Visitors...

We are outta here.....Kaden's first trip out of the city......Look how Elle is looking out the window. She did that the whole way there.....too cute....

Well, we are back into our daily routine. Last week we had my cousin Angie and her two children from Alberta visiting!! Along with them my aunt (Angie's mom) was also here. We were busy with stuff all week. We all went to the Children's Museum at the Forks (Auntie Lori came too) we were at Polo Park Mall, St. Vital Mall, a couple dinners are moms, a morning of appointments for the kiddies (Respirology) a dinner here at our house........Oh! Angie fell down the stairs and hurt her toe......it also rained ALOT so our plans to go to the Zoo were out.....all in all it was a nice week of visiting, laughing and having fun with the kids.

Kaden has had another decrease in Phenobarb and we took him for a level today so hope to get the results tomorrow. He has been otherwise good. Smiling and so darn cute you just have to see it to appreciate it!!! What a sweet little guy....He had his Respirology appointment and did well. His oxygen level tested good while awake and we still need to be giving him o2 while sleeping. Lungs sounded good.

Elle, she is good also!! We have just found out the the Respiratory Dr. has said 'No oxygen monitor to be sent to school'.....that is a problem for us and now have to think about our next step......School or no school......take it to a higher level???? Health Minister??? Hmmmm???? If she sleeps with the monitor at home what is the big deal taking it to school??? Frustrating......

We took a little outing on Sunday......yes, outside the city!! We took a wishing well that my grandpa made out to Beausejour to my moms cousins campsite.....drove there.....visit for an hour.....drove home.....nothing huge but huge cause it was Kaden's first trip outside the city limits.......

Paul is on holidays this week and we have a nurse and HCA tomorrow so we are off to do some shopping on our own!!!! Maybe lunch???? Then hope that the weather stays nice and we can take the kiddies to see Auntie Lori at the English Gardens on Thursday.

Take care everyone!!! Enjoy your week!!!

The past week.....

We have not been up to much. Still waiting to have our flooring completed which should be this Thursday!!!! Kaden is still working on his last med change before having another level done. Elle is doing well. Our respite is still very none existent. This week Kaden had his nurse on Monday and Elle was to have her Health care Aide on Wednesday but she was sick and then Saturday was her regular evening shift but when the HCA came she was 'starting' to feel better so Paul and I decided that she shouldn't stay. Kaden's Saturday night shift......UNFILLED!!! We had made a call to the respite office this week and they were going to look into Kaden's shift.......still no call back....Honestly people have no clue. They (being doctors, specialist, respite office ect.....) always say how important it is that parents get out on their own yet it never seems to be a priority for them to try and fill it.



This weekend my sister moved so mom, dad and Paul were busy helping her and Jackie with the move. They are slowly getting settled. Tonight we were at mom and dads for dinner and now at 11:25 & I am almost done with Kaden's feed and then off to bed!!



Elle has an orthopedics appointment this week to get some ankle supports to help her stand better!! We have been waiting for these for awhile so we hope they will work for her. Kaden has his Port-a-cath flush ( his IV that is surgically placed under the skin just below his colar bone) This IV has to be flushed with heparin once a month if its not being used to keep the line open.



Well that's all for now!!!

There is just one of the many, many, many smiles that our beautiful little girl gives us everyday.....she is so amazing.....

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.

We are still here!!

Kaden's cold has finally gone away. He is off oxygen while awake and back to his happy little self. We have not been for a blood level for awhile and frankly I am avoiding that hospital as much as possible. Not interested in getting the flu. I even went so far as to cancel and reschedule Elle and Kaden's Respiratory appointments that we had this week.

Elle actually made it to school 5 days this week!!!!!!!!!! The above picture is of Elle after her hair cut....3 inches!!!

I am not even sure where this week has gone. Picking up formula at Deer Lodge, picking up meds, cleaning, feeding, administering meds...blah blah blah.....and here we are Friday!! Oh! We had visitors this week!! Sarah and her new baby (3 weeks old). She is a friend and she cuts/colors literally my whole family. Charlie was absolutely adorable and so tiny! Today we had a friend that I use to work with and her two cute little girls and Kristen and her two cuties also!! For those of you who don't know Kristen I came across her blog about her beautiful little girl Georgia. I never got a chance to meet Georgia but look forward to hearing more stories about her and getting to know Kristen more!!! If anyone would like to read their story you can go to my profile and click on Georgia's blog....amazingly written and AMAZING parents. I am envious about how honest she can be about her feelings.

A side from all that our stroller is in!!! FREEDOM!!!!! It will hold both kids and I will be able to go for walks and maybe even the mall on my own if I needed.

Tomorrow is our night out! Our only night out for the summer!! How pathetic is that. The nursing we have is only able to offer this Saturday and during the week. So, I guess we will be sitting around the fire in the backyard all summer.....who knows maybe things will work out and we will get more nights out.....haha.....

SLEEPY!!!!!!!!!!!!!!!!!!

Well, after over a week of Elle and Kaden being sick Elle is recovered and Kaden is still struggling to feel better. He has kept us busy during the night. He has graciously allowed us to sleep for 3-4 hours a night (not in a row). He is waking himself up coughing and choking. Then he can't go back to sleep and finally works himself into a fever......THEN, he gets Tylenol and a diaper change and then.................well then we could quite possibly wait for hours till he decides to go to sleep. His sat monitor rings off in the night 20+ times due to oxygen going down or elevated heart rate.....Today he had his nurse here and he was so tired that he literally slept all day. That makes me nervous we are going to be up all night again. We are increasing his one puffer and see if that stops the coughing in the night. If he is not better by Thursday I have to take him in to have his chest reassessed. He may need some Prednisone to get him over this. Other than that his blood work from last week was good.

That's it for now I am going to go get Kadens feed started in hopes that we can all sleep tonight. Paul is sleeping downstairs tonight so 50% of us are going to have a nice sleep at least!!!!