30/05/13 - Back to the Doctor

The two weeks of waiting to see what would happen with Ellie's swelling was up, and it was time to go back to Doctor Naiker. It was quite good timing, because oth girls were showing signs of their colds getting worse, so I could kill two birds with one stone.

The swelling really hadn't changed at all. One of the remaining stitches had finally fallen out, which seemed to make a little bit of a difference, but there was still a significant lump between her gum and lip. Doctor Naiker was hopeful though that once the last stitch came out the rest of the swelling would go away. At least it didn't seem to be causing her any pain, so I was happy enough with that. We would see Doctor Kimble in a month anyway.

He checked her ears, throat and chest, and I wasn't surprised to hear that she had infections in all of them. I'm so used to infections with Sophie it just seems part and parcel of a cold. Hopefully though Ellie will be better at fighting them off.

We walked out with antibiotics for both girls, Sophie having a chest and throat infection as well. Good thing I'm a pro at administering drugs!

29/05/13 - The Terminology of Clefts

When you have a child with a disability or illness, you become an expert in the field pretty quickly, out of necessity. You are their advocate, you need to know the important questions to ask on their behalf to ensure the right care, and without even trying to you start talking like a doctor. I experienced this with Ellie - becoming fluent in doctor-speak, and its no different with Ellie's journey. Sometimes I forget that not everyone knows what a columella is, but for the most part I always try to explain things in "normal" terms. But for anyone that's interested, here's a few terms that we use in our everyday lives now:

Acoustic nerve: a nerve in the inner ear that sends sound information to the brain. This is the area that ellies hearing fails in, because the nerve is blocked by fluid is her ears

Alveolar ridge: the bony ridge where the teeth are held in the jaw. Ellie is missing two pieces of this, which will need to be built with a bone graft later on

Articulation: the ability to use the mouth to make speech. Ellie can't articulate correctly because of her missing palate and different sucking technique

Audiologist: a person who studies sound and hearing

Auditory brainstem response: a test that measures the response of the brainstem to sound. This is the one that Ellie passes, showing that her hearing is only affected by a blockage

Bilateral cleft: a cleft on both sides of a lip or palate. 

Bone graft: a surgery to insert bone in to the affected part of the jaw. This is the part of Ellie's journey that scares me the most, as its done when she's about eight or nine years old and will well and truly know what's going on

Cleft: a split or separation

Cleft lip: a congenital split in the upper lip

Cleft palate: a congenital split in the roof of the mouth

Columella: the front part of the tissue between the nostrils. Ellie's is virtually non-existent, which is why her nose is currently so flat. She will have surgery next year to lengthen it and hopefully improve the appearance of her nose

Conductive hearing loss: a loss of hearing caused by a problem in the middle or outer ear. This is what Ellie has, hers is caused by a blockage of fluid in her ear and changes in severity from day to day, depending on the amount of accumulated fluid.

Congenital: born with

Craniofacial: relating to the skull and face. 

Cuspid teeth: the pointed canine teeth on either side of the front teeth. Ellie won't have these, because there is no jaw there for them to grow from

ENT: an ear, nose and throat specialist.

Electrodes: soft pads that stick to parts of the body during some tests. Covered wires connect the electrodes to machines. 

Eustachian tube: a tube that runs from the middle ear to the back of the throat and allows air pressure on both sides of the ear drum to stay equal. This is where the fluid builds up in Ellie's ears

Fistula: an abnormal opening or gap. Fistualas are a common complication of the palate repair and often the child needs a second repair to close them

Functional: working properly

Grommets: small tubes inserted in the ear to drain fluid. Ellie will have the done with her palate repair, and they will be replaced regularly as she outgrows them

Hard palate: the bony part of the roof of the mouth, behind the teeth. Ellie has a bilateral cleft in her hard palate

Hypernasality: a speech problem in which a persons voice sounds too nasal. It is often caused by an opening in the palate that lets sound move through the nose

Hyponasality: a speech problem in which a person has trouble producing nasal sounds because the voice sounds can not move in to the nose

IV: a tube in a vein that allows food, fluids or medication to pass directly in to the bloodstream

Inner ear: the innermost part of the ear where sound information is sent to the brain through the acoustic nerve

Malocclusion: a poor alignment of the upper and lower teeth. This is very common in cleft affected children, because their jaw hasn't formed correctly to support the teeth

Mandible: the lower jaw bone

Maxilla: the upper jaw bone

Middle ear: the ear drum and space behind it

Nasal: relating to the nose

Nasal air escape: the escape of air through the nose when pronouncing consonants

Nasal ala: the part of the nostril joining the cheek

Nasal regurgitation: the escape of food through the nostrils during feeding. This happens with both milk and solids, and presents quite a big mess. It also means that Ellie doesn't really get as much food as it seems because she loses a lot out her nose

Nasal septum: the wall of tissue that divides the nostrils. This is where Ellie got a lot of sores with the haberman teat rubbing in the beginning

Nasendoscopy: a test that uses a small camera to record how the soft palate is working

Occlusion: the way the upper and lower teeth fit together

Occupational therapist: a person that helps people with daily care activities like feeding and bathing. Ellie will see an OT for development issues

Orthodontist: a dentist who uses braces and other devices to correct problems with teeth and jaws. Ellie's orthodontist will play a huge part in later years

Otis media: a middle ear infection. The build up of fluid in her ears makes Ellie more susceptible

Otoacustic emissions: a test that records how the inner ear responds to sound. Ellie's audiologist will perform this test regularly to monitor her hearing loss

Outer ear: the part of the ear you can see and the ear canal

Palate: the roof of the mouth, where Ellie's cleft is.

Plastic surgeon: a doctor who repairs the function and appearance of parts of the body. Doctor Kimble is Ellie's plastic surgeon and a bit of a hero in our house

Pre-maxilla: the centre of the bony ridge that holds the teeth

Prolabium: the central part of the upper lip between the mouth and nose

Soft palate: the moveable part of the roof of the mouth behind the hard palate. It is critical for speech. Ellie's cleft is so severe that she has no soft palate at all. 

Speech pathologist: a person who evaluates speech and helps improve speech. Speech pathologists are also the first point of call for feeding issues, because the way a baby feeds affects their speech later on. Ellie has two incredible speech pathologists in Hobart.

So that's the basics. Don't worry though, I will still try to speech human rather than doctor on the blog, but now if I drop the odd prolabium you might just know what I mean!

28/05/13 - Double Whammy

Poor Ellie is having a bad week.

Not only does she have her first cold, but she's teething as well. For once the cleft doesn't really worsen the effect of the cold, she's just more susceptible to ear infections because of the fluid build up. The problem there is knowing when she has an infection. Sounds easy right? Red ears, pulling at her ears, temperatures, grizzly... Until you chuck in the teething, which has exactly the same symptoms! 

So far she's holding up well though. Fingers crossed she has a better immune system than her sister and shakes it quickly!

26/05/13 - Financial Challenges

Raising a cleft-affected child doesn't come cheap. When you first get the diagnosis everyone tells you "don't worry, we have a great healthcare system, you won't have to pay anything" but it's not really true. Sure, we're blessed to live in a country that offers free hospital care to everyone, so we don't have to make the gut wrenching decision of whether or not to terminate like they do in places like the United States, but there are still a load of unexpected out of pocket costs that Medicare don't cover.

The most obvious cost of course is feeding equipment. So far, almost five months in to this journey, we've spent over $100 on bottles. Yes, you could easily spend that on regular bottles if you wanted to, but I bet you'd have more than the three bottles that we have. All up our equipment costs - bottles, splints, and syringes - have come to $166. We have private health insurance that claims to pay for essential medical equipment, but they don't classify any of this as essential. Apparently we could have opted to use a nasal gastric tube for feeding which would have been supplied by the hospital free of charge. But what parent would chose that when its not necessary?

Don't be fooled in to thinking that medical treatment is covered 100% either. The truth is, if the doctor isn't in the hospital at the time you see them, then you're going to pay for the privilege. The only exception to this is Doctor Kimble, who is nice enough to bulk bill for his private visits. Not even holding a healthcare card gives you much advantage. We got a miserly $20 discount at the opthomologist. Once her teeth come through we will have dental bills to think of too, and dentists are renowned for through-the-roof prices.

Don't get me wrong, the healthcare card is a bonus, it reduces the cost of prescription medications after all. But a lot of the medications Ellie needs aren't available on a prescription, and we have to pay the full retail price. They don't come cheap either, some of the medications we've had to by have been $15 or $20 each, just for a weeks worth.

Then of course there's the cost of all the travel. Sure, the patient transport scheme rebate some of the travel costs, but only for fuel. Just the petrol alone has come to over $700, and we've only been reimbursed $300. Then there's parking, at $25 a day, and meals. Thank god for Ronald McDonald House for free accommodation. I can't imagine how we would ever afford the trips if we were paying for somewhere to stay.

But the biggest financial cost has to be lost income. And there's no reimbursement for that. Every time we need to go to an appointment, or to Hobart for surgery, Drew needs to take time of work. He doesn't get sick leave or annual leave because he's casual, so we simply have to go without if he's not working. The total cost of this? $5800. That's a small fortune to us.

If you ask centrelink, a cleft affected baby is not high-needs enough to qualify for a disability payment. I challenge them to live our life though and then say that. I challenge them to raise my babies on the tiny income we have, when so much goes towards Ellie's care. They say go and get a job, but I doubt any employer would be too happy with me having 33 sick days in four months. 

The funny thing is, they pay 100% child are benefit for Sophie, because her sister has high needs. But when it comes to financial support, she doesn't have high needs. Work that out.

Of course, we wouldn't change Ellie for the world. We love her, and we'll do what ever it takes, spread as much as it takes, to get her the treatment she needs. But it shouldn't have to be this hard.

24/05/13 - Opthomology

The stickiness of Ellie's eyes had been a problem since birth, but everyone we saw kept putting it down to being a complication from her cleft palate. It wasn't until Doctor Kmble noticed it during surgery that we found out that it was something different.

The opthomologist in Hobart had suggested it was a blocked tear duct, but wanted us to see someone closer to home to check it properly. Doctor Naiker sent a referral to a clinic in Devonport, and we made an appointment to see Doctor McKay.

Ellie's eyes were looking quite good before the appointment, but I'd made sue to take some photos of them at their worst just in case. Doctor McKay had a look at the photos and inside Ellie's eyelids, and confirmed the original diagnosis. He repeated that in most cases it clears by itself, otherwise it needs to be flushed.

He said that because of Ellie's craniofacial development issues her treatment might be slightly different than normal, but that he still wouldn't recommend we do anything until after she turned one. He sent us away with an appointment to come back next January, and we paid $120 to be told the same things we already knew. We could have saved our money and spent it on more bottles!

22/05/13 - Unbelievably Proud!

Feeding is one of the biggest problems that Ellie's cleft presents us with. Because she is missing the roof of her mouth, she's not able to suck properly on a bottle, and the more she tries, the more tired she gets.

We're lucky today, because there are quite a few different options available for feeding a cleft-affected child. Traditionally they would need a nasal-gastric tube until they could feed by themselves. Now we have access to bottles with specially designed teats to Make sucking easier, and bottles that can be squeezed to help with the over-exertion.

These don't come cheep though. The bottles range from $30 to $60 each, and there is no financial aid to buy them. Also, there's no way of knowing which bottle will work best until you try them. With Ellie we knew that her cleft was going to be severe, so rather than wasting time and money trying the different bottles available, we simply bought the most advanced, the Madela Special Needs Feeder, also called a Haberman.

The Haberman has a specially designed teat, it's longer than a normal teat, and you can squeeze it to help with feeding. It was a good choice: Ellie was able too feed with it easily from the start, and hasn't had any feeding issues at all. But it's also the most expensive in the range.

Like with any bottle, the teats wear out after a few months use. The Haberman also has a small valve to regulate milk flow, and that had also started to warp on ours. To replace the parts in both of our bottles was going to cost over $60, which is a lot of money when you have limited income.

Before I ordered the replacements though, I decided to do some investigating. Her mouth and tongue are a lot stronger at almost 5 months old, and I was interested to see what else might work. I asked around and found some other teats, Chu Chu teats, were highly recommended, so I ordered these instead.

While I was waiting for them to arrive I tried something. I got a normal skinny-neck teat, and cut the hole a little bit bigger, so that the flow would be faster. I didn't expect Ellie to be too impressed with it, but I was interested to see what she thought of a different type of bottle. The result was unbelievable. Not only was she happy to suck on the different teat, but she managed to drink the whole bottle by herself, without any help! 

I was blown away. One thing I never expected was for Ellie to drink from a normal bottle. The whole time I was feeding her I had a huge grin on my face. It doesn't seem like such a huge achievement, but for a cleft-affected child like Ellie it has incredible implications. Obviously it's a lot cheaper to by a standard bottle rather than a specialised one, but there's more to it than that.

A lot of people wouldn't be aware that a baby depends on the action of sucking and swallowing to strengthen their tongue and jaw for speech. By feeding with specialised bottles and teats, they don't get the opportunity to strengthen these muscles, and that leads to speech delays and impairments. That's why we see a speech pathologist for feeding problems.

Ellie still isn't strong enough to take every feed from a standard bottle, but hopefully the chu chu teats will help with that. I've also ordered a few squeezable bottles, just in case she needs that extra bit of help. And with a bit of perseverance, hopefully she won't find her speech too badly affected from feeding.

 

16/05/13 - No Answers

After hearing that Ellie's swelling should have gone down I decided to take her back to the doctor. Obviously it wasn't practical to drive all the way to Hobart to see Doctor Kimble, so instead I made us an appointment with Doctor Naiker.

I should have saved my time. He had a quick look at her mouth and pulled her lip around, before saying that it's probably fine. His only suggestion was to come back in two weeks and see how it's going. He didn't even bother to address the redness and weeping in her nose.

I should know by now that Doctor Naiker is not the greatest when it comes to more specialised problems. But seeing as we are so far from our specialists, and it takes weeks to get in to our paediatrician, there's not much we can do about it.

15/05/13 - Worried

Three weeks post-op, and we were starting to worry about Ellie's progress. Doctor Kimble had said the swelling should start going down one the stitches fell out, but there hadn't been any change at all. There was still a large lump between her lip and her gum, and I was worried that it shouldn't be there. I asked about it in the Cleftpals group, and sure enough, the other parents all thought it was strange for there to still be swelling. 

As well as the swelling I'd also noticed that the repair lines in her nostrils were red and weeping. I was worried that she had an infection, but then again she wasn't running a temperature. The best I could figure out, given that we were so far away from our surgeon, is to get in to Doctor Naiker and see what he says. Hopefully we can save a trip to Hobart.

13/05/13: Troubles with Solids

We've decided to take a break from solids. It's just too hard for Ellie right now, and I don't want her to start negatively associating.

After such a strong start last week, she got a bit of pumpkin in her palate and squirted it out her nose. That upset her a lot, and I imagine it probably hurts having food come out your nose, no matter how smooth the puree is.

I kept trying every day, but the results were the same. She'd take one or two spoons and then squirt it out her nose again. After a few days the screaming started as soon as I put her in the highchair. I feel terrible upsetting her so much.

I've tried playing around with the consistency and temperature of the food, but it doesn't seem to make a difference. I even tried offering it before her milk feed instead of after. That time she managed a couple of extra spoons but still protested the whole time.

I'm worried that I'm not going to have it sorted out before her palate repair. We were told that it helps if they can take solids after the repair, but at this rate it's never going to happen.

So we're taking a break for a week. When we start again I'll try something sweeter, like apple or pear, and see if she likes that better than vegetables. Hopefully if we find something she likes she can learn that solids are actually quite good.

Meanwhile, I have a laundry full of pumpkin stained clothes - hers and mine!

10/05/13 - Needles, and Impressed with our Doctors

The dreaded four-month needles rolled around almost as soon as we were home from Ellie's surgery. I'm not one of those mums that gets upset about needles, but I do have a problem with how unsettled it makes them. But its far better to have a couple of nasty days rather than them catching some horrible disease, and I'm a staunch advocate of child immunisation.

Our appointment was at 3pm, and we were going out for dinner afterwards. The timing sucked, but I was hoping that the intial sleepiness might help us through dinner. Her last needles had left her sleepy for two days.

It was Doctor Naiker's first time seeing Ellie after her repair, and he had a look at the incredible work that Doctor Kimble had done.  He asked a few questions and then it was time to jab my poor little girl. With all of these blood tests that she's had, I think she might be getting used to the needle, and she only cried while I was holding her arms down. Once the needles were in she started to calm down straight away.

After the jabs there was a bit of medical housekeeping to be done. We needed a refferal for Doctor Kimble's private rooms, a refferal for an opthomologist that the hospital had requested, and a new script for zantac. We got through all of those and headed off.

When we got back to mum's I bathed and fed Ellie, and gave her a dose of panadol. Miraculously, she did sleep all the way through dinner, and only woke up for a little bit in the car on the way home. It was only the third time that we'd taken her out for dinner, and she behaved perfectly. I was getting better at breaking our routine occasionally, but it still stressed me out the whole time we were away from home.

When I got home there was a package in the mail from our speach therapist, Sarah. She had sent us a heap of information on starting solids because we'd been unable to see her while we were in Hobart. She added that we could call her if we had any questions during the journey.

One thing I've discovered with Ellie is that we have an incredible medical team. We see the same doctors every time, instead of the endless line of locums that we've seen with Sophie. And on top of that, they all care about her, and want to make things as easy as possible. It's good to know that these people who'll be a big part of our lives, of Ellie's life, are there for us the whole way.

7/05/13 - Solids!

Even though our paediatrician ad recommended we start solids at our last appointment, I'd been putting it off. I knew it was going to be a tricky job, and I kept finding excuses not to start. But with surgery out of the way and the repair healing nicely, I was time to bite the bullet.

Sophie had hated rice cereal, so I planned to start Ellie straight on vegetables. I puréed up some pumpkin, and got ready for our first ood adventure. I'd read on the Cleftpals Facebook page that cleft-affected children usually prefer their solids a little runnier, but that was all I really knew. So it really would be a learning curve for both of us.

I settled her in the high chair, and she sat there staring at me, as if she was trying to work out what I was about to do with her. She moved the first spoonful around in her mouth for a little bit, and then finally swallowed. I was pleasantly surprised to find that pumpkin wasn't coming out her nose, and she managed three or four spoonfuls before she was sick of it and started crying again.

I was happy that something had gone right for a change! It seemed like I'd been worrying over nothing after all, and I was excited now to introduce her to all the different foods out there!

2/05/13 - Post-op Review

After what had felt like a lifetime of struggling with Ellie's post-op care, it was finally time to return to Hobart and see Doctor Kimble again. It was 9 days since her surgery, and we were hoping to hear that she could return to bottle feeding and take the splints off.

Our appointments in Hobart are always made for early afternoon. This gives us time to get down there, and time to get home before it gets too late as well. But it still means an early start for the day. It's generally a four-hour drive, but of course we need to factor in stopping to feed Ellie somewhere along the way. We always time our departure for straight after her feed, but she is on a three-hourly routine, so it's unusual for us not to need to stop at some point.

We left home at the ungodly hour of 6.30am. Between stopping for fuel and breakfast, we lost a bit of time, and Ellie was awake within an hour and a half. We stopped at Perth, but by the time I finished in the bathroom she had gone back to sleep, so we continued without feeding her. The rest of the way we were certain that she would wake up any time, and we kept pausing in each town, but she miraculously stayed asleep.

Because we hadn't needed to stop we were running well ahead of schedule. We decided to stop in at the Cadbury factory for hot chocolates, and we would feed Ellie while we were there. It was the first time I'd fed Ellie with the syringe in public, and I was nervous. Unfortunately I had good reason to be, because as I sat there feeding my screaming baby in the only way we could, I was told by an old lady at the next table just how lazy I was to be feeding her without even holding her. I tried not to let it get to me, but to be honest, she pissed me off.

After that we moved on towards the city, and called in to Ronald McDonald House to say hello to Penny and one of the families that had been there when we stayed. It was great to hear that their little boy was getting better, and they were going home that day.

We left a little bit early to go to the appointment with Doctor Kimble because it was in his private rooms at the Hobart Private Hospital, and we'd never been there before. Luckily though his rooms were easy to find, and we arrived with 10 minutes to spare. His receptionist gave me some paperwork to fill out, and soon after Doctor Kimble arrived.

He has a great level of commitments to his patients, and was immediately chatting with us about he things were going, and if we were having any problems. He was happy with how the repair was healing, and said that the dissolvable stitches should start falling out soon and then the swelling would go down. The best news: Ellie could have a bottle, and we could get rid of the nasty splints!

We talked briefly about the next step in Ellie's journey, and he requested that we come back in July for another check-up, and to organise for her palate repair in September. It was good to know we had five months to get ourselves mentally prepared before going through it all again.

We left town straight after the appointment, because we wanted to get as far as we could before Ellie's feed. We made it to Oatlands. We stopped at the TKO bakery, and planned to have a coffee and feed Ellie before moving on. We should have just kept driving.

I've always been nervous about feeding Ellie in public, even before surgery. Prior to coming to Hobart for her operation, I'd always managed to be close enough to friends or family to call in and feed her, or just sat in the car and did it. She's a noisy and complicated feeder at the best of times, and I don't have the patience to deal with the stares and questions that I always anticipate when I need to feed her in public.

Drew ordered our coffees while I set up on one of the couches. Ellie was in a foul mood, and even though I was finally offering her the bottle she'd been wanting for over a week, she was fighting me big time. After a bit of struggling one of the waitresses came over and stuck her two cents worth of advice in, saying "have you tried feeding her on a different angle?" Now, I know she probably thought she was helping, but I was frazzled, frustrated, and really didn't need someone telling me he to feed my baby. I replied with "I actually think I know how to feed my child, thanks" to which she snorted and muttered something about having nine kids between all of the staff and knowing a thing or two about kids.

That was it. I was so wild. What made her think that I wanted her help, or that I cared how many kids she had? Her experiences were completely different to ours, and those nine kids wouldn't have added up to half of the challenges we face with Ellie. Some people should just really shut their mouths. So, pissed off and annoyed I told Drew we were leaving, and we stormed out.

The plan was to feed Ellie at the next town, 20 minutes up the road but she fell asleep so we carried on to Westbury instead. She was much happier by that stage, but because we were in a hurry to get home and pick Sophie up I cheated, and used the syringe.

Unfortunately for us, that was the end of Ellie's patience for the days travels. She cried the whole 45 minutes from there to Bec's house, where we stopped to have dinner and pick Soph up. She calmed down after I gave her a bottle and Bec bathed her, and she eventually fell asleep.

It was after 8pm by the time we got home. A long day, a lot of driving, plenty of Ellie's signature screams, and some great news from Doctor Kimble. The best thing though was probably knowing we wouldn't need to make the trip again for two more months.