Grace has had an eye specialist appointment today and she is going blind, she doesn’t respond to light, she not focusing or following. Sad and unfortunate, main thing is she can still hear and respond to music and sound. There’s nothing the specialist can do for her, she already under blind and low vision. But she has gotten worse with her eye sight.
Today marks 7 years since Grace’s big sister Anita passed away at 6 years old, to the same rare genetic condition that Grace has.
Grace had a seizure a few days ago needing emergency medicine, same day Anita was rushed to hospital for a massive seizure. Where Anita was placed into an induced coma while she still seized for nearly 12 hours, few days later on this day 15/3 Anita passed away. Same day as the Christchurch event 7 years ago. Last few days have been hard, especially the other day brought so much emotion.
Grace’s feeding tube is damaged, and she possibly be needing surgery earlier than May. Just waiting to hear back if it can be pushed forward, nurses are checking. She has to have her feeding tube replaced every 6 months. Her current feeding tube is leaking, so we having to leave an extra extension tube in to stop the leak as the valve is broken on the G port. I think this is from over worn from taking the extension on and off for multiple medications during the day. The green arrow in photo is the J port that goes to intestines and red arrow is to the G port to her stomach to do medications. Because her tube in intestines she needs GA surgery to replace every 6 months, unlike the old tube where I could change at home every 3 months. Grace’s seizures have slightly increased, waiting to hear from starship on what medicine to increase. She is still vomiting her evening meditation, even after doing a few tweaks to spread out the meditation to limit the big volume she has for the evening and on a full stomach.
Grace’s vomiting has settled a lot, but still vomiting at night at end of her feeding and her last lot of medication. So she not getting a full dose of medicine from the vomiting. This is still a bonus with reduced vomiting. Grace gets very hot in her wheelchair during summer.
Grace sleeps with me, but she now needs a hospital bed. We now need to look at a SAMi seizure camera alarm system for her hospital bed. She will go into the room Anita was last seen alive in, so lots of emotions. So want to make sure things are in place for Grace.
Grace is looking at going to starship for her ongoing vomiting. She is vomiting bile and possibly dry blood, as there’s brown streaks in her vomit. This has been happening since having a GJ tube (small intestines) put in. Starship has a gastrointestinal team, which Waikato doesn’t have. Her vomiting has been an ongoing issue for 2 years.
Grace needs to go back to hospital to check her GJ tube out. She is vomiting green bile and possibly some dry blood. There’s possibly a blockage or it’s come out of the intestines. She needs to needs to go on the drip and have an x ray and if it’s out of place she needs the procedure done all over again
Finally Grace has had surgery. She still in post OP, everything went well and we will see how feeding goes and if she continues to vomit or not. She was very sleepy and didn’t require much for anaesthesia today.
Grace will require to have same procedure every 6 months to replace the tubing, which is now in her small intestines
Grace has surgery this week. It has been a long awaited time. As she had 2 cancellations, Grace is so far well enough to have this done. As the last 2 were canceled from a chest infection and influenza A. Hopefully this will stop her vomiting or reduce the amount of vomiting. So we can start the ketogenic diet.
*Will update after the procedure and at home*
Grace is booked in for surgery in a few weeks. We are hoping she stays well enough for it, as she has had 2 cancellations so far for the surgery to help with her vomiting.
We want to acknowledge the generous support we received from Make‑A‑Wish, who kindly assisted with flights and accommodation for our trip. Their help made a huge difference.
At the same time, we also contributed our own personal funds during the journey, covering everyday essentials such as gifts, food, and petrol. These costs were necessary to make the trip possible and meaningful for our family.
Your support continues to help us manage these expenses and ensures we can focus on recovery and stability. Thank you for standing with us.
Grace is recovering from Influenza A and is taking awhile for her to recover from. (Myself and her brother also caught this)
She caught this last month on her birthday. She has started a new medication as she showing dystonia symptoms from the influenza. She has been in constant on and off pain for over a week now and has been crying non stop, because of this dystonia. We have done lots of cuddles to comfort her. Some days I’m holding her all day.
Her surgery was cancelled because of the influenza A. This is the second time it has been cancelled.
We are hoping she is well enough to get this surgery to help her vomiting so we can start the long overdue ketogenic diet. But we need to have the vomiting sorted, which the surgery is meant to help reduce the vomiting.
Hi everyone, extending closing date for end of the year. To cover Christmas and for when Grace gets her surgery for her new feeding tube. So I can update everyone about what’s happening for Grace
Grace is back in hospital with a respiratory infection from aspiration, high heart rate, oxygen, very unsettled and catching up on sleep. She is on IV fluids again and IV antibiotics
Grace is needing a new feeding tube called a J tube, which goes into her intestines. She will need to be sedated for this and they push it through her current g tube (mic-key button)
She will have to have constant feeding at a slower rate. Means she be hooked up all day to a tube. Hopefully this will help with her random vomiting
Grace is currently in hospital to help control her feeding. She has tried many different formulas and she not holding them down. She is randomly vomiting and has been doing this since late 2023.
She is on 4 hourly blood levels check for sugars and ketones. Her ketones were up last night, she is on IV fluids to give her stomach a break. She also showing new signs of a new seizure.
Grace’s Birthday is at the end of October, sharing an update if anyone wants to make her day special. Givealittle pays out monthly, so hoping to book/plan things ahead of time.
Grace will be turning 4, her big sister Anita passed away at 6. So time is precious to us.
Grace also has dermatitis on her cheek and now needing creams, she still recovering from a cyst (block duct) on her eyelid. We are still waiting to start the ketogenic diet, since she needs to be admitted in hospital for a few nights, to make sure she is okay with sugar levels.
Thank you
Hi everyone I have decided to extend the closing date to maximum date I can, to October as Grace’s 4th birthday is in October 🎂🥳
If anyone would like to make her birthday extra special?
We have a big week trip already planned ✈️ which I will update after her birthday (if I’m able to extend the dates again on here)
Thank you
Grace got a new Mascot Crowntail betta today, with some live plants.
Thank you for all your support ❤️
Grace is doing well, she is trying to keep well during the winter months and avoid any illnesses.
Seizures have been manageable.
Today we went and saw Lilo & Stitch, we nearly missed the starting as finding mobility parking was very limited.
We are still trying to make as many memories as possible for Grace, even if it’s small.
Just have to make sure she is well during the winter. She loves watching movies
Yesterday we visited Grace’s big sister Anita at the cemetery. Yesterday marked 6 years since the passing of Anita at 6 years old, who would be 12.
Grace spent a long weekend up North, visiting some family members she has never met.
We visited Kai Iwi Lakes and a few other places.
Graces big brother enjoyed swimming at the lake.
Currently Grace has an infection, which waiting for it to get better, before planning any other trips.
She is also allergic to mosquitoes and sandflies, which gives her blisters, even making sure she covered up with antiseptic stickers, sprays etc. So this has made things difficult and keeping the outdoor trips short to prevent this.
Grace got to meet and pat the baby lion cubs, since she loves her cats at home.
We thought she would love seeing some baby cubs and lions 🦁 she also got to see many other animals and a little cave with underwater view of some trout.
Grace enjoyed some of the lights, unfortunately we didn’t see all of the lights. As some of the pathways wasn’t suitable for her wheelchair, the small gravel paths made it difficult to push her.
We have a few things lined up, for our next few trips. See the lions and pat the baby cubs. Go up far north, to meet some family for first time.
Thank you everyone for the donations so far to help give Grace some amazing memories. We are looking at going to the TSB light festival in New Plymouth, which I’m sure Grace will love seeing all the beautiful light artwork.
I'm so happy 😊 you are doing well Grace ❤️ keep having lots of fun with your loving family x Love and blessings to you all for a wonderful 2025 🙏🙏❤️❤️ love & hugs Colleen x
Thank you everyone who have donated. Grace had a wonderful time, she had a few seizures onboard. Which were manageable, we were so lucky to not use any medical services.
Thank you once again ☺️
This is such a blessing to know you managed to have a enjoy your trip away Grace🙏love & blessings to you all for joy and happiness throughout 2025 xx love and hugs Colleen xx❤️
