Mornings usually start at different times. Sometimes he is up at 6 am or sometimes he is up at 8 am and any time in between. It depends on if Zelda woke him up, a brother woke him up, a stomach pain woke him up, or whatever. Like this morning he was up around 730 and woke up with a horrendous stomach pain.
So when Jacob wakes up, I am usually in the midst of getting Tyler ready and off to school. So we take Tyler to school and then come back home and he has a little bit of tv watching time. This is time for me to get his breakfast and his meds ready for the day.
Before he eats breakfast he has to take some meds. There are a few meds he has to take 30 min before he eats. So these are his before breakfast meds that he has.
This is how he takes his meds...mostly. Because he likes to throw up his meds every time he gets them by mouth...this is the best way for him.
After he gets his meds I let him get on the computer and play for a little bit while I get breakfast ready and his other morning meds. He is usually there for about 30-45 min (dont mind zeldas crazy scary eyes)
We love smoothies and I make them every morning for him. I put MORE meds in here for him too. I love hiding stuff in things that he will eat or drink and never know its full of medicine for him. We put his laxatives in here most of the time.
After his smoothie is made and his breakfast has been eaten, we go for his 2nd set of morning meds. These ones are for his mitochondrial disease called his "mito cocktail" these are compounded meds. So they have at least 2-3 different meds mixed together. He also has Co q 10 gummies, and pedialyte to flush his tube.
After breakfast its time to hook him up to his fluids. I go and get my supplies which are a bottle of pedialyte and his bags to put it into.
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| This is another look at his machine and supplies |
After that, its time to hook him up! I get the tube that we kept in from giving him his meds and we put the end of the bag into the tube and push run on his machine, and he is done!
Next, its time to hook him up to his pulse ox machine. We have to go keep this continuously throughout the day to check his heart rate and his oxygen sats.
Now its time to start on school. We see what we have to do for the day and start on the easiest one...haha
We did school for about 30 min and then he started to not feel good and get really tired. So we had to take a break.
We took a break for about 30 min and then went back and did school for about 10 more min before he was not feeling good at all and was having a hard time talking and kept trying to fall asleep. So we did another break....and that was all we could do.
It is lunch time now. He ate lunch and then we had therapy!
We went to therapy but he was really struggling staying awake and up and focused. He kept saying he felt like he was gonna throw up, and his throat hurt, and his legs hurt. So therapy was pretty tough.
No suprise here...we got home and he went right to sleep! This is about 12:30 and he will sleep until I wake him up around 2. I have to go pick up Tyler from school so I had to wake him up to come with me.
After we get Tyler we come home and try to do a little more school while Tyler does his homework. They do their stuff together and I clean up a little bit and try to get dinner started.
At 4 we go and pick up Tom and I run to the grocery store to get what I need for dinner.
Around 530, its time to get ready for bed. So he takes a bath and gets ready. He watches tv for about 30 min or so.
And then at 630 he gets his 2nd dose of meds. He gets all the above meds again. And at this time we also fill up his bag again to get ready for bed. He has to be hooked up at bedtime so once again, we fill it up with pedalyte and hook him up to the machine and around 7 he goes to bed and we start it all over again!
Now this is a typical "non busy" day. Just think on a weekly basis...we have doctor appts to add to that, we have more therapy appts, we have appts with state people for his services or we have a day where we go out and have fun!
I hope you enjoyed our "day in the life of Jacob!!"
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