Kiwis and Kookaburras

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

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

Remiss

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

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

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

Le Tour

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

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

Oh no it's Winter!

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

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

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

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

Drawing, very, very seriously.

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

Driving her big red car inside the house.

Practicing her yoga moves.

Ears and Eyes

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

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

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

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

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

Pots and Pans

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

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

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

Horsing Around

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

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

Up-front

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

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

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

Playtime

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

Heart of the Matter

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

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

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

My feet are Standing

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

No News is Good News

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

Home

Sheena is obviously happy to be home again.

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

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

Winding Down

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

A few more days.

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

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

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

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

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

Another 48 Hours

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

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

TLC for Sheena

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

Little Miss

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

Sheena in her Sleeping Bag

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

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

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