Happy Baby Dancing

We went to the local childcare centre today for orientation. I didn't really like it. Not the centre, or the people, more having it right in my face that Sheena won't be Miss Priority while she is in childcare. Hubby and I had always planned to have our kids in childcare while we continue to work, so now that Sheena's health is remarkably better, we're keen to get back on track. Easier said than done. However, like Hubby said, it is only one day a week (until early next year when it will become 3 days). I don't doubt that it will be good for her to be around other babies, but I hope that she is very well cared for in amongst the other 9 babies. She already has a old-friend in the group - Ava from my local mother's group also goes on the same day, but she is interstate at the moment, so couldn't show Sheena the ropes.

About the 5th day in a row of a happy baby!!! Sheena has recently realised that if she does a Happy Baby Dance whenever I am within sight, I will come over and talk to her. She is hilarious. I even joined YouTube today, so that I could show my sister what a changed girl we have on our hands. When Hubby came home from work, Sheena gave him dance as well. He couldn't believe his eyes.

Other than the Happy Baby Dancing the best thing about today, is that I had a 1.5 hour nap this afternoon. Sheena has been waking up at 2am consistently for way too long. It has been the least of our worries, but the interrupted sleep does catch up on you after a while.

Wolf Whistling

No spasms today. This is the first day that we haven't seen anything remotely like a spasm since Sheena was diagnosed. We are hoping for many more repeats. I had a phone-consult with her Neurologist, and he agreed that we don't have to try Topomax as well as Epilim, as the Epilim seems to be holding her seizures. He didn't think my theory that she had Hypocalcemia (severe calcium deficiency) while she was on the Pred had much substance, but I think she had it, and that was why she was grimacing all the time.

We made it to the monthly Down Syndrome Coffee Group today. The first time we've been able to go since Sheena was six months old. She was fine, and was actually quite sleepy, so basically slept or got cuddled most of the time.

The Coffee Group is very well attended. It has parents of babies up to primary school age. When I first went, when Sheena was 4 weeks old, I was amazed that there were so many young ones with Down Syndrome in just our local area (a very uneducated reaction given that 1 out of 800 births has DS, but an interesting one regardless). Thankfully it is only a 10 minute drive from my house. I was fine going when Sheena was 4 weeks, then 8 weeks, but when she was 3 months, I bawled my eyes out. The same afternoon, I stubbornly also went to my local mothers group, and cried there too.

I hate crying in public, but this past year, I have not had much choice in the matter. Something that really annoys me about crying in front of medical professionals is that they seem to want to fix the crying. They want to introduce you to a social worker, or recommend a counsellor. I think that crying is a completely appropriate and natural response to certain situations, but our culture doesn't feel comfortable with it.

Here is Sheena giving a Wolf Whistle.

Gaaaa-AAAhhhh-ahhhhHHHH-gahhh

Sheena has been in good form. I am now getting smiles without too much effort on my part. She is back talking to me today. She'd been cooing when she was 4 months, but stopped when she was about 5 1/2 mths thanks to the onset of her Infantile Spasms. She is back with a vengance, and has been saying Gaaaa-AAAhhhh-ahhhhHHHH-gahhh. When I do it back to her, she grins with her whole body - as pleased as punch with herself. I just put her to bed, and she is still chatting away.

Her lack of appetite for food and drink was starting to stress everyone out. I was the least worried about it in that she is much happier in herself - but she barely had a wet nappy last night, so hubby finally convinced me to sort it out. I popped into the maternal health nurse at the local centre. She was able to look at Sheena and could tell that she isn't dehydrated, so that is the main thing. She gave her a weight, height and head circumference check, and on the normal charts Sheena is still doing fine. 50% for weight, 10% for height and 50% for HC.

It has been 6 weeks since she has been genuinely asking for food. It had gotten much worse since her sore throat started a week ago. For the past week, she only took breast milk, so I have had to let my supply build up again. I have made a lot of progress today, and she's taking yoghurt, custard and prunes - but only small amounts at a time. It'll take a while before she gets back on track properly.

Here is a very exciting photo for us. Sheena was comfortable in her corner chair. This will give her a chance to play sitting up, while building strength in her core again.

I am delighted with her progress. Got to make the most of the good times, especially when they've been rare lately.

Still Smiling

Today, hubby and I went to a wedding. As it turns out, Sheena could have easily come, but (thinking that she would be completely wigging out) we had already booked a sitter to look after her. The ceremony was outdoors in a park, surrounded by trees, and chirping birds. The groom was no where to be seen, but as the music started, he absailed down a tree, complete in formal suit, surprising all the guests. At the end of the vows, we had to go around a camp fire that was lit by an aboriginal guy. As everyone was drowned in smoke, it symbolized refreshing our spirits. Once the fire was almost out, the bride and groom jumped over the camp fire - I think that was meant to symbolize something too, but it was very entertaining regardless. To finalize the affair, the bride and groom jumped over a dijeridoo, and everyone cheered. A very memorable and lovely wedding.

Sheena was doing well. A repeat of yesterday, and more smiling.

A Contented Friday

The biggest thing of note for Sheena today is that she has not moaned or cried all day. I could plonk her anywhere and she was contented. Here she is in her swing having a bit of party.

Sheena had a hearing test today. She can definitely hear, but if she has any impairment, they weren't really able to tell. She isn't really mature enough for the assessment, so we have to go back in a couple of months. Fancy, my 10 month old baby being immature - who would have guessed. They also tested for ear blockage, and they seem a bit blocked, but not too bad.

Small Smiles

Sheena smiled a bit after I forced one out of her with 'ba-ba-boo' talk and tickling. That was amazing. Just a small smile, but hopefully her whole-body smiles are just around the corner.

She has been put on antibiotics to help her sore throat. She has a very furry tongue, is off milk, and has a husky voice. The Doc didn't think her ears were infected. He thinks she is tugging her ears from the deferred pain. Her first ever cold at 10 months.

Here is Sheena ruling the roost with her Nan and Pop when she was only 3 months old.

Yoghurt Please

Well a big step forward today - Sheena finally started eating solids again. We were about to head out for a walk, and I finished off my morning coffee in front of Sheena in her buggy. I noticed Sheena watching the whole process with great interest. I grabbed some baby yoghurt from the fridge, and she ate the whole tub. Phew.

Not coincendentally, Sheena has reduced her Pred dosage down to only 2mls at night. The final week of weaning from it, so we are finally on the home stretch of this ordeal.

Cup Day

We have been trying to keep our chin's up lately, with not much success. It is so upsetting having Sheena regress with her development thanks to her Infantile Spasms. At the moment I feel that we miss out on all the fun stuff that most parents have (and we used to until she was six months). Simple things like picking out toys that she would like. Sheena isn't interested playing with toys at the moment, so there is no use. All she wants at the moment is to be cuddled and comforted. The Down Sydrome thing doesn't worry us much any more, its the IS that keeps on hitting us like a tonne of bricks everyday.

Part of me thinks that Sheena is starting to get better. She is starting to grimace less now that she's weaning off her Pred medication, but she is still grimacing a lot. I checked on the IS Yahoo Group, and other parents found that their baby also did hard-blinking while on the Pred, then it went away. Lets hope.

The back-arching has gone. A couple of days ago she had a positive UTI on a urine test that I do at home. I rang the Dr, and he said to go get it tested properly at a local clinic that night, or wait until the next morning to get it checked. I am getting a lot more relaxed about these things, so I left it, and checked it again myself the next day, and it was all-clear. Perhaps that might have caused the back-arching. Tonight her glucose is up again, but I'll give that another day too.

Her new thing is holding her head with her hands. It looks like it could be a headache or ear infection, but could just be her new 'thing'. It has been a couple of days, so I might follow up on it tomorrow if she is still at it. She only had 3 bottles and 2 small breast feeds today. That is hardly enough for a 10 month old baby. She would take the bottle, suck on it a couple of times, then reject it. It makes me think its her ears, because it would hurt to suck.

Hubby and I both noticed that her face swelling is starting to subside. That is something to look forward to. She is such a pretty poppet, but the moon-face has not been her best look.

It's Melbourne Cup Day today. We were busy doing home maintenance, so didn't take much notice of the races.

Mixed Messages

Sheena had a mixed day. She had a bad run of spasms around 1pm after being irritable for about an hour. They were coming every 5 minutes, so that was dreadful to watch. She was better in the evening, and seems to be less irritated in her face, and was able to focus on things for a decent period of time without grimacing. That has been one thing that she started doing since she's been on the Prednisolone medication. During her last EEG, I got them to specifically check that a grimace was not a seizure, and apparently it isn't 'epileptic activity'. I've read about another kid that also did hard-blinking in a similar way while on Pred. Only 1.5 weeks to go until she is fully weaned. I can't wait. It will be a big milestone in her treatment.

We hung out with the Street family today and went for a couple of walks - all rather quiet.

We're feeling really restricted in our activities with Sheena being sick for so long. We still manage to do a lot really, but not half as much as we'd like to be doing. Some people have said to us that it is like this with any new parents, but ours is an exaggerated situation, so it is not the same at all. Things are slowly getting better. Now that the constant moaning/crying has abated, I am feeling able to take her out to meet friends.

Here is a picture of my new kitchen especially for Rebecca C. That yellow paint is going next.

Me and my Beanbag

We had a review appointment with Sheena's Neurologist yesterday - always an anxiety-ridden experience. The only good news was that there was no evidence of Hypsarrythmia on her EEG last week. That is the irregular brain-waves that were stopping her development. A couple of spasms were noted when she was sleeping, but he doesn't think they should cause any damage. Those 20 second seizures have stopped since she's been on a slightly higher dose of Epilim, so fingers crossed that they are nipped in the bud.

He repeated his expectation that it will take her another 6 months before she gets back to the way she was. I am thinking of it as rehab. Her tone has gone backward since she's been on the Prednisolone, which we weren't aware of as a side effect. Not a good thing for a baby with Hypotonia in the first place. Otherwise, the long term outlook is far from great. Infantile Spasms should not have impacted on her motor development, but her intellect is another thing. Of course there is no crystal ball, but the combination of West Syndrome and Down Syndrome is not promising in that regard. Of course little Sheena is exceptional, so she might be the exception.

It will still be another two weeks before she is weaned from the Pred. The sooner the better, but at least it has done its job. It would have been horrendous if she'd gone through all the horrid side effects for nothing. The bloating will come down soon enough.

Sheena has taken to napping in the beanbag. I had her lying in it looking out the atrium window, listening to Mozart (if you don't mind), and she dosed off. Very cute.

Sheena is a Punk Rocker

Sheena gave me a nice surprise yesterday. She had her mowhawk back after her evening bath. She spent her first 4 months with a mowhawk, so it was like old times. She was not well up until about 2pm, then she was fine for the rest of the day. She had 4 seizures, instead of her usual 1, so I rang the Neuro's and they've changed her meds yet again. Just based on my explanation of them, they think they are Focal Seizures (unlike IS, not too much effect on her development and usually easy to control with anti-convulsants).

Today, she's been good all day, apart from 2 seizures early in the morning that lasted about 5 seconds each. We had a respite carer look after her in the afternoon, and she slept 3 of the 4 hours. Lucky Helen!

While she was being looked after, I managed to catch up with my local Mother's Group. Sheena was missed, and it was odd to be there without her, but fantastic for me to have a few hours chatting with the girls. Hopefully if she stays on the mend, we'll both be back next time.

Sheena was well enough to have a bit of a play on her activity mat without getting distressed.

Little Miss Sunshine

Before: Sheena Day 1 of Pred Treatment 1 Month Ago


After: Sheena after 4 weeks of Pred Treatment

Here are some before and after pics of Sheena. Day 1 of Prednisolone treatment while she was in hospital compared to 4 weeks later. This is mainly fluid retention - Sheena has rejected solids since starting the meds, it certainly isn't due to extra calories. The fluid rentention is mainly in her face. When she's completely weaned from it, she'll go back to the way she was.

I highly recommend the movie "Little Miss Sunshine". A quirky comedy - we laughed to the point that we couldn't stop.

We had a great day yesterday and headed off to St Andrew's Market with Sheena quite content. On the way there we stopped off at a couple garage/moving sales looking for bargains - and bargains we found. We picked up a Burley Bike Trailer for Sheena for AU$35 so that we can take her out bike riding. They are AU$950 in the shops (or US$450). We were fully intending to buy one, so we still can't believe how lucky we were to pick one up that cheap.

I expect that Sheena has an 'aura' when a seizure is coming on. Her way of telling us, is to cry even though she's otherwise comfortable. This morning it happened, and I said to Hubby that she might be going to have one, and then 5 minutes later, she had a 8 second seizure. She also has this thing where she raises her left arm several times looking for someone to hold her hand just before one comes on. When older children with epilepsy have an aura, they often go to their mum's and wait with them so they know they'll be safe. Sheena can't do that, so she just makes sure we go to her instead. Clever.

Beauty Basics

http://www.campaignforrealbeauty.com/home_films_evolution_v2.swf

Check out the above link, that I stole from my sister's blog: http://christy1709.blogspot.com/

Now, I like reading trashy magazines as much as the next girl. I never buy them, but whenever I'm in a waiting room, or standing in line at the grocery store I devour all the gossip. Its a great escape from reality. When I was a teenager, I knew all of the top models by name, and who they were dating at the time. However, it is no wonder that so many of us are insecure about our looks when all this touching up goes on in the background.

Speaking of grocery stores, I am addicted to grocery shopping. Yesterday, while Sheena was quiet for a change, I went through the pantry, and realised just how much stuff I have. I am determined to resist buying any pantry items until I have run down my stock. I am not a huge clothes or homewares shopper, but I love shopping for food.

Tonight Nan is babysitting Sheena, so we are off to the movies. She has had a much better day today - two days in a row of no moaning or irritablity. Her 20 second seizure reared its ugly head at 8am today. Hubby saw it for the first time.

Here is our beautiful Sheena @ 3mths with her Aunty Christy.

Another Day, Another Sheena

For the most part, Sheena decided not to moan/cry today. She was far from happy, but she was quiet most of the time which was fantastic. We did make a lot of changes to her medication today, and she is now on Soy Formula.

She had another one of her 20 second seizures. Since she started those earlier this week, she has had one a day. Every time she has one, I look at the clock and start counting. If it goes on for 5 minutes its very serious, and its then time to call the ambulance. Of course, 20 seconds seems like 5 minutes when I'm watching my beautiful baby girl loose control of her body, so I have to watch the clock. It usually takes me a while to focus on the clock, as I feel really frantic. I have to say the time to myself several times before it soaks in. Its 11.08, 11.08, 11.08 - yes 11.08.

I am still sorting out the respite situation, and I have made a bit of progress. They've reduced the rate from $35.50 to $9.65 an hour. We can handle that. We are allowed 5 hours a fortnight moving forward, but for the first 2 weeks we get 10 hours a week. It is not clear if we have to pay at all for the first couple of weeks, I get different answers depending on who I speak to, so I'll just see.

Here is Sheena and I back in September - I was heading off to work at the time. She's got frills on her top, pants and socks - ohhhh.

The Chubb-Meister

We had a good appointment with Sheena's Peadiatrition today. He has made several more changes to her 'plan', so we shall see.

Other than that, managed to get through a lot of stuff today (however Sheena did have me up at 5am!). Went for a swim in the morning. Arranged for my kitchen to be finished off tomorrow. J, K and J came over for a walk, and I called several friends that I'd been neglecting recently. It is 8pm now, so I am exhausted and off to bed. Sheena only went down an hour ago, so she was exhausted too.

Biting my tongue

Half way through the intake assessment for respite, one of the women told me that 'I should count myself as lucky because Sheena doesn't have a feeding tube or need suction.' I bit my tongue very hard and took a deep breath. I don't think it is up to anyone else to tell you that you are lucky because your baby is sick, but hey, she isn't as sick as some others. It is like with her Down Syndrome. Some people have said to us that we're lucky that she doesn't have 'XYZ issue'. I don't think it helps.

The Commonwealth Respite lady completely renegged on our phone conversation yesterday and now says that we only qualify for 2.5 hours per week, and that it will cost $35.50 an hour. Back to the drawing board. I don't think even Madonna would pay that much to sit with bubba and make sure she is comfortable. I told them that there is no way that we could afford $35.50, so they said, well what could you afford then - so I said $10. She is going to run it by her supervisor and see if it will be OK. What a ludicrous system. I was so mad, but I decided to keep a lid on it, otherwise they wouldn't go into bat for me. I know other people with otherwise healthy DS babies that get weekly respite for $4 an hour!

Sheena was not in a good way today. We do a daily urine test for her glucose levels, and they were elevated for the first time today. I rang the Neuro, and he said that if they're high again tomorrow she'll have to have a blood test. Lets hope they're OK. Sheena had another one of her new jolting seizures today. It latest about 10 seconds this time, and my mum observed it too. They are are lot harder to watch than her spasms.

Here is Sheena last week in her shades.

Arranging Respite and Another EEG

With things being as hectic as they have been lately, I am getting respite organised. The DSAV is helping me get emergency respite through the Commonwealth Govt that should start later this week. Someone will help care for Sheena for 6 hours on a Tuesday and 4 hours on a Thursday. It will give me some much-needed breathing space. This will only be for a few weeks, until longer term respite is arranged through the Local Council. They have to come and do an assessment tomorrow, so it will take a while for that to commence. The Emergency respite is free, but there will be a nominal charge for the Local Council care.

Sheena cried for 5 hours this afternoon. It was horrendous, nothing would calm her, and she had terrible reflux. She finally fell asleep at 5.30pm, exhausted after no afternoon nap. As she's got so many other issues, they all blend into each-other, and its hard to work out what is causing what. No more diluted apple juice for Sheena!!!

The other big news of the day, is that Sheena had another EEG. There is still no evidence of hysarrythmia, so that is good. This morning she had a 20 second seizure while I was trying to offer her solids in her high chair. She jolted her shoulders continuously, her eyes looked blank and to the right, and she went silent. It was really, really scary. A lot more obvious than her usual spasms. I told the EEG technician and she said that as kids get older, their epilepsy can evolve as their brain matures. I also ran into one of her Neurologists on the ward, and he said that seizures can start to look different as you alter medication.

Here is our lovely Sheena at the end of last month in her corner chair.

Camp Cronicles

Home tonight from the camp. It was pretty stressful and tiring, but worth it in the end. Arrived the first night, only to realise that we'd left Sheena's medication (carefully packed in a wine-cooler) on the kitchen bench. We were wrecked and we figured that Sheena would have us awake at 5am anyway, so we decided to collect it the next day. At 5.30am the next morning Sheena and I did the 90 minute round trip and she got her morning dose on time. It was not a good start to the camp.

Anyway, that behind us, the camp was pretty heavy as far as content was concerned. The camp leader was a Specialist who has a PHD on DS development going through all the things that may or may not happen to our kids.

Sheena was well looked after by some fantastic university students. They gave her lots of comfort as is her need at the moment.

By far the best aspect of the weekend was spending time with other new parents and sharing common concerns, and hopes for our kids. Sheena is going through the roughest patch at the moment. The other babies, ranging from 4 months to 2 years, were all thriving. Several had heart issues, some that had needed corrective surgery, but other than that it was more normal stuff like catching lots of colds.

Camp Weekend

We are off to a Down Syndrome Camp this weekend for new parents. We had booked to go before Sheena was diagnosed with her epilespy and all the problems she's had lately. I am quite unsure if it is going to work-out, but we'll give it a go, and if it doesn't, we'll bail. I have warned the camp co-ordinator that Sheena is very difficult at the moment. Volunteer Therapy Students are there to look after the babies and give us parents lots of time-out. They are going to give Sheena a person all to herself. I am telling them that she is like a collicy newborn - so they have been warned. I figure that we need the respite more than most at the moment.

She was better yesterday - 10 smiles. Today a lot more moaning, but still a little better. She has probably gotten over her gastro, so is able to feel a bit more comfortable in herself.

News from the the Neuro that we saw on Wednesday. He suggests that Sheena's development will take another 6 months at least before she gets back on track to what she was at 6 months. I try to look at it as just numbers, and she'll get there eventually. My mum likes to put it that we have an 8kg newborn, instead of a an 8 pound newborn.

Chubby Cheeks

I managed to head off the hairdresser today. I was desperately in need to a new do. As for the redhead in the family, Sheena is starting to get craddle cap again. Just a small thick patch of it, but I am theorising that its because she has completely gone off her solids for the moment. She had it at 5 months something shocking, but it cleared up as soon as I started her on solids.

Sheena is chubbing up nicely. Her meds are giving her a moon face. She already had a beautiful round face, so now it is just a lot rounder...

I spoke to my favorite Neuro of 'Team Sheena' about her blood pressure being up. At least he gave me a full explanation of what it meant, so I am more comfortable that we are not being remiss in doing nothing about it for now. He said that it is quite high, but you would be a lot more concerned if the lower number was significantly elevated. They'll do it again tomorrow.

Testing Times

Sheena's blood pressure is 122/62 - that is high for a baby. Anything over 110/60 is apparently high. The Home-Visit Nurse rang the Doc to report it, as that is the main reason she has a nurse come over, in her notes it tells them to call if it is above 110. The answering Doc just queried how Sheena was otherwise, that it sounded OK, and that she had to hurry on as she had a meeting to go to. Naturally I started to worry, as you do. Seems very odd that they send out a nurse every second day to check her BP specifically, then when it is high, then it is no-worries. Anyway, I paged Sheena's regular Neuro 3 times, and he still hasn't got back to us five hours later.

Otherwise, have discovered that Sheena is happier in the buggy, so I am back to doing lots of walks during the day like I did when she was a newborn. Very tiring times, because she woke up overnight at 1am, 4am and 5am.

Sleepover at Nan's House

Spent the day at Nan's house. Sheena was in her usual form, but we got through it. A nurse from the hospital came over as Sheena needs her blood pressure checked every 2 days. It was an adult size arm band, so she had no luck at all. She's coming over tomorrow with a Peadiatric blood pressure thingy. She didn't like the look of Sheena, and rang the Doc at the hospital, but he recommended that we just make sure she stays hydrated. I was very happy with that assessment. There is nothing more they can do for her in hospital, so we're all better off at home.

Well tomorrow I have an outing. Going to the Bike Show in town. I'll have to resist feeling jealous of all the people that have time to go on bike rides. I miss feeling fit. I might cycle in, and hubby can meet me there.

While we were in hospital last week, Sheena's cousin, Mark, came to see us. He was down from Newcastle for the school holidays. He is in the picture, back when Sheena was only about six months old. I think they look alike - especially with the same expression on their face. Anyway, mum was telling Mark about Sheena having DS, and what that meant. I don't know what he makes of it all, but I think he worries about Sheena a bit. While we were in in hospital he asked me, "Is Sheena always going to be sick?" I know that he doesn't have a judgemental bone in his body. His Uncle had Fredricks Attaxia and was in a wheelchair, so he's used to stuff like that. While we were in hospital there was a girl in a wheelchair with toys up on a pole, and all he said was, "Why does she have a bear up there?" I don't know if the wheelchair got a second thought.

Miss Convalesence

Sheena has had many nicknames in her short life, at the moment it is Miss Convalesence. As you can see she we've set up a mattress for her to relax on as she gets over her gastro and adjusts to her meds. She is either very upset, or very chilled-out. Here she is in one of her quiet moments. I don't think anyone would like to see her in an upset stage.

I am not exaggerating, but she wailed for 3 hours straight today. She did not sleep at all today. She desperately wanted sleep, but could not keep her eyes shut. Poor thing. Luckily for me, my mum is helping me at the moment. We just try to keep each other calm and try lots of things to make Sheena comfortable. Today as you can imagine nothing was working. Eventually I tried yet another comfort feed and then lots of patting. She calmed down, but still no sleep. I took her for a walk and she was happy enough with that too.

Same-Same

Same-same news. Sheena was in hospital again for the past four nights. She was admitted with her gastro, but put in neurological ward due to her infantile spasms. She was dehydrated and not able to take in her meds, so she got all of that intravenously.

Now our Sheena is getting chubby. Really chubby. The kind of chubby that makes putting an IV in near impossible. First the resident tried twice, then the register tried four times, then someone from Intensive Care was going to give it a go, but there was a miss-communication (otherwise known as a stuff up), and she was sent to pre-op and given a General Anestetic so an anestetist did it while she was under gas. Two more pricks later, and she finally had her IV in.

Sheena can scream. She was so distressed, and all the procedures were horrible for her. I was there for the 6 attempts at an IV, an SPA (needle in the tummy, which also didn't work), a catheter, 2 blood tests, going in and out of the gas, having a feeding tube in and the million of other things that they do in hospital that babies don't understand. Even taking her temperature during the 4 hourly obs made her cry.

Anyway, she recovered from her gastro after having a lot of gastrolite through the feeding tube. Unfortuntately, during her stay we still noticed several spasms, so they've increased her IS meds to a ridiculously high dose. Her whole brain is working differently, and she is going through a stage of adjustment. Her whole reality is changing as her cerebal gets less irritated. She is really still, like a newborn when she is settled, and she's completely out of control when she wants food or a nappy change or whatever, there is no middle ground. I've set up a bed for her in the living room so that she can lie with us, but she is not really with us. Just wants to lie in peace, or get a cuddle and a massage. She looks miserable most of the time, but it is possible that she's just confused with what is happening. As the days went by in hospital, the Doc's looked more and more somber as they realised how bad Sheena was. She has screaming episodes like a crack-addicted baby, and then really out-of-it times.

It is another wait and see stage, and hopefully she'll adjust. While she is on these meds for another week or two, we have a nurse do a home visit every second day to check her blood pressure. I check her for diabetes everyday using a cotton wool in her nappy and then a dipstick. Thank god I suspended work.

She is now off her solids completely, but still wants milk. Her weight is staying the same at 8.3kg, but she is swollen with fluid rentention - hence miss chubba. She still looks remarkably cute, and when someone else is holding her, I love seeing how beautiful she is from a distance, or from a different angle.

Sheena's Latest EEG

We had some promising results. We made yet another trip into the Children's for Sheena to have another EEG six days after she commenced Pred-mix. Her EEG patterning has completely changed. Before it was very disorganised with waves flowing all over the place, and frequent nasty spikes. Now it is mainly organised with neat rows of normal patterning. Don't I sound like a Neurological Expert these days? I'm getting the lingo down-pat. She still had 2 spasms during the 25 minute test where there was a big spike on the monitor, and as I was holding her, I could clearly feel her jump. However they were isolated spasms, and not a cluster of seizures. The doctors were not expecting a completely clean EEG yet, however her neurologist was extreamely excited by the result, and he burst into the room delighted to say that we've had a great breakthrough.

So we are finally having progress. It will be a lot easier making her guzzle down all her meds knowing that it is actually working. Mornings are horrible. I get so frustrated and angry that we have to go through this ordeal everyday. It is so all-consuming and feels like Groundhog Day. Hopefully this is short-term and we will see some improvement in her soon, especially now that her EEG is looking considerably better.

She is however along with everything else, really sick with Gastro. We're trying to keep her hydrated, but she's looking pretty poor at the moment.

More Bibs for Bub

I was the one sorry for myself today, because I was sick with Gastro. Not too bad, just really tired, queazy all day, and off my food. 3 day time naps, as well as going to bed at 7.30 last night. One way to loose some weight.

Sheena had lovely bright eyes today, and was looking more alert, although still cranky. She is so chucky at the moment - I am going to have to buy about 20 more bibs, as they only last 10 minutes. She's still having wet nappies, so it isn't panic stations yet.

I'm feeling a lot more relaxed without work on my mind, so that is great. I just feel a lot less rushed with everything. Not any big deal being in bed sick for most of the day when there is no work to go to.

Here is Sheena enjoying her solids. She ate a lot more than I did today.

Work will wait.

Sheena had a terrible day today. I went to my parents house for some company (and help). She was OK until around noon, then had a balling her eyes out session that lasted until 3pm. A panadol and an emema in between, but exhaustion finally go the better of her. Not a lot of fun. She possibly has gastro which I had mildly yesterday, and Sheena doesn't seem to get things very mildly. It was one of those cases where you debate about calling the Dr, but as I had my mum around, we decided to wait until she fell asleep. If she wakes up the same, I will have to reassess.

The big news of the day is that I have suspended my return to work. I rang my boss and explained Sheena's medical issues and he completely understood. I'd kind of gone back earlier than arranged to work on a project, but Sheena is too unwell at the moment for me to concentrate and do a good job in the office. We also have so many appointments that it is too much to juggle. He is flexible about when I return to work before my year's maternity is up.

Impressive Little Me

After a few entries of Sheena's troubles, I will try to go through some impressive things about bubba.

- Eating, Eating, Eating. Sheena loves her solids, and has only ever rejected egg. I actually blame myself for that, as I basically boiled it and tried to spoon feed her the yolk. Sheena perfers more gourmet food than that poor attempt at baby food.
- Sheena can now swap from breast to bottle in a flash. She is very impressive, and is now downing very-diluted pear and prune juice. She breastfed from day dot, for which I am very proud.
- Holding her own spoon and bringing it to her mouth since six months.
- Rolling at 16 days old.
- Having extreamely good neck control, especially when doing pull to sit. All the Doctors are impressed with that one.
- Loving going to bed in the evenings. In the day time she likes our bed for variety. That is better because her nursery is right above the washing machine in the laundry downstairs, so I can't put it on if she's in bed as it wakes her up (only sussed that out a little while ago - whoops!).
- Her healthy red hair.
- Lots of other stuff.

Here is Sheena on her latest play-mat. We are working on getting more strength in her legs. She is able to take a lot more weight in her feet now - very quick development from only a week ago.

I can't hold her by the fingertips and try to get her to 'walk', because her wrists are shoulders are so lax that I might break something.

Day 3

Not much progress yet, other than a very sick baby. I liken her meds to Chemotherapy, in the sense that everything we're putting in her has terrible side effects, but the alternative of having ongoing spasms is even worse. One of the more minor side effects is reflux. Although no long term implications, it is making her scream in pain.

At least we are at home now, so that Sheena can go for trips out in the buggy. Actually vitamin D is important, so we have to take her out for 15 minutes twice a day. That one things is really easy to manage, as she's outside for about 90 minutes a day at least.

Mornings are so hectic. I used to love mornings, when I would wake up, go for a run or to the gym, then head to work. No stress. Now I have to get up, give her Zantac to help her stop vomitting up her feed. Give her a breast feed. Then its off to the kitchen to start preparing all of medication that we are giving her. The worst is, when I give her anticonvulsants, then she spits them right back up. Its really stressful.

Here is chubby bubby in hospital with all her EEG monitoring equipment. That was the cot that I slept in with her one night, because she needed to be in sight of the video camera, and she wouldn't settle.

Home from Hospital

Back home after 3 nights in hospital with Sheena. She is a very sick little girl, and is going to be in the wars until her infantile spasms are under control.

She was admitted, because she looked like she was in a coma, and was non-responsive. She was really out of it, and she also had a positive UTI from a urine test. She was in the neurology ward, and they did 24 hours of video EEG monitoring. Poor Sheena looked like she'd had brain surgery, because they had to bandage her head to keep all the monitoring equipment in place.

The results are pretty bad really. I had to hit a button whenever I thought she was having a seizure, and then afterwards the scientist would match the video with the EEG report to see if there was epileptic activity. The good news is that her (very frequent) leg raising and arm flapping are not spasms. However her hiccup episodes are definitely infantile spasms. She had 6 clusters of them over 24 hours. Her brain is basically sick with hypsarrhythmia, and she is now on pred-mix to try and get it under control.

Hospital is an odd place these days. There are so many layers of professionals that it is unbelievable. The nursing staff are basically drug administrators, and there was very little support from them for the children's basic care - that is the parents job. Sheena had 8 doctors supporting her on the ward. For Neurology (from top to bottom) she had her Consultant, the on-duty Ward Consultant, then Fellow, then Registrar, then Resident. I liked the Registrar the best - he was very thorough in explaining things, and very empathetic of how full-on all this is to work through. She also had 2 cardiologists and her Peadiatritian. It was a very busy 3 days getting results and plans from all these Doctors.

Pred-mix has a long list of serious side-effects, however the ongoing hypsarrhythmia is worse. She is going to have reflux, she is going to be hungry, she is going to have fluid retention, and get really bloated. More seriously, I need to test her daily for glucose, closely watch her for any signs of infection, as her body's stress receptors will not be working properly and won't fight off infections properly. They had to get the Cardiologists involved to check that her heart was stable for commence the new meds, and her Pead to give the all clear that there was no kidney infection due to her UTI's.

It was hard to sleep - especially the 24 hours when Sheena was getting taped. We couldn't even dim the lights and she had to stay in her cot so that they could capture her on tape. In the middle of the night she wouldn't settle, so I ended up in the cot with her at 2am in the morning, after stroking her head for 2 hours with no success. Thankfully the hospital cots are on the large size - and sure enough it worked, and we both fell asleep exhausted. The following day, I had a sleeping tablet and slept for 2 hours in the arvo while my mum looked after Sheena.

I had the week off work naturally, and for the next month while Sheena is on Pred-mix I don't think I'll be able to. It depends on how she reacts. So far she has been really chucky. Constantly spitting up her milk and solids. Crying a lot and looking very miserable. I remember when I was pregnant reading theories on how to raise children - like 'attachment parenting', so that you could best ensure that your kids would grow up with good self esteem. Well, with all the crap that Sheena has gone through in her eight months, she'd think that no one loves her.

She has a box full of medication to take. I remember when she was 6 months old, and on nothing but breast milk. I used to be scared to give her a panadol. I still am actually - somehow still worried that I'll become a panadol mum!

Vitamins are good for you!

Trying to navigate our way through the whole medical profession at the moment. I spoke to a Dr at the hospital who was calling me back to talk about Sheena's medication and dosage.

To cut a very long story short, he agreed with me that we should put her on Vitamin B6. What the??? I had to call them to tell them that I think she needs this vitamin that is on every Google search for Infantile Spasms. Do Dr's expect parents to have access to the internet these days? How frustrating. For some kids, B6 is all they need to control the seizures. She should have been on this stuff weeks ago, especially when there are no side effects...

I know Dr's are doing their best, but still. If she had a broken leg, they'd use everything at their disposal to get it fixed, why not this?

Sheena Stats

Tonight I have started increasing Sheena's medication. She is definitely still having several episodes a day. Today she was not in good form at all. The only time we got a smile out of her was when we rolled her around in a sheet. She is an utter thrill-seeker. Loves the movement. Her seizures now are like hicups, but she isn't hicupping, and there is no noise. Very scary to watch. She looks scared and shocked with each one. She might have 15 'hicups' in a cluster, and she had 4 clusters today. No wonder she is miserable.

She has sooooo many clothes, I don't know where to store them. Friends and family were very generous when she was born - I think it is a girl thing. She is size 00 now. At least we got heaps of use out of her 000 clothes. I don't know if it is done everywhere, but in Australia, they track baby's growth using percentiles. 50% is average, but the data is apparently based on USA bottle-fed babies, so it is not accurate for breastfed bubs. This is Sheena:

Weight 38%, Head circumference, 38%, height 7%. I love chubby babies, so we're doing well there. Not sure where she is on the DS charts, let me check....
Weight 100% (off the charts), head circ 80% and height; 50%

A bit odd the whole notion of having special charts for DS babies. It is like, immediately from birth, they are being treated differently as far as basic expectations are concerned. Considering that Sheena sits quite well on the usual charts, I am happy to stick with them.

I am finally going to get more pictures of Sheena printed out. Here is one of her today when she fell asleep while lying across my knee. To cute!

Rockin' and Rolling

Now that I am back at work, the days are getting away from me, and I have less time to enter about Sheena's day in Sheena Time. She is having a good day today. The grizzle is gone - I wonder if her brainwaves are stabilizing. That would be the best outcome, but I don't think we are anywhere near the all-clear yet. She had a great day on Tuesday, then a shocker for the rest of the week, and now its Saturday and she's good again.

I am not used to it when she isn't grumpy. It is so nice, just to plonk her somewhere, and she's happy enough to hang out for a while. Sheena rolled twice tonight, as well as once earlier in the day. It is a good sign that she is getting interested in things again. We were so proud of her when she rolled at 16 days old, then several times up until 28 days. She had a rest for a while, only to roll again at 5 months. Now she is 8 months, she is back to it. She had a bath tonight, and was trying to squirm around to look behind her.

She spent the whole day inside today. Apart from when she was in hospital, that was the first time ever. Tomorrow, I'll have to take her for a walk. Actually - she did sit on the balcony for a while in her high chair while we were having lunch.

Loving Hands

Sheena had a shocker of a morning, but then slowly got better as the day went on. It is heartbreaking seeing her having little spasms, and very grizzly, and you literally can't do anything, other than hope that her meds work.

We had to go to the accountant in town, so Sheena's Nan looked after her in the afternoon. She had periods of lovely smiles and happiness - which we reall. Here she is getting lots of attention from her Pop.

West Syndrome Too

The Neurologist appointment was pretty despressing. Sheena was asleep when we met the Dr, but woke up about 10 minutes into the appointment. Usually with Infantile Spasms, they occur more so after waking up, and sure enough, he observed several episodes while she was on the examining table. Her seizures are more like half a startle reflex - really brief, and unless you are specifically looking for them, I don't think you'd pick it up. I think we've often thought it was excitement and wriggling. He thinks that these movements are the issue, but is less convinced about the eye blinking and lip smacking thing (although we didn't have the video of that to show him - need to send one into him).

Infantile Spasms is also known as West Syndrome. It is a combination of 3 factors, the spasms, developmental delay or regression and hypsarithmia showing on an EEG. While the hypsarithmia doesn't cause her pain (as such), he said that it seems to annoy kids, which is why she's been so irritable. I liken it to restless legs that you can't relax during a movie or in the car. He also thought that she might be having aura, a sensation that something is going to happen, which would also explain some of the grizzling. The worst news that he said, and I want to reject, is that kids with West and Down Syndrome, or even Down-West Syndrome (which rolls off the tongue very well) are more more likely to be on the lower end of the spectrum as far as the DS range goes. Didn't look like that yesterday, so I am still denying that will be the case with Sheena.

So anyway, now that a Dr has offically seen a cluster of her seizures, we also know what to look for, and we are to track it in a diary. He was happy to boost the medication significantly, and told us that we could dilute the sachet in 10ml rather than 100, which is much easier to give her twice a day. She's to have another EEG in 2 weeks, and we're to up the dosage again in one week if we are still seeing spasms. Pretty bad huh?

I am reluctant to just have shocking news on this blog, because I much prefer good news, so the good news is that Sheena had a nice morning with her dad while I was at work. They went to a DS coffee group where there were 4 other bubbas under 14 months. Another guy at the group is a house-husband so Mark wasn't the only bloke there. The coffee group is never too heavy, and rarely has a specific topic to address, so it is more of a chance to get together with other parents on a regular basis.

I am going to try to get some sleep now. Its 3.30 a.m. and I have to work tomorrow. I am a bit freaked out with all this stuff at the moment.

She's back

Little Sheena seems to be making a return. Today, she was very active, and much more engaged. I was playing with her for ages today. I've missed her so much. I desperately hope it lasts. We see her neurologist tomorrow. I had intended to call the epilepsy foundation beforehand to see if they had any suggestions on what to quiz him about, but didn't manage that. I still saw about 6 blinking fits this morning, but her improvement was amazing.

After recent entries, my husband has accused me of taking over Sheena's blog page with boring details of yours truely. Sheena isn't selfish, so is happy to share the space with me. My kitchen reno is 99% finished. The stupid splashback people stuffed up the measurement behind the microwave, so that will take another 2 weeks - but other than that, it is finished. I will finally have my all white shiny kitchen. I will post photos when it's finished. Think "100 Best Kitchens of 2006", and my new kitchen is up there. It is a very classic design, so it would probably also be in "100 Best Kitchens 1990" (not the 70's though).

Here is Sheena in her fancy highchair (ebay purchase #1). We've started to pop her in the highchair while we eat dinner. She is usually very tired, but its good wind-down time before bed. As yet, we generally don't feed her in the highchair. We still use her TF therapy chair, because she is fully supported in it, and she can concentrate on eating, rather than just trying to stay upright. Speaking of that, a presenter at the EI gala dinner I went to the other night, did a good demonstration. She had a volunteer from the audience stand on a wobble board, and they had to try to balance themselves still, and then do a challenging puzzle at the same time. Very hard for a 40 year old guy, let alone a baby.

Delightful and Demanding

Here is Sheena looking delightful.

She was pretty good today. Always better in the evenings. Lot of smiles and happy play after her evening feed. Down to 3 milk feeds today. That is a great accomplishment. Just as soon as they get in a routine, it is time to change it. Next month, she'll have to start having her solids before her milk. She won't like that in the mornings. Before I had Sheena, I read a book that emphasised the sleep, feed, play routine. I think I took that to the extreame, because Sheena DEMANDS a feed first thing in the morning. If I put her on the change table before offering her milk, she is not a happy little girl. Her current sleep thing at the moment is to go to sleep at 6.30 at night, but then she wakes up at 5am, and calls us for about an hour, before we relent and bring her to our bed. We'd like her to go down at 7pm and wake up at 6am, but it is not the worst. We're early birds anyway.

Kooky Visitors

We had a lovely visit today. Just hanging out in the living room, doing the usual - preparing some juice for Sheena, and a lovely Kookaburra arrived on our patio. It was extreamely confident, and was looking at us as if to say, "I see that you see me, and aren't I stunning". As I was running around taking about 100 photos, ANOTHER Kookaburra pirched itself alongside Kooky #1. I am sure there was nesting going on, because they kept on looking up at our eaves. A magpie flew by, and one of them chased it off so we were left with one again. The remaining one (who I think was the girl, because it had pretty blue feathers and was fluffier) then flew to a hole in one of the trees at the back of our house. It had a quick look, then sat on a nearby branch. I really hope we have a nest either on our roof, or in one of the trees. Watch this space for more wildlife updates! Koala's welcome, but no snakes allowed.

My Comfy Cot

Small one had a yucky day yesterday. She was getting up to her old tricks of being grizzly. I knew it from the moment I got her up that it was going to be one of those days. With all the things that she has going on at the moment, it is hard to know what the cause is. Anyway, we ended up deciding that she needed a poo. Whoo-hoo.

She had another physiotheraphy session. Her therapist thinks that she is still progressing well as far as general muscle tone is concerned. She does need to continue to put more weight on her arms, and in her knees/thighs. We've got a couple possies that we need to do more often with that in mind - namely squating and supported tummy time. She will get there.



Her therapist also suggested to use one toy at a time, so that she doesn't get too confused and bombarded with stimulation. We'd been doing that a while ago, but had started to let that slip, so we'll try and do it again. All very good suggestions. She still sees Sheena fortnightly in our home - the service is 100% funded by the government, which is fantastic. On top of this, she has speech and OT - all supplied through the same service.

Sheena went to Nan and Pop's house last night, while I went to a gala dinner for Biala - where we will be sending Sheena next year for her EI. She had her first night in the new cot that they prepared for her. Very pink as you can see.

Romper Stomper

Another great day in the office. Even better, when I came home to a happy bubba. My mum had been given some baby clothes, so I came home to Sheena looking gorgeous in yet another romper to add to her collection.

She is slowly getting more engaged, which is very promising as far as the treatment working for her spasms. She is certainly needing more sleep during the day, and she is not as hungry as she was before - but both of those things are fine by me. Unfortunately I still saw about 3 episodes today where she was doing her blinking/lip smacking thing. They are not obviously a seizure, and I sometimes think it is just her expression when she is seeking her dummy, but it lasts a bit too long for that. Infantile Spasms are normally very obvious - like a sudden bow at the waist, or head-nod. They are also called Salaam Seizures, because they look like prayer. Sheena has never done that, so her Pead thought perhaps she might not have it very bad. We have an appointment with a Neurologist, so he might be able to give us more insight as far as that is concerned.
Here is Sheena in her corner chair, working those abs. Isn't she sitting up lovely and straight - no propping there.

Work Wise

Back to work today. It went very well. Sheena's Nan made it very easy, because she came to look after Sheena at our house. My boss made it easy too, because I am working part time (15 hrs a week) - but I can choose to work from home, or in the office, AND I can work when it suits. I am very lucky, and I don't take it for granted - not many employers are that good. As best I can, I will try to keep it pretty structured and work specific days, so that I have a good separation between work and home-life.

I wasn't very enthusiastic before I left for the office, but once I was there, it felt great to be in my own space. Work was good, and I came home completely refreshed. It has been 8 months since I had more than 3 hours away from Sheena.

Sheena was excellent with her bottles, and she also had good naps, so her Nan wasn't too exhausted by the end of the day. This is a photo of Sheena and her Nan when she was 1 day old.

The best thing of all about today, was that there were absolutely no dramas to speak of. It doesn't make for the most interesting blog post, but I enjoyed it immensely.

Daddy's Day

Fathers day in Oz today. Sheena got her dad a mug with a digital photo of herself looking rather sweet. She had text put on the mug saying, "Dear Daddy, Happy Father's Day. Love Sheena." Isn't she amazingly resourceful for 7 months. I've attached the card that she had made for him.

I think Sheena is weaning. Oh no!!! I was planning on breastfeeding her until she was at least one... She guzzled down a full bottle tonight as she wasn't interested in me... Tomorrow we shall see.

I don't think the Peadiatrition has prescribed a high enough dosage of meds for Sheena. She is still having several blinking/lip smacking episodes a day, and she's still grizzling all day long. I looked on the net, and she is definitely getting a lot less than the recommended initial doseage, so I will be on the phone first thing tomorrow to the Dr to get that sussed out for sure.

Market Day

Sheena is on day 3 of starting some very serious drugs to manage her Infantile Spasms. She is on a low dosage, and it will build up over 5 weeks. Today, she refused her 11.30 breastfeed (VERY odd for Sheena who usually loves it), and then she vomitted up her 3pm feed. She then went to sleep at 4pm and has not got up.
We had to sneak into her room to give her her evening dose (which we did after we'd had dinner so we could enjoy a lovely relaxed dinner). I syringed in her medication, and she quietly gulped it down. She did wake up, but I tucked her back into bed, and I am letting her sleep for as long as she needs to. She hasn't made a squeak since. Not sure if she has a bug lurking, or if the new meds have mucked her up.

I have really been caught off-guard now that she has a 'dual diagnosis' of DS and IS. I was feeling pretty in control with the whole DS thing, (apart from her irritability which really had nothing to do with DS). Now that she has another issue with a very real likelihood of serious outcomes, I am trying to absorb what it all entails.

Anyway, life goes on. We went to St Andrews Market, and hung out with the hippies. Bought some lovely organic vegies, and a tie-die bodysuit for Sheena. I will have to post a picture of it later on.

My cycling routine is getting heaps better, and I've cycled 4 times this week. I've also gone running 3 times, and swam as well. It's like old times. It helps that my husband is off work at the moment.

What is in a name

I thought I would copy a few other bloggers, and explain why I called this blog; Sheena Time.

Sheena started her EI physiotherapy when she was just over one month old. Naturally she didn't have much stamina, but we were extreamely motivated, and would give her lots of tummy time, or ball-time whenever there was a window of oportunity. Whenever Sheena started to get tired, we'd say that she needed; "Sheena-Free Time". In other words, leave the poor bubba alone to chill out for a while. From that, came the title of Sheena Time.