Wednesday, 4 July 2012

4th of July

Very special day for Americans but just another day for us boring Australians. Jayden asleep by my side at 6:30pm and Luke and Layla not long to follow. As for Danny and I, we will be in bed early too so no celebrations for us. Would like to have gone out to see fireworks but jayden needs to be on his pump early, especially when he's fasting like tonight so just not possible. But that's ok because we had a lovely day out with the kids today and an early night is just the ticket to end a beautiful day.

Very hot today and we didn't head out till late morning. Went back to Funways as requested by the kids and spent a good couple of hours playing games to win tickets for very cheap and nasty toys that the kids loved. I have to say Danny and I had a lot of fun as well.

Came home and within twenty minutes of being inside the kids were hanging out to get out again so Danny took Luke and Layla swimming and jayden and I hung out in the air conditioning at the local shops for a little while. Would have loved to go swimming and I know Jayden would have too but it's just not an option at the moment.

The best part about today was jayden had no treatment and not only did that mean no aneasathist but also no fasting. The kids love that because they know they can eat. When he's fasting they cant have their breakfast until we have left for treatment and they hate that. Although lately it hasn't been too bad with the new time as we are usually out the door before they wake up.

He did ask though if we were going to see 'nannA' which was so cute, he's really going to miss Mary Anne when we leave.
Back into treatment tomorrow however and hoping to get a chance to speak with someone about jaydens MRI. No one has yet spoke to me about the comparison to the other scans so anxious to hear the results of that. Am hoping to see Dr Goldman this week as well as have a few questions I want to ask him. Jayden also had bloods taken on Monday and would also like to know those results.
So hopefully by the end of the week all of those questions will be answered.

Jayden never vomited today which is fabulous and he was just brilliant all day, they all were. I love my kids. Every one of them is so damn special. They are what gives me the strength to get through each day without turning into a basket case. They are my reason to keep going. I am so grateful to have them. My precious babies have grown into beautiful strong, courageous and brave children through this shitty situation. They manage each day without question, without judgement and with strength. They help each other through this difficult time and they make me so proud.

We will never be the same family or individuals that we were before this mess happened but we are stronger as a family and together we will some how get through this. We have done so far and I know we will continue to. Just one day at a time......

1 comment:

  1. I am the mother of a child who has been cared for at ProCure, and in following your blog, have felt your cry for hope. God knows all things and sees the eternal picture. Trust in Him. He loves you. Allow your suffering to draw your family to Him. He will continue to work through your trials, and make the difference in your lives. Jesus is the hope that has carried our family, and continues to provide. Thank you for sharing Jayden's Journey. Blessings.