14/04/2025
Hello everyone!
This is a very special week because after 25 years with the same pediatrician, we have an appointment with a new doctor. I'm not sure what this journey is going to bring us but I am wishing for the very best I would love for all of you to pray for the absolute best in this endeavor.
I know it has been a long time since I have posted about my baby girl, I was and still find myself angry by the lack of options and cure for my daughter's condition.
I also have felt some.sort of way woth how some people in my life - eother by choice or by necessity had responded to it. It's mind-blowing because I get people who visit this page regularly and sometimes it's 10 a day- it's been disgusting to learn that people have utilized this page for stalking and shaming others that have nothing to do with this little girl.
So when you add the additional stress of doing this by myself with an absent father it's just negative energy...So it was better for us that I didn't Post.
Honestly there is really not a lot to update,
Amalies condition has evolved in some ways but its not gotten better. A journal quite a lot of things that have transpired with her and her behaviors I can tell you she has many days in bed still.
Sadly just in the last 5 weeks my little girl has had numerous headaches, so what I thought was maybe down to 3 a week for a bit is back up to 5, with 3 at least pressure pain rage of 7.... :(
On a brighter side of this dark realm,
She has an understanding now of her body and what happens in reaction to her issues so often she's able to maintain a protocol to treat it. Making some things less dangerous for day-to-day life and more of a "norm" day to day feel. We have some understanding instead of fear.
Although her condition inhibits her from behaviors other children of her age experience and exist in, she still has a productive life with friends that she has made and loves enhancing her social aspects that she was missing out on from covid to her debilitating condition. She has days where she feels just the same as those around her and THAT is happiness!
This year she went back to school in person for a half day although I had hoped it would be a stepping stone to a full day, it seems unfortunately Unmanageable at this time But We've had Wonderful support system From different individuals In our district and our school that has allowed her to academically prosper even so. She also made honor roll this year which was outstanding considering she has a very difficult time processing with her memory and brain issues We are very grateful for those individuals that help her achieve this goal.
Throughout this journey with her that has been somewhat devastating at times we've learned a lot about accepting and understanding what we can't control and with that brings a slight form of peace.
Additionally many people on this page know that in 2024 my second youngest daughter was poisoned in her workplace due to negligent management and lack of safety procedure enforcement. We've had quite a journey but there is a light at the end of that tunnel. Unfortunately At the beginning of 2025 My middle daughter was diagnosed with stage 4 metastatic crc cancer which ultimately has been diagnosed terminally bound. This is been a lot for my little girl she loves her sisters she loves her family so you have that to take into the equation of "us" but we are strong and we continue to push forward.
I am excited to see what this next medical Journey brings Amalie, I certainly hope it gives her some physical relief that will ultimately ease up the mental stress.
Thank you to all of you who care ❤️
