Chatty Sheena.

Sheena has started consonants. It was Nan Nan Nan Nan (Aussie accent) this morning while she was in bed trying to get our attention. Then later in the morning it was Da Da da Da. As usual, Mum hasn't been uttered yet, but it did sound like it when she was saying Nan with rings in her mouth. I get the most smiles, so I am not complaining.

She is very funny at the moment with her chatting. You can tell when she is waiting to say something, and then when you give her a chance to speak, she goes on and on and on and on. She isn't interested in just saying Ga, or GaGaGa, she says Gaaaahhhhaaaaahhhgggaaaooooohohhhhhhhhhhoohhh, for 20 or 30 seconds before she has got it off her chest. She spoke to her Nan and Pop at great length today. They had not seen her for a few days, so there was a lot to catch up on.

Here is Sheena in her Canadian Skort (skirt and shorts in one). One of her aunties in Canada gave it to her. Check out those rubber-band arms.

Still Hot

We are still stuck in side from the heat. We even moved downstairs for the day, because it is a lot colder down in the rumpus.

We received a parcel from hubby's mum in Ireland. She sent two gorgeous smocked Christmas dresses for Sheena. One green, and one red. Isn't it just gorgeous - all the detail, and even the little sleeves are shaped like a fairy-dress.

I saw the poor baby-possum trying to get comfortable in the ensuite window sill this morning. The window wasn't open, but he was still trying. Must not have been much good, because he'd moved on the next time I went in there.

No Possums, Spiders Now

Sheena was stuck in the house all day. It was 37'C today, with lots of smoke in the air from distant bushfires, so not a good day for a baby to be out. We stayed in too, apart from me doing a grocery shop and an early morning bike-ride (despite the smoke).

The possum has left. A good thing too, because we needed to close the ensuite window for the air-conditioner to work. Never boring at our house, there is also a red-back spider living on our front fence. We were doing some weeding, and I came across this deadly little spider, and her egg-sac of more deadly baby-spiders ready to wreak havoc.

So, back to Sheena. She was great in the bath tonight. She's always liked a bath, but just having one was usually exciting enough for her. Now she is getting a lot more interactive, and laughs when we squirt her with a bath-toy. She also seemed to like being dunked for a change. I had her sitting facing me, and I was trying to get her to balance herself. I was giving her kisses, and she leaned in for more, and put her hands up against me to stop her face falling into the water. This is great, because we haven't seen this reflex before, and its needed for when she starts to sit on her own to avoid whacking her face into the floor.

Here is a photo of Sheena about a week ago while she was going through a "My hands amazing" stage.

Possum Patrol

We've got a baby possum that is living in our ensuite window sill. It is really freaky to be brushing your teeth, and this little possum is staring at you - half looking terrified and half looking friendly. I am generally scared of wild animals, so I am always assessing if the little thing is going to claw its way into the bathroom, and start scratching me all over. It is probably wondering the same thing. So we have this I am scared of you, and you are scared of me thing going on. I wonder if it will be there tomorrow morning.

Sheena had a physiotherapy appointment today. She worked very hard for an hour, then had a drink and a 2 hour nap. Poor bubba, its like doing a triathlon for a 11 month old. Her physio is keen for Sheena have lots of over-the-top activities to get her going. I will give it a go, but I think Sheena is moving ahead leaps and bounds all by herself at the moment anyway. Sheena has to do so many exercises: kneeling, squating, rolling over a cylinder thing - it is really intense. It is actually very hard for me to support her while she is doing it, so my abs get a work out at the same time. She is over 9kg now, so she is heavy to hold while trying to make her use her own muscles to move or bear weight. Our project of the week is to get Sheena's lower abs stronger, so we'll keep this in mind whenever we carry her or position her.

Sheena's First Report Card

Here is Sheena with Cam from her play group. Aren't they the cutest.

Two days in a row, Sheena has decided to barely sleep in the day. Hmmmm. Not happy with this little trend, although it has not been her fault. Yesterday she was dozing off, and she got rudely awoken to have some Chiropractic treatment. Today, she was in Childcare for the day, and she is probably struggling with the noisy environment. Despite not having good long naps, she has been a delight. She has been really smiley, and very enthusiastic to chat, play and wriggle.



At Childcare, they write a little summary of the baby's day. Here is what they reported about Sheena:

"Sheena has been very alert today with good strong movements whilst on her tummy. Sheena enjoyed one of the older children interacting with her. Sheena enjoyed playing with the rattles and has had a good palmer grasp of these. Sheena has also been very vocal today and has responded well to carers."

I was assured that her being very vocal was not been her being upset, but rather her very chatty nature, where she likes to ahhhhhgggoo back to anyone who pays her the slightest bit of attention.

She was so excited and alert when we got home after picking her up from the centre. I was expecting her to be really warn-out from such a long day, but she was so stimulated and responding to everything with great enthusiasm. This wasn't a 20 minute patch, but it went on for almost 2 hours. She only gave in after having a bath and then a cuddle.

Jo's Theories

One of my theories about the 20 second seizures that Sheena developed while she was on her Prednisolone treatment, was that they were caused from severe calcium deficiency - or hypocalcemia. Other than the seizures, the most prominent symptom was her dreadful grimacing and eye fluttering.

Today, I started to Google for some fresh blogs to read - particularly other bloggers that have kids with IS and DS (none found so far - but still looking). While searching, I found an article on 'Calcium and Myoclonic Seizures'. http://www.researchinghealth.com/?p=3174 which also theorises that calcium levels can have an influence on seizures - particular seizures in kids that have DS. The main reason that I am VERY interested in this still, is not to prove that my hypocalcemia theory was right, but rather, it might mean that Sheena doesn't have to take Epilim to control seizures. She might have only been having the seizures because of the Pred. When I told the Neuro about my calcium theory, he said 'unlikely', but I plan to push the topic a lot more in our next appointment with him.

Other than my latest and greatest medical theories, Sheena and I hosted Local Mother's Group today. I call my 'Mother's Group', my 'Local Mother's Group' to my family to avoid confusion with the 'Down Syndrome Coffee Group'. I wanted to avoid having to say my 'Normal Mother's Group', for obvious reasons. Recently I got completely confused, and called my DS Coffee Group, my 'Local DS Coffee Group'. Anyway, it was boiling hot, so we ramped up the aircon, and stayed inside the house; talking, eating chocolate-cake and icecream. A typical day in the life of a new mum...??? The babies all had a ball playing with the Christmas tree, and Sheena's toys got a work-out too. Sheena got kissed, hit on the head, and surrounded by the boys (not all at the same time). All the babies loved it.

In Amongst It

Sheena had a very exciting day yesterday. She seems to have really responded to all the new toys we bought her, and is a lot more excited about things. It helps of course that she is on her 'happy pills' (antibiotics) and is feeling good.

I was hopeless again, and opened more of Sheena's Christmas presents, because I couldn't wait. Here she is in amongst her new balls playing catch. I didn't get a good photo of her looking really excited, but here she is looking shocked instead.

I had to go to Noah's Arc toy library to borrow another corner chair for Sheena so she can have one Childcare. They found one that fitted her, but it is really old and ugly (really ugly), so I asked them if I could paint it, and jazz it up a bit. It wouldn't be right for her to be sitting in such an ugly chair. The therapist was fine with that, and actually said, that she couldn't agree with me more, and that she hated having to lend out such old equipment - but as usual, its a funding thing.

Can't wait for Christmas

Sheena is feeling good today. Unfortunately it took antibiotics again to get her there. She's been sick since Tuesday with a cold/infection, so she's been miserable and running temperatures on and off. I went to the Doctor yesterday as she was 38.3 and sleeping most of the day, off her solids etc etc.

She missed childcare on Thursday, which is a big shame. Childcare have already organised an extra staff member in the baby's room for when Sheena goes. It is government funded, and its been approved for Sheena very quickly. One of our friends took 6 months to secure an extra staff member for her daughter. As usual it makes such a difference depending on who is coordinating it, and we lucked in this time. After my friend's experience, I was hassling them a lot about it, so that probably pushed them on a lot. Most of her issues are small at the moment, but add them all up, and she is a lot more work than most 10 month olds. She's only taking puree, slow with her bottle, needs early intervention activities. All this stuff takes more time - so I am feeling happier that she's going to be well looked after while in the centre.

The upside is that now Sheena is back on her happy pills (i.e. antibiotics), she is interested in life again. I went to Windmill's today, and got Sheena a few things for Christmas. Their toys are fantastic, so I couldn't wait for Christmas, and Sheena had a great time playing with them in her corner chair.

Sheena's Daddy gets smiles very easily as you can see.

Baby's Big Blue Eyes

Sheena had her eyes tested yesterday. She seems to be long sighted, but it should not effect her much until she is school ages, then she will probably need glasses. She fell into a deep sleep in the car on the way to the check-up. She didn't wake up while the intern did the initial exam, which included putting drops in her eyes to make the pupils enlarge.

She eventually woke up while I was cuddling her in the waiting room, then the main doctor checked her out.

Party Time

We took Sheena to two birthday parties today. For a 3rd birthday in the morning and a 1st birthday in the afternoon. Sheena was fine for the whole day - we left at 9.30 and didn't get home until 4, so it was a big day out for her.

One of our friends who has been amazingly supportive of us through the last couple of months was so excited to see Sheena smile. Her 2 year old daughter, who is very fond of Sheena, was also happy saying, "Sheena not sick!"

Saturday's Saga

Yesterday, Sheena was absolutely fine. She gave her Nan a series of smiles during her bedtime bottle. However, she woke up about 5 times overnight, crying and very difficult to settle. Hubby was not feeling good about it at about 3am, and was thinking we should get someone to look at her, but I thought it might just be a bad night. However, in the morning she looked terrible. Crying if not on her side and being comforted, a stuffed up nose, watery, puffy eyes and a temperature of 38.2, then 38.7, then by the time we got her to the hospital she was 39.1. Her first fever :( The obvious thing to check for was a UTI, so she had a cathetar, that was clear (so far, but they still have to culture it over a couple of days). They gave her some panadol, and she fell asleep. She woke up looking very lethargic, unresponsive and just lying on her side sucking her do-do. But then, as quickly as it had come, she bounced back. She started to do little wiggles, and happy faces. Not quite happy baby dances, but near enough. When we left, her temperature was down to 37. I was happy to have that down, as she's more prone to having febrile-convulsions. Hubby had a cold earlier in the week, so the Doc thought it was probably just a viral infection.

This was all after a night out for Hubby and I. We got home at midnight, so we weren't really up for the overnight shift. At least she's doing OK for the moment.

New Bub on the Block

Sheena had her first day in Childcare (7.30am - 1pm). After orientation last week, I'd been feeling very apprehensive about it. I didn't sleep the best last night thinking about it - however it turned out fine. The room leader was there this week, and she was wanted to know all the details about Sheena - like her sleep routine, feeding habits, comfort needs, playtime, and all that baby stuff. She was really thorough so it made me feel secure that Sheena would be well cared for. She had previously worked in a special-needs kindergarden in England for a year, and has experience in caring for children with DS. That was very reassuring for us.

I'd written out all the stuff (to help me articulate it as much anything), and I stressed the need for Sheena to have lots of tummy time, and lots of stimulation. I was a bit worried that she'd be put to bed at every opportunity, but I don't think that happened.

She was a champ, and didn't need her do-do except for when she went to sleep. I was in shock when they told me that. I thought she'd be very whingy. She ate solids well, but only had half a bottle of formula, and a few sips of juice.

Down the track, I think we'll have to ensure that they maintain the rage with the Early Intervention. She is probably a bit of a novelity there at the moment, being the new bub on the block, but I don't want her to become part of the furniture (so to speak) in a few months time. We'll have to ensure that they stay motivated in bringing Sheena's development along. Besides all that, I think she'll benefit immensely from being with other kids.

Not there yet.

While Sheena was OK today, she did have a total of 3 spasms. She was still smiling, rolling etc, so she's not suffering as much, but... she is still struggling with seizure control. I'd been starting to get pretty optimistic about things, and was wondering last night if we should reduce her dose slightly, but that thought was fleeting when she had a spasm early in the morning, then two more early afternoon.

It is very difficult trying to assess what might have bought them back. It could be so many things... Some kids go on a ketogenic diet (no-carb, high-fat diet) and it helps control epilepsy. Sheena's seizures seemed to stop when she went off everything except breastmilk (thanks to her throat infection). So that fits in with the ketogenic diet basics. She had some whey-formula yesterday, so it could be that. She'd been on antibiotics, so I even wonder if that stopped the spasms. Stressful+++

Go Sheena!

Sheena rolled today - back to tummy. Go Sheena!

We went to a Peadiatric Chiropractor yesterday. Most people hate waiting at the Doctor's but by this stage, I am completely over it. I arrived on time, and seriously, there were 3 babies in the waiting room. I asked the receptionist how long it would be, and she said that he's running behind and all these babies ahead of you. I don't think I hid my frustration well. Why should a Chiropractor be able to load up patients - it is not like he had an emergency adjustment earlier in the day that put him behind.

Anyway, he suggested that her lower back was out, and she had a stiff neck. The lower back might be limiting her bowel movements, so it will be good to get that sorted out. Worse, though, he thinks we need to address alergy issues. He suggests that we cut out milk, soy, eggs and wheat from Sheena's diet. Her diet, and mine, because of the breastfeeding. This is simply not going to work. I love all food, not just meat, fruit and vegetables. Furthermore, Sheena loves breastfeeding, so she wouldn't be happy if I switched her to goats-milk formula, and said good luck to you bubba. So, we will just sit on that advice for the time-being.

Sheena and I finally made it to my local Mother's Group today. She was excellent - happily played on the floor, and had a nap on the couch for a while. Although Sheena's delays are more noticable now that the babies are 10 months old, given the huge issues that she's gone through recently, I think she is doing very well. The Neurologist had said a month ago that it would be another 6 months before she got back to how she was before her Infantile Spasms started, but I think we are already back to that point. Anything earlier than six months is a bonus.

Seven to Seven

Sheena made it through without any drama. She called out throughout the night about 5 or 6 times. Hubby and I alternated going into her room. We would just hold her hands and stroke her face and she would go back to sleep pretty quickly. What a relief. She was probably wondering all those weeks why we were picking her up out of her cot when she just wanted help turning over so she could go back to sleep.

Sheena is doing fantastic. Yesterday while she was in her corner chair, she convincingly played with toys. It seems that she needed a nudge. I'd tried to get her playing for ages, but she was too withdrawn, and the toys would just sit there within arms reach (and worst still she'd be miserable). She obviously found it fun this time, because later while I was taking her for a walk in her buggy, she reached out for her rings by herself, and played with them for an hour while we were out. This is really great for Sheena. She might finally build up some muscles in those rubber-band arms of hers. Now, when I put her anywhere she's keen to look and play with various toys. This should make Christmas Day more exciting.

Here are some pics of the bees nesting in the outside wall of our house - but no more.

Over Sheena Overnight

There is a reason why this one is yawning... Since Sheena went off solids a while ago this is what has started to happen:

Go to sleep very well at 7pm-ish
Sheena's wakes up at 2am & cries out
Dad goes and gets her
Sheena is plonked in bed with me while she frantically thrashes around until she is fed
Dad goes to the spare bed in the cold bedroom downstairs so that he can (allegedly) function at work the next day.
Sheena stays in bed with me taking up significantly more space than necessary until she then wakes up at 5am ready for overnight feed #2...

There was significant leeway when she was very sick, but now her health is improving somewhat (and she is back on solids) she is going to lose these midnight wake-up, be fed and cuddled privileges. I foresee some rather exhausting nights ahead, but better now than in a month's time.

Those wasps that were attacking us were attacked back today. They were actually bees. Pest control came out this morning. Feel a lot more relaxed at not hearing swarming everytime I walk into the lounge-room.

At request from Aunty Christy, here is a close-up of happy Sheena:

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.