Off to the Pediatrician!!!

Elle woke up today with a drippy nose, fever and very tired. She is needing alittle oxygen while napping this evening. May just be due to the stuffed nose. Paul and I took her to the doctor this afternoon and her chest has some very faint crackles in the left lung. The left lung is her bad lung of which always gets affected first. So, we are starting her on antibiotics in hopes that we are not going to have to make a trip to emerg. Yes, once again a nice weekend and we are indoors with a sick child......

Kaden is being sooooo cute today. Blowing his little bubbles and looking around.....He's probably happy that his sister is sleeping and then he gets more attention.....

Well, we shall see how the weekend plays out. Paul is off to Toronto Monday and will be back sometime Tuesday.

Lots of saliva.....

Elle woke up at 11 this morning and all day has seemed to be struggling with her saliva....kinda coughing/choking and more tired than normal. We are watching her carefully to make sure she is not getting another cold....why does this kinda stuff always happen on a weekend?? Especially on a nice one....hoping that this is just a weird day and she will be better tomorrow. Guess we are staying home tomorrow.

Kaden has been good. He only started smacking his lips late this evening. Not sure what that means. We have decreased his Phenobarb AGAIN. So bizarre how he came home on 35mg x3 and he is now down to 22.5 x2 & 25 x1.....and he is still high!!! We also now have a confirmed schedule for his nursing till the end of August! That makes it so much nicer to plan things.

No big plans for the weekend especially if Elle is sick. I may go get my flowers depending on her.

Sunny day.....

Not alot new. Kaden had some more blood work today. His Phenobarb level is 46 and his blood ketones are 7.8 (4 being good). He was kinda sleepy today and smacking his little lips. Around 4pm he seemed to kinda come around and now he is sleeping again.

Elle, she was at school today. She had two gym classes. One was Grade 1 and the other was her 'Special' gym along with a whole bunch of other things. They took the bus home for the first time in months. OH!! She was also outside on the play structure they have at school for kids in wheelchairs!!! Of course she was loving that!!! Elle will be missing school Thursday and Friday cause her nurse is not available.

They are both sleeping and Paul is out for dinner for work so I guess I will clean up alittle before playtime with my kiddies!!!!

Worn out....

Going on 7 days without help....I am starting to feel tired. This house is just non-stop stuff all day long. If its not a med its a feed or a diaper change and on and on......I have the first feed starting at 6am and I literally don't stop moving till after 11pm every night....We are suppose to have a nurse for Kaden and HCA for Elle every second Saturday night but turns out Elle is the only one that will be having someone this Saturday. Its the girls second time being here so we will be going nowhere. It takes me a LONG time to feel comfortable about leaving her with someone new. Especially about feeling confident that this new person would be able to resuscitate her should she have a seizure.....Much to Pauls dismay we will be cleaning up the basement as our hardwoods will be coming in the next few weeks (for the main floor) and if I have to spend a bunch of time down there I'd like to be able to find my way to the couch!!!!!

The worst part about being 'trapped' (Paul hates when I say that)at home is that even if I wanted to get out I can't on my own. Elle has to be in her wheelchair/stroller when we go somewhere and Kaden is a baby so how is a person suppose to get out??????? OH!! That's right I don't....I am hoping that this is not a taste of what its going to be like in the summer. From what we are told our 'help' is cut off for the summer. I think the exact words were..."normal children don't have help in the summer so why should we?!" I hate how they try to lump us into the same category of 'normal' so they can save a few bucks....as they all go home to their 'normal' lives and quite frankly have NO CLUE. Our world does not allow us to meet people in a regular way. We don't go on play dates ( not that we can't I just don't think I truly fit into 'normal' and am worthy to attend) I think when you have children (correct me if I am wrong) you meet friends through your children and if a child is wanting a play date with a friend from school it surely isn't going to be with the little girl that can't walk or talk......sad but true....A really good book to read to totally see what its like to be in our shoes is "A DIFFERENT KIND OF PERFECT". I read it over and over. I love this book cause it makes you feel like your not alone.

We had a couple of people here today measuring for a wheelchair lift for the backyard. We have to take out our existing deck, build a new deck level with the patio doors, put in new doors (ones that lock from the outside). I truly hate anything to do with medical looking stuff....HATE IT!! I also hate the wheelchair and refuse to use it. We have a stroller type thing and that's what I use. The only time you'll see me pushing that thing is at school....

New Tricks!!!!

Kaden is practicing a new skill!!!! He seems in the last couple days to be stronger in his core area and yesterday and today has done very well sitting!!! Yahoooooo!!!!! He looks so cute and so grown up sitting....Don't get me wrong he is by no means sitting for long stretches but 30 seconds to us is wonderful and a sign he is getting stronger. He has had some good days being quite interactive and smiling and 'talking'.

Elle is good too...she made it to school 4 days last week. I had thought that this week was going to be the same but her nurse has been ill so she may get there only one or two days this week.....:( Anyways she came out with me yesterday shopping and today we had to go get some stuff for Paul so she came along. She totally loves riding in the van. She looks out the window smiling all the way. So cute how she has her hands in her lap looking out the window. She loves going out...

Anyways, we didn't do much for the long weekend just hung out. This weekend we may have someone to watch both kids so we can go out!!!!! (nurse for Kaden and HCA for Elle) Still waiting for confirmation on that....

Well, we have not dropped off the face of the earth. Elle's cold didn't amount to much but did miss some school again....she is much better now and hope that she can get back to school and not catch anything else. She managed to go for three days this week so that is good. She did not go Thursday or today due to some issues we have been having in regards to a doctors order to not have her monitored at school while sleeping. We only found this out on Wednesday but apparently everyone else knew about it but us......needless to say we are NOT IMPRESSED. We are upset being the last to know of such a decision without us being consulted. We are the parents and people seem to be forgetting that. We are caring for her and all we want is for her to be safe. Anyways after a short conversation with a couple people she will be returning to school with her monitor for the time being while we sort this mess out. I tell ya its just one fight after another and it sure is frustrating. Sure is sad how we have to fight for every little thing.

Kaden, he is doing well. We have taken him a couple time to get blood levels and we have changed his Phenobarb dose a couple of times. It has come down alittle so that's good. We will wait till Monday to see if the Neurologist wants another decrease. Other than that he is happy, rolling, hanging in his jolly jumper and we are working to get him sitting on his own.....

We have our first 'night out' Saturday night!!!!!!!!!!!!!!! We have not gone out in over nine months.....What do people do on a 'night out'.....