Another one for the road

Little Sheena is having Infantile Spasms (IS). As far as epilepsy is concerned, this is not the type to have. However, if you have Infantile Spasms, you are better off if you have Down Syndrome.

Apparently babies with DS, sometimes respond better to treatment, and they also don't have severe outcomes from the condition than what is generally seen. That is not to say that this is a good news, however I am clinging to this hope.

Had a relapse of the horrible dread feeling that I had when Sheena was born with DS. That feeling of being sick in the stomach, walking around with shoulders slumped, feeling numb, angry, why me, how will we cope, etc etc. It is a lot to process, and I have zero knowledge of infantile spasms, other than what I've read on the internet. Generally it doesn't sound good.

She is on medication, and if it works, we should see an improvement in 1-2 weeks. She had great patches today, as well as very irritable ones. The seizures come in clusters, so that explains why she is on and off.

A quiet day

Getting prepared for my return to work next week. Sheena is now downing 1 bottle a day, and we'll increase that to 2 bottles when I start work. She does love breastfeeding, so I don't think she'll be in great form when I'm out of the house for 7 hours...

Thankfully, we had a quiet day today. Sheena was grizzling lots, but at least there were no appointments to work around.

Some answers

Some of Sheena's test results have come back, and unfortunately, they've found that she has epilepsy. We go back to see the Pead on Thursday.

I can only hope that she responds really well to anti-convulsant drugs. She has never had a grand-mal (as far as I know), but I have observed rapid blinking, along with slight lip-smacking at the same time. It is pretty subtle, and if I had not been looking for problems because of her irritability, I might not have thought anything of it. We will get a lot more information about the extent of her epilepsy when we see the Doc, but I expect that it can be blamed for her reduced engagement over the last couple of months, and possibly her irritability. I feel completely vindicated for persisting with the Doc's that there was something not right. I'd started to worry that I was being hyper-vigilant in looking for medical answers.

I think a diagnosis of epilepsy in isolation for a 7 month old baby would have been pretty full-on, but that, along with her DS is VERY full-on. It is like when we were told that she had heart defects when she was 6 days old. If our baby did not have DS, we would have been completely freaked out by the heart-defects, but they seemed small compared to the DS diagnosis. That was just us. I have met other parents in the same boat, and they thought the DS was nothing compared to the heart defects.

The Irony of It

Well, just after I mentioned how I thought people were staring at Sheena, I went and stared at a little girl with DS today. We were at the Childrens Hospital, and when we were leaving, we passed a family - their youngest had DS. I unintentionally stared. I am sure that the mum noticed, as she gave me a long-look back along with a gentle smile. Sheena was getting a cuddle from her Dad, so she would not have noticed her condition. I hope she didn't think I was out of line.

When I am out and I see other parents who are with their kids that have DS, I have not been bold enough (so far) to go up for a chat. I feel compelled to approach them, but at the same time, I don't want to catch them off-guard. I would not usually approach total strangers, so I am not sure if it is really appropriate. What are other people's view on that? I also don't really know what I'd talk about! The conversion might go,

Me: "Oh, I noticed your child has DS."
Stranger: "Yep, that is right."
Me: "He/She is really cute, my girl has DS too"
Stranger: "Really, there you go..."
Me: "Yeah, just happened to notice... ah..., so..., ah... is s/he in EI around here?"

OK, I might be paranoid, and I am sure we could elaborate more than that, but I think that it is fair to say, that just because your kid has DS, it doesn't mean that you are automatically going to have a great rapport with other parents. I think that you share a situation as far as diagnosis is concerned, but you don't necessarily share the same response to the situation.

Someone is watching me?

We went to a home-expo today. We got a few things that we've had plans to get for ages. Poor Sheena stayed awake 2 hours longer than she usually does, probably dazzled by all the plasma screen TV's everywhere. Only a year ago, I was saying, "Nah, don't need one of those, they're so excessive" But I was tempted today. We'll probably have bought one by the end of the year. It's easy to get caught up in the whole consumer thing.

While I was feeding Sheena some solids at the expo, I felt that people were staring at her. It might be something that I'll have to get used to, and on many levels I don't care, but it was definitely on my mind... My mind starts ticking over and I wonder:

Do people realise she has DS, and is that why they're staring?
Are people not sure if she has DS, and are they just staring to suss it out?
Are they just staring at her because she's cute and enthusiastic with her food?
Are people looking at me too, and thinking, gee, she's young to have a bubba with DS?

Yes, I am analytical, but it is something that I find is on my mind when we're out and about. Does anyone else feel like that with T21 kids?

Sheena has more tests at the hospital tomorrow. Better get ready. We have to be in town by 9am.

Swimming Sheena

Sheena had her first visit to the local swimming pool. We dressed her up in her very groovy swim suit, and bravely made our way into the kids pool. It was pretty busy. Kids were splashing around us a lot, but Sheena took it in her stride.

I swim laps about 4 times a week, and often I see people with Down Syndrome at the pool. I saw one girl a couple of weeks ago, who was about 20, swimming in the fast lane. I took a fair bit of notice of course, and initially it was hard to be 100% sure that she had DS, especially because she wore goggles. She was an excellent swimmer, and although rather slow for the fast lane, she had a very smooth technique, and could swim at least 100m at a time. She was, however, with her dad or grand-father, and he would hold her at the end of lane between laps. When she got out of the pool, he helped her into a wheelchair, as it appeared as though she had a rotated hip. Of course, a physical disability to that extent is not typical for people with DS, so I did feel for her parents in having to have the extra issue of having a child physically dependent, as well as being a slow learner. She seemed a lot more like everyone else, than she was differnt. Just enjoying a trip to the pool like the rest of us.

Busy Days

Have been very busy with Sheena appointments lately. Unbelievably so. This week alone we've had appointments for; Speech, Physio, Peadiatrition, and visiting an EI centre where we're planning on sending Sheena next year. Tommorow is a free day on the calendar as far as Sheena is concerned - YEA! Next week we've only got a test for Sheena at the Royal Children's Hospital, and a physio appointment. Thats a quiet week.

Somehow we are still managing quite well to have a good social life around all of this EI and medical stuff. That would be a lot tougher to keep up if we had more kids.

The appointment with the new Pead went very well. He's been around for a long time, and has a strong background in infant irritability. He's ordered a couple more tests along with the sight, hearing and heart assessments that she already has booked. I'd hate to be a Peadiatrition. Having to deal with crying kids and their parents. It must be emotionally very taxing.

I hope going back to work will be OK. Only planning 15 hrs per week, but that is a lot when all this other stuff is going on.

Beaming in Bed

Had my local Mother's Group today. It was good to see the other mums and bubs. Sheena was in an excellent mood, and graced us with a couple of beautiful grins.

I have made an appointment with another Pead for a second opinion regarding Sheena being so much less engaged than she used to be. It doesn't hurt, as he might have some insight that her other Dr could not offer. It would be nice to think that it was just teething that is making her so out of sorts, but her change seems so much more dramatic than that. The amazing thing is that she sees him tomorrow, which is unheard of for a specialist.

Sheena's new speech pathologist came over today. She was very nice, and we seem to be doing all of the right things. She suggested making more gestures which is easy to implement.

Sheena was very funny tonight. I put her to bed after cuddles and stories with Dad, and she gave me the loveliest smiles when she was tucked into bed. What a funny bub - loving being put to bed.

Sleepy Sheena

Sheena did a whopper 13 and 3/4 hour sleep last night. I told my husband that if she sleeps 14 hours, I am going into to check on her. Of course, she woke up 10 minutes later.

I don't think she is 100%. Like I said a couple of days ago, she has a pimply rash particularly on her arms, and has been running a fever on and off. Her Peadiatritian told us not to panic unless she starts vomiting or going off her feeds. He thinks it is just a virus. Her spit-ups this morning were verging on vomiting, so I will see what she is like when she next wakes up. She only lasted 1 1/4 hours this morning before falling to sleep again.

Quiet day today. Mark is at a bike race, and then the footy. I am looking forward to a day of veging-out and going a walk/run later in the day.

Do you like Sheena's cheeky grin?

Daddy Back-up

Great day today. Sheena seemed to grizzle less, but it was probably just that her Dad was home all day, and we could share the load. Sheena still had a crying fit after her bath, but it is just her tiredness getting the better of her.

We are getting her heart checked out again. She is going to sleep at 5.30pm, waking up at 6.30am, and then only having stamina for 1.5 hours of up time during the day before needing another sleep. At her 3 month review with her Cardiologist, she had a Small VSD, Moderate ASD and her duct had not closed. None of that should be causing her to be fatigued, but it is worth getting it looked at again. She is gaining weight fine, but her circulation can be dodgy sometimes, but then again so can mine.

We walked up the 1000 steps today in the Dandenongs with Josh, Jodi, Kirra and Jarrah. All babies in slings or backpacks. Only Kirra stayed awake. Sheena was very cute, asleep facing out in her Baby Bjorn. I love the way babies can fall asleep in the oddest positions.

What are we in for next?

Sheena had a Peadiatrition appointment today, just for a checkup. Coincidentally she also is running a temperature of 37.7, and has a rash on her forearms and back. I can't help wondering if this is going to lead to another hospital visit. At least it is the weekend, and Mark will be home for back-up if necessary. Hopefully it is just a viral thing, which is what the Pead expects, but it is not too good to have a fever regardless.

Here is a photo of Sheena when she was about 12 hours old. She still likes being cuddled in the same position.

Routine - What Routine???

Given our really rough patch with Sheena Tara, I have been trying to keep life simple, and to let Sheena have proper oportunities for quality sleep during the day. However... this is not so simple! Yesterday I had to go across town to Windsor, (a 45 minute drive) to buy an expensive high chair that I'd bought on ebay. I decided to go for a flash one, because it has lots of positions that should be good for Sheena. They are $400 in the shops, but I got it for $190 on ebay - cool. While I was over there, I also went to Noah's Arc, a specialist toy library. I got Sheena some really groovy stuff. But... there goes Sheena's routine. I had to wake her up as soon as we got there, because she'd gone to sleep in the car. Not a very happy camper as the occupational therapist help me select toys for Sheena. I know that Sheena is only 7 months, but she is breaking down the stereotype that 'they are such happy kids'. I really hope this is a bad episode of teething.

We went to a talk at the DS Association about education options last night. The speaker was an academic, and very pro-inclusion. http://www.include.com.au/ He said some very powerful things. Such as, is there any one thing that DS people share in common with all other DS people? The answer is no. The Syndrome is highly variable. For example, Sheena has brushfield spots in her eyes (which are stunning), but she doesn't have a single crease in her palm. Sheena has a heart condition, but she rolled over when she was 16 days old (yes that wasn't a typo).

The Grizzly Girl

The latest theory on Sheena's ongoing grizzling is that she is teething. This has been suggested since she was 5 months, but I am starting to think that it is actually the case now. Babies with Down Syndrome can be slower to teeth, and the teeth sometimes don't come in the usual pattern. Her teeth/gums might be really irritating her.

I think she might have a very low pain threshold. I have a high pain threshold, so I am a bit impatient with this ongoing grizzling.

Today, when Sheena's physio came over, Sheena had just woken up from a 2 hour sleep & was breastfed. Theoretically perfect for a physio session. I'd also given her a panadol and bonjela in the morning, but that might have worn off. She grizzled away, but was constantly sucking on her hands. A bit obsessed. We got out a rusk, and she knawed at it with gusto. With Sheena's low muscle tone, she can't put toys etc in her mouth easily, which would usually relieve the teething process - so I might have to offer, and help her with rusks. Fun hey.... The physio was actually able to work with Sheena for a change - grizzly but not screaming.

After another sleep, another panadol and more bonjella she had a very relaxed afternoon, so that was fantastic. I had coffee with my local mothers group, and with Sheena in good form, it was really nice.

I made her grated cheese and brocolli for dinner. It was a bit lumpy for her, but she managed OK. Baby yoghurt for dessert. How civilised.

Sheena's Birth

Sheena was born in January 2006, 3 weeks early. I thought my waters broke, after I felt like I'd wet myself while lying in bed. We rang the hospital and they told us to come in to make sure. This was at 10pm at night. It was confirmed, at it didn't seem real when they told us to come in the following morning to be induced. I had not had a contraction.

I went home, and managed to get a few hours of crucial sleep for the exciting day ahead. I had one twinge in the middle of the night, but it was nothing major at all.

At 9.30 we got to hospital. Still no contractions. The Dr examined me, and I was 1cm dilated. That was a good start considering I had not had a contraction to speak of.

It was at about this point that I called my mum, who had agreed to be with us for the labour. The drip was inserted to bring on labour. It was nothing major to start will. Just a bit akward with the drip and the monitors on my tummy. All through my labour I needed to go to the loo, so it was a big effort everytime, to disconnect the monitors, and make my way to the ensuite with the drip still attached. This probably happened about 40 times in the 9.5 hours of labour. I was grateful to have Mark and my mum there to help this procession.

Labour started to get nasty about 2 hours in. I couldn't manage the gas, as I was yelling too much. The pain was in my thighs more than anywhere else, and I couldn't find a comfy position. Eventually the midwife changed shift, and the new midwife was much better at suggesting positions, and providing supporting cushions. I leant over the bed kneeling on cushions.

At around 1.30 the Dr came back to examine me. I hated being examined as it meant lying on the bed, which was the worst. I was only 4cm dilated. I remember saying, "Lets talk about drugs". I couldn't take much more pain. The contractions were intense and only 1 minute apart, and lasting about 40 seconds. I was given a pethadine shot. It did not reduce the pain, but it did give me the chance to rest between contractions, and to relax enough to have gas.

My pushing stage lasted 2.5 hours. I was screaming heaps, but polite. Whenever anyone told me that I was doing a good job, I would say, "Thank you". I had read somewhere that when someone gives you a compliment, take it on, rather than discard it. I don't think it would usually apply to labour, but hey.... whatever works.

At around 7pm Friday night, the Dr was keen to head home for the weekend, so he popped in and started mentioning forceps. I started really pushing then. I had to tell the Dr to speak up, because I had gone temporarily deaf... Sheena was crowning, but was going in and out with each push. The Dr told me not to yell, so that my energy would go 100% into the pushing. It worked, and Sheena was delivered at 7.34.

Education - Mainstream vs Special School

My Down Syndrome coffee group had a guest speaker today about schooling options. Anyway, it got me thinking about it. I am far from close to making a decision at the moment, however I think it will depend a lot on Sheena's abilities. If she is doing exceptionally well, then I think it will be a much tougher decision. Do I want her to be exceeding her school mates in a special school, or do I want her being constantly challenged in a mainstream school? I didn't realise that so many kids with DS are in the moderate range of intellectual disability, I thought most were mild to moderate and would easily be able to access special schools rather than special development schools. All kids can access mainstream schools, but will that be the best for Sheena? The thought of her having to have an IQ test at 4 years old seems absurd.

Looking at the kids in my coffee group, most are getting along really well - however most seem to have a cold or some other health issue loitering around.

Sheena in the Sunshine

Went to the beach today. Sheena was not very impressed I am afraid. I think she was hungry for solids actually, but at the time I missed her signs. I have decided to increase her solid meals to 3 a day. Might help the whinging. We met Kathy and Steve and Evie today and their new baby boy - Ben. He is gorgeous. I big healthy bubba, only four weeks old and already in size 00. I am sure Sheena will find him a great friend.

Sheena took a bottle today!!!

OK, for some, a baby taking a bottle would not be worth great excitement, however I felt like truely celebrating. Sheena drank 75mls from her new Nuk bottle today. That is HUGE. I was getting so worried about her increasing appetite for solids, but not being able to give her adequate fluids. PHEW. Something I can stop worrying about.

Sheena's 6 Months Old

Sheena was a real handful in her 6th month.
1. She got a Urinary Tract Infection - in hospital for 2 nights on a drip.
2. She was awfully effected by 'Bowel Colic' - very irritable, and in hospital for another 2 nights for observation while they decided what was wrong with her... Her diagnosis was basically because they didn't know what was wrong - Colic captures anything.
3. She was at Mitcham Private Hospital for another 7 nights, while under close observation. Their strategy was to put her to bed everytime she got unsettled. It has had some success, so I am now popping her into bed much more readily.
4. She saw a Surgeon and he decided that she needs a biopsy to determine if she has Hirschprungs Disease. That will be when she turns 7 months. It is because she is very constipated. It might explain a lot of her irritability.

I just hope that it gets sorted out ASAP, so that I have my happy little girl back. I miss her!