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.