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.

We're goin' to the Zoo

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

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

The Day arrived. The video says it all!

Dissappointing Day

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

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

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

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.

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

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

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

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

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

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

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

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.