Anniversary

I have just copied and pasted this from DSDU. It was written late Monday night so the dates don't fully match up, but those of you in America won't notice that anyway LOL.....

This time last year, we were enjoying our tiny new addition. She was 4 weeks old, and had progressed well from the Intensive Care Nursery, to Special Care. She was now 35 weeks gestational age. All was going well with her. We were just fattening her up ready to come home.We were blissfully unaware that our lives were about to change dramatically.On October 20 2008, we were delivered the blow that is Down Syndrome. We had absolutely no inkling that it was coming. We hadn't had time to duck, or even to flinch. We were hit full-on in the face with the news that our child would never be who we thought she was. At the time, it felt like a death. I felt like they had taken our baby and replaced her with someone else. Looking back, I still see the 'before' pictures as if they were before she had it. Dumb I know. But that is the effect that this late diagnosis left me with.The year since then has brought with it many ups and (no pun) downs. We have met some great people. We have had some good times. We have learnt some valuable lessons. And above all we have had the opportunity to get to know the most amazing baby.But there has been more than her share of sickness. More time spent in hospital than I care to remember. And many tears for the opportunities she may never have. I can't say I have a lot of love for that extra chromosome. I don't like the way it makes her so sickly. I don't like to see my baby struggle. And I don't like how every new thing she learns comes at such great effort and cost. But there is something special about that extra chromosome too. My appreciation for my children, for life, for others has grown beyond what I thought possible. And as she has grown over the last 13 months, I have seen a beautiful personality emerge. One who I would never have known, had it not been for that something extra.So it is a bittersweet memory. That day last year was the hardest of my entire life. But all is not lost. I still have my precious baby girl. Something that cannot be said for so many parents of children who are born with an extra 18 or 13. We were lucky. The 21st chromosome is the one to have if you are going to have an extra.But, I am sure I will cry. I will cry for the sickness she suffers. I will cry for the difficulties she faces. I will cry for the hurdles still to come. But then I will move on. I will remember to be thankful for one of the greatest blessings I have ever received.

Sometimes I really hate that Samara has DS

Today, Samara starts her 4th day in the hospital. All she has is a regular cold. It's a nasty one - it has knocked the rest of us down a bit. But for Samara, a cold is not just a cold.

Initially, Michael took her to the hospital on Friday evening. When she was sleeping, her oxygen sats were dropping. Unfortunately, he made the mistake of waking her up. She could cope when she was awake, so her levels were at 96% when he got up there. So they sent her home.

Saturday evening she was getting worse. So at 2am Sunday morning, we took her back up to the hospital. Lack of sleep over the last few days has made everything blurr into one. But, they decided to admit her as her O2 levels were dropping, and they needed to suction her and give her a bit of oxygen.

Overnight Sunday night they just had her on 4 hourly obs. Which meant, once every 4 hours, they would come in, half wake her attatching the probe, and write down the highest number they got. Now, as I mentioned before, being awake or disturbed causes Samara's to take deeper breaths, and her oxygen levels rise. So really they are getting a false reading. Anyway, after her not 'needing' oxygen overnight, she was sent home Monday morning.

We left just in time to drive straight to the Royal Childrens for her opthomology appointment. The good news, is her eyes are great!

Anwyay, I digress. She got worse again Monday night, so once again, we headed off to the hospital at 2 in the morning. And once again, they put the probe on her foot, and got a reading of 97%. The triage nurse is one we have had a few times now. She is really lovely, and really listens to us. So when she went to record the 97%, I told her to just wait a minute. And sure enough, as Samara relaxed, her sats dropped to 82%!

Being the lovely lady that she is, this nurse then triaged her at a 1 (the highest priority) and took us straight through to resus. She told the dr 'this mum has 7 kids. She probably knows more about this than you do. Listen to her!' Well, that made all the difference. Samara was admitted with continuous O2 monitoring.

Since then, she has worsened. She is now on constant oxygen, as her levels were dropping even when she was awake. She is completely miserable. They are suctioning her nose before each feed, or she can't breathe enough to drink. Even then, it is a long slow process. She is starting to get dehydrated. She may go onto tube feeds today - we will have to wait and see. Her nose is bleeding due to the repeated suctioning.

Because of our family history of asthma, and because yesterday she developed quite a wheeze, she is now also on ventolin by nebuliser. Yet another contraption to hate having near her face. She fights it all the way. She also keeps pulling out the oxygen probes. And we won't even mention the difficulties when the nurses are trying to stick a suction tube up her nose!!

Michael is staying with her at the hospital. He can sleep through anything. Not me though. I tried to sleep there after she was admitted yesterday morning. But with all the alarms and things, I didn't do any more than drift off for a few minutes at a time. So last night I got my first real sleep since Friday. But my body isn't used to sleep any more. I woke up at 4.45, and here I am typing my blog when I should be catching up on some sleep.

But I can't sleep. I am worried about my little girl. What if she gets worse. Last night she was still going down hill. Is she still? Or is she about to turn the corner and get better? Does she need me there right now? Is she awake and crying for her mummy? Or is she sound asleep? Does Michael even know? Has he slept through her having a bad night? I feel guilty for needing to sleep. I feel guilty because my house looks like a cesspit. I can't believe we had it looking really good on Saturday for a rental inspection. Now, it is just filthy! The girls aren't doing their jobs. They won't even touch the dishes! I am tired. I can't cope with this. If I am up and about, then I need to be at the hospital for my baby, not trying to kick some kiddy butts into doing the basic jobs that need done. The girls are old enough to keep things running for a few days. But it's really a waste of breath trying. I think after this is over, Renata will be moving out to the bus. She just doesn't pull her weight. The others then follow her lead.

On the plus side, I have a good friend, Deb, who has taken Christiana and Mahalia for a few days. She has been onto the girls to do what they are told. And she has also been bringing food up to the hospital for Michael and I. I don't know what we would do without her. We are completely broke (as in, had to borrow all Sara's babysitting money just to buy Samara a tin of formula) this week, so we just would have starved without her help! We just had to fork out $900 for a container and then to ship it, to store our stuff in, that has been living up in Childers since we moved here. The people who's property it was on needed it moved. So really, we had no choice and had to just do it, despite it meaning we would be left with no money. But why now??!!

On Saturday, Sara, Samara and I are supposed to be going down to the Gold Coast for our DSDownunder get together. We are going for 5 nights. I really hope and pray that Samara is well by then! I am just going to cry if she isn't. On the plus side, at least we get some pay on Friday so we can afford the diesel to get there! LOL

Well, now that I have had a bit of a vent, I am really loosing it tiredness-wise. I am going to try and catch a couple more hours of sleep before I have to go back to the hospital.

Elmo Cake

I have had a request for some pictures of Samara's birthday party.

She slept for most of it. Possibly she was conserving energy for the cake........

Here are the cake pictures. I will add other party pictures in a separate post.

First up we have the cake. It was a bit of a drama. Elmo looked near perfect when I first made him. But then the Queensland heat got to him. The icing started to melt, and his eyes and nose slid right off his face! Now I really wish I had taken a photo right at the start! Anyway, here is the version that was as repaired as I could manage. The icing had lost a lot of it's volume, so the fur look never did get back to it's original plushness. I guess he was just like a real Elmo toy once a baby has matted his fur!

Samara didn't know quite what to make of this new Elmo when she first saw him....

So she did what she always does when she sees an Elmo. She gave him a hug and a kiss!

Deciding that, while this Elmo didn't talk like most of them do, he could be forgiven. Especially since he tasted so GOOOOOD!

The resulting crime scene was not a pretty sight! CSI would have had a field day!

Fearing a wrongful death suit, Samara thought it might be best if she covered her tracks by eating the evidence.....

But the evidence was speaking for itself. With Elmo "blood" all over her face even AFTER daddy had put her under the beach showers!

So I tried to clean her face, hands, and arms with Wet Wipes.....

When we got home, she had a bath. Yet after these 3 cleaning attempts, she is still a red tinge!

Needless to say, there wasn't a queue waiting to eat what was left of poor Elmo after that.

Happy Birthday Sweet Baby Girl!

Well. We did it. Samara's first year has now ended. This time last year, Samara was just 19 minutes old. I was completely knocked out, and Samara was in NICU on a ventilator.


Now, she is laying in her bed, exhausted after another night of coughing. I am laying on my bed after another night of patting her back and checking her sats.


She really couldn't be bothered with much this morning. Although she did really like her new Elmo Pillow book. She also liked Up, Up Elmo. Not too sure what Dorothy the Dinosaur was. And we haven't given her her swing yet, cos the landlord is fencing in our yard today, so there is nowhere to set it up:(


I am enjoying the quietness of today, knowing that tomorrow we will go from only having 3 girls here, to having 12 when Kerrigh arrives with her 6 girls! Then things are going to be full-on. We have FECS tomorrow, then I am going to meet Kerrigh and the girls at the bus. Friday we have Premmie Playgroup, then the doctors. After that I have to do the grocery shopping for the party, bake the cake, find someone to blow up the helium balloons I bought from the States (here is a picture of the best one!), pray (hard) that the weather will be fine Saturday (the clouds are rolling in at the moment!), make sure all the girls have their Sesame Street Tees ready to wear........I think I may fall into bed at the end of the day! Then Saturday I need to decorate the Elmo cake. Shouldn't be too hard, but it makes a lot of mess - and the kitchen here is a shoebox!


But I am really looking forward to the party. It is going to be such a huge celebration. Because we have so much to celebrate. We have been blessed with such a massive miracle in such a small package! They say the best things come in small packages - and in Samara's case I can really vouch for the truth of that!


Samara's breathing is sounding pretty whistly. I'd better go check her sats......


Til next time........

The significance of tomorrow

Well, in just over 3 hours it will be the 23rd. The day that marks one year since our precious angel was born. It is hard to believe that this time last year, I went off to bed totally unaware that within the next few hours I would have the major bleed I had been warned of, get rushed down the road from Ronald MacDonald House to the hospital, have an emergency c-section and 2 blood transfusions, and then later that day get to meet the most beautiful fragile little baby I could imagine!

Now, at nearly 8kg, she is over four times her birthweight. She is totally convinced she is a big kid. She even takes one arm out of her carseat straps, so she is just wearing a seatbelt over one shoulder like the big girls! She is trying to walk. She is a fair way from it yet, but that doesn't mean she isn't going to try! She has learned some sign language. She shows definate preferences for what she does and doesn't like. Elmo, lollies, icecream, chocolate custard, chicken (not mushed up tough!) flashing lights, baths, bubbles are all worthy of enthusiasm. Medicine, nose-wiping, sitting in the car, babies who pose an attention risk are not:)

On the way to Kingaroy at the weekend, she ate more than half of Renata's icecream. We gave her another one, and Samara ate half of that too! In fact, she got mad at Renata for taking any for herself! She is even getting fussy about the bottle. She wants to drink from a cup. Not a trainer cup mind you. A real one. Talk about making a mess! Not to mention the fact that we have to be careful that she doesn't aspirate it by going too fast.

This past year has be frought with many difficulties, and much sadness. But it has brought so many joys and enriching experiences, that I find it hard to believe that it has all fitted into one year. In some ways it feels like she has been here forever. That we have been on this Down Syndrome journey forever. (and that's only been 11 months since dx). I was saying to Kerrigh the other day that the days in the nursery really seemed to take forever. Those 2.5 months felt like an eternity. But the 9.5 months since then have just flown by.

Tonight as Samara lays sleeping in her bed on the other side of my room, I am sitting on my bed listening to her wheezing breath. Hoping she doesn't end up in hospital on her birthday. That just wouldn't be fair. I wish I could take away this aspect of her disability. The rest isn't so bad. I just don't like seeing her struggle like this.

I sit here, and I watch her. And I feel such a huge wave of love wash over me. I am floored by it every time. It brings tears to my eyes. We really have been blessed beyond our wildest imaginings.

Samara - I love you with all my heart. Have a wonderful birthday sweetheart.xxx

Yes, I'm still alive...........Thanks for asking:)

Well, after my last post the laptop power connection broke. I hate when that happens! Anyway, it took a while to get it fixed, and I am too lazy to sit at the computer desk for longer than I have to! Then, I finally got it back, and have spent the last couple of weeks catching up with people, and generally just doing nothing much!

Then Cathy asked me about it on dsdownunder, and I finally got the kick up the pants I needed!

The house we were looking at fell through. The place the owners were supposed to be moving to fell through, so they have stayed in their place.

Samara has had a few more colds/bronchiolitis, and had to go on steroids again. We have just got an oxygen saturation monitor off ebay, so now I can see how her levels are when she is sick, or having apneoas. She had quite a few last night where her levels dropped down to around 80%. I considered taking her to the hospital, but the trouble is, once she wakes up she is fine, and we just get sent home.

We don't get in to see the sleep clinic (and I'm just talking initial consultation) until 16 December! So who knows how long it will be before she actually gets a sleep study. I am tempted to take her to the hospital every night that her sats drop below about 85, just to bug them, so maybe they will make it sooner just to get rid of us!!!!

This weekend we are heading up to Kingaroy to Kerrigh's place (Veritee's mum who has been featured here before!). We have to get the container of stuff we have on our friends property in Childers off by the weekend. So now we have to find a container, and ship everything down and put it in a paddock at Kerrighs. I really can't be bothered, but while we are still in this 2.5 bedroom house, we don't really have a choice.

I am getting very distracted at the moment, by a certain 16 year old with Aspergers who is going completely off her rocker. The girls have got the dreaded headlice yet again. They are being treated today, and she doesn't like the way it was being applied!!! So she has been storming through the house punching kicking swearing and screaming. I really don't feel like dealing with her! I was up til 3.30am with Samara's breathing, and then up at 6.30am getting organised before Playgroup.

The playgroup at Woody Point Special School now has a group especially for babies which Samara likes way more than the one with the older kids. She especially likes the bubbles song, and painting. She is getting better and better with her sitting, and trying to stand. But still not interested in crawling or rolling. She is a chatty wee thing, and has learned a few basic signs, and made up some of her own.

In just one week from today it will be Samara's first birthday. And what a year it has been. We are going down to Suttons Beach where we are going to have an Elmo party. I am just waiting for the balloons to arrive from the US, and then we will be set. Michael thinks she will nose-dive into her cake, and he plans on videoing said nose-dive for Funniest Home Videos! Typical male thing to think of LOL.

On the 10th of October (Sara's 18th), Sara, Samara and I are going down to the Gold Coast to meet some of the other dsdownunder families. It should be a great week. We are going to all go to Seaworld, where we are going to have a combined birthday party for Samara, and Armarli and Tori-Shaye (who are both turning 2 around then). I am really looking forward to it. Everyone else isn't showing up til the 11th and 12th, so I thought we might go on one of the short cruises around the bays for Sara's birthday.

Well, that's pretty much all that's been happening here. I'll go have a look on photobucket now for a picture or two to pretty this post up! LOL

The Paed Visit, FECS, and the Down Syndrome Awareness Poster

Well, Dr Slaughter (yep, that's really his name! - but I figure that a dr with a name like that must be pretty good to still be practising!), has put Samara on the waiting list for a sleep study. It could be a long wait though. In the meantime, he has prescribed Rhinocort for her, in the hopes that it will help. He thinks the problem could be allergy or asthma related, or at least worsened by one of these. Especially since both are in the family.

She had a pretty exhausting afternoon at FECS doing physiotherapy and Speech. But she did have a lot of fun with all the toys! We have been given some exercises to do to try and get her rolling over, and also to push up on her hands when she is on tummy time. We are also starting to encourage her to reach in different directions when she is sitting, rather than just staying in her safe central position.

I have spent a lot of the last couple of weeks doing photos for the Down Syndrome Awareness Week poster. Today, I was at the DSAQ office helping them to do a mock-up poster. We still are waiting for some of the products, and we need to get a nice cloud shot (but it hasn't been cloudy!) for the background. I am also going to play with the photos a bit and try a couple of different layouts, and alternate photos, but this is what we have come up with so far. The one of Samara and Emma (our next door neighbour) were a bit of a challenge. Samara grabbed Emma's foot, and Emma had excema there, so it hurt her. After that, Emma didn't want' to go anywhere near Samara! I was worried that we wouldn't get anything, but with a bit of hardcore patience, we finally came up with a few useable images!

The product shots were interesting. I haven't done products since I did my photography training! But I was pretty pleased with the way they turned out. Some of the products haven't come back from the manufacturer yet, but when they do, they will go down the right hand side. Well, that is if we keep with this layout. I am thinking of turning the 3 in the bottom picture sideways, and making the overall portrait part go across the page, with the products underneath. We are a bit limited though, because the whole thing has had to go before the committee, so we have to stay within certain guidelines.

While I was there, I found out that 2 of their staff are off work with Swine Flu. Also, a friends daughter may have it too. (we have seen them twice this week). I hope Samara doesn't get it. Her breathing problems are scary enough as it is. It doesn't worry me for the rest of us. But I would do anything to keep her from getting it. I am thinking of starting her on Kyolic. Just to give her that little bit of extra protection against it and other colds and flus.

Well, the battery on the laptop is about to go flat, so I'm going to call it a day now.....