The Pope Mobile

Sheena spent most of the day feeling fairly miserable with her cold (look at her watery eyes) and ear-infection, but we took her out briefly in her new back-pack. We call it The Pope Mobile, from when the plastic rain cover goes over her face. Yes, it is h-e-a-v-y.

Therapy Talk

Today Sheena still managed to look very happy and cute in her corner chair despite being off-color with a nasty cold.

At childcare this week, Sheena's Physiotherapist went in to show how the carers can best help Sheena's physical development. Sheena is only in there 2 day a week, but bring it on I say - she needs as much help in that area as possible. Sheena's physio is excellent in passing on techniques and she has an ability to make it seem interesting and exciting. Initially it was. I'd have her on the exercise ball, or get her doing squats, it was something different. Now, however, it is a chore a lot of the time. It is not spontaneous or natural, like reading a book, or rough-housing. Its just therapy, and it is hard to stay excited about it day after day.

Sitting, sitting and more sitting.

Sheena had a full day in childcare, and my work was really busy, so it kept my mind occupied. Again, the staff were amazed at Sheena's progress in just a week. She sat up for them a lot, and showed an interest in baring weight. Now that she can sit, she can play better with the other babies, who she is very interested in. She is soooo cute when she is sitting. Did I mention that she can sit now?.... Not half happy about that.

A Sitter-Upper

Sheena sat without support a few times today. 30 seconds was the most she lasted. In the midst of me putting her into a sitting position, she actually tried to bare weight in her feet. Now that is another first for Sheena, because she usually has zero interest in that. The cushion behind her in this pic isn't holding her up at all, it is all Sheena.

We spent the weekend at the beach, but it was not good weather for our 1 year old. Despite it being quite warm, it was very windy and raining a lot of the time. Sheena did come to the beach with us a couple of times, but otherwise hubby and I tag-teamed it, so that we could both have some decent swimming and surfing sessions.

Two Cold Legs

Here is Sheena upon waking. Poor poppet, we're going have to do something about that. But of course it means that she is moving, so its really good.

She is now enthusiastically rolling from tummy to back, then back to tummy. She did it about 50 times last night, so she obviously enjoys it.

I am still in awe every time she smiles, let alone this rolling business. It was only about 2 months ago that we were sitting in the Neurologist's office with her grimacing and in a complete state. She has come so far. We were literally thinking that she'd never recover, and might never walk. She is back on track so we are still in shock that she is progressing so well.

Otherwise, our friends have lent us this great activity centre. Thanks A, A and A. She obviously enjoys this too.

ENT

Sheena had an appointment this morning to see an Ear Nose Throat (ENT) Specialist. Hearing is so complex when it comes to babies. There is so much to it. Here are all the boring details for my own recollection. You have been warned!

1. The structure of Sheena's ears is fine, and her ear-channels are not small as frequently seen with the DS.

2. He doesn't think she should have tubes/grommets just yet. Because;

a. They would probably fall out within 4 months

b. He is reluctant to give her and GA because of her heart issues (but was less so when I told him that she has already had 3).

c. It is not critical at her developmental age for communication - once she is 18-24 months YES, but not so much now. Around 18 months, most kids have about 6 words, so that is when speech starts to become critical. I really pushed him on this one, because after last year, we want to give Sheena every-chance to be as alert and aware as possible. He agreed that grommets can help with alertness, however the last one was a clincher:

d. Tubes can increase the incidence and occurance of ear-infections, and can inhibit antibiotics from working properly, so you end up with chronic ear-infections. Teething can also cause ear-infections, and Sheena is in the midst of cutting teeth, so timing would be poor.

3. I asked him how bad the fluid in the ears was. I was expecting him to say 70%, but he basically said that they are blocked. I was shocked. She can definitely hear, and she particularly enjoys kissing sounds, singing, and sqeaky noises. Very confusing!

4. She'll have a hearing assessment in March, and we will reassess treatment then. Hearing aids could possibly be of use, but the thing is that she can hear - it is just the blockage that needs to be dealt with. But as mentioned, tubes have side-effects too.

5. As a baby, she is typically only 4 metres away from us at any given time, and she is going to learn language from us.

I was very keen for him to be agressive in treatment, and agreed that we need to be 'appropriately agressive'. He didn't sway in his original recommendations even though I was pushing for him to act, so I respect that. He wasn't saying go-away, but rather, lets give this appropriate time and we'll act when it is best for Sheena.

"The" Down Syndrome

It was over 40' today. I was OK in airconditioning at work, but at the childcare, they only have fans, so Sheena had to deal with it more than me. Sheena doesn't seem to sweat, so she can really heat up. It can happen with the DS. It doesn't help that she has red-hair and is her father's daughter who also can't stand the heat.

I have taken to calling Down Syndrome, "The" Down Syndrome. I am occasionally surprised from the way some people talk, that all they see in Sheena is the DS. She is so much more than her extra chromosome. For me, calling it "The" Down Syndrome somehow distances her from all the stereotypes, and negative associations many people have of it. The stereotypes are so strong - placid, like music, like dancing, are heavy, short etc etc. Well so far Sheena has spent 80% of her life being irritable (not placid), she does like music (as does everyone else I know), she loves happy baby dancing, she is chubby only due to the Pred Meds but is currently on her radical diet, and she doesn't look short to me, easily filling the legs of her baby clothes.

I am also surprised about the low expectations some people clearly have of her - or not really her, but of people with DS, because they don't see past it.

Pool Party

One of Sheena's friend's had a pool party for their 1st B'day. Sheena was pretty into it as you can see.

She had a fantastic session with her Physio today. She really needs to work those abs, and get some weight into her tootsies. It is coming along, but progress is slow. I just can't wait until she sits competently, so that she doesn't have to lie down on be put in chair when not being held.

Sheena is still on a rather radical self-induced diet. She would rather eat nothing, but she'll still have her yoghurt/custard. We persist with all the other stuff like fruit, veg and cereal, but the mouth shuts and the head turns. As soon as we put a bib on her she grizzles and fusses, as she knows something is coming. It might be still a reaction to coming off the Pred, or she might have a mild ear-infection that is making eating painful. She sees an Ear, Nose and Throat Specialist on Thursday, so we might learn more then.

In the meantime, it is back to work for me, and childcare for Sheena. I am not looking forward to juggling everything. I am very stressed with the thought of it.

One Cold Leg

Like all mothers around the world, last night I debated about how many layers I would put Sheena in to sleep in overnight. My final decision was to keep her in her romper, but to leave her legs out. Put her blankets on, and all was looking fine. Although, this is the first night that she decides to somehow turn 90' on her tummy, and end up with 1 leg hanging out through the cot rails. It was quite a sight this morning.

With the drought, gardening in Melbourne has become extremely regulated. We're up to stage 3 water restrictions. As an odd numbered household, we are only allowed to water our gardens on a Wed, and Sun between the hours of 6-8am and 8-10pm. You must use a trigger nozzle when watering, and you aren't allowed to water lawns at all. This probably sounds ridiculous to other parts of the world, but it is taken rather seriously here, and neighbours, or passers by may dob on you, in which case your water pressure will be turned off and you'll get a fine. Hubby was on call last night, and had to work at 1.15am and 4.30am, so he slept in. I was looking after Sheena, having a play and getting her fed, when I saw the neighbours watering their garden, which reminded me that I had better get out there. I had to finish off feeding Sheena and making my morning coffee, before which I can not do anything. This left me 15 minutes to water the front and back garden.

Out in the garden, I went overtime, by the time I had taken Sheena's swing outside so that I could keep an eye on her. I decided that baby-care was a good enough excuse should the water police give me a earful. Here is a picture of Sheena helping me (or hindering me) do the watering.

Catch-Up

Sheena had another 'very good' report card from her Neurologist. He reviewed her MRI and last EEG, and both were looking very good. The MRI had no focal abnormalities which is what they were particularly interested in, given her Infantile Spasms. He gave us the OK to reduce her Epilim by 1ml in the morning, so she'll now be on 3ml in the morning and 4ml at night. He wants her to stay on Epilim for at least 6 months, possibly 12 months. As the brain matures epilepsy can come and go, so if she is on anti-convulsants, it might hold off seizures that may start over the next little while.

In discussing outcomes he said something that I have said to other people when they've asked me about Sheena's level of DS in the early days. He said that we presented him with a baby without DS and IS, he would have no way of knowing if their IQ would be 70 or 135. Similarly for Sheena, it is just unknown. However, he was a lot more positive given Sheena's recent turn-around. I asked if she could catch-up to her peers and he said, "Yes, absolutely".

We ran into one of the Dr's that was seeing Sheena while she was in hospital a while ago, before she went on the Pred treatment. He said, "Wow, you sure can see the Pred." We don't see her as massively bloated anymore, but it is good in a way that others do, as it means that she still has more deflating to do.

Ears and Immunisations

Sheena and I stayed in the house for the most of the day, out of the heat, and enjoyed hanging out with each other. I am gong back to work next week, so there will be less of this quality time.

We had to go back for an ear-fluid assessment. Sheena's ears are very blocked, and she will need grommets. They don't usually do it until babies are 18 months, because if its done earlier, the babies grow out of them too quickly. As it involves a general anesthetic, you don't want too many procedures. About half of the babies in my DS coffee group also have or are getting grommets. Hubby's niece had them, and my nephew almost had them, so its pretty common.

It makes us wonder how well she can hear. She can definitely hear, but it might be awfully muffled. Try putting your fingers in your ears and talking, and that might be what Sheena hears - scary.

She also had to go in for immunisations. We went to the evening session, and by the time it was our turn, it was 7.30, and Sheena had just drifted off to sleep in hubby's arms. Three jabs this time. The first she didn't cry, but for the 2nd and 3rd she shed a few tears. Relatively, it wasn't really bad at all.

I am quietly nervous that the immunisations might kick off her IS again. There is a school of thought that IS is related to them, but her Neuro and Pead both say that it is unfounded. Still not 100% convinced. She has another appointment with the Neuro tomorrow. I have tried to squeeze all these appointments in before going back to work.

Tag Dag

I have been tagged by Christina from Prince Vince Meets the World
1. Do you like the looks and content of your blog? It does the job.
2. Does your family know about your blog? Yes.
3. Can you tell your friends about your blog? I don't tell work collegues, but for the most part, my friends know about it.
4. Do you just read the blogs of those who comment on your blog? Occasionally I explore beyond. Especially when Sheena was diagnosed with IS, I wanted to find a blog on a person with DS and IS - no luck.
5. Did your blog positively affect your mind? Yes, it was good to get it off my chest.
6. What does the number of visitors to your blog mean? I don't track it, however I am disappointed if I do an entry and I don't get any comments - boo-hoo.
7. Do you imagine what other bloggers look like? No, the photos help.
8. Do you think blogging has any real benefit? I use it like keeping a diary.
9. Do you think that the blogosphere is a stand alone community separated from the real world?Not really…
10. Do some political blogs scare you? Do you avoid them? Not very interested. I leave that up to Hubby.
11. Do you think criticizing your blog is useful? I hate it when the spelling-police come out.
12. Have you ever thought what would happen to your blog in case you died? No.
13. Which blogger has had the greatest impression on you? Ramblings of the Bearded One It is all over the place with topics, so it keeps things interesting.
14. Which blogger do you think is the most similar to you? The Shamptons.
15. Name a song you want to listen to. Sheena is a Punk Rocker, by the Ramones.

Our Piano Player

Here is miss butter wouldn't melt in my mouth. She seems to have a lot of photos of her putting on this 'aren't I sweet and innocent' expression - yeah, right. Hubby got her a piano for Christmas, and Sheena has started getting into it. While she doesn't hate being in prone, she'd much rather be on her back, so we are trying to invent ways to amuse her in prone, so that she doesn't immediately roll over. Here is a YouTube clip of her playing the piano.

The Big One!

Sheena had her 1st Birthday over the weekend. We had a big BBQ for her, and she was in great form, epecially after coming downstairs after a nap, when she did the rounds and smiled at everyone I showed her.


There were about 25 adults and maybe 15 kids/babies, so it was by far the biggest party we've had in this house. It happened to rain for the 1st time in a long time, so we were all crammed in the rumpus room instead of spreading out onto the decking and backyard, but that's life. We were probably the only people in Melbourne not hoping for rain.


Nan made this cake, and Sheena had some pink icing and loved it. It was REALLY good, and only Sheena's individual cake was leftover. Aunty Christy made these letters too, which helped with the decorating. We are going to put them up in Sheena's room later.

Splashing in the Spa

For the 2nd day in a row Sheena woke up at 5.45am, so I got up early fed her, and fitted in a decent bike ride before hubby went to work. Love it. Except, the early start means I need an afternoon nap, which I have fortunately managed to get.

Sheena had an appointment with her Peadiatrition yesterday. He'd never seen her well before, so he was impressed with her progress. I mentioned to him that she has recently gone off her solids again - except yoghurt and banana. However, she'd be happy enough without that too. He said not to worry about it, as she is still on the chubby side, and it should sort itself out. She has actually lost a full kilo since coming off the prednisolone! That is huge. It is more than 10% of her body-weight.

He was a more positive about Sheena's outcomes. The MRI had nothing out of the ordinary and those dreadful bloods we had to get done just after Christmas were also fine. He wants me to consult with the Neurologist about taking her off epilepsy meds completely, and we have an appointment with him next week, so we shall see.

Sheena was funny in her bath tonight. She thinks she is swimming, and gets very excited. It is worth a watch: Sheena Splashing.

Rolling the Day Away

Sheena has rolled about 50 times today. That is not a fluke anymore. She did it about 5 times at home while I was on the phone, and then again, and again over at Nan's house. She has her action down pat, and we'll soon be baby-proofing beyond her immediate play areas. So she is very proficient from prone to back. Well that is another milestone we are happy she has relearned. Just shy of her 1st birthday.

Here is Sheena in her red Christmas dress that her Granny in Ireland made for her.

Meaning

With New Year's, we've been reflecting over the past year, and it has undoubtedly been a shocker. 2007 can only be better. I recently read Man's Search for Meaning by Viktor Frankl. At the risk of over-simplifying a very significant book, it's basic premise is that life is not about the pursuit of happiness, but rather the pursuit of meaning. He writes that it is only through suffering that you can really strip away all of the junk, in order to work out what is meaningful to you. Frankl is a holocaust survivor, so had more than his share of suffering.

You could ask a 'lady of leisure' or a 'man about town' at the age of 80, what has your life been about, and they might not be able to offer much. If you ask a parent who has worked on raising their kid with a significant illness or disability, they're able to say, "I did the very best I could for my child."

Well that is my deep and meaningful moment of 2007, I will get back to Sheena milestones. She is now biting her toes. Her big tummy isn't holding her back anymore.

Aquatic Centre

We took Sheena to Albert Park Lake yesterday, and went into the Aquatic Centre for a swim.

Sheena hasn't been swimming since she was 7 months. It was unbearably hot unless you were in the water, so we had a long play in the baby pool. Sheena seemed to like it all. I had her swimming on her tummy, going through water fountains, and watching all the other kids. She got very chatty saying mum,mum,mum,mum. That was during a ridiculous amount of background-noise from the wave-pool and kids screaming, so hopefully that means she can hear OK.