Apologies

Hi all....

I have been a very bad blogger..... very bad, its been nearly a month!!!! eek...

We have had a busy few weeks in our household. Jose had end of semester exams and assesments, I went into preterm labor and Aaliyah had many of her 6 monthly appointments.

All of Aaliyah's appointments went well. The only glitch was that she had a blockage in her eustation tube (between her nose and ear) on her good side so they were unable to do her hearing test properly. We have another appointment August 8 to be retested. Most likely it was blocked due to a recent cold. If it is still blocked at this next appointment they will do further investigations to ensure that there is nothing more sinister going on. We fully expect it to be unblocked as we have never had this issue before in her many many hearing test.

Her appointment with her ENT went well, he will continue to review her every six months until its time for her CT scan (approx 3 years old) when we will then be able to make more definitive plans re:surgery. If the bones in her ear are too misshapen she will not be eligible for the canalplasty. She will still be able to have the outer ear (Medpor) reconstruction but would not be able to have a canal made which will impact on her hearing. Please pray with us as we believe that the bones and nerves will be normal enough for her to be able to have the surgery.

Another appointment we had just a few days ago was with the developmental pediatrician. She is a specialist that looks at how well children with different disablitities (hearing, sight, autism etc) are going developmentally in comparison to "normal" children. This appointment could not have gone better. She could not stop raving on about how alert Aaliyah is, how social she is and how gorgeous she is (now we think she is gorgeous, but its always nice to hear people outside the family comment!!!). She asked if Aaliyah was saying 10-20 words (apparently that is the standard for 18 months. She is saying HUNDREDS of words. She really is a little parrot. The girl does not stop talking!!!! Takes after her mumma!!!! She was so impressed that we do not need to see her for 12 months instead of the usual 6 months. She gave us the number of her assistant to call should we wish to make an appointment sooner but I really dont think we will need to.

For my own documentation these are a few of the things that Aaliyah is doing at 18 months:

Stringing 2-3 words together, including the very funny "I sit" that comes out as "I S@#t"

Knows pretty much all her body parts, eyes, nose, mouth, head, hair, chin, cheeks, hands, ears fingers, toes, shoulders, tongue, eyebrows, belly. She can also say most of these also We are working on wrists, ankles, eyelashes, shin, thigh etc.

She can count to 5 in english and 3 in spanish (although she has no idea that it is counting). It also helps that she LOVES hi5 and Dora!!!

She has mastered the art of manipulating what she wants to watch (she will tell us "dorethy, hi5, dora). We are strict with the amount of tv she watches so usually she gets a no.. we generally allow for 20-30 mins in the morning and about the same in the evening. She likes giggle and hoot (she calls it hoot hoot), so she will sometimes watch the goodnight song before going to bed.

She is sleeping 12-13 hours overnight!!! goes to bed between 6:45-7pm and wakes between 7am and 8:30 depending on how warm she is, how dark it is and if there are any noises outside, for a kid that can only hear out of one ear that ear sure is amazing. She is an EXTREMELY light sleeper... Im really not sure how she will go once the baby is hear.

She can say every single extended family (grandparents and aunts/uncles) names, and knows exactly who is who, she also knows all the dogs names!!!

She is a show of.... big time!!!!! she will "dance" if we ask her to or sing a song for her, and will march if we sing the marching song. Her favourite song for us to sing is "the wheels on the bus" and will do all the actions. She also makes sure that EVERYONE in the room is doing the actions and will death stare anyone that doesnt join in!!!!

We finally got rid of her dummy!!!! She started chewing holes so it was getting dangerous. I wasnt strong enough just to throw them out so I just didnt buy any new ones, as each one broke I threw it away until we had none left. It took one day for her to stop asking for it and 3 nights for her not to cry when going to sleep (first night she cried for 5 mins, next night 30 seconds next night nothing). I am grateful to be rid of it before the baby comes.

In other news we found out that the hospital has falsely documented Aaliyah's birth details. From how long I was in labor to when I go my epidural to Aaliyah's condition at time of delivery are all recorded inaccurately. The ob had the nerve to tell me at my last appointment that according to their paperwork that I had a textbook labor and delivery. It really hasnt given me much faith and has left me a little apprehensive about this delivery. BUT we have a plan. I will be extremly vocal about what I want. Mum and Jose will be documenting EVERYTHING that goes on whilst I am in hospital, names of the staff, times, EVERYTHING. We will then get it put as a stat dec. so if anything happens in the future we will have proof. I also recommend anyone having a baby to do the same. It is not the first time I have heard of hospitals not recording details properly. And working in health care myself I know that if its not documented it didnt happen. Its really sad that it has come to that but as a mum I will do anything to protect my baby.

In between all of Aaliyahs appointments I have been resting. Not doing any housework, not picking up Aaliyah, no driving. I have also been babysat when Jose has had uni/work. Our families have been amazing in picking up the pieces. I have literally not been left alone since our little scare! I am comforted and so grateful to their sacrifices.

. The night I started having contractions, Jose was at work and Aaliyah was still up. I had had pain the day before but nothing like I was getting. I knew I needed help when I had a contraction I couldnt do ANYTHING. Aaliyah pooped and then fell over and banged her head but because I was having a bad contraction I couldnt do anything.. I just cried feeling like the worst parent in the world. I made 3 phone calls, one to the hospital ( that told me to come straight in, as i was only 33 weeks), one to Joses mum, and one to my mum. My sister answered at my parents and she called Jose and told him to come home, Joses mum and sister came to watch Aaliyah and Mum and Jose took me to the hospital. I look back and laugh now because it was all so quick and almost comical. They all arrived at once. And me being me, decided that before we were going anywhere I was having a shower!!! haha!!! My contractions were lasting one and a half minuts with about a 2 min break in between. Initially the hospital didnt believe i was having contractions, saying that the babys head was just probably bopping up and down on my pelvis. Made me a bit mad considering I have had a baby before and know what contractions feel like. once they hooked me up they realised that i really was contracting. They contacted the doctor to do an exam (before term it has to be a doctor not a midwife, I wasnt impressed I have a general dislike for obs as it is). They also did an ultrasound to make sure everything was in the right spot should I have the baby that night. I asked the doctor to check that I was still having a girl, and he was very confused saying that I might be having a baby preterm and I was worried whether she was a girl still. The way I saw it was if I was going to have her there was nothing I could do about it but if she turned out to be a he I could call someone to go buy some boys clothes!!! I wasnt dialiting so they sent me home, with pain killers to rest. Well the pain killers didnt kill the pain but they did make me feel like I was either extremly drunk or hungover. And rest is overrated when you have a very busy 18 month old to run around after.

This poor baby, I am soooo disorganised for her arrival. Mum has washed all of her new clothes for me, I still have to dig out Aaliyahs old clothes and see what I might use as well as set up the swing, sort out her change table, hang up her clothes etc. I have an army of volunteers coming to help me sort everything out on monday so I would like the little princess to stay put until I have sorted a few things out. I am also yet to pack my bag for hospital, although I have thrown a few things into a pile and borrowed a suitcase from my parents, that has to count for something!

I am 36 weeks today, would like to make it to 37 weeks and then she can come!!!! We joke that with all this rest that she will probably be late haha!!!! (I sincererly hope not!).

SO if you dont hear much on the blog or on Aaliyahs page, its not that i have forgotten everything, I am jsut a little distracted right now. Once everything settles down (haha) I will get back into the swing of things. I am looking forward to getting back into routine, and life back to some degree of normal!!!

Any questions just ask

amy

Thankful

My last few posts have been quite negative. And probably not that nice to read. Tonight its different. I wanted to share the positives that this journey has bought.

I am thankful. Very very thankful. Aaliyah's condition is not life threatening. She will have a full and happy life. Something that I have been reminded of recently. She is not severely disabled is any way. She can walk, talk, run and be as cheeky as the next toddler. I am determined to never take this for granted.

Having Aaliyah has taught me so many things. To not judge others. You never know what someone else is going through until you have walked in their shoes, or at least taken the time to listen to their story. I think as mothers we are so quick to judge other parents for what they do. You know the whole damned if you do, damned if you dont senario. Having walked the path we have over the past 18 months I have had to learn to take away all preconcieved notions of people. I have also learned not to judge people with so called disablities. Not to stare, or whisper. Instead smile, not a sympathetic smile but a genuine "i hope you have a good day" smile.

I have also become more aware of how amazing my family is. Now dont get me wrong. Jose and I have always known that we have amazing families. But since having Aaliyah their support, generosity and love have just been overwhelming. We would not have been able to get through those first few months without them. We really are blessed. They love us and Aaliyah to bits, and have always supported the decisions we have made. They have also spent many hours researching her condition, listening to us (well lets face it mainly me) debrief, been shoulders for us to cry on, let me have my little girl tantrums about how unfair life is... all the while loving us through it. They are also as proud as punch of Aaliyah. Im sure many of you have been subject to listening to anyone of them rave on about how wonderful she is. How blessed is she.

But its not just our family, friends, acquaintances and perfect strangers have all rallied to support us. The fact that we have so many people behind us really blows us away and we cannot thank you enough. The amount of emails and messages of support that I have recieved since starting her page/blog is incredible. But even before then, friends and acquaintances have supported us. Our families from around the country and the world have also rallied to support us. So many people do not have that type of support.

So THANK YOU. From the bottom of my heart. We are so grateful for all the support and prayers that have come our way thus far.

Hug your kids, Tell them you love them, for you never know what tomorrow may bring.

Tomorrow

Our little family

Tomorrow Aaliyah sees her ear doctor. Im not really worried about it. Over the past nearly year and a half we have gone to many appointments so I guess I am just used to it. He will ask the usual questions... any ear infections? how is her speech? what words is she saying? how is she going socially? what is she up to physically (walkinn, running, clapping hands etc)? how is she tolerating her hearing aid?

What bothers me more is the fact that we even HAVE to go to these appointments. Maybe its the pregnancy hormones, maybe Im just tired, but recently I have been feeling angry. Why our girl? Why does she have to be the one that suffers? Its not fair... blah blah blah.... I got over most of this stuff fairly soon after she was born, and just resolved to make the best of it... but sometimes, just sometimes, I get MAD.

Now, I know there are so so many people out there in far worst situations than us. Infact, Aaliyah's ear is relativly minor compared to many. However, at the moment, I feel like having a pity party. There are so many cute head bands that I would LOVE to put on her, she has the most adorable curls... that would look soo soo cute with a sweet little headband with a big flower or bow. Its one of the things that I looked forward to when I found out we were having a girl. Instead I get to put her hearing aid on, forever checking it to make sure that its on properly and having to answer ignorant peoples questions. Gah it makes me mad. Yes, she has a little ear, Yes it is a hearing aid. GET OVER IT!!!!!! Im also sick to death of people that have no idea about our situation judging us for what we are doing. We had a fill in admin girl at work... now dont get me wrong, she is a lovely girl.... however she made it no secret that she thought we were silly for doing surgery because in her words "kids are resiliant, she will get over it".... umm excuse me...... are you a parent? no? then be quiet......

sorry for the whinge.... I already feel better getting it out of my system. I know we are beyond blessed to have such a lovely little princess and are so blessed to be her parents. I just wish I could take of my ear and give it to her.... I would if I could.... she deserves it more than I do.

any ways I will leave you with this poem, i posted it on her page but I really find it comforting, especially at the moment:

Welcome to Holland

by Emily Perl Kingsley.
c1987 by Emily Perl Kingsley. All rights reserved

I am often asked to describe the experience of raising a child with a disability – to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It’s like this……

When you’re going to have a baby, it’s like planning a fabulous vacation trip – to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It’s all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, “Welcome to Holland.”

“Holland?!?” you say. “What do you mean Holland?? I signed up for Italy! I’m supposed to be in Italy. All my life I’ve dreamed of going to Italy.”

But there’s been a change in the flight plan. They’ve landed in Holland and there you must stay.

The important thing is that they haven’t taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It’s just a different place.

So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It’s just a different place. It’s slower-paced than Italy, less flashy than Italy. But after you’ve been there for a while and you catch your breath, you look around…. and you begin to notice that Holland has windmills….and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy… and they’re all bragging about what a wonderful time they had there. And for the rest of your life, you will say “Yes, that’s where I was supposed to go. That’s what I had planned.”

And the pain of that will never, ever, ever, ever go away… because the loss of that dream is a very very significant loss.

But… if you spend your life mourning the fact that you didn’t get to Italy, you may never be free to enjoy the very special, the very lovely things … about Holland.

upcoming appointments, hearing aid issues and a note to other parents

Next week is a biggish week for us. Aaliyah has her 6 monthly check ups with the ENT (ear doctor) and her Audiologist. These appointments are important as they help us monitor how well she is doing against "normal" hearing children, to track her development, detect any areas that need addressing as well as monitor her overall health.They also look at her "good" ear to ensure its not built up with wax, this is important as that ear is her main source of sound. We are very blessed that Aaliyah has a fabulous ENT and a great audiologist. If you are in the Brisbane area and have a child with any ear, nose or throat issues I can HIGHLY recommend Dr. Chris Que Hee. He works both public and private. We are fortunate enough to seem him through the public system so we are not out of pocket any expense. He is very thorough and is more than happy to answer any questions we have. He has also been extremely honest about Aaliyah's condition and the challenges we should be prepared to face. I appreciate this, he doesn't talk to us like we are dumb (unlike many other health professionals we have encountered), we find him very reassuring. Aaliyah's appointment is on Tuesday at 8am. Wish us luck..... we are not morning people in our house, so getting into town, with peak hour traffic, at that time of day will be a challenge for me.

Audiology is up next, on Friday 27th May. Her audiologist tests her hearing in her good ear, as well as test the hearing in her affected ear, both aided and unaided. Her audiologist is also fantastic. She specialises in pediatrics so she knows what to expect from kids. She is also a mum so has empathy as well. She takes her time and is very good at explaining things to us.

We are so grateful that Aaliyah has an appointment next friday as we are having MAJOR issues with her hearing aid. IT IS SO FRUSTRATING!!!!!! The headbands she has to wear with this particular aid are special with snaps on it to hold the aid in place. All of the headbands provided with the aid have stretched over time and now are not tight enough when we put it on. Basically it ends up whistling and making an awful noise everytime we try and put it on her. We have tried the smaller sized band, but it is too small, I washed all of the other bands in hopes that they would shrink. They hold their size for about half a day then stretch out. She only has two head bands that she can wear with the aid. I cannot keep up with washing her headbands EVERY SINGLE DAY. We are hoping to get some more headbands on friday or they adjust her aid so that it does not need as much pressure for it to be functional. As great as Australian Hearing is they are no good at updating hearing aids etc. We had to go through all kinds of rigmarole just to get Aaliyah the aid she has now, so I really don't like our chances of getting more bands. I am hoping they have some kind of sympathy for us and sort it out though. No use having a hearing aid if she cant even wear it. And if she isnt wearing it she is missing out on so much stimulation.

On a different not, I wanted to take a minute (or ten!) to talk to other parents that have children that may be facing their own challenges. Do not always go with whatever the first doctor tells you. Do your own research. Trust your "mummy" (or "daddy") instinct. If we listened to the first doctor we encountered we would have believed we would have no options for Aaliyah, to just expect she would be behind and we would have chopped her little ear of by now. Now, I am not saying to trust Dr. Google for everything, our health professionals know their stuff , but they are human. I know, I work in the industry. I am so grateful that I chose the profession I did as this has helped us greatly in our journey. We have also discovered that it is not what you know but who you know. When we first had Aaliyah, we waited and waited and then waited some more for the promised doctor that was going to come and explain what was going on. We only saw somebody because my sister, Jess has friends that are doctors and on "just happened" to be working at the hospital that I had Aaliyah at. Within 15 mins of her phonecall to him, he was there with a whole team of consultants. Whilst they didnt have all the answers we had hoped to get, it was reassuring to see SOMEBODY none the less.

There have been many instances where knowing somebody has definitely has paid of for us.... I will go into more detail in a later post... but just remember this, YOU are the parent, YOU can help shape your childs future and YOU do not have to always go with what the first health professional tells you. Research, talk to other parents, look online. If you are a parent of a child with microtia, there are several online support groups, including a facebook group. If you are in Brisbane there is also a support group that meets once every 3 months, that has various specialist speaking to help educate and inform parents of their different options. It takes extra effort, but really, who wouldn't go to the ends of the earth and back again for their child?

Well thats my rant over with, sorry if the post was long winded and a bit all over the place, I still have baby brain from Aaliyah and Im also pregnant so probably not the best time to be writing anything of substance :)

Baby, baby, baby ooohhh

Very sorry that this post is a little later than I had planned. Its been a very busy week in our household. It worked out that all my work shifts were bunched together so I have been busy working. Aaliyah is still getting over her asthma/bronchiolitis. Oh and my lovely sisters and mum and a few friends, threw me a surprise baby shower.. was it ever a surprise. I cant believe they kept it from me. It was such a lovely afternoon!!! And we were so so spoiled.

Which brings me to another FAQ, why are you having another baby when you should be saving money/concentrating on Aaliyah. This is another question that gets asked often but I also personally think that it is no ones business. However people are obviously curious so I will oblige.

We always planned to have our first two children close together. Ideally 18 months. When we had Aaliyah, our priorities changed and so did our plans. We tossed around ideas about when the "ideal" time would be to have another etc. We were thinking that sometime after her operation would probably be best but I was still wishing for sooner. They say you should be careful for what you wish for. We are very happy that our little surprise will be joining our little family. She (yes we are having another girl!!) is due July 18 which is also my birthday. I am so excited that Aaliyah gets to have a sibling close in age, something I got to experience growing up. I have two sisters and there is less than 3 years between the three of us. They were my best friends and my worst enemies growing up. But, i will never have a truer ally than that of my sisters. I am so pleased that Aaliyah gets to experience this to. I also think that it will be good for her to see that our lives didn't completely stop because of her condition, that we continued to have the same aspirations as a family.

It will be a big change for us all. Aaliyah is used to being the center of everybody's world. She is the ONLY grandchild on BOTH sides, so having another child to share the love and attention will certainly be a good thing. Whilst there will be an adjustment period, we are looking forward to welcoming our second little princess. Oh and for those of you wondering, the ultrasound tech looked extra carefully at her ears and her kidneys and deemed that it is highly unlikely that she has microtia. All other tests have come back perfect! Looks like we have a very healthy little baby on our hands :)

Another FAQ... answered

Ok....a commonly asked question that people ask is why have I not returned to full time work if Aaliyahs surgery is going to cost so much??? More than a few people have voiced their opinion stating that if we really wanted surgery then I should be working as much as possible to help cover expenses.

Sorry if this statement offends anybody, but I personally don't understand why it is anyone elses concern my "working" status. But in fairness to those just curious and to shed some light as to the "why" I work part time not full time, I will endevour to answer to the best of my ability.

Way back when we started thinking of having children, we discussed when and how often I would return to work. I work as a nurse, so I have some flexibility. At this stage we were saving to buy a house but also looking at starting a family. We did the sums and worked out that we could manage with me returning to work one day per week. This would give us a little extra income, as well as keep my registration up to date.

Once Aaliyah was born, we had to reconsider our options. Buying a house was put on the back burner, providing the best possible care for her became our priority. We made some drastic changes, Jose returned to study (engineering) to ensure a better income for our little family in the long run. All of a sudden the material things we had aspired to, really were not that important any more.

I had taken 9 months maternity leave. During this time we met with various health care professionals, from Ear specialists, to pediatricians, to auditory-verbal therapists. They all had the same opinion. IF at all possible I should remain Aaliyah's primary carer and day care should be avoided if at all possible. Why?? Several reasons.

Aaliyah has many different appointments that she needs to attend, difficult to do so if she is in day care and I am at work. Secondly, in order to optimize speech and language development, she needs alot of one-on-one time, with someone that knows to make sure she is facing you. To be able to monitor her development. She also wears a hearing aid, but not a normal hearing aid. Aaliyah's hearing aid is held on my a headband. It is not an ordinary hearing aid. Most hearing aids are worn on or in the ear and are air conducted, hers is bone conducted, meaning it has to be in contact with her skull in order for it to be effective. Aaliyah is a typical toddler and doesnt always tolerate wearing it, it requires A LOT of persistence and patience to ensure she wears it as much as possible. She cant wear it with a hat, in the car, and often needs to be repositioned. Something that would be difficult for a childcare worker to provide. Please dont get me wrong, I am not knocking day care or daycare workers, they provide a wonderful service. However they are not always the best option for a child with additional needs.

We also need to monitor her good ear. We want her limit, if not all together avoid any infections etc. If she was to get an infection her, she would be pretty much completely deaf until the infection healed. Lots of infections over time have been proven to cause hearing deficits. We want to avoid this if at all possible. No, we do not "cotton wool" Aaliyah, but we are cautious with her, and know from other parents with children in day care that colds/viruses are part and parcel of the experience.

All of that being said, bills do not pay themselves, Aaliyah's expenses are not about to go away. So I have gone back to work 2 days per week. More than originally planned, but enough that it is do-able. We budget, we make do. Aaliyah's needs ALWAYS come first. With the shift work there is some flexibility, I have a WONDERFUL understanding boss. If I am working during the week, my mum (or Joses mum if she isnt working) watches Aaliyah, and on the weekends or after hours, Jose is able to watch her. Its hard working around all of our schedules, Joses, mine and Aaliyah's but we manage. We do not take for granted the fact that we are blessed to have family help watch Aaliyah. It is so comforting to know that if she is not with me, she is with people that understand her needs, her routine and are able to attend to her as best as possible. This is a huge relief and something we do not take for granted.

You might be reading this and think that Aaliyah has been very sheltered and not well socialised. This is far from the truth. Those of you that know Aaliyah, know just how social she is. She attends a weekly playgroup as well as swimming lessons. She also sometimes attends the hear and say playgroup, a playgroup set up for deaf or hearing impaired children. We also make sure that she is provided with a range of learning experiences. She has play dates, goes on outings (parks, museum, shops) as well as engages in creative play at home (painting, colouring, play dough, cooking, pretend play). We read to her ALL THE TIME. On average she is read 20 books per day. We believe that all of these experiences are all contributing to her speech and language development as well as developing a healthy self esteem. We also go to the library every fortnight (the girl loves her books). She LOVES spending time with both sets of grandparents as well as all of her aunties and uncles. She interacts appropriately with other children. She is an observer, she watches what is going on before deciding if and when to join in.

So that is my very loooonnngggg explanation as to why I dont work full time and may even be a little controvertial. I know that some of you may not necessarily agree, but it is our little family and we are doing what we feel is best for US. I know every mum out there does their very best for their family and that is exactly what we are doing.

On another not... not long to go until we reach 400 likes on Aaliyah's page, almost time for an online auction!!!!!!!

Just Ask

I know I just said that I would be doing a new post in the next few days ( and I still will), but I thought that it might be a good idea to put something forward.

Some of you may have questions regarding Aaliyah's condition, her surgery or her hearing aid. Whilst I am doing my best to slowly answer the most frequently asked questions I wanted to put it out there to everyone that I am more than happy to answer any questions that you may have to the best of my ability.

So ask away.. either by commenting on the blog or on Aaliyah's Face book page.

Also we cannot thank you all enough for taking the time to follow us on this journey. We have been bought to tears on many occasions at the thought of just how many people are behind our little lady.

Many have asked: what can I do to help?

Well, firstly, pray for our little princess, that she continues to get good results on all her tests and that she remains healthy and happy.

Secondly, once our facebook page reaches 400 fans we will be hosting an online auction. We have already had many generous offers of donations, so if you see an item that you like, please take the time to bid. Not only will you get your hands on a fabulous product (many hand made with love and hours of work) but you will be helping Aaliyah get one step closer to her operation.

Thirdly, if you have any fundraising ideas that you think might be of benefit, please let us know.

Once again, Thanks for all your support, will be back in a day or two to answer more frequently asked questions :)