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.