happenings

Happenings:

Just wanted to say a quick hello and let you all know that this little blog of ours is still chugging along. Life seems to have a habit of getting away from me and before I know it, it has been 2 months since an update!!

We are holding a big trivia night next saturday, which we are looking forward to. It is sold out!!!

Thank you to all that continue to faithfully follow us on our journey. Will write a proper update a little later on x

A mishmash of happenings

Hello, is anybody there??

I have to ask because I rarely write a post!!!!!

Life lately has gone on, full speed ahead. No rest in this household.

• Aaliyah got a good report from her Auditory/Verbal Therapist. At 2 years 7 months she was talking and comprehending at a 3 years 8 months. To say we are proud is an understatement.
• This winter has been hard, Aaliyah has had 3 admissions and 4 trips to ED, all for her asthma. It has been hard keeping this energetic toddler inside most days, I am so grateful that spring is finally here. We are already spending more time outdoors much to the delight of Aaliyah and Dass.
• Her ENT confirmed that Aaliyah will continue to be frightened of sudden noises due to her inability to know which direction the sound is coming from. 
• The annual microtia/atresia conference is happening in 2 weeks and we are excited to attend, learn more and spend time with other families with children just like our Lia. 
• My Aunty Raewyn (in New Zealand) hosted a fundraising dinner for Aaliyah raising $3000! Thank you so much x

I have so much I want to write, want to say, but I have just finished writing a research paper and im still recovering from a virus so I am feeling a little uninspired at this time. Will hopefully write more in the coming days. 

Its been a while. Too long in fact. I havnt kept up with the blog and I wasnt too worried as I thought that our families were the only ones to read it. But having had several people comment that they have missed our blog has encouraged me to update.

We have had a crazy crazy crazy few weeks in our household. In order to keep this brief I will write down the last 6 weeks or so's activities, in no particular order:

• Aaliyah has had not one but TWO admissions to hospital for her asthma. Its winter, so as soon as the cold comes so does the asthma. We try not to go out before 9am and are always inside by 3:30/4pm at the latest. I hate having to restrict our activities but I hate watching her struggle to breath more
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• We moved house!!!! HOORAY!!!! Both the girls are so much happier, we have so much more space and a huge patio and backyard. Its an easy 5 minute stroll to the park and only a 2 minute walk to my parents house. We are saving so much on petrol as we are closer to work/uni/shops/music/playgroup etc. 

• The week of moving house we all came down with a nasty gastro bug. It was horrible, one by one we got sick. It took nearly 2 weeks for everyone to get better. The bug started 6 hours after Aaliyah's first hospital admission. 

• We then all got tonsillitis, well 3 of us, Aaliyah was spared, but Jose, Hadassah and myself were all miserable, thankfully we recovered quickly once the antibiotics kicked in.
• Exam time is upon us and Jose and I are busy trying to play catch up with our classes. Never a dull moment in our house, we both work, we both study and neither girl goes to daycare!!!!! Its the ultimate juggling act!!!!!

• We have started going to a Mainly Music class on a friday morning and both the girls seem to really love it. Its so good for their learning and socialization. 
• Aaliyah's hearing aid keeps on playing up. We have our name on a list to try a different hearing aid, a BAHA on a softband. Hopefully this will happen in the next few weeks and we will have it on loan for 3 months. All the feedback we have heard about this hearing aid has been very positive. 
• We continue to notice that Aaliyah's behavior is much worse if she does not have her hearing aid on. She is booked for another hearing test in July, I am interested to see how good her hearing is in her "good" ear.

• Brisbane artist Tracey Kellar has donated a wonderful print for us to raffle. The raffle is continuing until the end of June and it seems to be going well. We are continually humbled by complete strangers being willing to help. 
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• The butchers at Meat @ Metropol continue to be amazing supporters. They will be working closely with us as we continue to work out details for our big dinner/auction. We cannot thank them enough.

• Aaliyah and Hadassah are flower girls for Jose's sisters wedding  on June 16. Jose is a groomsman and I am a bridesmaid, it will be an amazing day and we are looking forward to watching Jocelyn and Andrew become husband and wife. We have been busy in the last few weeks doing last minute bridesmaid/groomsman duties :)

• We have also recently found out that Hadassah is lactose sensitive, since putting her on a lactose free formula (she self weaned at 9 months) she has been a new baby and has finally started sleeping at night. 

• Aaliyah has another auditory/verbal therapy review on June 20, I am looking forward to seeing how she is progressing and if their are any areas we should be concentrating on. 

Thats all for now, be back in a few days detailing more fundraising updates etc.. xx

The club

Aaliyah celebrating her second birthday a our playgroup

After Aaliyah was born, we had a lot of support services offered to us. One was a hearing loss support officer/social worker. Her name was Isabel and she was wonderful. She told us about the Hear and Say Centre. She mentioned that they had a play group so when Aaliyah was around 6 weeks old, we went to have a look.

I don't know what it was but I looked around playgroup and felt " I dont belong here". Denial, it was. I still held hopes that Aaliyah would have some hearing in that ear and that it was all a really bad dream. Even though the play group was well run, in a centre that could double as a proper kindergarten, we didnt go back.

A year goes past in a daze of little sleep and a lot of doctors appointments. I realized I needed to find more structured activities for Aaliyah.

So I sought out a playgroup. What better way to meet other mothers as well as give Aaliyah the socialisation that she needs.

So, I called up Playgroup Australia, gave them my preferred day and the list of locations and before I knew it, we were at our first playgroup.

I cant say it was a horrible experience. But it certaintly wasnt the best. All the mums were at least 5-10 years older than me, making me feel like a child bringing a child. They were all full time stay at home mums, with cleaners, and tennis club on thursdays. I was a 25 year old working mum, no paid help and the only thing we ever had on Thursdays were doctors appointments. Dont get me wrong, they were nice enough, it just wasnt for us.

And then I remember The Hear and Say Center. We went one Tuesday, and then the next and then the next. We belonged. This was our club. Our place.

Our playgroup at The Hear and Say Center is AMAZING. I wish I could put into words just how much this little group means to me but I cant. So I will tell you a little bit about it.

The playgroup is staffed by 2 fully trained Auditory/Verbal therapist that work for the center. On top of that there a several volunteers that help out week in week out. The room is set up like a pre-school. There is a home corner, Blocks, Craft stations, Playdough, Reading corner and even itty bitty toilets. And there is an outdoor area set up with Painting, a sandpit, trikes and other outdoor toys.

Free play, followed by morning tea (fruit), the a story read using the help of a FM system (amplifies the sound for the hearing impaired), then music time. Aaliyah loves it, its her favourite day of the week.

But that is not why I love it, REALLY love it. I love it because of who I have met. The people. We all share one thing in common. We all have a hearing impaired child. Their is a comraderie about us. From Cochlear Implants, to hearing aids to microtia, we all share one thing in common. We come from all walks of life, some work, some stay home, some younger, some older, some with one child, some with 4. But we are all linked. We understand.

Whilst I would have never chosen this journey, it was chosen for us. And I am glad.

The Club. And I am a proud member.

PS: this month is the Hear and Says "Butterfly Appeal" month. Please head on over to their website for more details on how to help this wonderful organisation

www.hearandsaycentre.com.au

PPS: Aaliyah is the poster child for this years microtia/atresia conference!!!!!

Overwhelmed

Thats how I have been feeling.....

We have about 16 months until we would ideally like to have Aaliyah's surgery, and a LONG way to go fundraising wise.

I need to get better with my time management. I have just been feeling so so so overwhelmed with day to day life. WORK, UNI, STUDY, FUNDRAISING all whilst trying my best to raise 2 kiddos 2 and under, one of whom still likes to grace me with her wail at least once a night. Neither of the girls attend daycare (personal decision, Aaliyah would not do well in a day care setting). Yes I have ALOT of help, Jose is wonderful and we have very supportive family. However the day to day stuff, its all on me. And thats ok, it really is, its just tiring.

I could give up uni but I would lose all of my credits. They are changing the system, so if I dont keep at it, I will loose a whole years worth of credit. So I will continue.

Financially, I need to work. And no, not a "need to" so we can have a nicer car/go on a holiday/buy new furniture kind of need. Its a "need to" so we can pay our bills/buy groceries type. Its only for a season, but its hard. We have everything we need and more but working, especially the shifts, is taking its toll on me. Its tiring me something chronic. But its not an option of giving up so I will continue.

And fundraising, well unfortunately that gets put on the back burner sometimes, as much as I hate that it does. We still have our usual fundraisers going (selling cabury chocolates) but I really need to get on top of organizing something a little bigger.

What can I do to make it easier/more workable?

Well at the end of April/Early May we are moving. So more work, but the payoff will be fantastic. Our new house is literally a 5 minute walk to my parents house. Its a better area, with a great park minutes walk away. And its a house!!!! With a lovely undercover area and a huge back yard. We are so so so excited to move. Whilst our townhouse has been great, we really have out grown it. The girls need a back yard, we will be closer to work/uni/parents thus saving money on petrol. Its a single story, so no more running up and down the stairs, rushing when I am upstairs for fear of what is going on downstairs!

The downside to the move is that our trivia night is being put of till the end of May. Which I suppose could be a good thing as this will allow me to more time to organize prizes, tables, raffles etc.

The other thing that I am doing/going to do is let my housework slide a little. Those of you that know me, know I like to keep a clean and tidy house. Let me tell you, it is so so hard in our little unit that has TERRIBLE storage, next to no cupboard space. We do not even have a proper pantry. This will be easily remidied once we move as our new house has a LOT more space!!! Until then I am just going to have to accept that our house is not going to look "perfect". Clean, yes, tidy?? sometimes. Perfect?? no.

Im also going to use moving as a perfect excuse to declutter and get rid of as much stuff as possible. So yet another reason why moving is a win-win.

I am also trying to set myself an earlier bedtime. The girls go to bed between 6:30 and 7pm. I am giving myself until 8pm to catch up on housework. After that 2 nights per week I will do my uni work, 2 nights I will be at work and the other three I plan on relaxing by either watching trashy tv shows or reading. My plan is to be in bed by 9:30 with the light out by 10pm. All doable except on work nights. Those nights I get to bed between 12:30 and 1 am *yawn*

In saying all of this I have to say it is ALL WORTH IT. For them. For my little family. I know that in a few years time, when I have finished uni, when Jose is finished uni, when Aaliyah has had her operation, IT WILL HAVE ALL BEEN WORTH IT. Until then, I shall soldier on, with a diet coke in hand.

Now, I know that it is mostly family that would read this (I can tell by the stats, my average post gets about 10-15 views, haha), so please remember, I am not whinging that you dont help enough, nor am I asking for more help. I am so blessed to have you all beside me helping as much as you do and I am eternally grateful for that. I love that our girls get to grow up surrounded by both sets of grandparents and all of their aunties and uncles, something Jose and I both missed.

AN AALIYAH UPDATE

Aaliyah continues to amaze us as well as her therapists and doctors with her developmental milestones. She is such a chatter box and has the memory of an elephant. As far as speech and language development are concerned she is still above average (as in above average for a fully hearing child). We are so pleased that this is one less hurdle that she has to cross.

However we are noticing more and more how terrible her directional hearing is. If we are not talking to her on her good side, chances are she will not respond or will respond inappropriatly. This is frustrating for both her as well as whoever is trying to communicate with her.

Wearing her hearing aid over the past few months has become a bit of a struggle. The band itself is quite thick, and quite hot to wear. She now tells me "no hearing aid" when we try to put it on her. We have started to add bows etc to it to make it seem more pretty to her, to encourage her to wear it more often. I lose track at the amount of times per day I find it lying in some random spot in our house and chase her down to put it on again.

She also seems to think that Hadassah's headbands are hearing aids. It is so hard for me to watch her little face look confused as to why her sister doesnt have to wear a hearing aid but she does. It really breaks my heart.

Aaliyah and Hadassah have such a special bond, I am so grateful for that. They light up when they see one another. We have seen very little jealously on Aaliyah's behalf. For that we are truly thankful.

In the next month or so Aaliyah will be attending more of her six monthly reviews. I am interested to see how they all pan out.

Stay tuned for tomorrows post about her surgery

xxx

Thankful

Hi all,

Just a quick update:

Looks like the cost for Trivia night will be somewhere between $20-$30 dollars. Hiring a hall will cost around $200 and we also have to allow for some snacks. We are hoping to have some good prizes donated as well as one or two cash prizes.

My cousin Adrian is yet again helping our fundraising efforts, thanks to his high school friend Jack. Jack is a magician and we (Adrian, Jack and myself) are currently putting our heads together in how we can put together a magic show fundraiser. As I know more I will let you all know. For those of you in Sydney, Jack has a website www.magictobelieve.com.au

On a different note, we were shopping today and we were in the parents room, making a stop so that our toilet training Aaliyah could use the bathroom. On our way out, another little family walked in. Similar to our family they had what appeared to be a 2 year old as well as a baby in the pram. Difference was the 2 year old little girl had very little hair, most likely the result of Chemo, meaning that this poor little lady is facing one mighty big battle. Seeing that put a lot of things in perpective for me. Yes, it is frustrating that Aaliyah has to deal with a complicated, harder to fix hearing loss. Yes, its going to cost ALOT of money to fix it. But at the end of the day, it is not life threatening, it is not going to cost her her life. Yes it affects her quality of life to a small extent, but nothing like if she was to be battling the poison that is cancer. That little girl has stayed on my mind all afternoon. She has served as a timely reminder that no matter how hard things may get, someone is always doing it harder. Please remember this little girl in your prayers. She weighs heavy on my heart and mind.

xxx

Hi all, still here...

I just wanted to post a little about what has been going on.

Aaliyah continues to far exceed her doctors and auditory-verbal therapists expectations. We are so thankful for the progress she continues to make.

I would also love to take the time to tell you all about a wonderful shop that has taken on "Aaliyah's Journey" as their cause. Meat at Metropol is a little family owned butcher shop, located in Carindale on Brisbanes southside. They (in my humble opinion) have the best Ham that one can buy. They are promoting Aaliyahs page/blog on their website as well as have a tin set up for donations. They are also donating all the meat for when we hold our sausage sizzles. They have gone above and beyond what we thought ANY person/business would do. They are also donating a signed Broncos Jersey (mint condition, 20 years old) to our Auction that will be taking place later this year.

So, I am asking you, IF you live on the southside and are after quality meat, PLEASE pop in to the boys at Meat at Metropol and tell them Aaliyah's Journey sent you :) We are so thankful for their giving hearts.

After you have bought your meat, pop on over to Brumby's, yet ANOTHER sponsor. They will be supplying all of the bread for our sausage sizzle (date to be advised).

Our biggest fundraising news is that we are holding a trivia night starting at 7pm Saturday April 28. Prizes/Raffles/Market Stall. We will be providing light snacks with soft drinks and water available to purchase. I have already organised a host for the trivia night, but if you are interested in helping man one of the stalls, sell raffle tickets or organize a group please let me know. I will be organizing tickets once the location has been finalised. I will be making some phone calls tomorrow.

Thanks in advance. More tomorrow, once I have more details.

xx

I have been slack... so so slack, its terrible. I need to do better, for Aaliyah, for her followers and for myself. I have a million and one excuses why I have been slack but really, if I have the time to sit down and watch my kitchen rules and revenge I have to time blog.

So, no excuses, just my paltry apologies and a promise to do better.

I am spending much of tomorrow brain storming fundraisers and would love your imput. I am also looking for a few helpers. If you would be interested just let me know, we would love your help.

I will be back in the next few days. I have a few posts that need to be written, an Aaliyah update, a hear and say update, fundraising activites, new doctors update and Aaliyahs sponsors and businesses that have gotten behind her cause!.

For those loyal few that keep reading despite how sporadic it is, THANK YOU THANK YOU THANK YOU...

Much love, until tomorrow.. .xx

Just a quick update to let you all know that we are still here..

Aaliyah has an appointment with another plastic surgeon tomorrow. Not holding out high hopes for anything new but will be good to get another opinion.

We hope you all had a very merry christmas, and have welcomed this new year with open arms.

Will post more tomorrow night after we have seen the new doctor.

We have big plans for 2012, looking forward to sharing them with you all in the coming days/weeks/months!!