Meeting WHS Friends

Today we got to meet Anna and Ryley. Anna and I have spoken a few times, and have been in contact via facebook and our blogs. Its funny how even though we hadnt met in person, it felt as if I already knew her.

It was great to meet another WHS mum, and chat about issues and problems, good times and bad and they know EXACTLY what you are going through. Its also nice when in conversation about your child and what they are doing you dont feel like the odd one out, or the mum who cant join in that conversation because my child doesnt do that, or isnt there yet developmentally.

As most of you know I have battled for some time with Ellie and feeding and food in general and sometimes I get the guilts as sometimes the only thing Ellie will eat well is custard, so somedays she will have that twice a day... talking to Anna they battled the same thing with Ryley and yoghurt, so we are not alone...

Ryley, well he is just gorgeous... he was very taken by Ellie and kept wanting to hold her feet and hands or tickle them. He has a very cheeky smile, and wasnt so keen on posing for a photo with Ellie at first, but we convinced him in the end.

In one of my previous posts, I mentioned how I was thankfull for the new friends I had made (even though I hadnt met them yet) by having a WHS child.... Here is to new friends!!!

Uh Oh, Tummy Time...

As most of you know Ellie HATES tummy time... however recently with Ellie now being able to roll, she manages to get herself on to her tummy all by herself. Once there she realizes where she is, and does everything possible to get back + SCREAMS. But she is struggling to work out where to put her arms when rolling from her front to back. She is determined and she knows where she wants to get to, but is just trying to work out how to get there.

It is also forcing her into trying to lift her head whilst on her tummy, as you will see in her superman poses in the video... Enjoy!!!

Not many words needed today

Today for breakfast Ellie ate 1 WHOLE weetbix with milk and a whole heap of custard..... Not much more is needed to be said except for....... WOO HOO!!!

Therapy Update - 2 positives

Yesterday we had physio with Ellies new therapist, Trish and she brought our new OT, Laura with her. YAY!!! We finally have a OT through early intervention. This makes it so much easier as through early intervention the physio and OT come to us, and we do therapy in our own home.

As soon as Trish & Laura arrived, Ellie decided whilst lying on her play mat that she would lift her head off the play mat, over and over.... Trish was so excited as she explained this is a sign of Ellie wanting to sit. So she showed us a way to get her up and back down to the floor. Basically when Ellie is lying down, when we go to get her up, instead of picking her straight up, roll her to her side, and she puts her hand out on the mat and pushes up. She explained that this teaches ellie that she can do this, and isnt as uncomfortable feeling as us just putting her in the sitting position (as when we do she screams and throws her head back)

I was so happy to see Ellie doing this, wanting to get up, now we need to work on getting her to want to do it herself.

Another positive was that we brought the high chair out again, and both Trish and Laura showed me how to sit Ellie in it (this is hard because of Ellies small size) but it was a success, she liked it. The only problem is that when we put the tray on the high chair, Ellie can only just see over it and her arms cannot reach the tray, so this prevents any form of self feeding... Which they told me is something we could start working on... Another YAY!!!!

So... Now I am a woman on a mission and need to find a highchair that gives Ellie the support that she needs, and has a tray that she can reach. That cant be that hard can it???

Self feeding really excites me, it makes me feel like Ellie is getting some sort of independance that she should have, and maybe I am getting too excited, too soon, as I know this can take a while with WHS kids... But I am hopeful.... Especially after seeing Norah, who also has WHS, starting to self feed. Way to go Norah!!!

Neurology appointment update

Today we had a appointment with Ellies neurologist. We discussed how Ellie had been, mainly over the last week, as up until then we had not noticed any seizure activity. Over the last week Ellie has had 3 obvious seizures and quite a few absent seizures or vague moments as I describe them, the most recent was 2 yesterday.

We also discussed how Ellie had been so unsetteled and hysterical for most of last week after her seizures reappeared, his thoughts were this could be one of many things such as:

1- Increased seizure activity that was making her iritable
2- It could be due to a medicine (clobozam) that we took her off, that she could have possibly become sort of dependant on or liked the way it made her feel as it seemed to control the smallest seiures
3- Or the simplist reason, she could just have had a bad week, felt unwell, teething etc....

Who knows..... SO... where to from here. We have put Ellie back on the clobozam, (as well as her being on the trileptil) as the clobozam seems to give great seizure control. If in 1 week we have not noticed and sort of seizure activity then we will take Ellie of the clobozam and see how she goes, back just on the trileptil. If the seizures appear to get out of control again, then we need to reassess and she may need to go on another medication or we may need to add another one for her to be on together with the trileptil.

I am happy with this, as there is a plan in place, I think however the hardest thing is, you never know how things will go. It is all trial and error, and a matter of finding the right medication and the right dose for Ellie.

I have to admit, I am happy with the trileptil, in the sense that Ellie still has her personality with it, she smiles, she talks, she laughs, she is happy, where this did not happen on the previous medication, so ideally I would love to see the trileptil control her seizures... Once again, fingers crossed!!

This afternoon we have physio and our new occupational therapist is also coming... YAY!!

Just some new pics.... enjoy!

New Friends... even though I havent met them.

Through Ellies blog, which has been up and running for about 4 months I met a few other mums who also have children with WHS. Then most recently I have met more WHS mums on facebook.  Mostof them live overseas, America, Spain, England, etc and one of them lives in Ballarat, and its funny because even though I have never met any of these mums, you have this strange connection and bond through both having a child with WHS. And when they say to you, I understand what you are going through, They REALLY do. 

Im not saying that other mums dont understand because they may, but mums of kids with no health or genetic issues, will never truly feel or understand the frustration and upset that comes with having a child with a disabilty. 

With saying that there is also alot of joy that comes out of having a child with special needs, such as when they reach a milestone, and it may be something as small as clapping, shaking a rattle, or even eating a new food and enjoying it. Then comes the big milestones such as rolling, sitting, walking etc... They are truly to be celebrated.

I could have written a sad, frustrated post today because we really have had a bad week, after Ellies seizures on Saturday and Sunday, we have been left with a child, when she is not asleep is iritiable, agitated and hysterical and nothing we do can seem to help. This is what seizures do to Ellie. I dont think it is the seizures that we dislike the most, it is more the aftermath of them, and the effect they have on Ellie... 

So... As I said I could have written a frustrated post today, but I thought that may not help our situation, instead lets celebrate the friends that I have made out of having a child who has WHS, even if some of them are miles away.... Thank you!!

Still not 100%

Ellie still isn't 100% since her seizures on Saturday and Sunday. Today she had about 1 hour where she kept having absent episodes, and she isnt really eating, she just isnt interested in food and taking alot less milk. Need to keep an eye on this as she cannot afford to eat less for too long.

However I have found one thing that helps, even though I find it quite disgusting. Ellie LOVES custard, no matter what flavour, so tonight when she wouldnt eat dinner.... I added custard to it. So for dinner Ellie had bolognese, with pumkin, and custard... all this was mashed together in one bowl. It would revolt anyone, BUT.... She seemed to like it.

Today we also tried side sitting again with the bumbo cushion, and if you have a look at the photos below you can see that I am not behind her in the photos.... thats right I had enough time to get from behind her to the front to take the photo. Ellie sat in side sitting without me holding her for about 4 seconds. WOO HOO!!!!

And I thought I "Touched Wood"

For the last few weeks, everytime we saw a friend or relative they asked "How is Ellie doing" Our response was "she is doing really well" (TOUCH WOOD.... Which I would do) Maybe we didnt touch hard enough. Today Ellie had a bad day all day, was iritable, agitated, clingy, upset (you get my picture...) Ellie is very rarely like this. I thought maybe it was teeth....

NOPE... It was seizures. She had 2 tonight, and  afterwards I realised that today could have been build up too them  (Question for the WHS mums: Can seizures build up over hours or days????) 
They were not big seizures, both lasted 5 minutes, however as there was build up all day, Ellie was really agitated after the second one.

We have been in contact with Ellies neurologist over the last 5 weeks since her last seizure. She hasnt had seizures but she has had STRANGE behaviour, so her meds were up'd twice. Now that she has had 2 seizures tonight, the meds may be up'd again, ill be in contact with him Monday.

On a good note, Ellie hates anytime I try to get her to practice sitting, so a few days ago we practiced side sitting, this was SUCCESFULL, no screams, and she weight beared slightly. This is a good sign, I am now going to work on side sitting, and hopefuly this will lead to sitting. Fingers Crossed!! 

I am not so sure of this sitting business Mum...

Look Mum.. I can do this without your help

All this sitting makes a girl tired... time for cuddles with Dad

Back into routine....

Yesterday we had Ellies first scheduled therapy for the year, this was for physio. Unfortunately we are loosing the PT that we had as she is going to work somewhere else, but yesterday she brought along Trish who will takeover from her, so yesterday session was a bit of a handover session and for Trish to see what Ellie has been doing and to discuss where she was at. I really appreciated this as I didnt really feel like starting what we were doing from scratch again. Following on from my new years resolutions in our next physio session in 2 weeks time, I plan to sit down with Trish and set some goals, that we both think may be acheivable and work out exercises to help us acheive these goals

In our session we tried using the arm and leg splints that we had made for Ellie, these are to be used whilst doing therapy to get her used to and to help her weight bear through her arms and legs. These are really important as Ellie used to weight bear through her arms for a short period of time before her seizures started, and now she cant really bear any weight in her arms, so these will help her get back to where she was.

Ellie is also rolling unbelievably well, she goes both ways, but sometimes gets her arms stuck and forgets that she has to move it, so she screams like crazy until she gets it right, it is a real sound of determination... She knows what she has to do, she is just still working out how to get her body to follow. It is great to watch her do this.

Tomorrow we are off to OT and I am going to work out some goals also with Bianca and ways to meet these.... wish us luck... this year is a new year, new things to learn, new things to do... for ellie that is, not me...

Just some new pics.... enjoy!

Just chillin out watching tv....

A new pic of Ellies glass eye, looking better each day

Just sitting in the bumbo... getting so much better at this

Ellie trying out her high chair, she is now almost big enough for it

(But she is not so sure of it)

YES!! That is hair that you can see... Finally we have wisps of hair!!!