High Levels

We had Kaden at the hospital this week for a blood level for his Phenobarb. Of course they call back saying that his level is now 51!!!!! This is very confusing for us as I have just finished decreasing him two times......So, we are now in the process of decreasing him another couple times and then take him back for another level in two weeks.....He is a bit more sleepy and 'dopey' at times. I would love to see what he could be like without that nasty drug. They say its one of the worst ones in regards to alertness and really decreases a persons ability to function. Therapeutic levels are more like 15-30 and over 40 can be toxic to your body. At 51 no wonder he is sleepy! Other than that he has had many smiles and some wonderful giggles.

Elle is sweet and adorable as usual.

We were at the neighbors for dinner tonight. Nice to get out and have a change of scenery.

Paul leaves for Atlanta tomorrow for work and will return on Wednesday afternoon....

Dusty, Dusty, Dusty.....

Besides our regular very busy days we have been under construction.....our hardwoods have slowly been installed over the last week.....its the stairs that have been taking so long. They are almost done and now we wait for carpet.....back ordered....this is not fun.....we are in the process now of cleaning up all the dust from this little adventure and getting some things back in their place.....

A side from all that the kids have been relatively good. Still next to no help and Kaden's evening shift is STILL not filled. This system is VERY frustrating leaving us to wonder who exactly is on our side???? WHO????? Who is it that advocates for us in getting our evening out away from this challenging life.....sometimes you just want to give up but then you see a couple of beautiful smiles from some very happy little faces and you go on.....

A week or so Kaden's feed tube fell out. His nurse replaced it and then three days later it fell out.....then I put a different one in to tie us over till we got another one of his.....got another and it fell out.......and so on and so on.......long story short they cost about $350 each so we used around $1,500 in feed tubes not including the temporary ones in between.....I have posted a picture of his feed tube above. the little skinny part is what is inserted into the hole in his tummy and the larger part is where we connect the tube to feed him....that part is maybe no larger than a dime or nickel in size. Should they fall out they tell us that you have about a 2 hour window to replace it with a new one or the hole could start growing in.....Now we are just waiting to get a new one of the type he normally has.

Elle is totally enjoying her school free summer. Lots of smiles and laughter from her. She has learned to clap (not a huge thing for most people but HUGE for us) I often find her clapping to herself.....in her bed in the dark, in the van, anywhere and its soooo cute.

Well tomorrow we are off to get another blood level for Kaden's Phenobarb and will also be busy cleaning things up here.....Paul is back to work and probably glad about that as he worked like a slave everyday of his holidays last week.

Helpless.....

Yes, you read it right.....we are officially helpless. Meaning we said 'goodbye' to our nursing as of last Tuesday for Elle. We have been given no choice in the matter and apparently have 'others' making the decisions on our behalf. The transition was to be gentle and easy us into our 'new way of life' but once again our wonderful health care system has dropped the ball and we went from help daily to absolutely no help.......we were told to pick dates that we would like our health care aide to come but unfortunately our request don't suit her availability. This remains a work in progress meaning nothing is happening.....I had chose days that matched up with Kaden's so that I could have one day a week that I could get out and get some things done. Another thing that doesn't seem to be working out is our every second Saturday night out. It is important for us to be able to go out just us and see a movie or whatever people do when they go out. As of right now we have nothing booked for Kaden's every second Saturday night for the rest of the summer. Elle's health care aide comes but we can't go out!! The lack of compassion in people is surprising to me yet over the last 7 years has taught me not to be so surprised.....Oh well I suppose everything will work out in the end its just going to take the summer to figure it out.

Kaden continues to have high levels of Phenobarb so we are once again decreasing (2x) and then a blood level will be done again next week. He was super sleepy today and really didn't wake up till 5ish. He kinda comes alive at 5!!!!

I took both of them for a walk today on my own in their new stroller. I will have to take a picture of them in it and post it so everyone can see. They look so cute in it!!!!

Paul is on holidays next week so that is going to be a big help. He is also taking a week in August which is huge cause he has never taken 2 weeks in the summer EVER!!!

Other than that we are not very exciting. Hoping to spend more time outside and enjoy the nice weather.