Thursday, June 24, 2010

Update on Miss S

I'm sure ppl are getting tired of hearing about this journey? so I'll be brief. It was papa's call from the judgement of the coorindator of the neurology department as to whether we wanted to take S home to wait for her surgery and how soon. That was yesterday I believe (lost in my days) and they came home today. S is still very quiet, not really least now when she walks across the room she knew what she was going to get before walking back to the couch to lie down; we thought she was just too weak to go play or whatever and gave up to lie down but it was cross signals in her brain that was part of it. Her eyes are stable, she is trying to eat like a horse despite doc's orders to keep it slow. Her neck is VERY rigid, not likely to change until surgery, she's GAINED 4 lbs since last Friday night and we're just keeping everything very low key and non stressful for her. Everything's in place, A/C units are keeping her body temp in check, she'll co-sleep with us and I'm going to flashlight her eyes at night to check for dilation like they did in hosp, supplements are here. I think we've got it covered. If anyone thinks I've missed anything, plse let me know, she's home but by no means is this journey over for S.....the waiting is going to be a HUGE challenge for those darn test results but I'm finally confident that the team is lining everything up perfectly towards the next step to surgery. I can't bear her having to go back into surgery but she can't stay like this. Mixed emotions for sure. At least she'll be stronger by then and under sedation for hours only rather than days.

Asking for more prayers for the biopsy results quickly and cancer free! THANKS! So much for being brief...sorry!

Some news from the Seatons....

Yale is going to be a big brother!
estimated due date of February 27th 2011 :)

Saturday, June 19, 2010

This Poor Poor Girl

Hey everyone! I need your help again. A local mom is going through every parent's worst nightmare!  Her daughter is critically ill and the future is unknown! Here is a post she put on a forum I requent...

Yes, my Miss S is in CCU; she has a brain tumor, she's had a shunt placed in the area of the mass as it was blocking vital fluids from moving through her brain and spinal cord. She is on IV fluids, is being kept sedated at least until an MRI is performed. The mass MUST be removed, they just need to have better pictures to see what they are dealing with. She has had seizures which was the only way we could tell that her situation is critical, she has been in and out of hospital for the last 2 weeks now and 4 weeks of undiagnosed vomiting as there was no fevers or nasal problems to accompany so it wasn't a virus. Her weight has dropped remarkably and it is because of the Autism that the doctors believe that she wasn't able to effectively communicate that she's been having migraine headaches, it was only once she started seizuring that they pieced that the vomiting was being cause by the tumour. If those final symptoms had not shown up the connection might not have been made by us or the medical profession and we likely would have lost our daughter. But for now I am trying to cope with the stress on no sleep for 4 weeks and trying to care for C as well and I am alone this weekend at home to tend things here. I cannot get out to do groceries so we're living on what we have available in the house until V comes home and can relieve me so I can get some food in the house and try and keep some kind of a normal existance here while my very tiny child who is now the weight of a 2 year old and not a 4 year old with her fate in God's hands as well as her team of specialists.

I apologize if I can't be very clear, I am VERY tired and worried I'm going to lose my child; cancer in the mass has yet to be ruled out.
Please Please PLEASE bring on the strength we have shown for everyone else we've prayed for. We have worked miracles in the past (look at my boy) and this family definitely need a miracle now!

Thanks so much!

Friday, June 4, 2010

Good news and other stuff!

Hey everyone! I just wanted to do some quick updates. Thanks for everyone who sent out prayers and positive vibes for Lilia. She is now home with family! There are still some issues to be dealt with.... but thank goodness she is home!

I got to visit with Tyler's niece Jordana on Wednesday. I got to see her beautiful daughters who look amazing! Her and Kyle seem in great spirits and are doing a fantastic job at parenting while being stuck in a hospital! Way to go guys!

And yesterday Yale attended clinic at HSC and was asked to be involved in some footage for the David Foster Foundation. He was filmed undergoing an echo and being scene by Dr Dipchand. Not to mention just being his cool self giving every high fives and kisses! Check out the David Foster Foundation facebook page to see some behind the scenes pictures taken by clicking on the title of this post! It'll still be a while before we see the end product, but we were glad to help out in any way!

The real news however is that Yale did great at clinic and we won't need to go back until Yale's biopsy in October! YAY!

Tuesday, June 1, 2010

Good news!!!

Lilia is going home today! Thank you so much! All the info can be found on her blog... (look to the right....) Lilia Christine.... The power of positivity!