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.