1 More Sleep Until Disney

Yesterday  Kourtney, Marijke and I went to children's for one last dressing change. Kourtney only needed a light sedation as her pain has been minimal and basically the site is all healed up. This means that now the torch will be handed back to me. The familiar nurses were sad to see Kourtney go. They loved all the "spectators" that came to see Kourtney's dressing change. I assumed we looked like rednecks coming from the country to the big city. We brought in our coffees.  All we needed was popcorn for the event. However, the nurses loved the company. They did the dressing change without any help from me. They said that usually parents don't come in because they don't have the fortitude to watch a dressing change. It was nice to be a spectator and not have to involve myself unless I was asked. We said our goodbyes, hoping our next time there would only be to visit.

Although it's all over, a whole new chapter of life begins as we look into prosthetics, physio and regular surveillance of her skin for cancer hot spots. As of now we know she is completely free of cancer so we can breathe. We aren't sure what is in store for Kourtney on a personal level. At this point school may be out of the question. We want her to start a vlog (video) of her life and every day accomplishments. I do think it would be a great way of communicating and educating the world on disabilities and EB.

Yesterday after Kourtney's change we took the opportunity to go shopping for last minute Disneyland accessories. It's strange but if I am going to have a panic attack it will be in a mall. Although I hid it well, the worry and fear that came over me caused my heart to race and I had to sit down. I felt worthless, exhausted and defeated. I always seem to talk myself out of it as quickly as it sets in but the cloud lasted longer this time. Although the countdown to Disney is on, Kourtney still needs a blood transfusion. She lost so much blood with her first surgery that her body isn't keeping up with her needs. So now less than 24 hours before we fly Kourtney will receive the gift of life. No stress at all.

The good news is that the suitcases are packed and just awaiting final touches. This Disneyland trip has been a complete act of faith. We didn't put any cancellation insurance on the trip as it was unlikely we would get covered due to Kourtney's surgery. I do think if we had cancelled we would have waited a long time for the surgery with nothing to look forward to.  It would have made Kourtney's recovery much more difficult.

So just to be clear, I am not busting Kourtney out of the country against medical advice. I know I have complete support and trust of the medical team. They have all worked diligently to get Kourtney  ready to go. I have gone through every worst case scenario in my head and this is what makes me worry. Kourtney still has her picc line in. So should she need IV access it will be comforting to know it's there. We have great medical coverage as well so I feel it will be ok.

Kourtney is tough and I believe she will be covered in prayers when we go, right?????