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.....