Please Play Ball!

Here is Sheena looking awfully cute in her uberbabe outfit. She was desperately looking up at hubby wanting him to play catch.

In other Sheena-news, Sheena had another hearing assessment today. This one is because she was not mature enough at the assessment she had at 11 months (that was their diplomatic way of saying that she wasn't alert enough thanks to her Pred meds). The good news is that her hearing is good. She was responsive to the sounds, and they do a wide variety of sounds that are all important for speech development. Her response was 'age appropriate' which is more lingo that therapists favour in their assessment of developmentally delayed kids. Neither of her ears are blocked at the moment, but we have to monitor that pretty closely for then next couple of years.

Otherwise, Sheena is down with a cold. She is OK, but sleeping a bit more, and coughing like a seal on and off. The fact that her ears are clear while she has a cold impressed the audiologists.

DSAV Fun Day

We went to the DS Annual Picnic. Met up with a few friends, and shared a few stories. Most people couldn't believe how much Sheena has grown recently. She has gone through a little growth spurt. Her hair is growing too, but it is a riot, and won't be tamed.

Here is Sheena in the sandpit. A nice shady spot for the red-one.

Sippee Cup

Sheena used her sippee cup for the first time. No OT involved here, she just happened to want the drinking yoghurt, so decided to go for it. This was one of her 6 month goals that we wrote up less than a month ago. There is an early lesson that we can't under-estimate this one.

Three Months On

My sister is down for a visit from interstate, and I have been trying to explain to her how I have been feeling now that Sheena is well and happy. It took me ages to work out how to articulate it. I am constantly amazed at every little smile, and I regularly say to Hubby, 'can you believe how sick she was?' It isn't post-traumatic shock, because it is a positive feeling, but I think that I went on auto-pilot while she was so poorly, and didn't fully recognise how baaaad she was. It was too desperate to fully acknowledge it. Anyway, after regularly trying to get Aunty Christy to praise Sheena, by saying, Isn't she great now, and Isn't she cute now etc etc, I eventually worked out how to explain my feelings. Extreme RELIEF. I was so terrified when she was sick, that it was that for life. Some kids don't recover from what she had. They either don't make it, or don't develop. As I said, it was literally terrifying. I know that my mum knows exactly how I feel, as she was with Sheena and I when she was at her worst. She completely agrees with me, that the feeling is relief. I wonder when this will pass, but it is only 3 months on.

Changing Times

We've decided to put Sheena to bed earlier, as it had stretched out to 8pm, and we wanted our evenings back. I thought it would take a week or so to get her to go down by 7pm, but only 3 nights later, and she was settled by 7pm. Tonight has gone on for ever, and its only 10pm.

A Sunday Feast

Sheena has finally worked up an appetite.

Breakfast: Weetbix, prunes, apricots and milk + breastfeed

Lunch: bread (fingerfood style) apple-berrie ripple puree, pate + bottle of milk

Dinner: water-melon, bread, pear, peach, avacado, blueberries (all fingerfood style), more apple-berrie puree, custard for desert + breastfeed

She's doing so well with her finger feeding. She actually managed to reach out and grab a blueberry from me, then pop it in her mouth. Thats my girl.

Full-on Fun

I am so thrilled with the EI playgroup, it is suiting Sheena 100%. The service is so comprehensive. I can see all the attention they pay to making every experience fun, but with a strong developmental focus. It was full on fun for 2 hours, and she was so responsive to it all. A highlight was when they had a peek-a-boo singing game in a group. Sheena was very exited, so they hid her first with the scarfe (I think she just wanted the scarfe). She clapped all the way through it completely covered, with both arms going full speed underneath. When it was the next baby's turn she cried because she wanted more, but she soon calmed down when we gave her a humpty-doll to play with.

Here she is playing catch with hubby. She loves balls at the moment.

A Lovely Day

I have to say that Sheena had a lovely day yesterday. That is what they (usually) say when I call childcare to see how she is going; "She's having a lovely day"....

We braved the heat, and visited J&J so that hubby could help with some building work, and just to catch up generally. They couldn't believe how much Sheena has changed since they last saw her about a month ago.

Sheena is really starting to show-off her personality. We re-read Gross Motor Skills for Children with DS. She seems to be ready to move, if only she could get those little legs under her hips better, and build up her biceps to get some strength in her arms. She is getting there, but now that she seems willing, we're keen seize the oportunity.

Lovely in Lilac

I am going to organise some extra physiotherapy sessions for Sheena, and pay for them privately. It has been very limited through her EI service lately - especially over the Christmas break, along with us changing services. We think she is at the cusp of developing new skills, like getting into and out of sitting, pivoting, and baring weight better, but I don't think we've been shown how to develop this as well as possible. The last time Sheena had a 1-1 physio session, the therapy lasted less than 5 minutes, and the rest was talking about other stuff. It is now just a matter of fitting this in to our week, but I only think Sheena will need 3 or 4 half hour sessions before I can maintain the rage at home.

Here is Sheena ready for bed in her new PJ's from Aunty Christy.

Pigtail Princess

I got sent this video from one of my best friends. I hope you are as inspired as I was: http://www.youtube.com/watch?v=f4B-r8KJhlE

Here is the background information:

[From Sports Illustrated, By Rick Reilly]
I try to be a good father. Give my kids mulligans. Work nights to pay For their text messaging. Take them to swimsuit shoots.
But compared with Dick Hoyt, I suck.
Eighty-five times he's pushed his disabled son, Rick, 26.2 miles in Marathons. Eight times he's not only pushed him 26.2 miles in a Wheelchair but also towed him 2.4 miles in a dinghy while swimming and Pedaled him 112 miles in a seat on the handlebars--all in the same day.
Dick's also pulled him cross-country skiing, taken him on his back Mountain climbing and once hauled him across the U.S. On a bike. Makes Taking your son bowling look a little lame, right?
And what has Rick done for his father? Not much--except save his life.This love story began in Winchester , Mass. , 43 years ago, when Rick Was strangled by the umbilical cord during birth, leaving him Brain-damaged and unable to control his limbs.
"He'll be a vegetable the rest of his life;'' Dick says doctors told him And his wife, Judy, when Rick was nine months old. ``Put him in an Institution.''
But the Hoyts weren't buying it. They noticed the way Rick's eyes Followed them around the room. When Rick was 11 they took him to the Engineering department at Tufts University and asked if there was Anything to help the boy communicate. ``No way,'' Dick says he was told. ``There's nothing going on in his brain.''
"Tell him a joke,'' Dick countered. They did. Rick laughed. Turns out a Lot was going on in his brain. Rigged up with a computer that allowed Him to control the cursor by touching a switch with the side of his Head, Rick was finally able to communicate. First words? ``Go Bruins!'' And after a high school classmate was paralyzed in an accident and the School organized a charity run for him, Rick pecked out, ``Dad, I want To do that.''
Yeah, right. How was Dick, a self-described ``porker'' who never ran More than a mile at a time, going to push his son five miles? Still, he Tried. ``Then it was me who was handicapped,'' Dick says. ``I was sore For two weeks.''
That day changed Rick's life. ``Dad,'' he typed, ``when we were running, It felt like I wasn't disabled anymore!''
And that sentence changed Dick's life. He became obsessed with giving Rick that feeling as often as he could. He got into such hard-belly Shape that he and Rick were ready to try the 1979 Boston Marathon.
``No way,'' Dick was told by a race official. The Hoyts weren't quite a Single runner, and they weren't quite a wheelchair competitor. For a few Years Dick and Rick just joined the massive field and ran anyway, then They found a way to get into the race Officially: In 1983 they ran another marathon so fast they made the Qualifying time for Boston the following year.
Then somebody said, ``Hey, Dick, why not a triathlon?''
How's a guy who never learned to swim and hadn't ridden a bike since he Was six going to haul his 110-pound kid through a triathlon? Still, Dick Tried.
Now they've done 212 triathlons, including four grueling 15-hour Ironmans in Hawaii . It must be a buzzkill to be a 25-year-old stud Getting passed by an old guy towing a grown man in a dinghy, don't you Think?
Hey, Dick, why not see how you'd do on your own? ``No way,'' he says. Dick does it purely for ``the awesome feeling'' he gets seeing Rick with A cantaloupe smile as they run, swim and ride together.
This year, at ages 65 and 43, Dick and Rick finished their 24th Boston Marathon, in 5,083rd place out of more than 20,000 starters. Their best Time? Two hours, 40 minutes in 1992--only 35 minutes off the world Record, which, in case you don't keep track of these things, happens to Be held by a guy who was not pushing another man in a wheelchair at the Time.
``No question about it,'' Rick types. ``My dad is the Father of the Century.''
And Dick got something else out of all this too. Two years ago he had a Mild heart attack during a race. Doctors found that one of his arteries Was 95% clogged. ``If you hadn't been in such great shape,'' One doctor told him, ``you probably would've died 15 years ago.'' So, in a way, Dick and Rick saved each other's life.
Rick, who has his own apartment (he gets home care) and works in Boston, and Dick, retired from the military and living in Holland, Mass. , always find ways to be together. They give speeches around the country and compete in some backbreaking race every weekend, including this Father's Day.
That night, Rick will buy his dad dinner, but the thing he really wants to give him is a gift he can never buy.
``The thing I'd most like,'' Rick types, ``is that my dad sit in the chair and I push him once.''
And the video is below.... http://www.youtube.com/watch?v=f4B-r8KJhlE

Where I'd Be Without You.

Sheena had her first day at her new Early Intervention Centre. We managed to keep Sheena awake 80% of the time, even though the playgroup runs through her usual morning nap time. She did really, really well.

Here is the basic format: Free play, then music, then snack as a group around a table, then outdoor time, then story time, and then sing good-byes, and then home. I was pretty quiet, sussing it all out today. There were 4 therapists to the 5 babies, from 1-2 years. Two of the other kids also had serious epilepsy causing developmental delay, another kid also had DS, and another kid had some other chromosomal abnormality.

I have to say, that it was soooo nice to have a group of babies where Sheena was not the most delayed. They all have their various strenghs and weaknesses, but Sheena was essentially average. One of Sheena's strengths is her cuteness, not that I am bias or anything.

As it is Valentines Day tomorrow, here is Sheena with her God Only Knows Where I'd Be Without You dolly: http://www.youtube.com/watch?v=OQHXGmfMGCc

Weigh-in

The hospital trip went well. The ENT checked Sheena's ears, and felt that the left ear is blocked, but that the right ear has certainly drained since her last check-up. One ear is OK for learning to speak etc, so there is less urgency. Sheena is going for hearing assessment in early March, then in late March we'll meet with her ENT again, and review if we need to do anything.

We weighed her while she was in hospital. Her weight on the 4th of January was 8.9kg, on the 9th Feb, she now weighs 8.86kg. Not much of a drop, but hardly the direction you'd expect in a bubba. She ate more today than she has in a week. Cereal was to madam's liking.

When Sheena started getting a little grumpy thisafternoon, we took her out in the Pope Mobile. She is a big fan of it. Here is hubby and Sheena squinting in the 5pm sunshine.

Mum keen to act.

I have just expanded my repotoire. I had been busy lately, and had not had time to surf the web, but I have just read a few fantastic blogs. I have updated my blogs of interest with a few great reads.

Today, we are going to the Hospital for a second opinion with another Ear Nose and Throat (ENT) specialist. We are keen get the fluid in Sheena's ears treated. That is on the notes from the 1st ENT Dr we saw, "Mum keen to act". We are a bit worried that he is 'old school', and was just letting it go until Sheena is 18 months. Doesn't make much sense given that hearing is so critical for learning and developing.

While we are in there, we are going to get Sheena weighed. She is back to eating nothing. She'll drink, but it is really starting to stress me out again. I think it is a natural parenting thing to stress about that, even if specialist say not to. Sheena had a dietitian appointment last Friday and she was very practical and very helpful. She suggested liverworst, pate, white sauce to expand Sheena's dietary intake. The liverworst and pate are rich in vitamins, and calories. Sheena took to them at first but yesterday and today, wanted nothing.

Also, Sheena now has a top tooth to match her bottom tooth. It cut-through a week or so ago.

Get Up - Stand Up

Sheena previously has had zero interest in standing, or baring weight, but look at her here. What a little champ.

Earlier she had (or refused) dinner in her chair, with both her feet standing in a tupperware dish full of rice. What the??? Well it was an idea so that she could get more awareness of her feet. Another thing that has been suggested, is to put shoes on her to get a tight sensation around the feet.

Otherwise she was exhausted today after two days in childcare. It really took it out of her, but she revved up in the afternoon.

Tonight we reduced her Epilim by 1ml, as she's not having any signs of seizures. She is on the minimum dosage of it now, so, like the Dr's used to say, "cross-fingers". If she remains seizure free for another 6 months they'll probably try to wean her off. The brain matures so much at this age, that a low dose of Epilim might hold off other forms of epilepsy that she is more likely than most to develop given the history of IS.

When it rain it pours

I've wanted to meet another family that have gone through the whole Infantile Spasms ordeal since Sheena was diagnosed. I have spoken to the Epilepsy Foundation, checked blogs, but to no avail. My only connection was a yahoo group with parents chatting about the different treatments and the like. However over the last 2 days I have been connected with two other families within a 30 minute drive from us that also had the diagnosis.

Here is Sheena particularly delighted in her wave jumping exploits.

Wave Jumping

We spent a couple of nights down at the beach again. We took Sheena down to the Ocean and she practiced wave jumping. We were just going to wet her feet and hands, but she got so excited, we ended up letting her get in properly.



http://www.youtube.com/watch?v=vRghmjv6tJQ

Today, she went swimming again at a pool party for my local mothers group. She seems happy enough in the water, but that fair skin makes swimming out in the sun a bit scary.

Juggling

We have had an exhausting week. Sheena and I have both had a cough, now hubby has one too. I was fine to go to work, but I had to drop Sheena off at Nan's to be babysat for 2 days rather than childcare. She is much better now.

Today we had a meeting with an OT from the EI centre that Sheena will attend this year. We had to discuss goals that we'd like for Sheena over the next six months.

1. Drink from a sippee cup 2. Eat finger food (she is still on her radical diet) 3. Weight baring 4. Crawling 5. Hand waving and clapping. 6. Understand some key words like bath and eat etc (who knows if she understands this already. 7. Improve holding skills. There are more things but I remember them all.

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.

Prop and Rock

Today, Sheena was not up to much on the living room floor, so I popped her in her high-chair, and then she was off. She started banging toys around, and was very pleased with herself. She can be so hit and miss. Sometimes she will be so excited about not much, whereas other times we'll be trying hard to get her interested in something, and she couldn't care less.

When she is propping in prone, she now rocks from side to side. It is very cute.

Last night while at friend's house for a party, it was our first night that we've had to do the sleeping baby move from spare-room, to car, to bed. We'd relied on Nan or baby-sitters previously. Sheena woke up, but was just really smiley, and when I tucked her into bed, she went down no-worries.

Black Cockatoos

I have added several photos to recent posts for everyone that has missed Sheena pictures lately.

A nature update from our house. We had some Yellow-Tailed Black-Cockatoos over the back fence.

Hangin' out with Cousin Mark

My sister's family are down in Melbourne for a visit. Spent the day yesterday shopping for some clothes for her. Sheena was lugged around a bit. Feel bad sometimes if she is in the buggy or the car for too long, as it certainly doesn't help her muscle tone. Nevermind, she had a few baby-cise sessions, and was very lively in the evening.

Today, I finally took her into the Childrens for a blood test. It was a disaster. We were both crying by the end of it. Sheena was crying so much she was choking. She is alright now, but at the time it was horrible. The senior guy couldn't find any veins, and they had to resort to a heel prick that they'd usually only do on a younger baby. She now has 4 band-aids. 2 on her fingers, 1 on her arm, and 1 on her heel.

A First Tooth from Santa

We had Christmas in the Bush this year. We visited family in Nathalia, which is about a three hour drive from Melbourne. They have a dairy farm, with about 60 cows – no break from the milking so it suits them better to stay at home have family visit them. We loved getting out of Melbourne, and the Bush was great for mountain-biking, although the flies were disgusting.

Sheena had a wonderful Christmas. She got her first tooth on Christmas Eve. Bottom left, and thankfully she hasn’t seemed too fussed with it breaking through. She was very excited on Christmas day, and was all chat, and all smiles. She liked being rolled around, and liked being helped to sit up and watch everything. She was delighted to have all the extra company. She skipped puree for Christmas lunch and instead had roast pumpkin, and cooked turkey sitting on my knee at the table.

The family we were visiting had a son who passed away a couple of years ago in his early twenties. He had a genetic condition called Fredrick’s Ataxia. Not noticeable until he was about 8 when he all of a sudden started having trouble with reading, and with co-ordination. It took them 18 months to get a diagnosis. Before we had Sheena I had no idea about the emotional turmoil that having a kid with extra needs can place on parents. I would think of the practicalities, like the extra time it would take to get him in and out of the wheel chair, or how restricting it might be for holidays. I did not at all understand how difficult it would be to see your child’s abilities regress. They saw it slowly, and while Sheena had her epilepsy we saw the process happen rapidly. I feel a lot more equipped to be able to talk to people about life’s hurdles these days. I would have dodged the subject previously, but now I know how nice it is for people to show genuine interest. Live and learn.

Sitting Up like Jackie

Sheena recovered very well from her General Anesthetic. I still gave her plenty of re cooperation time, and she had a pretty relaxing day all up.

She is slowly starting to eat bigger quantities of food. This morning, she had almost a whole weatbix, for lunch she had carrot and yoghurt, and for dinner she had pumpkin, a taste of mango, a taste of banana, and then finished off her yoghurt from lunchtime. Yes, Sheena LOVES yoghurt. She might have been so interested in food today because she only had jelly yesterday during her recovery.

Here she is sitting up like Jackie during a good long chat with Nan.

MRI

Well the day did not run smoothly at all. I barely slept, thinking that Sheena would be very difficult to manage all morning because of the fasting. I was awake waiting for the 4.30am alarm to go off, so I ended up feeding her at 4am, just to get it over with. She went back to sleep, not a bother, and all morning she was a dream. I kept her activity levels to an absolute minimum, and left her in her cot until 8am, despite her being awake at 7am, as I thought she'd start expecting food if I got her up. I only got her up at 8am, because she needed her Epilim then, but she was absolutely fine.

Hubby took some time off work to come into the hospital with us, and we got in there by 11am, as requested. "They'll just be 20 minutes". Fine, that is expected... Had a brief consult with a nice nurse who read through the brochure we'd be given. "The anesthetist will just be 20 minutes" OK... This went on and on and on and on. Several people came to speak to us that did nothing at all, other than move us from one area to another, or maybe come to say, "they're just a bit delayed because patient X had to have a lumbar puncture while under the GA". Then at 12.30, we were told that it wouldn't be until 2pm. By this time, Sheena was wilting on my lap, her fontanelle sunken, and she was not asking for food. I said to them that I didn't want Sheena to be sick for the next week because of getting dehydrated thanks to all of these crazy delays. They said that they wouldn't let that happen, but even-so, I ensured that they give her some fluids while she was under so that she'd have the oportunity to bounce back. I also asked them if it was a 'lunch time' issue, because by this stage, I didn't really care if that came across as rude. "No, that's not it", the Dr said, not looking me in the eye. I don't think it was any coincidence that she was held further still from 12.30 -2pm. Eventually 2pm came, and Sheena was given the gas, and the MRI took 30 minutes. Just as she was about to go in, I overheard them requesting a bed so that Sheena could recover for 4 hours. Upon asking what that was all about, they explained that after we'd had the consult with the Anesthestist, Sheena was classed as 'high-risk' because of her heart issues, DS, Pred treatment, and dehydration. In short, it was really only the dehydration they were worried about, because previously they've only ever given her the usual 30 minute recovery period. I know that some delays can be expected, but it was really ordinary that her health was being comprimised to the point that the procedure became 'high-risk'.

So eventually she had the MRI, and we all got home in one hot-piece. Sheena is recovering well, and is smiling and cooing, along with crying and whinging.

Muma Mumma

We had a much needed day at home. Sheena had her physio session - a bit grumpy with the whole affair, but not too bad. After stressing and stressing about this blood test that Sheena has to have, I have decided to wait until after Christmas, because it is not urgent anyway. The whole MRI ordeal will be enough for her this week, so if I can avoid the bloods, I will.
Sheena is now saying muma mumma. When I bring her close to me, she says it, with a very concentrated look on her face. When she is grumpy, she says, Nan Nan Nan Nan, Nan. Sorry Nan.

So tomorrow is the MRI day. She has to fast from 5am, so I am going to wake her up for a feed, then hopefully she will fall back to sleep OK.

Sheena has gone from a love affair with her hands to a love affair with her feet.

T'was the Week before Christmas

I had a very hectic start. We've got a lot of appointments this week, and they were at difficult times. I spent the first hour of my day trying to rearrange things so that things could run reasonably smoothly. This is the smooth version....

Today: Chiro across town
Tomorrow: Physio at home
Thursday Morning: Blood Test at the Children's
Thursday Afternoon: MRI (under a general anesthetic) at the Children's

I had really wanted Sheena's blood done while she was under a GA, but that is not going to work. She needs to have the blood test just before she has her Epilim first thing in the morning or at night. The MRI is booked in for midday, and that can't be changed. I am still thinking of not doing the Blood test on Thursday morning, because Sheena will be fasting, and I won't be able to give her a comfort feed after the blood test. She screams, and gets very distressed. I might end up doing that Thursday evening, or Friday morning.

It's really difficult navigating through all of this stuff - and this is just the medical side of things. Concurrently, I am also working out what sort of Early Intervention we are going to have for Sheena next year. With a week like this, I can see why we qualify for respite even when Sheena is not acutely sick.

So that was the hectic bit, then the fun bit. We had our Mother's Group joint birthday party for the babies. Sheena had a fantastic time, and played very well on an activity mat, and smiled at the other babies when they came over to play with her. It helps that she had a 12 hour sleep overnight. She was much better at this party than at the outdoor celebrations over the weekend, so maybe she was more comfortable.

Here she is asleep in the car after too many Christmas parties.

Catch Up - The Rest

The rest of the week was all good. Sheena is now playing with her toes for a good length of time. Her Childcare day went fairly well, but she didn't sleep well again. We took her to Christmas Carol's with some friends, but she seemed pretty overwhelmed by everything, so was not really in the groove of it. Likewise for a BBQ we went to Ava's first birthday party. She was pretty non-plussed, but I think she was effected by the heat - even in the shade it was hot. She doesn't really play much outside, mainly because she isn't mobile yet. Probably just sitting outside in amongst all the celebrations was enough for her.

Catch Up - Sheena's Scare

Sheena has had an eventful week, but I haven't posted any updates because our ISP has been messing us around.

Last Tuesday, before the mother's group Christmas Party, Sheena looked to have a cluster of spasms. It felt like we were back to square one. I rang the neurologists to request an urgent EEG. Thinking that they would be fully booked until after Christmas, I was ready to go into battle for Sheena, but they got us in the following day. I somehow managed to stubbornly pull myself together to go the Christmas Party, because I think normality helps. Besides, I had already made the strawberries dipped in chocolate, and bought the champaign.

So the next day, Nan, Sheena and I head off to the Childrens for another EEG. The whole thing was very nerve-racking for us, and for Sheena, quite distressing. She hates having the things stuck to her head, and screams so much, that once it is finished she goes into an exhausted sleep (exactly how they want her for the test). We could immediately tell that the EEG looked fine. We now know what a really bad EEG looks like vs an organised one. The technician who does it is great. For one thing, she is really fast at sticking all the stuff to Sheena's head, and she provides a lot of information about epilepsy in general. She said that some people have a bad taste in their mouth before a seizure, which is their 'aura' which could explain why Sheena was obsessed with her mouth for a while there (but not teething). She also said that even if people are on anti-convulsants they can still have an aura, but not a seizure.

We had to wait for one of the neuro's to check the EEG, and Monique said that it looked 'very good'. Sheena has never even had a 'good' EEG - she has had an 'improved', so we were delighted that it was 'very good'. We all agreed that her cluster of spasms, were most likely just little jolts as she was going to sleep. Of course, with Sheena's history little jumps are pretty scary for us to watch.

Nan and I celebrated with a lemon slice and a coffee at the hospital cafe.

Sheena Snuggles with Santa

Yes, Sheena didn't just sit on Santa's knee, she went straight in for a snuggle. We had a Christmas party with my local mother's group today, and one of the girl's had organised a visit from Santa. Some of the babies were not too sure when it was their turn to get their present, but I think they could all tell that it was a big deal to sit on Santa's knee.