November News

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

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

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

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

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

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

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

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

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

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

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

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

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

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.

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?

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.

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

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.