03/09/2024
Hello everyone. I thought I would do a big update on Daxton. He is now 4 years old! How crazy is that!
Over the last 7/8 months he has developed different types of seizures, he now has absent, brief tonic clonic, galastic, status epileptic tonic clonics seizures.
We haven't found a cause to why he has suddenly had more but the end of last year they found a new blood tinged pocket of fluid in his head that has since resolved its self, there were thoughts of his shunt draining too fast and causing the membrane to collapse in causing the new fluid pocket. But since it resolved theres been no other changes in his brain.
He is now on four seizure medications kepra, toperimate, clobazam and now epilim.
Hes still very much addicted to blaze and the monster machine episodes and toys 🤣
He continues to love going to hydrotherapy and just loves the water!
He is starting to walk! He now has an awesome walker that hes still learning to use. He hates wearing shoes and will only use one leg in the walker 🤣 but when im holding him he will use both legs at different times taking steps! I'll upload a video later.
He hasnt gained weight in the last 6 months and from 20months old to now hes gone from being over the 99th percentile to just under the 85th. So now we are in talks with a dietician to see if we can get him putting weight back on.
Glasses, ugh this is a never ending fight 😭🤣 he wont keep them on or patches because one eye is turning inwards slightly. And has shakey eyes. But refuses to wear the glasses or patches! Any tips?
Daxton now has a electric wheel chair that he is slowly learning to use. Now we will have go find a wheel chair van to buy so we can get it around once he is fully into using it 🤣
We are aiming to get daxton to the center of movement in the gold coast at the beginning of next year, ive seen soo many kids go there and progress alot! To get myself and Dax their it will cost anywhere from $15-20k, so we will be doing fundraising the next few months!
Daxton is getting more and more chatty too thanks to blaze 🤣 he tries to sing the theme song for it and counts in his own babble along with blaze some numbers you can make out like 3 6 7 8 and 10 🤣.
Honestly im so stoked with how far Dax has come. From the doctors saying he will either be dead by now or severely affected by his disability that he would basically have no quality of life and be bound to a wheel chair with machines and tubes attached to him!
Thats not our Daxton tho. He is a fighter
