2009 The year that was....

2009 was the year...

- That we received Ellies diagnosis of Wolf Hirschhorn syndrome

- That Ellies ear operation was cancelled 3 times due to other hospitilzastions

- That Ellie started to some what enjoy food

- That Ellie learnt to roll

- That Ellie started having seizures

- That Ellie found her feet and started eating them

- That Ellie found her voice

- That Ellie got her glass eye

- That had about 10 hospital stays
My wishes for 2010...

- Continuation of good seizure control (Ellie has had no seizures for 4-5 weeks

- That Ellie continues to improve her development

- To make people more aware of Wolf hirschhorn syndrome, and in turn making strangers more accepting of people with a difference or a disability

- More time out for Luke and me, to have some better quality time together

- To reassess all of Ellies therapy, and work out what is best for her right now.

- To learn to not become so frustrated with hurdles that are put in front of me

- To live and enjoy life, as we always have

All I want to do is eat my feet

A break has been nice

December has been a quiet month for therapy with Ellie, this was partly due to some therapy services not operating this month. It was also due to some advice from another mum with a child with WHS (Thanks Anna) That sometimes a break from therapy can but just what you and your child need.... and it was. This month was relaxed and Ellie and I have had some real good quality time together, and would you beleive it she has started to do more... she is now rolling, sitting a bit better with the boppy pillow and talking heaps. So I think Ellie really did appreciate the break from therapy too.

This break isnt going to go on too long as I do feel that therapy is a vital part in moving forward with Ellies development, however in the new year I am going to reasess what therapy Ellie requires and I am also going to look into a few new ideas from discussions with other Mums who have a child with WHS. Such as chiropractor (I have been advised that this can help with low muscle tone) I also want to look into craniosacral therapy, I dont know much about this but again has been recomended by other mums of WHS kids. One other thing that I am interested in is signing for babies. As we are unaware if Ellie will be able to talk, I would like to work on other forms and ways for her to communicate.

This all sounds like my year is going to be busy, even busier than last year. But my new years resolution is to reassess all the therapy that Ellie is currently having and the therapy that I think she would benefit from, and work out what is most important for her.... I normally dont make new years resolutions, but im sure I can stick to this one.

Christmas time in our house

First of all Merry Christmas to all the followers of Ellies blog. Thank you for taking the time to read Ellies story and for providing support and encouragement.

We as a family had a great christmas day spent with family and friends, (however it was tinged with a bit of sadness as we were supposed to be in Newcastle with Lukes family) the reason we didnt go was as we are still playing around with Ellies seizure medication, we felt more comfortable being near home and Ellies doctors.  Ellie got very spoilt, and got alot of great gifts, especially ones to help her, such as a large rubber mat to practice her rolling on, some therapy toys, and a small pool to splash around in.

Ellie also got the lovely outfit above from my younger brother, So we couldnt resist making her "Santas little helper" for the day.

An update on Ellies eye: Ellies eye is doing well, we have finally taken the patch of permanently, and YES I am now used to the glass eye... However we still need to be careful as it can come out quite easily, like this morning when I was giving Ellie a bottle, and for 1 minute I was looking at her thinking, she looks diferent.... it was then that I realised that her glass eye had fallen out.... after a quick freak out, we found it, under her tumble form chair that I feed her in... No idea how it got there, but we were quick to put it back in.

Once again, thank you to all the followers of Ellies story, and from our family to yours, We hope you had a wonderful christmas.

And then there were TWO eyes

The moment finally arrived where Ellie had her first glass eye put in. I had mixed emotions leading up to this day, as I had many thoughts going through my mind.... Will I like how Ellie looks? What if I dont? etc... I have to admit I was very very impressed with the work that the occularist did to match the glass eye to Ellies eye colour of her left eye. He did an amazing job.

If I was to be honest, when I first saw Ellie with the glass eye in, I was a bit taken back.

This may be bard for some of you to understand.... but I really, really did get used to Ellie only having 1 eye, that was Ellie to me. So to see her with a glass eye, was and still is a bit strange. Its not that I dont like it, I do, but to me she now looks different, I just need to get used to it. For those that read my last post, when I talked about how people stare at Ellie and make comments.... I also wonder how will this change how they look and what they say? Will they make more comments?

I think the hard part is that the glass eye is about half the size of her other eye, as this is where we have to start, you cannot put a glass eye in straight away that is the same size as her left eye. It is a gradual process. As Ellie grows she will get a bigger one, they are planning to put a larger one in, in about 6 months.

As they say slow and steady wins the race.... Ellie has a long race ahead of her, But I am sure she will win

Am I too sensitive???

Sometimes I ask myself this question...

I know that having a child that looks a bit different and only has one eye is always going to attract questions and looks. But what offends me is the way that people go about it. A few weeks ago Ellie and I were in the supermarket when I overheard a 30yo guy say to his partner, "Look, Look that baby only has 1 eye" If you know me well you would know I dont mind people glancing at Ellie, as it is hard not too, but this disgusted me. Over the last year I have learnt to put these people in their place, to this young guy I proceeded to tell him, that what he just did was so disgustingly rude, to which he appologised. I said his appology was not accepted, "Just dont do it in the first place"

Today we had another outing where for 30 minutes while I fed Ellie in the pram, two ladies kept staring and pointing at Ellie and (not in a way where they were saying she was cute) it was in a rude way. To these ladies I simply said "is there any reason why you have to stare at Ellie and I for 30 minutes, it is not nice"

On both these occasions I walk away feeling like the bad guy, as I am the one that has said something.  But at what point when someone looks (stares) or says something out of line about Ellie am I supposed to stand up for her.... this is why I ask myself, "AM I THE SENSITIVE ONE"

I have also started to ignore complete strangers when they feel the need to ask me over and over and over, "what happened to her eye" "what is wrong with her eye" "why is she so little for her age" I think to myself I would never ever ask a complete stranger these questions, so what gives these people the right to think they can be intrusive into my life.... again, I wonder, "AM I TOO SENSITIVE???"

Eye not so far away now...

Today Ellie had a busy day, first we had a appointment at the neurologist, who was VERY happy with how Ellie appeared - Happy, talking, alert etc, this was something she wasnt on the previous medication. So fingers crossed this med is a keeper. We will see the neurologist again in 6 weeks to see how she is going again.

We also had physio and speech therapy at home today. Ellie is definately getting stronger in her sitting in the bumbo, she even plays with a rattle whilst in it. We also ordered Ellie some leg and arm splints to help her with her weight bearing exercises.

With the speech therapist, we discussed trying Ellie on a few normal bottles and teats, as I would eventually like her to feed on this rather than the medela special needs feeder, so Deidre is going to get back to me about which teats are soft rather than hard, as this will be easier for Ellie to suck from.

The most exciting part of our day was our appointment with the occularist, (this is the man that makes glass eyes) today just by looking at Ellies eye, he painted what will be her new right eye. This was so interesting to watch, and the fact that he does it all by hand, and makes it look so real... it was amazing!! At this stage Ellie still has just a clear glass eye in, with a patch over it, till she gets used to it.

Next Tuesday we go back again to see him, and I think this is when we get her new eye.

Photos after Ellies Eye expander has been removed

Here are some photos of after Ellies surgery today. Today they removed the eye expander and took a mould of her newly created socket. What you cant see in the photos is that behind the patch Ellies right eye socket is actually open,  this is a good sign, and hopefully means that it will open quite well once the prosthetic eye goes in.

Ellie did really well after the anaesthetic, and was very quickly back to herself. Tomorrow morning we have a appointment with the man that will make her prosthetic eye, he will be fitting her first eye tomorrow. To start with the eye will be white, but we are going to discuss with him tomorrow the cost involved and how long it takes to get a eye colour matched to her left eye, as I dont know how I will deal with just a white eye, as this may look a bit weird, especially if her eye lid opens straight away...

I will post some photos in the next few days of her new right eye.

With Dad before surgery

With Mum afterwards

Hiding behind Ted-E-Bear

Hopsital visits have come routine.... some bad some good

Ellie was again in hospital all of last week. We ended up there Monday morning as her seizures were increasing and getting worse, and under her neurologists instructions we gave her a increase med dose, but Ellie got worse.

Once we were at hospital, they also found that Ellies right eye socket, (where a tissue expander was inserted 3 weeks ago) was quite badly infected. This meant 1 week on IV antibiotics, to try and get rid of this, if this didnt work then they were going to have to remove the expander. We were not to keen on this as ideally we wanted to keep it in till the 7 December, which is tomorrow, when it was scheduled to be removed.

Thank Goodness..!! The antibiotics worked. So the tissue expander is still in, and we are due to be at the Royal Childrens 7.15am tomorrow morning, where they will remove the expander and they will also take a mould of her newly created eye socket, with this mould they will create her first glass eye. So it wont be long now before we are posting photos of Ellie with a right eye.  This day has been a long time coming, and both Luke and I are very excited about this. I have gotten so used to Ellie with only 1 eye, that I do think it may take a bit to get used to her with 2. Cant wait for that day!

So last weeks visit to hospital not so good.... But tomorrows visit is exciting as it is a step closer to Ellie having 2 BEAUTIFUL Eyes....

Back home again.... as a family & a update on the last few weeks

YAY!!! Ellie and I have finally moved back into the house with Luke... And so much work has been done on the house. Luke has worked so hard and done an amazing job.

I have to admit though it was a help that I was at my parents for the last 4 weeks, as Ellie has kept me on my toes, with being un well and unexpected hospital visits, so it was nice to have an extra pair of hands to help.

In my last post I talked about how the meds that Ellie was on had changed her demeanour so much. Well.... Last week I had an appointment with her neurologist to chat about this, and I also mentioned that I felt we didnt have great seizure control either with the Tegretol. So the plan was to change her to Trileptil, this was to happen after the weekend as she was spending the weekend with my parents while Luke and I got the house ready to bring Ellie home. Well the following morning, Ellie seized on and off for about 1 1/2 hours, so under her paediatricians instructions we were to giver her midazolam to stop the seizure and see how she recovered. However her seizure got worse and her breathing became erartic. We ended up at monash overnight to monitor her and watch her whilst they changed her meds (to trileptil) and went home last Thursday (26 November) She was also sent home on another medication that is to act as a bit of a bandaid while we find the right level of trileptil to have her on.

This bandaid didnt work so well, as on Saturday and Sunday (28 & 29 November) Ellies seizure activity increased, and alot of them consisted of very absent seizures, this involved no jerking or stiffness, it was like the lights were on but no one was home, this was a new type of seizure for Ellie. She had a couple over the 2 days that lasted 20 minutes, and our plan was to call her neurologist first thing monday to discuss what to do when these type of seizures happen. Are we to administer midazolam? However, late sunday afternoon, she had another 15 minute absebnt seizure, which was followed 30 minutes latter by another one, however this one wouldnt stop and she had facial twitching and jerking. Again, we had to administer midazolam. This time we only stayed in the ED for about 4 hours, so there was no overnight stay. (Thank goodness!!)

We were aware that in the midst of changing meds there would be increased seizure activity, but that still doesnt make it easier to deal with or watch. We just need to be paitent whilst we play around with Ellies medications and doses till we find the right one for her.

I said to Luke yesterday when she was having a seizure, "I wonder if Ellie is aware of what is going on" "If she remembers the seizures" I hope not...

On a positive note, Ellie is doing really well with her sitting at her table and playing with toys and sitting in the Bumbo. Over the last 4 weeks as Ellie has not been 100% I havent pushed her therapy wise, but she has really taken to sitting in these 2 chairs. She looks so grown up when she is in them...

We have another busy week this week, with Ellie in for day surgery on Wednesday to get tubes put in her ears. I am very excited about this operations as it has been postponed twice due to seizures, and Ellie already being in hospital. I am quite interested to see how her hearing is after this, and what her reaction is. I will keep you all updated.

Medication Madness

At the moment I am struggling with the way that the seizure medication that Ellie is on has changed her. Ellie is normally a calm, (very calm actually) placid, easy, happy baby. Since being on tegretol for her seizures, this has completely changed her. Ellie very rarely smiles any more. For a mother and father this is very hard, she always comes across as sad. Another thing it has done is make her quite agitated. I know we have been told that her body will get used to it... I hope so. As I want my old Ellie back.

From speaking to other mums with kids with WHS, seizure medication is a real trial period, to find the one that works for your child. How long do I trial this one before I say no its not working?? Do you risk changing to another medication when it could just have the same effect on her?? Do you also risk playing around with the medication and create more seizures?? These are questions I ask myself on a daily basis.

At the moment, the way that Ellie is, I find it hard to deal with. I just want my old smiley Ellie back. Is that too much too ask.

Sorry about my venting.... it had to be done.

On a good note, Ellies MRI was done yesterday under general anaesthetic, and we had no seizures afterwards. At this stage we have a appointment with the neurologist on the 14 December. But I am pushing for a earlier appointment. I hate having to wait for results.

Ellie finally loves food (I wonder how long this will last)

I never thought this day would come, (and I am trying not to get too excited incase it all ends as quickly as it started) But Ellie for the last 3 days has decided that she LOVES food.

Those who know Ellie well, know that for most of the time she HATES food. In a normal day, Ellie would normally take 3-4 bottles, 1-3 tablespoons of food for breakfast and 1 tablespoon of food for dinner. (however Ellie would normally sceam all through dinner as she hated savoury food)

2 days ago, this all changed. She is now refusing milk most of the time and is wanting food. Yesterday she had 1 whole weetbix with cream for breakfast, 4 table spoons of vegies & gravy for lunch + custard, & then proceeded to enjoy dinner which again was 3 tablespoons of vegies and gravy. YIPPEE!!!!
Maybe this will now help my little munchkin gain some much needed weight.

For the other mums of kids with WHS I will gladly welcome any food ideas that you have tried and that were succesful.

YAY!! We get to go home from hospital

Ellie has certainly kept us on our toes while she has been in hospital since Tuesday lunch time. From the time we got here, to 5am the next morning she was having seizures on and off that lasted between 4 & 20 minutes. The 20 minute one didnt stop by it self, they had to give her some midazolam to stop this. So the poor thing didnt get much sleep that night, and needless to say neither did I. Wednesday was a better day with only 2 moments where she seemed to go a bit vague and stare at nothing for 1 - 2 muinutes.

Last night they started her on a new medication clonazepam, this she will be only on for about a week as a bandaid to prevent any seizures whilst they increase her tegretol. Last night this medication made Ellie behave quite weird, at first it made her go off with the fairys, the poor thing looked like she was out of it for about 30 minutes, so I thought... Great!! She will sleep well tonight. Not the case, after appearing off with the fairys for 30 minutes, the meds made her hypo, she did not stop moving, and talking, or should i say loud grunting from 9pm - 1am, after which she was so tired she just passed out.... YAY, which meant I got a good nights sleep.

She has had the same medication this morning and it has just made he sleep so hopefully this hypo episode was just a one off. The good news is that we get to go home today, we are just waiting on the epilepsy nurse to come and show us how to administer midazolam, this is to be used at home if Ellie has another seizure that lasts over 5 minutes.

At this stage they are still comfortable for her MRI to go ahead on the 17 November, so it will be good to finally get this out of the way.

Ellie is fast asleep at the moment, so I am going to pack up our hospital bags to get ready to go home.. YAY!!!

Another hospital visit

Unfortunately we are back at the Royal Childrens Hospital, as last night at home after Ellies minor day procedure for her eye, she was behaving strangely. This morning she started to have  what we thought were mini seizures. She had about 3 and afterwards she would pass out and go to sleep for an hour or so. We were concerned so we rang her peadiatrician, who sugested we come back to RCH to be admitted so Ellie could be observed for 24 hours. So..... here we are back at hospital.

Since we have been here she has had at least another 8 episodes. They are very hard to pick up, as she just goes a bit vague and ever so slightly twitches. The plan at this stage is to increase her medication, and observe her over night. If her episodes become longer or more frequent, then they may need to rethink what to do.

As some of you may know Ellie was also booked for a MRI on the 17 November at Monash. We have asked if there is any possibility of having the MRI done whilst she is a in-paitent at RCH, to reduce the need of another hospital visit/admission next week. However we have been told that this might be easier said than done... so fingers crossed.

One good thing is that we have a private room, so hopefully this means a quieter night. (If Ellie behaves herself) But hopefully we are only here for 1 night...

Surgery Success

Today Ellie had the eye expander inserted into her right eye socket. We had a shaky start with Ellie vomitting just before going into theatre. Once she was in, surgery only took about 20 minutes, and it was a great success. They have placed the expander in her eye socket and stitched it closed, to ensure it stays in. The plan is to see her eye surgeon in 2 weeks, to see how her body is responding to it, then in 4 weeks (hopefully 7 December) they are hoping to have her back at the Royal Childrens Hospital, to remove the expander and take a mould of her eye socket, which they will use to create the prosthetic eye.

Ellie spent a few hours in recovery before they let her go, as she did hold her breath coming off the anaesthetic, and had a temperature. Apart from being a bit tired, and having a puffy eye, she is doing really well.

Now we are back home, (well actually Mels parents, as the house is still mid renovation) she has had a little bit of dinner, and some milk and is sleeping off the long day that it has been. This week we just need to monitor her temperature as we are having strangely hot weather, which unfortunately in Ellies case, can bring on a seizure.

As most of you know Ellie doesnt eat alot, and struggles to put on weight. Our goal at the moment is to get her over 6kgs (13.2 lbs) and today at weigh in time before her opp, she weighed in at 5.975kg (with her clothes on) so unfortunately we are not having a '6kg party yet' Watch this space, hopefully it happens soon.

I have included some photos of our princess, one is in the appartment before we went to the hospital, and the rest are in recovery. Enjoy!!!

                                                                                                       

                                                                                                     

Another operation to cross off Ellies list

Its been a few weeks since my last post, but I have been living with my parents while Luke has been renovating our house. (and will be there for another few weeks)

Tonight we are staying in an appartment near the Royal Childrens Hospital as Ellie has to be there at 7am tomorrow morning.

This operation is a long time coming. Tomorrow she is having a expander put into her right eye socket (this is the one that we had to get from Germany) this expander will get bigger over time as the fluid from her eye socket moistens the expander. The idea of this surgery is to make her eye socket big enough to fit her first prosthetic eye, as there is not enough room at the moment. We think the expander stays in for about 4 weeks, but we will find out more tomorrow morning. It also depends on how well her body responds to the expander. I am quite relieved to get this surgery out of the way, as it was delayed due to some problems we had getting the expander imported from Germany..... But our eye surgeon, worked wonders, and managed to get it approved... YAY!!

The surgery will only be a day procedure, but Ellie can sometimes not eat after surgery, so that would be the only reason we will be in hospital for over a day....

Hopefully I will be able to provide a update tomorrow on how the surgery has gone, and how Ellie is recovering.

No blog updates: 24 October - 7 November

Just letting you know that there wont be any blog updates from the 24 October - 7 November, as Mel is moving to her parents while some renovations are being done.

Another set back... when it rains it pours

As I had mentioned in a previous post, Ellie was scheduled for her MRI on Tuesday 19 October. We were looking foward to getting this out of the way, as it was 1 month since her first seizure, and just wanted to rull out any other possible causes for her seizure, other than WHS.

The night before Ellie was due to go in for the MRI at about 9:45pm I checked on her in her room as she had been unsettled all night, and just wouldnt sleep. When I went in I realised she had vomitted on herself, so I picked her up out of her cot, she was completely floppy, she had no muscle tone whatsoever. I thought 'this is not good'

We lied Ellie on the couch and she proceeded to have a seizure, this time not as big as the first (thank goodness) it lasted for about 8 minutes. By the time the paramedics arrived, her seizure had stopped. However they checked her temp and it was 38.8, this could have been partially the cause of the seizure.

At the ED at Monash they monitored her, and they were about to send us home at 1:30am, whilst the doctor was writting our discharge letter, Ellie changed, she was very unsettled and became quite hot again, whilst she didnt have a temp, her face was extremelly red. When the doctor came back, they thought it be a good idea if we stayed till the morning, as Ellie had her MRI booked at 8:30am anyway, and this way they could monitor her until then. By this stage I was really trying to get Ellie to sleep as she only had about 1 hour under her belt, but she was just getting more and more unsettled..... clock ticked over till 4am and she still wouldnt go to sleep, at this point she started to shiver, so the doctor and I watched her for about 5 minutes, she was alert, but just didnt seem right. Our thoughts were right, after a large vomit, Ellie started to have another seizure. At this point they gave her Diazepam, to stop the seizure. All I can say is thank goodness we didnt go home at 1:30am.

After all this the anaesthetist, decided it wasnt a good idea to do the MRI (as they had to do this under a general anaesthetic) even though more than likely Ellie would be ok, she had been through too much to risk it. SO the MRI is now booked for the 17 November.

The neurologist has up'd her medication, to help with preventing seizures, again this will make her tired, drowsy, etc but hopefully her body adjusts to it.

We are home now, which is always nice. Nothing beats your own bed, your own shower, and a hot home cooked meal. Below are some photos of Ellie in hospital.

Ellie gets the giggles

Ellie the SUPERSTAR (oh and did I also mention a 'model')

Today Ellie was a model for a day, and she did a brilliant job. Today in her occupational therapy session, she was photographed 'doing her thing'

Annie (Ellies OT) and I noticed a huge improvement in Ellie from 2 weeks ago. Today she was actively reaching for objects placed in front of her, and exploring them. She was also looking at objects whilst playing with them, this is something she normally doesnt do. Ellie normally will reach for a object, and explore it, all while not looking at it, so we are trying to get her to do the two things together. So this was a real positive thing today. We also did some weight bearing activities, making Ellie take weight in her arms. This is something she couldnt do 4 weeks ago, and she is doing really well, kneeling and putting weight on her hands for up to 5+ seconds..... Another huge step!!!

Rolling on the other hand, was something that Ellie had just started to do really well up until her seizure. Since the seizure she hasnt actively rolled herself yet. Today in our OT session we worked a bit on this, but I think this may take some more time...

So 3 positives out of todays session... gotta be happy with that.

I dont have photos from todays 'model shoot' however it looks like we will get some, so watch this space, & hopefully I will post some soon. In the meantime I have included some recent photos of Ellie... Enjoy!!!

Paediatrician Appointment

Today we caught up with Ellies paediatrician. I explained to him how I was still concerned that Ellie still wasnt completely back to her old self after the seizure, the only way that I could describe it, is that she has lost some of her 'Spark' and that she can appear a bit flat. He explained that this would all be a side effect of one of the anti seizure meds she is on at the moment, tegretol. He advised that this could be making her feel tired, nauseous, causing stomach pains, etc. He also explained that as it was a large seizure, it will take her some time to feel completely better.

Our plan is to monitor how Ellie is over the next 1-2 months, to see if there is any improvement, and to see if she adjusts to the medication. Fingers crossed she does, as I dont want to play round with to many medications either.  No weigh in today, I didnt think it was necessary as she was weighed only 1 week ago, and I really doubt there will be much weight gain.

Tomorrow we have physio again, which I am really looking forward too. We have been working really hard on Ellies exercises this week, so I have that Helene has noticed some improvement. Fingers crossed!!!

Watch out 'Australia's next top model'

Today started with our normal routine with Ellies exercises, she isn't so keen on them at the moment as she finds them quite hard after 2 weeks off, but we still persist. Here are some photos of her in action.

Today we had a phone call from Ellies occupational therapist Annie, who mentioned that as part of 'kids week' (I think thats right...) where she works they are having professional photographers coming in, who wanted to photograph some kids while they are doing their therapy sessions, the photos will be used on their website and wanted to know if we were interested... Of course we were. Watch out 'Australias next top model'. Now to work out what to wear for the big day next Wednesday.....

Tomorrow our weekly playgroup starts again, which I am really looking forward too. It is run by a Special Development school, for parents of kids with special needs/delayed development. All of the children are alot older then Ellie, but it is nice to socialise with other Mums, who understand what you are going through.

Always a goal to reach, not there yet...

Today started of with physion with Helene. It was good to get back into doing Ellies exercises, I explained my concerns to Helene about how Ellie has gotten weaker after the last 2 weeks of no exercises due to the seizure and being unwell. She has given me some new 'light' exercises to do, as well as keeping up with the other ones to improve her strength in her arms and legs and to eventually weight bear in them.

Helene is going to look into getting some splints that Ellie can wear on her legs and arms while she is doing her exercises. This will help them stay straight, and she will be able to put more weight on them. So hopefully we get them next week.

The title of my blog today..... "Always a goal to reach, not there yet" We have lots of goals for Ellie, but one we have been making light of lately is that we cant wait for her to hit 6kg. This doesnt sound that hard, but unfortunately it is, for the last 6 months Ellie's weight has been going between 5kg and 5.95kg, so hence the goal of 6kg (13.2lbs)

Everyone that has seen Ellie lately has commented on how much she has grown. Grown she has , but put on weight she hasnt.  Today we had a appoitnment with the maternal health nurse, and and I had my fingers crossed that we would get over the 6kg mark. We were close, but not quite there. Ellie weighed in at 5.89kg. But in our world 'Good things come in small packages'

New photos of our princess

You can just see Ellies second tooth coming through

Ellie trying to wiggle her way out of her chair, as she is over eating her dinner

On the mend again

Ellie has turned a corner, and is really starting to get back to her happy self, after her seizure and viral infection. Yesterday she laughed for the first time in 2 weeks, this really brought a smile to both our faces....  Its been really hard to see Ellie so 'flat' for the last 2 weeks.

Another huge thing, Ellie is finally getting her second tooth. I have been trying to get a photo of this to post, but trying to open Ellies mouth is not easy. Im convinced she thinks I am trying to get food into her, and as such clamps her mouth shut tight. 

This week is a busy week, as we are back to doing physio and occupational therapy, which I am excited about. We havent done any sort of exercises with Ellie over the last 2 weeks, and there is definately a noticeable decrease in her strength, so it will be good to get back to some sort of routine.

We also have a appointment with Ellies paediatrician on Tuesday, to review her after the seizure and to see how she is coping with the medication. So far there have been no huge issues with it, just that it makes her more sleepy, but hopefully her body will adjust to this. 

Frustration sets in, today is just one of those days

I think both Luke and I are very positive people when it comes to our situation and Ellie. We always seem to plod along no matter how hard things get, and never give up...

But frustration set in today, poor Ellie is still sick, she now has a viral infection which has caused a rash on her face, tummy and back, and the poor thing is battling a temperature.

With Ellie not being able to have her grommits put in at the end of September due to her seizure, I thought one good thing to come of this is that she has a nice break until 9 November without any surgerys.... so far it isnt a nice break as she is really not well. Today I said to a friend, "I need a holiday". I think Ellie needs a holiday too, not the sort where you get away, but she needs a holiday from hospital visits, surgery and sickness... 2 months of that would be nice... I dont feel we are asking too much, are we??

Two steps forward, one step back

"Two steps forward, one step back" I feel like this is a common phrase that goes through our head alot lately... whenever we seem to be making progress with Ellie something seems to happen or come along, that puts us back a few steps... What has made me think this, this time around??  

Up until 1 week ago, Ellie was making real progress with her exercises to help improve her strength, weight bear through her legs, and eventually help her to sit on her own. Just as she was doing really well with these, she had the seizure, now she also has a horrid cough and cold. I know this doesnt sound that bad, but due to all this I have had to cancel her phsio appointment today with early intervention and also her occupational therapy appointment tomorrow, as she doesnt have the strength at the moment. I know she needs all the rest she can get at the moment, to get her strength back, but its just hard, when we were making such progress with her exercises.

On a more positive note, we have received a appointment for Ellies MRI, this will be done on the 20 October at 8:30am, unfortunately they need to put her under a anaesthetic for this as she needs to lie very still, (which for those who know Ellie well, know this is hard for her... She was born with 'ants in her pants')

Anyway, Ellie sleeping at the moment, so will make the most I can of the 'me' time : )

Grand Final Day

Would have loved to dress Ellie up in 'Saints' Gear today, but unfortunatley they dont make any of it small enough to fit her...

Ellie seems to be doing well after her seizure, but the meds seem to be making her quite sleepy throughout the day, so we just need to keep a record of how much she is sleeping to see if it slowly decreases. The drowsiness may be due to her being on 2 meds tegretol and phenytoin, so that is another thing, but she is only on 2 for another 18 days, then it will drop to 1.

Mind you I must say it is nice to have a bit more of a break during the day with her sleeping a bit more, as normally Ellie is the queen of catnaps. She has also developed a really bad cough in the last few days, which has made her vomit twice... so am hoping this goes away as well...  otherwise we will be back to the doctor as in the last year Ellie has had mild bronchitis twice and been hospitialised both times. Aside from that all is well, just a pity that the Saints couldnt win.

Our first blog

This whole blogging thing is a new world to me. I dont even think I have read someone elses blog, until I decided I wanted to start one for Ellie. The purpose of this blog is keep you all up to date with how Ellie is doing.

The last few days have been a bit of a blur. Whilst away for the weekend in Rye, Ellie suffered her first seizure at 1:30am on Sunday 20 Sept. This was frightening to say the least. Once paramedics arrived her seizure went for about 1 hour before it was brought under control, at which point Ellie was taken by helicopter from Rosebud hospital to Monash Clayton... this was painstaking, as Luke an I had to drive ourselves to Monash. I think that car trip was a blur, Luke safely running red lights to get us there ASAP.

Unfortunatley seizures are a part of WHS but we thought Ellie was lucky enough to escape them. Currently she is on 2 anti seizure medications, and over the next 20 days this will drop to one. Hopefully the medications will reduce the severity of any further seizures, if not prevent them.

Whilst in hospital she had a EEG that showed some abnormalities, however it is what they expected due to WHS. In the next 4 weeks she will need a MRI to rule out any other reasons for the seizure, however the doctors are confident that it was due to WHS. I will keep you all updated with the MRI date and results.

Ellie is back home now after 4 days in hospital and is slowly coming back to her happy smiley self.