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??