completely can not handle the heat. She went bright red from head to toes after playing in a friend's pool, then being in a hot car for 5 minutes tops. It looked like she was sun-burnt but she was just hot. I don't think she sweats properly. I worry about her at childcare in that way, but I am going to get them to give her a cool face washer to cool her down several times over the day when she goes tomorrow, because its going to be 32.

Buddy Walk

2009-10-12T21:28:00.002+11:00

We all went to the Buddy Walk in Melbourne, which helps raise awareness to people with Down Syndrome. It was a 3km walk around Princess Park which was more of a run away towards to the playground, ask to be carried by dad, sit down and sulk, or sit in the double pram and cry. Not an easy walk. Sheena did enjoy the picnic afterwards, where she participated in the sack race even though she was 7 years off the minimum age of entry. She just walked over to the starting line, got herself into a sack and lined up with everyone else. It was pretty funny. I had to pick her up and run her over the finish line, becuase the jumping action was a bit much for a little girl. Lets just say we didn't come first (this year).

Trampolining

2009-10-04T21:09:00.005+11:00

Sheena is reluctant to get her photo taken at the moment. Her rebelious streak - its "no-ooo", or just not facing the camera. I managed to get her face-on in this photo because she was tugging at my leg pleading to go outside for a play on the trampoline. In the second photo she is asking to go down stairs by signing stairs (we still have a safety gate at the top of the stairs). Yes, she did get her way.

Blink and you'd miss it

2009-09-29T19:02:00.004+10:00

These are Sheena's play glasses in preparation to get her to wear proper glasses. They stayed on about 2 seconds so I was lucky to get this shot. She simply will not tollerate them on her ears.

Sheena visited her Nan and Pop today and they took her with them to their Weight Watching club. They expected her to be bashful and keen for nanna-cuddles which is how she behaves when she visits their neighbours. However, weight watching club turned into a social outing, where Sheena spoke to all the members, played about and then did a weigh-in herself and came in at 16.9 kgs. She ate morning tea in front of all the dieters and was then asked to sit between nan and pop and quietly read a book while they had their meeting. Sheena could not quite manage this, and was making all the animal sounds in her story, so her Pop took her for a walk while the meeting ran its course.

She is stretching out her mornings, and is now going down for a nap at 1.45 pm instead of 12.30pm. It is odd how it can suddenly just change. I remember the same thing happened when she went from 2 naps to 1 per day.

The Library Corner

2009-08-29T20:24:00.003+10:00

Sheena is being good here sharing books with her little bro, but she is not too keen on sharing much with him at the moment. She regularly snatches the one block Roy is playing with, despite there being another 10 blocks within reach. She is being quite territorial most of the time. Then on another occasion, she'll decide to be gracious and take a toy over the Roy and place it in his hand. I think she does this so purposefully, because after playing with other children with disabilities in early intervention (some with more physical limitations that Sheena) she does not assume that Roy can reach out and grab a toy.

We've had big success since starting to use a nasal spray to improve Sheena's sleep apnoea. She is having only a few sleep-disturbances, and her day time naps are reducing to 1 hour on some days. She has very narrow nasal passages, so this is helping open up the airways.

We are having zero luck with the play-glasses that I bought to help Sheena get used to wearing prescription glasses. I baulk at paying $300 for glasses knowing that we can't get her to put any frames on for even 3 seconds, if at all...

Best Foot Forward

2009-08-11T12:00:00.002+10:00

So Sheena has worked out how to put shoes on. Helps if they are Dad's shoes though - a lot more room to work with!

Big Bed

2009-08-01T17:34:00.004+10:00

Sheena is progressing into her own bed - well at least we are taking steps in that direction. The bed is set up in her room with a safety rail ready to go, but hubby and far from confident in pushing this step. Her sleep apnoea is scary. Although it has settled down from when she had a very heavy virus, (she's now just got a mild virus) she regularly sits up while still dead asleep, and then can topple over in any direction. That is the better scenario. In the evening, she'll often sit-up, then cry-out while still in a sleep-state, and need resettling. I'd rather her topple-over and stay quiet while not bothering the rest of us about it. We're extreamely used to it, but it would take some explaining to any babysitters.

We've started private speech pathology sessions again. She has them early Friday mornings, which is working well, because she is fresh and raring to go. I no longer stay in the room with Sheena and the therapist. Instead, I sit in the waiting room and play with Roy - or read a magazine while he plays about. It is much better. We decided to do this after the 1st session when Sheena was wanting to sit on my knee whenever she was fed-up with an activity. Not productive enough for $68 for a half hour session! I can still hear everything from the waiting area, so I know exactly what she is up to in the sessions. Her speech is really delayed. I think she's got speech apraxia with no thanks to her infantile spasms. We've noticed definite improvement since she started these sessions. She will at least make an attempt to say a word. She gets an A for babbling and can do lots of animal sounds, but that is where she's been stuck at for quite a while.

A dedication to Aunty Christy

2009-07-09T12:48:00.004+10:00

Aunty Christy is 19 weeks pregnant. Yay, another baby for Sheena to play with.

We've had a bad run of it lately with Sheena. Her sleep apnoea is well and truely back, and I think her pulmonary hypertension has come back with it. She's had a winter virus, and this has pushed her over the edge. She can be very irritable during the day at times, probably because she's had a bad nights sleep.

She's just had more bloods done, and we're off to see her Pead next week as we might have to medicate her for the Obstructive Sleep Apnoea. They'll want another sleep study before hand, but we know she has it. She's started going blue again at times, which means her circulation is poor. Its not an emergency as it may seem, and as we thought it was last year when it was happening. Her oxygen sats are normal enough.

I am exhausted with it all. School holidays have not been easy with her being out-of-sorts and not 100%

Homework

2009-05-21T20:12:00.003+10:00

Sheena's kinder teacher arranged an assessment by the school's Occupational Therapist to assess her fine motor skills. I LOVE her get-on-with-it approach. She did not run it by us first, she just got the OT to observe Sheena in different settings for a few weeks, then she prepared a report with recommendations.

Sheena's hands have always been particularly effected by hypotonia. My little finger has more strength than her whole hands. Roy's hands have 20 times the strength of Sheena's too.

Sheena still does not persistently use a pincer grasp, sometimes she relies on a palmer grasp. Her bilateral use of her hands is still developing too, where she doesn't always use her supporting hand very well to master a task like threading where it is important to use two hands. We've got a few activities to do at home.

Homework for a 3 year old. A bit tough. She's pretty cooperative with most games at the moment - she's just keen to have company while she's doing it.

Adoring Roy

2009-05-10T19:45:00.004+10:00

Sheena has done well to avoid Roy's horrible virus. She adores him, and expects him to go wherever she does - not so easy when he's been so sick.

Sheena's fringe is getting way too long. When we go to trim her hair she thrashes about to the point that it is dangerous to get near her with scissors, and she refuses to wear a clip or a hair-band. I guess hair-gel will be our next option. Talk about a drama queen.

Her little tantrums are improving a lot. They are not so frequent and the intensity isn't there anymore. She seems to reliably have one just before her daytime nap, but it is quite manageable. I just ignore her and acknowledge that she is feeling upset. This seems to be working for now.

She went for a huge walk today. She walked over several steep hills along our street, and kept charging ahead without needing to go in her pusher. I was very impressed. It worries me that she is going to outgrow her pusher in the next year, but that she doesn't have the stamina that other kids her age have. She is 16 kilos all of a sudden. She was 14 kilos the beginning of the year so she's been busy piling on the weight. Her top half is size 3, but her bottom half is size 1-2 because she's shorter in the legs. I have no idea how she got up to 16 kilos because she is a poor eater to put it mildly.

She went to her cardiologist this week, and her pulmonary hypertension has cleared up since having her tonsils and adenoids removed in January. She's obviously getting more oxygen overnight now that there is less tissue in her airway. Although her tonsils were only medium in size, some people with D.S have such low muscle tone that the airway closes over even with average tonsils. A huge success.

Her creative play is coming along. We had lots of animals visiting dolly in her dolls house - but I had to lead the play. Her lack of speech makes her ability to lead more complex creative play very hard. Her receptive language is ALL there, but her expressive language is extremely limited.

Party Girl on a Pony

2009-04-25T19:51:00.003+10:00

Sheena has had a cluster of parties that she has been making the most of. She is very keen on blowing candles out (absolutely ignoring the fact that it isn't her birthday), and loves a good old Happy Birthday tune.

She is now joining a lot of signs together. Mostly just 2 signs, or a sign and a word approximation, like "two shoes", or "Roy Roy's Food". Today we told her that Roy had done a poo and that we wanted her to help clean up his poo just to keep her nice and involved. She got poo and shoe mixed up and went and got his shoes. Quite the little helper.... hmmm.

Here she is riding Poppy, her friend's pony.

Our big list of accomplishments

2009-03-28T21:00:00.004+11:00

There is a big list of things that Sheena has recently started to do. It is all fantastic. I say 'our' big list because with her global developmental delay she needs a lot of direction and assistance with all of these successes. I notice this all the more now that she's got a little brother who has so much natural ability in everyway. Watching his little fingers point to pictures in a book takes my breath away.

Here's our list:

-Sitting on the potty about 6 times a day - and 2 successes with wee, or 'ssssssss' as she calls it. She is quite delighted with the whole ritual and often reminds me that it is toilet time!!!
-Telling me (using the toilet sign) that she is doing a poo (not enough time to get to potty yet).
-She can now get out of her car seat on her own (thankfully I still have to undo the safety harness, although she'd do that too if her fingers were strong enough).
-Setting the table, with a lot of guidance, but she is a very willing and able helper.
-Standing on a step to brush her teeth in front of the basin (she'd do this 6 times a day if I let her, she takes real delight in doing it). Its amazing what a bit of core strength enables.
-Walking up and down steps with no hands, although we desperately encourage holding onto the rail!
-Putting on her pants, although they always seem to get caught on her rear, and she needs help there. She's eager to put on her shoes but that is a lot harder. She regularly fetches them, and sits and has a go.
-She can jump, but needs a bit of a run-up. Its probably more of a skip than a jump.
-Putting her toys away with a fair bit of enthusiasm (most of the time).
-Rubbing her lotion and sunscreen in
-Being a great playmate to Roy, if not a bit bossy most of the time.
-Very competently playing with mega-blocks

A Date with the Dentist

2009-03-07T18:55:00.003+11:00

Sheena has become a wonderful little girl, since her terrible recovery from the tonsils surgery and all the temper-tantrums and night-terrors that came with that. She took 4 or 5 weeks for that all to pass, and now she has a lovely steady mood, and is more switched-on and energetic than ever. Usually T&A surgery takes at the most 2 weeks to recover from, but people with Down Syndrome have a low immunity, and with her heart issues, and other medical complications it is not surprising that the surgery and anesthetic knocked her about immensely. Phew, nice to know it has passed. I realllly mean that - it was a very hard time to deal with. I am hoping the Pulmonary-Hypertension and Sleep Apnea has resolved, making her feel a lot better.

Sheena enjoyed the family holiday to the beach. We didn't manage daily trips to the beach, as Roy had a cold and Sheena had croup (only effecting her at night), but towards the end of the holiday we got to he beach a bit. In this photo, she fell in a rock-pool, and spent the rest of the beach trip freezing her butt off.

Since the holiday, she's seen a dentist. We got the Paediatrician to refer us to the dental clinic at the Royal Children's Hospital. I was very worried about her sensitivities around her head (i.e. hairdresser dramas), so I was too stressed out to take her to a local dentist. The RCH only sees children with other medical complications, so sure enough Sheena got in easy. She's got some deformities with her back bottom teeth, where the enamel has not formed correctly, so they are very susceptible to cavities. Great.... But she was a star at the clinic. She did get distressed during the examination, but they handled it well. She marched through the hospital like she owned the place. She held my hand when I asked her to. She was no stress in the lift which she was terrified of a few months ago. She came to the door and waved good-bye to the dental staff when I said we had to go with no complaints or fuss. I only put her in the pram once when I had to go into the chemist, because there was way too many tempting things for little fingers to muck-a-bout with. I was soooo proud. You have to enjoy the good times, especially after our tough month post-op.

Swinging Sheena

2009-02-09T20:26:00.002+11:00

No temper tantrums to speak of today. Must be hard having a lot say, but the words fail to come. Thank goodness for sign-language, despite its limitations.

Seeking a quiet moment.

2009-02-03T21:34:00.005+11:00

Sheena has been very, very difficult recently. Her behaviour has gotten way out of control at home, terrible 3's it seems, pushing the boundaries.

Apparently she is doing great at creche where she has started back 1 day a week in the 3 year old room. She only just turned 3, so she's one of the little ones of the room. The main carer was a bit wary of her out in the yard with the bigger kids, but apparently it went fine. She manages bigger kids in the playground in the local parks, so she'll manage it at creche we figure. I am more concerned that she'll get frustrated at the other kids being able to draw and do intricate puzzles quite well, but I am sure Sheena will progress with this over the year.

She also started back at her Developmental School today, and was just great with them. They've just relocated to a brand new school. Custom built in consultation with the teachers and therapists and its just great.

So far her challenging behaviour is limited to at home - so it might settle down as she continues to get over her T&A surgery. The ENT said that this can happen, as its quite a traumatic event.
She's started have Night Terrors which are horrible. We also put that down to the surgery experience, but we'll monitor it incase it is a sleep apnea episode which the tonsils surgery was meant to resolve. Never a quiet moment in Sheena's little life.

Turned A Corner?

2009-01-22T08:37:00.003+11:00

We're just starting day 8, and I am hoping we've turned the corner since T&A surgery. Sheena had me very worried yesterday afternoon after not eating or drinking all day, and barely the previous 2 days. Other than being pale and cranky she didn't show significant signs of dehydration, but I didn't like the path she was on. I wonder if her low muscle tone means she doesn't need as much fluids as most kids without getting dehydrated. A teddy bear picnic in the backyard did the trick late in the afternoon, as well as chocolate milk which she's never taken to before. Yesterday was all about experimenting on the fluids front, so it was very satisfying when she finally agreed to have a drink. She had half a slice of bread at the picnic (chose the peanut butter over avacado), and lots of milk. Sigh of relief from mum. She's lost over 1/2 a kilo since the surgery, and is looking so slim.

She's been better since, and only needed one dose of panadol to get her through the night. Much better than 4 hourly like for the past few nights.

A painful weekend.

2009-01-19T10:27:00.003+11:00

We were warned that day 4 and 5 can be very very sore after the T&A surgery. Sheena had frequent periods of severe pain over the weekend. Pain-stop didn't hold her for 4 hours all the time, and she woke up overnight every four hours screaming in pain, but still really sleepy with her eyes shut while we gave her pain relief.

Poor little girl.

She couldn't eat all day Saturday, but she snacked on Sunday. All the time she could tolerate milk which is very good, and she wanted it a lot as she was hungry from lack of food. She managed breakfast this morning thank-goodness. We can tell her body is weak, understandably. She is so heavy to hold as she doesn't put any muscle power into it, sensibly conserving energy where she can. Of course she wants to be held more often, and my shoulders are really tight from all the lifting.

Here is Sheena playing with one of her birthday presents. Its a bath time favourite. Great for her fine-motor skills, and learning to pour water accurately. She loves having Roy in the bath.

Sheena minus tonsils and adenoids

2009-01-15T15:47:00.004+11:00

Sheena had her ENT surgery yesterday. The procedure was tough on Sheena-Poppy, and she was in recovery for over 2 hours while other children were through recovery within 20 minutes. That was by far her most troubling time. Her oxygen sats were in the low 90s, so she needed extra oxygen to keep it there. She needed two lots of morphine, as she was screaming in pain. She eventually settled, but was clinging to me like a koala bear, and it took us over 4 hours before we could convince her to have a lie down on her own bed once we were on the ward. Here she is on the ward looking pale and red around the eyes. The morphine made her eyes and nose all itchy, not to mention all the crying.

We thought fluid intake would be impossible, but when she eventually agreed to have something about 4 hours after surgery, she guzzled over 500mls of milk without bringing it back up, then had a muslei bar for dinner. Her night was ok considering. A few wake ups and some pain relief at 4am, but that was expected. At 10.20pm when I was reading in the seat next to her in bed, she sat right up, but remained completely asleep. She sat there for 5 minutes, in a deep sleep. I was just watching but wanted to know what would come of it. Her oxygen sats then dipped to 88, and she woke up crying, but easily resettled. I suspect it was a sleep apnea episode - it was very spooky almost to watch her sleeping like that. Otherwise he breathing overnight was very quiet (not to mention the mum of the baby in the bed opposite).

Today she is slowly recovering with good pain relief every four hours. She'll have a quiet week ahead, and will hopefully be better than ever.

We're goin' to the Zoo

2008-12-29T16:48:00.006+11:00

We had a family trip to the zoo. Sheena was only in the double-pram for 15 minutes, and the rest of the time she marched around herself. We had a great view of the bears who went for a swim and a had a good play for us. The Lions slept, but we tried to wake them up like you do Jeff, The Wiggle, "1,2,3 WAKE UP LIONS", and I think she enjoyed that almost as much.

Sheena loves Santa

2008-12-26T21:39:00.008+11:00

Sheena had a happy and healthy Christmas. She is much more into her presents this year. Last year she was still flinging most toys about, but this year she was wheeling her new cars across the floor, she was playing Roy's bongo drums, using her etch a sketch, and throwing a new ball about the place. I think by next year she'll be able to unwrap her presents by herself. Here is a video clip of her trying to say "Ho, Ho, Ho" with Roy.

She is rather infatuated with Santa, and is constantly requesting the song "Santa Claus is Coming to Town".

Meeting and Greeting The Wiggles

2008-12-14T21:31:00.006+11:00

The Day arrived. The video says it all!

Dissappointing Day

2008-12-12T20:17:00.003+11:00

Here Sheena is hamming it up with her rapidly growing 'little' brother.

Very disappointing news from the ENT specialist today. We were all geared up for Sheena to have her tonsils and adenoids out next week, but its been put off until January or February next year. While Sheena's been sick for the past few days she's been having nurophen quite regularly, but you can't have it for 2 weeks before the surgery because it can cause bleeding. Hubby had organised days off work, I'd organised Nan to look after Roy on surgery day, and basically cleared the calendar for the following week (despite it being Christmas time). Anyway, there are worse things in the world of course, but we are disappointed.

She is still sick, but the ENT Doc said its not her ears or throat, so I don't know what is up. Barely drinking, and only eating a few crackers a day. Her color is terrible too.

Tired Times

2008-12-11T16:13:00.002+11:00

Sheena has had a shocking few days with probably a sore throat and ears. Waking up crying overnight, and looking awfully sick. Not eating or drinking and generally being very disagreeable, mixed up with being more needy/cuddly than usual. We have to see the ENT Specialist tomorrow, so I am wondering if he'll put her on antibiotics and postpone the surgery which is meant to be next week. Poor poppet.

Luckily her baby brother is sleeping through even though his bedroom is right next to Sheena's who wouldn't fall asleep until 10pm, then was awake at 1am, and from 5.30 onwards. Not her usual form at all.

Tonsils & Adenoids Out, Grommets In

2008-12-03T16:18:00.005+11:00

Sheena's sleep study results were positive for sleep apnea, so the plan is for tonsils and adenoids out, and they'll do grommets at the same time.

Surgery will be mid-December, which I am happy about, given her EI playgroups and creche will be closed over Christmas time anyway when she'll need her recovery.

Obstructive sleep apnea ties a lot of things together. Her pulmonary hypertension, blue episodes, and the very long daytime naps. I am so glad her cardiologist was onto it, and made the referral to the Respiratory and Sleep Specialist. Four specialists were involved in this diagnosis: the Peadiatrition, then the Cardiologist, then the Respiratory and Sleep Specialist, and finally the ENT. That won't be the end of it, as they'll all want to see Sheena again to make sure it has resolved the problem. I haven't added up the cost of all these appointments and tests. Medicare doesn't cover it 100% (far from it). I don't think I want to know.

Limo Driver

2008-12-01T15:29:00.003+11:00

Sheena has a bit of a virus, so I'm keeping her home from creche. Pre-schoolers are

meant to bounce-back from any bug, but not Sheena. She liked leading the way in the tandem pram that stays at Nan and Pop's house.

She turns 3 in early January, so I am starting to prepare for her party. She had a family one last year, but this year she's going to have a small get together with some of her friends. Its quite fun actually.

Summer soon.

2008-11-25T19:48:00.004+11:00

Sheena has been enjoying our new lawn. I have too! Its been on the want list for a couple of years. Sheena only started toddling last summer, but this year it will definitely have a lot of use.

Sheena now makes an attempt at saying people's names. When I say we are going to see "Mel", she'll say it back. Same with "Barb" and "Roz". Names like Robyn are harder, but she does have a couple 2 syllable words like "cooking" (oddly enough), but its her toy cooking set that got that going.

Her other little accomplishment is getting onto her toy riders by climbing on in the right way. Before she would bum backwards, then get her stability, then fling her let over. She's obviously got enough stability now to stand and fling a leg over without having to sit first. I am always very impressed regardless of how she works out how to manage things based on how her body works.

Ticking the Boxes

2008-11-15T19:32:00.008+11:00

It started in January 2008 when Sheena turned 2 - photos to prove it. We decided that we'd accept the mess and encourage Sheena to self feed. Her fine motor skills have always been particularly delayed, so it was a skill that Hubby and I have really wanted Sheena to accomplish - especially knowing that we'd have a new baby to look after in June. A few times I'd asked the OT, does she actually have the ability to do it, and I'd need convincing that we were not wasting our time.

Today, in November 2008, Sheena managed breakfast and dinner all on her own with a spoon and fork (lunch has always been the easy meal with a sandwich). It has been a frustrating, messy, time-consuming, and sometimes a battle-of-wills effort. Next comes the toilet training...

Fantastic to have this box ticked off though. I feel like celebrating.

Computers 101

2008-10-30T20:29:00.003+11:00

Sheena will now drag a dining chair in front of the computer, climb up and start typing or playing with the mouse. It makes a little girl feel very mature.

We've discovered Dora games and sesame street games etc. However, photos of herself are still preferred.

Boosted

2008-10-28T19:56:00.003+11:00

Not surprisingly Sheena has another cold. Temper tantrums aplenty, which is not her usual style. She had a long-long-long sleep today, and needed panadol after dinner - but at least she had dinner.

Here she is on a happier day. I was taking photos of Roy, so she put forward her best smiles to get me to take pics of her. This is her new booster chair now that Roy needs the high chair.

Surprise Sleep Study

2008-10-26T08:55:00.003+11:00

Sheena had a sleep study Friday night. It was very last minute, as she had been on a cancellation list. We were called at 3pm, and asked if we could be in there by 7.30pm. We decided we could manage it. It was quite an ordeal to say the least - mainly for Sheena, but parental anxiety levels were pretty high too.

We got there at 7.30pm. Her bed time is 7pm, so she was tired before it started (and she'd had a big day because we were not preparing for it). Getting all of the probes and monitors on takes 2 hours - the most intense bit being the first hour where the child has to be awake and upright, In Sheena's case she was also upset because she is sensitive around her head, particularly behind the ears. Hubby and I were both there for this part, because we knew it would be tough, and Nan looked after Roy at home. We read Sheena books and did action songs and got through it better than I expected, but I had built it up. The technician's name was Dora, and she was fantastic. She was studying medicine, and from a bedside manner perspective, I think she'll make a great peadiatric oncologist which is what she wants to specialise in eventually.

Hubby stayed in with Sheena, and he said she had a very disturbed night. Tossing and turning, sitting up looking at the light on the end of her finger like ET. They then woke her up at 5.30 to start taking everything off which was very distressing for Sheena.

The following day, she had a 2 hour nap in the morning, and a 4 hour nap in the afternoon, then back to bed at 7pm. We did squeeze in a trip to a local park for a ride on a Train. Sheena even looks tired in the photos.

Too much

2008-10-20T21:32:00.002+11:00

Now that Sheena is going to her developmental school 2 days a week, we are dropping her creche days back to 1 day a week.

Its a tough balance. We want her to be around typically developing children as well as getting all the extra attention and stimulation that her special developmental school can offer.

The little darling had a full day of creche today and she was exhausted. She went to bed at 6.30pm. She denied wanting to go to bed saying "no, no", but signed "book" which is her wind-down ritual anyway. 5 pages later she was off to bed.

From a health perspective, her at home oximetry test came back inconclusive which means we have to have a full sleep-study overnight at the hospital. There is a long waiting list, so we'll be lucky if it is before Christmas.

Directing Sheena

2008-10-14T21:00:00.004+11:00

Sheena seems to be enjoying her developmental school, and she is now going there 2 days a week. They are moving 5 minutes in our favor in the next couple of months.

Her communication is improving a lot and she particularly likes directing people around the house while she is playing. Here she is making sure Roy and I have a lie down with her on the mat.

Confused

2008-10-09T06:26:00.003+11:00

I've been really confused this past week. Hubby and I still don't think Sheena is healthy. Her peadiatrition thinks its "nothing sinister", but her cardiologist said that the results from her echo were "important". He rang me yesterday with good news that her 24 hour holter monitor test came back normal, but wants us to see him again after her sleep study this week.

She is certainly in good form, is playful and enthusiastic, but she's not eating much at all, her complexion is off, and she's still needing a lot of sleep. When she was at a play centre yesterday, she still looked a good size in comparison to the other children, so she might not be eating much because her activity levels are relatively low.

Sheena the shadow

2008-10-08T05:48:00.005+11:00

Pretty impressive splits! Sheena likes to play a game at the moment where she makes a shocked expression, then does a really cheesy smile. She wants someone to do it with her in sync, and it is rather amusing. She has an amazing sense of fun and enthusiasm.

She currently bellows "BAAHDAAH" to get our attention. "Mummy" or "Dadda" would be more civilised, but "BAAHDAAH" has the desired effect, so we'll have to start encouraging her to call for us by name, because its a bit much.

Sheena is still having her mammoth naps in the afternoon, as well as a full sleep overnight. It curtails the daily activities a lot, but we're accommodating it as she obviously needs it at the moment. She has her sleep study this week to see if she has sleep apnea.

Her big cousin Mark is down for a visit, and Sheena is his shadow. She is rather smitten. They rough-house, make big obstical courses for her dollys and soft toys, laugh at her dollys flying around the clothes line. If never heard Sheena giggle so much. Today I'm taking them to an indoor play center. Mark is too old for it, but he'll help Sheena on the equipment while Aunty Christy and I have a coffee.

Wired

2008-09-27T16:31:00.004+10:00

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This is the messy job the cardiology technician did for Sheena's 24 hour Holter monitor test. Hard to get good help these days it seems. She did not have a blue episode during the test (as is the way these things go).

Holter Hazards

2008-09-26T16:13:00.004+10:00

Sheena has her Holter Monitor on today. She has it descreetly hidden underneath these clothes, and I am not drawing any attention to it for now, so no photos of it directly. The technician fitting it annoyed me because:

1) He kept on calling Sheena a boy
2) He offered no advice on how to keep the thing on a 2 year old

He handed me a strap to sling over my shoulder to hold the device. As much as I love Sheena, I have no intention to staying within 1 meter of her for 24 hours. I said what about a belt, and he then presented a few adult size belts. We ended up wrapping an adult size belt around her twice. The cords are all messy, and I know they can done much neater, and even put in a box to keep them all together. This is why we usually go to The Children's rather than Monash, but her Cardiologist is based at Monash so its a bit tricky to negotiate.

Anyway we are managing well with the holter monitor, and Sheena still had one of her mammoth naps even though all she did today was walk in and out of the hospital. Of all days, when I want to minimize all clothes changes while Sheena has all the bits attached to her, she did the poo-wee sign to show she needed to do a poo. Not the day for a rushed trip to the potty. Definitely time to start potty training I think.

We're off to meet THE Wiggles

2008-09-23T12:03:00.003+10:00

Sheena has been invited to meet The Wiggles. I am very excited, and know that Sheena won't be able to contain herself. Sarah from the Wiggles office called me today to confirm that Sheena (and us) can meet the guys before the show. We'll meet them in December, and we'll be sure to get lots of photos.

Parker has provided us some information on Pulmonary Hypertension. I like action, so waiting until Friday for Sheena to have a Holter Monitor test, then next Monday for her to meet the Respiratory and Sleep Specialist is very hard. I've got a small sty in my eye for the first time ever, no doubt due to stress from not knowing what we are in for.

Now that's a helmet

2008-09-20T20:24:00.004+10:00

Hubby has a new motor bike, and of course Sheena has to get in on the fun.

Unfortunately, from a health perspective, Sheena has been rather complex for the past month. She's had a number of blue episodes, and they are now coming once or twice a day. She is also now sleeping 12-13 hours over night, as well as having a 3.5 - 4hr nap during the day. On top of this, her appetite is significantly reduced.

We purchased an oximeter from ebay, and her oxygen levels and HR are dropping significantly during these blue events. We visited her Paediatrician, and he ran some tests - including Thyroid, allergies and FBE, and they all came back normal. He also referred us to he cardiologist who we went to on Thursday. The echo showed she has Pulmonary Hypertension, which can be very serious if its primary, so we're hoping its secondary and due to some airway obstruction or sleep apnea. I'd rather it be nothing of course, because none of them are straight forward like taking a pill in the morning. She's now booked to have a 24 hours Holter monitor test next Friday which will check her heart beat overnight, and then due to see a respiratory and sleep specialist the following Monday. Ughhhhh - stress!!!

Howdy Partner

2008-09-16T20:33:00.002+10:00

She now loves Dora the Explorer as much as The Wiggles. She's going to see the Wiggles live in December. I don't think she'll be able to contain herself.

She's still rather wary of Roy. I think she is scared of hurting him. We taught her to be gentle, but I don't think we overdid it. Three months down the track, she usually keeps a wide berth from him. We have to encourage her to give him a cuddle or hold his hand. Never mind, plenty of time for that.

Bonding with Baby

2008-08-24T21:35:00.004+10:00

Sheena has been doing the actions to lots of songs to amuse Roy. He is suitably amused and smiles or chuckles along. Today it was the Little Green Frog, and Sheena makes the funniest Galoomp noise (you have to know the song for that to make any sense).

Sheena has been really sick for the past few days. Conjunctivitis started Saturday - eye cream from the GP. She had a blue episode on Sunday during breakfast, and had a swollen lip which the GP thinks may have been a severe reaction to the eye cream. Another visit to the GP and now on full-on antibiotics and eye-drops instead of the cream. We're anxious she'll pass it on to Roy, so I am washing away the day. No more blue-episodes, but it was very odd and scary. Here she is looking rather under the weather, but still keen to give Roy a laugh.

Body slamming

2008-08-23T10:32:00.003+10:00

Sheena is the queen of rough-housing at the moment. She even tugs at her 70 year young Nan's hand to pull her down to go rough-housing all over the lounge room. Its the most exercise Nan has in a week.

School Days

2008-08-10T19:16:00.002+10:00

Sheena has started a new developmental school. She is

2.8 years old, so now qualifies to enter the school system rather than just the early intervention centres. Its still basically an early intervention program, but its funded by the Education Department rather than the Department of Human Services, so it gets A LOT more Government funding, and can extend to 3 days a week, rather than 2 hours a week. We don't think Sheena needs 3 days a week, so for this year she is starting off with 1 day. The facilities are significantly better, with a gymnasium, a shaded outdoor playground with a good surface, and the children get regular 1-1 therapy as well as class activities. Its 1-7 children ratio, with 2 additional support staff in the room. We're quite excited about it, and Sheena did very well on her first day. She picked Banana's in Pyjamas for song time (not one we ever do at home), and the teacher described her as a 'mover'. Yes, we know...

Double up

2008-08-04T21:33:00.003+10:00

Sheena is not 100% happy with the double pram. It isn't as comfy as the single buggy, but it serves the purpose for walks in the park, and hopefully for runs once I am completely recovered from the C-section - and once Roy gets a bit bigger.

Oversight

2008-07-26T13:09:00.003+10:00

Always eager to make the next step forward, it is easy to overlook the huge progress Sheena has made this year. Here is a picture of Sheena showing off something she perfected since March this year - climbing and sitting on a chair (with mum and dad confident that she won't fall off!), and able to get back down again independently.

I am still weary of Sheena managing heights. Her lax joints means that she might want direct her leg 20cm, but her leg might accidentally fling 30cm, and over she would go.

Speaking of independence, Sheena will now insist on trying to read a book herself. Occasionally I am allowed to read it first, but then she'll want to take control. She is very determined to learn how to flick through all the pages herself without us helping by opening each page a little bit. Sheena is rather eager to develop the fine motor skills to manage this task.

The other thing Sheena is very keen to pick up is walking up and down stairs without using her hands to crawl up and down. She usually doesn't get frustrated with lack of success, and she'll just do something repeatedly before she perfects it, but if she has to sit down along the way trying this, it is definitely tears.

Spot the real baby

2008-07-20T07:12:00.005+10:00

On her own accord Sheena has started to play with her dolly in a lovely creative way. She takes dolly to the change mat for nappy change, she puts dolly on the activity mat just like mum does with Roy, and she puts dolly in the swing, the seasaw, the toy pram, and as you can see likes to give dolly a dummy.

In the short term

2008-07-18T19:23:00.002+10:00

Its the first week of the school term, which means planning sessions to discuss goals with Sheena's EI teachers for the next 6 months.

As we're in the terrible two stage, some of the goals are behavioural, typical stuff like holding hands when walking down the street, and not standing on the couch, and not sitting on the coffee table. Developmentally, our major goal is still with the spoon feeding. Unfortunately Sheena did not make much progress with that skill over the past six months. Also, at the moment, Sheena has a very short attention span to attend to an activity, so we're going to try to encourage her to have one more go, before she moves onto the next thing.

Sheena's secreterial skills

2008-07-14T07:25:00.007+10:00

Let me quickly type this important memo

I need to use the mouse for this bit.

I think I'll stand up to finish this draft.

Time to review on the couch

Just a minor change, and I am happy to send off.

Getting to know baby Bro

2008-07-08T20:22:00.004+10:00

Sheena is rather nervous around her baby brother at the moment. She tries to avoid cuddling him, but at the same time is curious at a distance. This photo took some effort, as Sheena would jump off the couch rather than sit and pose next to Roy. At the same time, Sheena can say Roy very well, "Roy oy oy", which she says whenever he cries, or sees him - or even his bassinet.

Roy is already addicted to his dummy thanks to his time in hospital. Pretty much every baby on the ward had one. He now has a blog of his own - www.roydeclan.blogspot.com. He is doing better - thanks to everyone for your best wishes. He has avoided surgery so far with lots of drugs on the go to maintain him. We see the cardiologist next week to see how he's progressing.

Our Walk

2008-07-06T08:55:00.006+10:00

Sheena's walking is considerably less stiff and she is getting more adventurous with her travels. Sheena started toddling 6 months ago when she turned 2, and now the toddle has gone. She still needs more practice with going up and down hills, but she manages rough terrain if the surface is fairly flat. Yesterday she went to investigate a barking dog at a neighbours house, and then got rather interesting in a pile of fire wood.

Very Serious - but not for long

2008-07-01T10:46:00.006+10:00

Sheena was looking rather serious here until the camera came out. She has taken to enjoying art - hence looking rather pleadingly at her table. Thankfully they do a lot of painting at childcare and playgroup, because I can't be bothered with tidying up paint at the moment. I am quite happy for crayons, but not the whole smock and paints process while we get through the newborn stage with Roy.

Sheena is being a great big sister. Only one time of very obvious jealousy when she didn't want to be put down when Roy needed a feed. That is fair enough.

Roy is gaining weight. 80gm over the weekend, when they were hoping for 90gm. Close enough when you think about the amount that goes in and out at his age. He seems so much stronger, and is filling out. The nurse that comes out is an Enhanced Maternal Health Nurse - i.e. home visits, and more frequent visits than usual after a baby is born. We've been spoilt with services since Roy had all his heart problems. She recommended that we get our immunisations at the Hospital Clinic rather than through the local council, as heart-kids can be effected by them more so. A bit scary! The first lot are only three weeks away.

Busy gaining weight to avoid heart surgery

2008-06-28T11:03:00.003+10:00

This blog is more about Sheena's baby brother who is now three weeks old - but he has been the big deal of late.

He is out of hospital, with a strict regime to gain weight over the next month, in the hope that he will grow, but the holes in his heart won't, thus reducing the symptoms.

He is on lasix (diuretics), and captopril (to reduce this blood pressure), and polyjoule (a syrup to be given after each breastfeed which is very high in calories). He gets weighed 2 times a week by a nurse that comes to our house. We have to keep him away from anyone with a virus, and basically reduce anything that is going to make him work too hard. We have to keep him especially rugged up, and avoid big changes in temperature as much as possible to avoid him wasting energy trying to keep warm.
The final decision after 4 echo's was that Roy has Swiss cheese VSD's, or multiple vsd's ranging in size from 3.5mm to 1mm. Each hole on its own is considered small, but because he has several it caused the heart failure. The doctors are hoping, that by waiting one month the holes will spontaneously close or significantly reduce. There is a strong case for this because:
1. The holes are relatively small and if they were in isolation they would probably not have caused him any bother.
2. They're in the more muscular part of the wall which apparently means they can close more readily
3. Being in the muscular part of the wall, surgery would be very difficult at this point, as its hard to locate them through the various muscle fibres.
4. The only surgery they could do now is to put a band on the pulmonary artery, so it is not a complete solution, but would stop the heart failure problems.

Here is Roy's journey from hospital to home again. He was in for 13 days.

1. Initial few days in the high dependency room on the cardiac ward. Plugged into lots of monitors.
2. A precious wee cuddle with dad before going back under the lamps to get rid of the jaundice.
3. Back under the lamps again, but with less tape on his face as the oxygen prongs are no longer needed.

4. Off most of the monitors, still looking rather sick though.
5. Two days before discharge. Still have nasal gastric tube, and still alternating BF with NG feeds.
6. Back home again, feeling free and happy.

Sheena and Roy - 2 weeks in.

2008-06-22T10:24:00.003+10:00

I have been spending pretty much all of my time in hospital with Roy for the past 9 days. The day goes really fast with all the other stuff that goes on, so anyone that has phoned or emailed, I apologise if I am really slack at getting back for now. Phones aren't allowed on the ward which makes it difficult.

Sheena Update:

Yesterday I had my first visit home for about 8 hours, and had a proper play with Sheena. Of course I've seen her here and there, but its usually only been a brief hour while hubby comes to visit, and it just awkward entertaining a 2 year old in hospital. We're never taken her up to the cardiac ward as we don't think its the place for her, but there is a play room and outdoor playground to keep her entertained.

So our afternoon and dinner was great fun with Sheena. Sheena was in great form, and her "conversations" are getting much better. She will now go, "blah, blahh, day, da, ba, ma nann nann" as though she's trying to tell me something very important but can't find the words to make any sense of it. Thank goodness for sign language to fill in the gaps. There is a lot more inflection in her voice making it quite different to normal babbling. Very sweet. She is also getting much stronger - particularly her legs. Everyone that sees her regularly has noticed the change in that.

She is handling being with her dad 80% of the time, and with her Nan and Pop the remaining time very well. She's used to spending most of the time with me, but the fact that she's coping so well makes it easier on everyone. She is off her food much more than usual, but I am told by my girlfriends that this is not unusual for a 2 year old anyone.

Roy Update:

Roy is nice and stable, and his work of breath is more under control now. He still is working more than he should, but its much improved. He still gets poked daily for bloods, but is down to just an nasal gastric tube, and is now fully dressed, and much easier to cuddle than when he was in the heated cot while they watched his chest, and had an ecg going all the time. We've been moved from the high dependency room to the regular room on the ward, so its a bit quieter, with less beeps going off all day and night.

His diet is closely monitored, and he alternates BF's and NG gravity feeds. Each BF involves a weigh in before hand, and then after, so that they can calculate exactly how much he is taking in, and if isn't exactly 100mls, they top him up with some EBM so they can ensure he's getting the planned amount set out by the dietitian. It is all rather medicalised, but its important, as they need to track if he's gaining calories or if is fluid retention which the diuretics should be controlling anyway.

The plan for Roy at this point is to have surgery next week. We don't know when but the surgeons meet on Monday to schedule the week based on each child's case. Roy is a priority case given his age, and that he's still in hospital. His obs are stable, however, so even if we're told its Wed for example, it could easily be put off if a more urgent case comes up in the meantime.

Thanks everyone for your interest and best wishes.

Big Sister Sheena

2008-06-18T19:44:00.004+10:00

Sheena is now the proud big sister of Roy. Roy arrived via C-section weighing 4kgs - 500gm bigger than Sheena was.

Unfortunately Roy has only spent 2 days at home with Sheena despite being 13 days old already. They detected a heart murmur, which he was coping with fine while at the maternity hospital, and was discharged with a plan to follow up in the next few weeks as an outpatient, expecting that the holes would spontaneously close (as was the case with Sheena). However after 2 days home from hospital, Roy went into heart failure, and he's been in hospital since. It looks like surgery is the path we're on at the moment. There is still a chance that they'll send him home first beforehand, but his work of breath is still really labored, so he is staying put at the moment.

Sheena is being a bit naughty at home with Dad at the moment, but that is to be expected given she's 2 and testing the boundaries without mum around to say No. I have been in hospital with Roy, so I am missing Sheena a lot, but see her every second day for an hour or so. Cardiac wards are not good play areas for 2 year olds, so its hard to do much more than that at the moment.

Heading Out

2008-05-25T20:37:00.002+10:00

Sheena has started to be very helpful when its time to leave the house. She now gets her own jacket and shoes from the cupboard.

Sheena had another shocking EI playgroup last week, but I persisted through her tears of protest, and just wanting to be cuddled. I think she is resisting being made to 'work' with all the therapists. If it was free-play she'd prefer it much more, but unfortunately that is not the point of it all. One of my mothers groups was in the same centre later in the week, and she was fine after 5 minutes of wanting cuddles, and being unsure. As soon as she was satisfied that there was no pressure to 'perform', she was happy and played and socialised nicely with everyone.

No, No. Yes, Yes.

2008-05-12T20:04:00.004+10:00

Although she can sign yes and no, Sheena doesn't really shake or nod her head, which we're trying to encourage. I found this cute book on yes and no, so that I can massively over-exaggerate the head-actions while I am reading it to her. It has quickly become a favorite as you can see from these pics. The reason she doesn't nod or shake her head isn't because she doesn't get it, its basically because she still hasn't got the body/muscle control to do the action. Meanwhile, she'll nicely do incy-wincy spider, so its a bit confusing on why one thing works and another is still to come.

Baby-meltdown morning

2008-05-07T21:11:00.003+10:00

Sheena had a baby-meltdown at her EI playgroup this morning, and I took her home after only 20 minutes. She was crying, clingy, and very sooky. The main co-ordinator who is a Special Ed teacher was worried that we were setting a bad trend, but she had been in the other building while Sheena was having her first meltdown. With her encouragement, we gave it another try, but we lasted another 5 minutes tops. Despite her best efforts (and this lady is really experienced in working with pre-schoolers) at making it fun and interesting, she also realised that this was not Sheena's usual form, and it wasn't going to be worth the while today.

It was a big shame to have missed playgroup, because most of the other kids were away with colds, and there were more therapists than children. She was OK by the time we got home, so I don't know what was going on. Next week, I'll try to get there a bit early, and maybe she'll ease into it OK like she usually does.

Reading Role-Model

2008-05-02T20:53:00.004+10:00

http://www.youtube.com/watch?v=JgD278miCR8
Here is Sheena and Cousin Mark bonding over a book.

We had our six monthly visit to Sheena's Paediatrician today. We had to talk thyroid problems, but Sheena's recent TSH blood test result was so mildly elevated, that we are not going to treat it yet. We'll monitor it, and start medication later if it gets worse. Sheena will flick her right leg out a little bit when she walks, but the Dr thinks this is her general low-tone rather than it being her hips out of place. As she continues to build strength this should reduce.

We had a neck xray at the hospital to see if Sheena has Atlantoaxial instability - 14% of people with Down Syndrome have atlantoaxial instability. Its recommended that it gets assessed between the ages of 2 and 4, as children get more active and before they get involved in sports. We find out in a week where Sheena fits in.

Sheena also had another speech pathology appointment today. Made for a busy day, but all worked out well. We got a long nap in, which makes the world of difference.

Cool cat

2008-05-02T02:11:00.002+10:00

We've had a cold-snap, and I've been able to dress-up Sheena in her leopard suit. In this photo she was running around the house roaring like a lion.

She's been a little unsettled with creche recently - only late in the afternoon. I'd been blaming it on the fact that she only manages about a 1 hour nap at creche, but always has a two hour nap at home.

However, it occurred to me this week that she might be just hungry, because she's usually after a decent snack around 4pm. She starts signing for food, points to the kitchen then goes in there and sits or stands near the pantry and does the biscuit sign (for a cracker) or the sultana sign. This is all really easy for me to work out, because 1. I am her mum, and very in-tune with her, and 2. She has my full attention at home and I see her sign-language every day. Anyway after I suggested it at creche, it worked! They said she started to get a out-of-sorts at 4pm, and they gave her a snack and some milk. She was very happy when I picked her up and stayed that way until bedtime. Makes for a much more pleasant evening. Isn't it great when something so simple works and makes life happier for everyone.

I might go into creche for an hour or so soon so that I can help show the carers her main signs. We see them very clearly, but I suspect its hard for the child-care workers to determine what is her mucking about playing, versus her trying to sign something. While she's playing, she constantly signs, like "dolly", or "baby dolly sleeping", but I suspect they don't see a lot of this.

Adoration

2008-04-26T19:08:00.002+10:00

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

2008-04-22T20:18:00.002+10:00

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

2008-04-21T15:58:00.007+10:00

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

2008-04-09T19:17:00.005+10:00

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

2008-04-06T11:35:00.003+10:00

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

2008-04-01T19:48:00.002+11:00

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?

2008-03-29T20:41:00.003+11:00

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

2008-03-26T20:51:00.004+11:00

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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

2008-03-23T17:42:00.003+11:00

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.

2008-03-13T21:09:00.001+11:00

Just wanted to share the pigtails.

Our Horrible Wednesday

2008-03-12T20:22:00.003+11:00

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

2008-03-08T20:52:00.003+11:00

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

2008-03-07T15:21:00.004+11:00

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

2008-02-19T19:17:00.003+11:00

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

2008-02-07T20:36:00.000+11:00

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)

2008-02-06T21:19:00.000+11:00

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

2008-02-02T15:13:00.000+11:00

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

2008-01-22T20:19:00.000+11:00

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

2008-01-18T00:48:00.000+11:00

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

2008-01-14T15:40:00.000+11:00

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

2008-01-01T17:28:00.000+11:00

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

2007-12-21T11:36:00.000+11:00

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.

2007-12-18T20:51:00.000+11:00

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

2007-12-16T10:10:00.000+11:00

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

2007-12-14T10:57:00.000+11:00

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

Summer Accessories

2007-12-04T18:22:00.000+11:00

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.

Welcome to Christmas

2007-12-01T20:36:00.000+11:00

We went to our first Christmas party for the year.

Its a bit hard to bum shuffle on a jumping castle, so we saw Sheena some-what crawl today as she tried to check out the various animal prints.

Sheena was frocked up in her Christmas party dress. It still fits her from last year :)

Sheena's Days

2007-11-30T11:12:00.000+11:00

Sheena is currently either very active, or totally exhausted. She still has two naps a day, but when she isn't having her naps, she is very busy stacking things on shelves, or climbing up on us, or making her way around the house. I leave her to her own devices a lot, because she's so busy exploring, that she's very content and happy doing that. Her favourite time with us is story time, and three books are the bare minimum. Its more, more more.

She somewhat falls apart if she doesn't get her two naps in. Her day at creche is her hardest. She only gets 1 hour sleep all-up, because there is a lot going on and all the activity keeps her awake. By the time I pick her up after work, she's well and truely had enough. However, I think the creche is good. The carers are lovely to her, and she gets to have a lot of playtime with other kids her age.

Next year, I'm going to keep her in the baby room until she's 2 1/2. My goal is for her to move up to the 2y/o plus room by August 2008. That'll give her a chance to increase her stamina, and get stronger stability on her feet. I'd like her to move up though, so she's with the older toddlers and it'll ultimately help her develop speech.

The Haircut

2007-11-24T15:07:00.000+11:00

It was a few weeks ago now, but while Sheena's Nan was looking after her, she took her to get her hair trimmed. It was not a fun experience for anyone. Nan's next-door-neighbour has an in-house salon, so it wasn't like it was in a commercial salon, but there was quite a scene regardless. Sheena screamed, and got very distressed about the whole affair. Sensitive little soul.

DSAV Conference

2007-11-11T20:29:00.000+11:00

We spent the weekend in Beechworth at the Victorian Down Syndrome Association Family Conference. All was good. I was a bit slack in attending all of the conference sessions, but I enjoyed the socialising aspect, and getting out of town. Hubby got a lot out of the sessions, especially early reading and learning maths. Sheena liked the creche for the kids. She impressed them with her bum shuffling prowess. She impressed me in not sobbing while we left her there, as she's not fond of good byes at the moment, but hopefully that is a passing phase.

Here she is doing one of her happy baby dances.

Cruise Control

2007-11-05T20:37:00.000+11:00

I was reading recent posts, and realised that its only been 3 weeks since Sheena learnt to get into standing on her own. She now cruises around the furniture, and stands up like she's been doing it for months. Hubby even found her at full stretch holding onto the edge of the big table for sheer life. We can only assume that she navigated her way there via a chair, but from where we were it didn't look easy.

Sheena has succumbed to conjunctivitis. She often gets watery eyes, that resolves itself within a few hours, as she's got a blocked tear duct that causes that from time to time, but this was something different. She is now on antibiotic eye drops, which should quickly do the trick.

We've been thinking about speech lately, and we're not having a lot of progress on that front. She will repeat things like coo-wee, or ohhh-dear, nana, dada, doe-doe, but that is about it. Her 'ta', is not consistent, and if she does it, it comes out as 'agh'. We were thinking how different life would be if she did chat away. Speech apraxia can be a factor both with Down Syndrome and Infantile Spasms. Its a speech disorder that interferes with a child's ability to correctly pronounce sounds, syllables and words. It is the loss of ability to consistently position the articulators (face, tongue, lips, jaw) for the production of speech sounds and for sequencing those sounds into syllables or words. The child does not have difficulty with non-speech activities performed with the muscles such as coughing, chewing or swallowing. However, the area of the brain that tells the muscles how to move and what to do make a particular sound or series of sounds is damaged or not fully developed. This make retrieving the 'motor plan' for saying a work difficult. We shall see. To me, it seems consistent with her so far.

Dressed for Success

2007-11-01T09:24:00.000+11:00

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

2007-10-28T13:15:00.000+11:00

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.

2007-10-15T19:27:00.000+10:00

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

2007-10-12T18:38:00.000+10:00

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

2007-10-07T13:38:00.000+10:00

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

2007-10-02T13:31:00.000+10:00

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

2007-09-28T22:21:00.000+10:00

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

2007-09-18T21:07:00.000+10:00

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

2007-09-16T20:19:00.000+10:00

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.