Thursday, 26 May 2011
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.
Monday, 23 May 2011
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:
Wednesday, 18 May 2011
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 :)
Monday, 16 May 2011
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 :)
Thursday, 12 May 2011
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!!!!!!!
Monday, 9 May 2011
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 :)
Friday, 6 May 2011
Firstly, I would like to do a shout out to my mum, Happy mothers day mum, I love you so much, thank you so much for your never ending love and support, I can only hope to be half the mother to my children that you are to me xx
I was going to answer a few more FAQs but truth be told, im too tired to think. We have had a busy few days around here, with Aaliyah suffering what they originally diagnosed as bronchiolitis but ended up being Asthma. Needless to say we have had a few sleepless nights in our house!! Thankfully she is on the mend now and is almost back to her normal happy self.
I just wanted to do a quick summary of just how important wearing a hearing aid is to Aaliyah's development. A couple of months back, starting in February, Aaliyah's hearing aid was broken. It was sent in to be repaired and we were told it would be back within 10 working days (2 weeks). We did not get it back for just over 8 due to an issue with the company that makes the hearing aid having supply issues. During this time we noticed several things.
Firstly, Aaliyah's speech and language development all but stopped. She kept on saying the words she already knew, but only said maybe one or two new words the entire time she was without her aid. This was unusual for her as she was generally coming up with one-two new words EVERY DAY. It was very frustrating knowing what she COULD be doing if only she had her hearing aid. Since the day she got her hearing aid back her speech and language development have taken off again. She is noticing sounds around her easier and is not as startled by sudden noises if she has the aid on. We are so amazed at how significantly unaided unilateral hearing loss can affect a person. And we are so grateful to live in a time where it is recognised enough for her to be able to have a hearing aid (although it is still not recognised by the government as being a disability).
The other thing that we noticed when she was without her hearing aid was how often she lost her balance and fell over. The ear is not only responsible for picking up sound but it also helps with balance. If one side is not working properly this will affect balance. This is what we found with Aaliyah. The poor thing would fall over and seem to loose her balance so much easier. Once she had her aid back her balance has improved so much.
On a different note, in regards to her surgery, many people have asked if the government will assist. The answer is no. They regard her surgery as elective cosmetic surgery, mainly due to the fact that it is unilateral. This means that we are not eligible for any sort of subsidies besides Audiology reviews etc from Australian Hearing. They do not assist us financially in any way towards any of Aaliyah's medical expenses. When she was born, we applied for the carers allowance (a government allowance to assist parents caring for children with a disability, including bilateral hearing loss as well as other disorders such as ADD, it is only a small amount but every bit helps). We were declined. Due to the fact that her condition can be "managed" here in Australia they are also not contributing to any of her medical expenses overseas. Whilst we understand that her condition is not considered major, there are still many unexpected expenses that we are forced to meet. From parking at the hospital for her many appointments to paying for her speech and auditory verbal therapy/assessments. We have also paid for her to see private paediatricians at times when the public wait list was too long. We also pay an annual fee to Australian Hearing for her check ups etc. Whilst these expenses might seem small, they certainly do add up.
Enough rambling for now.. I hope these posts are actually informative and not too long and boring... let me know... feed back is most welcome...
Monday, 2 May 2011
Aaliyah reading her books whilst wearing her contact mini hearing aid
This is a very recent picture of Aaliyah, wearing her hearing aid, just on a different headband
My dad, holding Aaliyah on the day she got her first hearing aid
One of the last pictures we have of Aaliyah wearing her old bone conductor hearing aid!
Over the past year or so, we have noticed that some of the same questions keep on coming up. My aim is to slowly answer these, so I don't keep on boring you with super long posts!
One of the big questions we get asked is why we have chosen surgery and why not leave her ear as it is. One comment many people make is that they don't really notice it and that she is a girl so she can just wear her hair long.
Before we had Aaliyah, I would have been one of those people, because lets face it, it isnt a life threatening abnormality and yes, she is a girl so wearing her hair long is always an option. But thats just it, we want her to HAVE options. We want her to walk with her head held high, knowing that she has every opportunity that every other little girl has. To wear her hair in a pony tail and know that people are not going to stare or comment (and believe me, the comments have already started coming, thankfully she is too young to notice). We also want her to be able to HEAR, in BOTH ears. To be able to cross the street and hear a car coming at the same time as people of normal hearing.
It has also been suggested that adults with hearing loss of some degree whether unilateral (one sided) or bilateral (both) are less likely to get a university degree and are more likely to spend their life on minimum wage or unemployed. Would YOU want this for your child? Most parents want their child to succeed in every aspect of their life. We are no different. We want Aaliyah to walk through life knowing that she can achieve anything she sets her mind to. Yes, these things are possible if we left her special ear as it is. But it will be a lot more challenging. That is not what we want for our daughter.
Another common question is why America, surely there is something available in Australia.
We are very fortunate to live in this beautiful country. We have a fantastic health care system that avails good health care to all citizens no matter their socio economic status. We have researched our options, both in Brisbane (where we live) and throughout Australia. We have met with many healthcare professionals from all over Australia. At this stage their is NO doctor in Brisbane that performs the medpor reconstruction (the outer ear). Aaliyah has a wonderful ear doctor. We asked him why he doesn't do the surgery or why others in Brisbane don't do it. He said that the ear is a very tricky organ to work on and microtia kids are exceptionally difficult. He said that he would rather see and work on 1000 cochlear implants than do surgery on one microtia child. Microtia is rare, and it is only recently that people have started to perform reconstructive surgery. We have talked to other doctors in Brisbane and they all gave us the same plan , chop of her ear and put a prosthetic ear on. To many people this would make sense, but not to us. If we were to "chop of her ear" and put a prosthetic ear on, everytime she goes swimming she would have to remove it. Could you imagine a her at her school swimming carnival, having to ask her teacher to hold her ear whilst she races. Or when she is at a sleepover, and she takes it of to go to sleep. Whilst the other girls just worry about cleaning their teeth she has to clean her ear and the attachments on her skull. Never mind the fact that chopping her ear of would not help her hearing in anyway.
We met with a well known ear surgeon based in Melbourne. He is willing to perform recontructive surgery, however uses a method that requires up to 6 surgeries and has very mixed results. It involves taking some of the childs rib and shaping it into an ear, he does not perform the canalplasty, the other part of Aaliyahs surgery. He also will not operate on any child under 8 and he believes that a child has a right to chose whether they want surgery or not. This goes against all research that suggests that optimal hearing must be achieved by age 5 in order for optimal development. Needless to say we were not impressed.
Drs Robertson and Reinisch are the surgeons from California that will perform Aaliyahs surgery. They have have over 20 years experience performing this surgery. They are, what we believe to be, the best possible option for Aaliyah. They have performed surgery on children all over the world with a 100% success rate.
Well I think I have bored you with enough words for one post, in the following posts I will continue to answer FAQs and explain what the surgery actually involves etc. I will also explain the importance of her hearing aid.
Sunday, 1 May 2011
We had a very low key christmas that year. Jose was in denial and I just blamed myself. Was it something I ate? Was I exposed to something? Was it the antibiotics that I had to have to combat an ear infection?
I guess we were just grieving, something that we later found out is perfectly normal. Grieving for our daughter, for this unexpected journey, for the future that was oh so scary. To say it was a hard time is an understatement. I was still trying to recover from the delivery, then trying to cope with this unknown medical condition.
So we did what most parents do these days, we Googled. Joses mum was the one that discovered that our daughters condition had a name. Microtia. With further research we discovered that there are many options available for children with this condition. We were excited!! ok... we can do this, they can fix her ear and all will be well.. WRONG.
Then the letters from the hospital started coming. And kept coming. First appointment up was with the audiologist. We were naive. We expected that although she had a little ear that the hearing loss in that ear would be minimal . We were wrong. "Normal" hearing can hear up to 20 decibels. Aaliyahs little ear could only hear to 80, a 60 decibel deficit. We were given our options as far as audiology were concerned. They stated that she could have a bone conductor hearing aid, or we could leave it as she had one good ear and plenty of people have survived with hearing on one side. We opted for the hearing aid. This is due to the research that we had done. We had found that there were indeed many detrimental effects of single sided hearing loss, including 20 times more likely to end up in the emergency department, speech and language delays and the list went on. Aaliyah was 9 weeks old when she received her hearing aid. We have since upgraded to a better model but the fact that she has been aided since so young has really been beneficial.
I wont bore you with all of the appointments that we attended in the first few months but will include the list:
*Paediatrician (x3 in the first 6 months, now every 6-12 months)
*ENT (Ear, Nose, Throat, x2 in the first 6 months, now every 6 months)
*Plastic Surgeon (the one we saw, we hope never to see again!)
*Opthamologist (Eye doctor)
*Audiologist (x4 in 6 months, every six months since)
*Auditory verbal therapist
*Hearing loss support worker (she was sooo wonderful and such a support)
*We were referred for Aaliyah to have a CT however it would have to be under general anesthetic so we have deferred until she is older.
During this time I was still seeing a physiotherapist and a gynecologist due to my injuries during delivery.
To say it was a stressful, tiring time is an understatement, but we got through it. We had support, our families were and continue to be wonderful. We really are blessed.
What we learned from all of these appointment was that besides her ear, Aaliyah is find. Something they didnt think possible. Most children with Microtia have some sort of other medical condition or syndrome attached to microtia. We will have to keep an eye on her kidneys as they are the often affected with microtia children. However so far, all is good, her scans showed perfect kidneys as did her blood tests.
A note about the plasitic surgeon. We were full of hope when we saw him (when Aaliyah was about 3 weeks old). He took one look at her ear and said , "if I were you, I would just chop it of and put a prosthetic ear on " yes those were his exact words. We were crushed, then we were determined, we would find a better option for our daughter.... so the research continued...