Time to celebrate the good things

If I was to be honest, I would say the last year has been tough for us. The last 4 months of 2009 was the hardest, with the onset of Ellie seizures, in and out of hospital and in many more times, medication playing havoc with Ellies demeanour, sickness... the list goes on. Those 4 months we found really hard, Ellie seemed to forget many things that she could do before the seizures, and she really took 10 steps back with her strength. I felt really disheartened, felt like all the work and therapy we had done with her was all out the window & one thing that was really bothering me was that Ellie was not weight bearing in her legs or even wanting to sit.

There have been many days where I thought "no Ellie is not going to sit" I couldnt see it possible, but it looks like there is light at the end of the tunnel, and I am sort of feeling like all the hard work we are putting in is paying off... I know this is only something small, and there will always be something to work at like pull to stand, standing, walking etc... but for somen reason the idea of Ellie not being able to sit bothered me more than not doing the others... Dont ask me why, they just did....

There have been times where I have wanted to give up on therapy, and I did at the end of last year, Ellie wasnt enjoying and I wasnt enjoying it. I am so glad I changed my outlook and am enjoying it again, because the benefits are paying of with Ellie.... Today I sat her in her boppy pillow, (keep in mind any other time I have done this she SCREAMS???) Today no screams, just a look of pure concentration on her face and then sheer JOY as if to say "Look at me I can do this sitting thing" By no means is Ellie sitting independantly yet, but I dont think it will be too far off...

Celebrations will soon be happening in our house!!

Just some photos

Time out with Mum

Ellie showing off her newly acquired standing skills

Ellie enjoying a baby chino

Paediatrician appointment update

Yesterday we had an appointment with Ellies paediatrician. I went in with a few small things to discuss but one of them was how Ellie wont drink milk, wont drink water, wether it be out of a bottle or sippy cup. She does however have a few sips out of a normal cup, but this gets more on her then in her mouth. He agreed with me that she definately looks well, and doesnt look dehydrated. However he had this to say. He said any 'normal'child ( and I use that word lightly) if they were not drinking, as long as you kept offering fluids they would drink when their body needed it.

However he didnt know if he could leave it up to Ellie to do this, and I agree with him as Ellie has never really wanted or demanded food or drink... she has never got excited about food or drink like other kids do. Ellie is fed because it is that time of the day, not because she 'wants' it.... SO with saying that he doesnt think that Ellie will drink what her body needs. Next thing was to check her weight.....

Drum roll please..... Ellie is now 6.8kgs, her last weigh in was 6.3kg in december. So even though she hasnt been drinking she has still gained weight. However the paed wants me to get Ellie weighed weekly to monitor if there is any weight loss, record how many wet nappys she is having, and record the amount of fluid she is drinking. We need to keep offering fluid to her any way she will take it, bottle, sippy cup, normal cup and last resort syringe.

If Ellie is having less than 2 wet nappies a day or looses more then 5% of her body weight he wants to know. If this continues and she still wont drink then we may need to look at other options, such as a NG tube in her nose, or a peg in her stomach... This scared me when he first mentioned it, but I am going to remain positive about this one... the lack of drinking has really stressed me out this week, and I dont need another thing that makes me worry... and you know what at the end of the day if she needs a tube or peg, then thats what she needs.

On a lighter note, this morning Ellie was lying on her play mat, and for no reason she started to giggle hysterically.... I did not get the camera in time to video this one, but managed to catch her chuckling the second time around... No idea what she was laughing at... Enjoy!!!

Busy, hectic week... some bad days some good

This week has been hectic, running around for alot of appointments for Ellie.

Amongst all this we had a bad few days with Ellie not drinking. This is still going, but we have an appointment withthe paediatrician this afternoon so I am hoping he has some answers. Fingers Crossed!!

A positive thing this week was Luke, Ellie and I went to check out a special development school, that has an early education program. In english it is a school for kids with additional needs and delayed development.

They have a early education program that takes kids from 2 years and 8 months. I was really really impressed with all that I saw, they classes are small (2 - 8 kids) the rooms are beautifull, they have a secure outdoor deck for kids to play on.

The school also has their own physio, speech therapist, OT, psychologist, sensory therapist etc and all of these are involved in developing your child to ther best of their abilitys. They work alot on making the child as independant as possible in a safe environment.... and work very closely with the parents on setting goals based on what the parents want and also where the teacher feels the child is at

Can you tell that I LOVED it...

This is still a while off, but I want to make sure we are totally happy with where we send Ellie.

We are going to check out another special development school next month, and then will make a decision about which waiting list to put Ellie on

Here are some new pics of our princess... Enjoy!!!

Ellie showing off her sitting skills

This is the 'smile' that Luke gets every day when

he gets home from work.

Ellies new bonds 'undies'

Ellie supporting daddys team 'The Saints'

Frustration...

Definition: The act of frustrating; disappointment; defeat; as the frustrations of ones designs

Today I am frustrated. Frustrated at a few things;

1. Frustrated that Ellie wont drink milk out of her bottle

2: Frustrated that Ellie wont drink water out of her bottle

3: Frustrated that no one can suggest a sippy cup for kids with cleft palates, in other words, none of these fancy no- leak ones that requires a huge amount of suck (as Ellie cannot do this)

4: Frustrated that I cannot get a simple answer from the genetics place about a simple question

5: Frustrated that when I try give Ellie a drink in public, and she puts on the biggest performance and screams, that I get the worst look from a elderly couple.... I felt like SCREAMING you come over here and you try give it to her

6. Frustrated that we were up early this morning for OT and Ellie didnt want to do a single thing

Its strange when you get frustrated at one thing all of a sudden everything frustrates you, even the things that normally dont.

Defeat.... I will succeed tomorrow, if not then, the next day

Appointment update - Neurology & Physio

Today we had an appointment with Ellies neurologist. Even though Ellie has had some breakthrough seziure activity over the last 4 weeks, we are both happy with where she is now compared to about 6 or more weeks ago. Our plan however is to drop one medication (clobozam) today, and leave Ellie just on the trileptil.

Ellies neurologist explained an interesting thing to me today about the trileptil. Obviously if you dont give Ellie enough of this medicine for her wieight than more than likely she would have seizures, however, if you give too much then this can also produce seizures. At the moment Ellie is having slightly more than what she should be, but not by much.... so the plan is now that she is off the clobozam if seizures reappear then we will actually reduce the amount of trileptil that she is having. Again it just all comes back to finding the right med and the right dose. But as I said above Ellie is in a much better place regarding her seizures and meds compared to 8 weeks ago. So we are very happy with how this is all going.

Then this afternoon we had physio, and I was very proud to tell Trish that Ellie has been sitting unassisted for about 1 minute (after I have set her up in the right position) so this is something that we will be working on over the next couple of weeks. Trish also brought a peanut roll for us to borrow till I get mine. A peanut roll is a fit ball shaped like.... you guessed it a peanut roll. It has a little groove in the middle that helps Ellie stay on the ball, and as it is alot smaller than my massive fit ball, her feet can touch the ground.

We are also going to work on Ellie standing with her splints on, against the coffee table, and work on Ellie taking more weight through her legs. Trish is also going to bring some catalogues of standing frames, as this is something we want to get Ellie in, as she really wants to be up and stand... but the problem with this is Ellies size. For a standing frame to work properly it needs to provide proper support to Ellies bottom, and hold it in, but as she is still little, most frames probably wont provide this support.... But we are on a mission to find one that works, and possible try them out first...

If anyone knows of a standing frame that works for 'little' kids, please let me know the name of it.

Opthamology update

This week we had a appointment with Ellies opthamologist, who we hadnt seen for 6 months. Basically she checks Ellies vision in her left eye. She still beleives her vision is good. She tracks well, just not all the time. But we think this is Ellie losing interest rather than a vision thing.

She also mentioned that Ellie is longsighted and has astigmatism. Astigmatism is caused by and irregularly shaped cornea or lens located behing the cornea. Neither of these are a massive problem now, but just need to be monitored.

What it may mean is that if either of these get worse, then Ellie may need glasses, but this would not be till she is about 3yo or so.

Today I also had some people come visit me from a school for the deaf. Ellie isnt deaf, but has been hearing impaired up until now due to her cleft lip & palate. My plan by being involved with these people is that they can offer home visits fortnightly where some one will come and try and teach Ellie and me signing. I dont even know if Ellie will be ready to learn this, but as we are aware that alot of WHS kids are non verbal, I am trying to be proactive, and ensure Ellie has this way of communicating.

I am very interested in seeing how this all goes. The plan is they will probably start doing the visits in the next few weeks.

Once Ellie has had a hearing test in 4 weeks or so, if this comes back positive, we will do another one 1 month latter to ensure this is correct. If it is and Ellies hearing is good, then the deaf school will cease to see her, and they will refer me onto a independant place to continue with the signing.

I am interested in anyones feedback that has tried to learn signing or teach it to a baby/child.

Grommit surgery success!!!

YAY!!! 9 months after the first attempt to put grommits in Ellies ears, we finally have success...The first attempt wasnt succesful as Ellies ears were too small.

My fear all week was that she was going to have bad seizures and this would prevent the surgery going ahead. As this is what has prevented it happening the last 3 times.

The surgeon said that the surgery went well, but it was the hardest set of tubes he has ever done, he said he has never seen such small ear canals. But he got them in. He also said that when they suctioned the fluid out of her ears, there was a massive amount that came out, and it almost blocked his suction machine.

So with saying that our Little Ellie, should be hearing much better in the next few days or so. We need to go back for a review of the surgery in 3 weeks and then some time after that we will organise a hearing test.

In recovery we got to pick a balloon for Ellie and of course we picked pink. It came attached with a gorgeous seal teddy bear... Ellie however was more fascinated with the balloon, she has never really paid much attention to them, but she couldnt take her eyes off it, and kept tugging on the string.

Back home now, Ellie is recovering in bed.. so time to put my feet up and have a coffee... Mmmmm

When will society realise they too are humans???

I have bloged a few times recently on how upset and angry I get at the comments that people make about Ellie or the stares that she gets. This is one topic that makes my quite angry.

The title of my blog today stems from the above but also from what happened to a friend recently. My friend has the most beautiful boy, he is social, smiley, loves to play, loves to be around other kids etc... he is just a normal boy, and he has down syndrome. Recently before he started kinder, a mum complained that there was going to be a down syndrome boy in her son/daughters class.... Gasp!!!!!!!!!! I was horrified when I heard this. She hadnt even met the boy yet!!!

This got me thinking, here I am complaining about the stares and comments that are made about Ellie, but what chance do the kids of today have with parents like this who are ignorant and unacepting of kids with a disability.

What people need to realise is that kids with special needs, disabled kids, kids that are different are just like you and me..... yes they are different, in their very own unique way, but that doesnt make them less human... that is the thing they are humans, they have thoughts, feelings, etc.... I hate that Ellie may grow up into a world where there are still ignorant rude people who cannot accept this

To finish I want to tell you how a friend of mine explained Ellie to her 4 year old daughter when asked why she has one eye.....

My friend answered, "well you know how you have curly hair, and some people have straight hair. Some are short and some are tall... everyone is different. This is also the same with Ellie, she is differnet, but only because she has one eye..."

I loved the way that she discussed Ellies point of difference with her in a human way... this is what society needs to lean.

Remember... at the end of the day, these kids too are human

Respite started today... & I am more comfortable with it than I thought I would be

I think this is mainly to do with the respite worker that I have been given, Sheila. On opening my door to her, I immediately felt comfortable, she took to Ellie in such a beautiful way, and we spent the whole 2 hours just talking. We talked about Ellie, her condition, her progress so far, we talked about her family, kids, grandchildren etc and also my family.

It was nice... It was comfortable.... it was 2 hours that seemed like 30 minutes... the time just flew... It was not what I expected... which is GREAT!!!

I have to admit I have been very reluctant to except the offers from our council for respite for 3 reasons:

- My mum already looks after Ellie 4 hours every Thursday morning, so I get a break there

- I was not ready to leave Ellie with someone I didnt know.

- I never thought we needed Respite.... but now I figure, you take what help you can get

But this morning changed all of that, as Sheila was wonderful

And I think its good for Ellie to get a mixture of different people to look after her.

Sheila is back again in 2 weeks time, and will come every monday for 2 hours. I dont think I will be ready to leave the house for a coffee and "me" time when she comes next, we will slowly work towards that.

Just some new pics.... enjoy!

Ellie sat unassisted for 1 minute WAHOO!!!

Yesterday as every other day I had Ellie between my legs, trying to get her to sit and lean forward on her hands. Most days I hold her & when I let go she SCREAMS.... However yesterday was different, she sat there, calmly. I actually had time to grab the camera off the coffee table and take 4 photos.. YES you heard right... 4 photos...

You can actually see the concentration in her face, and in one of the photos a dribble line.. hehehe

Today is "D" Day before I get angry...

I have had a bit of a battle on my hands with my health insurance provider lately, actually to be honest it has been going since Ellie was born.

To make a long story short, basically when Ellie was born and we realised then that she only had one eye, I contacted my health insurance as I was told by our paediatrician that we would need to be covered for prosthetics. In short my provider proceeded to tell me on numerous occasions that as this was a "pre exisitng condition" we would not be covered.... What the???

So me as a mother who only ever wished for a healthy baby was meant to be aware of this before my baby was born... you have to be joking.... That was a massive battle on my behalf, in the end I won, and they chose to cover me, however it was going to cost me an extra $100 a month (nice!!!)

Recently I put a claim in for Ellies first prosthetic eye, to which they adivsed me as it wasnt done in a hospital under a anaesthetic it wouldnt be covered.... what the??? Again I had to fight to ensure we were rightfully paid for what I thought we were covered for.

Now, I have actually been paid for the prosthetic eye, however we are still waiting on a payment for the eye socket expander that was inserted in early November 2009, that is 2 1/2 months ago... Now do you understand my frustration.....

Having a child with extra needs and complications is hard and stressfull enough, I shouldnt have to constantly fight for what I am entitled too. So today the insurance company asured me that it would all be finalised and I would be paid the entitlement for the socket expander...

Lets just hope they are right, otherwise it means another phone call... maybe I should start charging them for their time... Yeah right!!

And I thought the dietician was going to cringe....

Today we had and appointment with Ellies dietician. She was so impressed to see that Ellie looked a lot bigger. We ploted her on the growth chart, she is still so far below the line for weight, but her line is steadily going up... so she was happy with that.

We discussed today how Ellie is doing with food/drink etc & as I said in my previous post I was very happy to tell her that Ellie now has 3 meals a day. I knew the next question was going to ask me to go into what those meals consist of. B/fast and lunch I wasnt worried about as they are quite normal, healthy meals. It was the dinner that I hesitated to tell her about. Ellie seems to have a sweet tooth and seems to reject anything savoury, until.... you add custard to it....

So here I am with a dietician telling her that for dinner Ellie has, vegies, tuna, meat, baked beans, spaghetti, pasta etc.... but she has all of them with custard... *CRINGE*

Would you beleive her response was "that is fine, as long as she is getting meat, vegies, pasta etc..." Phew thats a relief

However we do need to somehow get Ellie to a point where she will eat savory food without the custard, so the plan is to very slowly reduce the amount of custard I am adding to Ellies dinner. She said this could take months, as if we do it too quickly Ellie will reject the food. We need to do it without Ellie realising it.... Hmmmm we need to trick her.

Wish me luck!!!!

This week is busy... Ellie must have known

This week we have a busy week for Ellie. Today we have physio, which I am really EXCITED about. As I feel that Ellie is coming along way. This last week she has started to weight bear on her legs when we get her to stand, this is WITHOUT her splints... she does this for about 30 seconds, compared to before where she wouldnt even put her legs on the ground.

Then on Tueday we have a appointment with the dietician, always sceptical about this one as I know that Ellie doesnt eat anywhere near what she should or the variety that she should, but our dietician is fantastic and understands this. However I will be proud to report to the dietician that since our last app, Ellie has now increased to 3 meals a day and 3 bottles.... YAY, last time I was struggling to get 1-2 meals into her. I want to find out how I can also increase Ellies fibre in her diet, with the small amount that she eats.

Wednesday we have OT with Jo, Looking forward to this one too seeing as Ellie put on a bit of a performance at our last session and didnt want to do a thing. Then on Wednesday afternoon we have our second chiro session for Ellie (and me too of course!!!) Ellie wasnt so keen on the first session as I think she felt she was being restricted, until that is the Chiro did work on her scalp, all of a sudden you could tell she thought this was absolute bliss, smiling and laughing at the chiro. He explained that alot of kids with cleft lips/palates enjoy the cranial work as they get alot of pressure and tightness in their scalp, that night Ellie feel asleep straight away.... Lets see if the same thing happens this week.

As I said in the blog title, Busy Week.... Ellie must have known. Reason for this it is 8:35am and Miss Ellie is still asleep (She normally wakes at 6:30-7:30.

Ahhhhh Bliss, time for breakfast in peace, with the news on in the background, and a few spare minutes to blog.... I wonder how long this will last