Thank you Giveaway!

In celebration of reaching 200 + Likers on my Page Lilly Lane-Kids without Diagnosis I am saying a big thank you and Giving Away a White Musk Heavenly Bag with thanks to Louise Warner from the Body Shop.

It contains White Musk Shower Gel and Body lotion60ml, White Musk soap, Shea Body butter and a Sisal wash cloth all in a convenient toiletry bag!

To be in the running simply visit my blog
 http://lillybellbaby.blogspot.com
     
And leave a comment under this post stating why you deserve this "Pamper Pack" Each comment will be given a number in order of post,  and a winner will be chosen randomly through Random.org. Winner will be notified via this Blog. Get your comments in by Friday 29th April!

This giveaway is soley the responsibility of Lilly Lane - Kids Without Diagnosis and Facebook or Blogspot are in no way affiliated with this giveaway. Winners will be chosen randomly using Random.Org engine and notified via this blog. If postage is required there will be a $6 postage charge. Sorry Australian Residents only. Entrants are required to leave a comment under this post stating why they deserve to win, be given a number in order of post and randomly chosen through Random.org. To post a comment entrant will need to sign in and follow this blog by creating a Google account or similar. Giveaway begins Friday 15th April 4:30pmACST  and ends Friday April 29th at 9:00pmACST.

Louise Warner The Body Shop at Home : 0430 063 171 for home pampers parties to share with your friends! Free gift to the host and special goodies for your friends :)

We have a Date!

We have a date for Lilly's Gastrostomy tube. 29th june in the morning. One night stay. Going to be a long two days! How do i feel? Well i watched the this is my button dvd given to me by Novita, and i cried and cried, does that sum it up?
I am anxious for her to get it done, and for it to be all over. For her to have a normal face without tape. For her to have a normal routine once it is in. For her to be more willing to try things orally without the NGT in the way.
I am also terrified, although in my career as a nurse i have looked after many kids with PEGS, this is my kid with a PEG! I am also saddened because it feels more final, even though it is reversible i cannot see in the future far enough to see it being reversed :(

We saw the metabolic doctors again. They said we are nearing the end of the list of possible tests and as we get closer the chance of getting an answer is more remote. We said we are prepared for the fact that we may not get an answer and that that does happen, but my heart is not prepared , it never will be, it will never rest.
They want to do a skin and muscle biopsy while she is under the anaesthetic having her Gastrostomy inserted. This will test for mitochondrial disorders and NCL disorders of which there are 9. Thay think they are likley tpo be normal but they however need to rule it out. They have also taken blood to extract more DNA and sent to the USA to a special gene research lab for testing in the hope thry might find some rare thing in the genes that is not tested for here. That will take months.

Lilly has a chest infection at the moment and is on Antibiotics so we are on watch again. Luckily her seizures have been minimal, one to two a week if that, just brief staring ones. The phenobarb is down to two mls, and she is much more alert, rolling over, trying to sit up, responding more. Her leg muscles are still stiff and she needs physio to loosen them. We are starting swimming classes with Novita in a few months time. We have a bath lifter and giraffe chair now which is making things so much easier. We need to keep her back straight because she slouches and is getting a curved spine.

Life is becoming more normal, i don't cry every time i hold her now, only sometimes. I don't know if my heart will ever stop breaking over and over again. I am enjoying her smiles, her responsivness, her laughter and her personality. There is a chance that she will go backwards and i do not want to miss anything she does before that happens.

So we wait. Wait for the peg. Wait for more results. Wait to see how she develops.
wait..wait..wait...