What day is it?????

We are all doing good. Elle woke up today with a bit of a temperature but is still in good spirits and no longer 'warm'. We had Aynsley here today (Elle's nurse) so Paul went out and did a few things.....wash the van, buy some food, pick up meds for the kiddies ect....Kaden, Auntie Lori and I went to brave the mall.....Kaden had a blood level yesterday and it was 47....high but they don't want to do anything right now with it. He was extremely tired starting Boxing Day and now he seems to be much better and is having more restful sleeps at night. He is drooling like a mad man though. He is getting a bunch of teeth I think. Be glad when those come in so he isn't always in a wet shirt....Tomorrow Kaden has another blood level so hopefully we find out what that number is before we go another 5 day stretch...

Not much planned for New Years.....Paul bought wine and Baileys....can't drink too much of that though as we need our wits about us......in case of an emergency!!!!!

The clean up begins......

Christmas this year was good. Elle and I were actually without colds. The last two we were sick so it has been nice to make it through the season without sickness. Elle has been soooo happy full of smiles and giggles. She has been doing so well with sitting up on her own. Kaden is grumpy!! We are hoping that its just teething. He is having trouble sleeping at night. He isn't crying or fussy in the night just awake. When I look over at him he is full of smiles and giggles just like Elle! Then during the day time he is sleepy and fussy. Tonight he settles when I picked him up and sang very silly made up songs......songs of how he has peas, carrots and beans downstairs in the freezer that are going bad cause he doesn't eat by his mouth right now.....hmmm strange what make babies smile!!! Anyways Paul snuggles him, read him a story and then he fell asleep. He is now sleeping and eating at the same time!!! He is so talented!! haha

Elle and Kaden receives soooo many gifts that like my neighbor next door said 'we are going to have to build an underground storage facility'......Paul and I got our fair share of gifts. Paul and I got ourselves a new Nikon D90 camera for Christmas.....we love that camera and have taken soooo many pictures it crazy!!! We spent Christmas Eve at Paul's sister and Christmas day at my parents. My Grandma and Uncle were there so that was great to spend a Christmas with them. I don't think I can remember the last time I spent a Christmas with my Uncle.....probably not since I was a kid.....it was nice!!!

Paul is off till Jan 5 so we are going to hang out with the kiddies. We are probably going to be staying home New Years as there isn't anyone to really watch the kids and having them out late and bundling them up to take them home is not my idea of fun. I have a craving for a chocolate fondue and maybe just hanging out here!! Guess we will see what happens plans can always change!! Whats everyone else doing?

On Monday Kaden has another Phenobarbital blood level. It is driving Paul crazy not knowing what his level is. Kaden is also getting his new feed tube in!!! We are excited about that as then its not going to be this long annoying thing hanging out and he won't be grabbing at it. Elle has her nurse Aynsley coming Monday too so that is going to be helpful for us.

So far so good.....

We are all doing fairly well. Kaden is adjusting well and continues to be a very happy little boy. He is full of smiles, laughs and is totally on the move all the time. He is vocalizing and working on a bunch of teeth which makes for a very wet shirt by the end of the day.....oh!! just reminded myself.....buy bibs for his stocking!!!......Elle is doing good too. She smiles every time she sees her brother. We are still hoping that we can all have a Christmas without any colds.....STAY AWAY COLDS.....STAY AWAY!!!!! We have just spent sooooo much time at the hospital that we are trying to stay away from any 'infectious' people.....if you spent as much time there as we have you would understand.....I (and Auntie Lori) took Kaden in for his first Phenobarbital blood level this afternoon. I am still waiting for the results....also left a message with the Neurology nurse as I am not sure if I should be assuming that no phone call means level is good.....he goes back for his next level Wednesday afternoon.....


Still have Christmas stuff to buy and so I am hoping to enlist Auntie Lori to stay with Paul and the kids so I can run out tonight!!! Then maybe I don't have to go outside tomorrow and Kaden and I can tidy up around here cause its like a war zone in here.....



I also forgot I wanted to thank Thelma (my moms good friend) for the meals that she brought in for Paul and I.....she brought them all the way from Morden!!!! That was soooo thoughtful of you Thelma and we really appreciate that. Meals have always been an after thought for us in the last 4 months and knowing that there is something to come home to is sooooo nice!!! Also to Jolene (a good friend of mine)for also bringing over some food. Thanks Jolene!!! The crazy life that you have going on that was so nice of you to think of us......(we really need to get together) Lorraine and Glen....our amazing neighbors....thanks to you guys too. All the food you have brought over and the lawn that you have mowed......that was so nice.... Also, thanks to everyone that took the time to come and see us at the hospital. Visitors really help pass the time and Paul and I are very thankful for the visits!!

Kaden came home!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

Yesterday afternoon Kaden came home. He had a trial Midazolam dose (2 actually and this is the rescue drug we would use if he had a seizure) to see if he could hand it without causing him distress with his breathing. He did very well. So now we are allowed to give him 1 dose at beginning of seizure and if it does not stop in 10 minutes we are allowed to give another dose (3/4 of first dose) He did well over night except for the fact he was playing from 3am till 6:15am.....He is happy, smiling and laughing....he is just adorable!!!! Some would say abit of a charmer!!!! We are going to have to take Kaden for Phenobarb blood levels every three days to make sure he is maintaining the correct level. He will also have to follow up with the neurologist and his pediatrician. Due to his extensive hospital stays he is also going to have Physiotherapy, Occupational Therapy and Speech come to the house once a month.....Elle had this and there is usually and VERY long wait list to get them to come but we have friends in high places....hehehe....thank you friends at the hospital!!!!! Glad to be home but will miss all our friends at the hospital. Not that Paul or I are in any way wanting to go back but the love those people showed to both our children was amazing........ Anyways we are hoping to keep sickness away so that we can actually participate in Christmas this year!!

Elle is fine. Went to school yesterday (late) and came home by bus. She slept all night but was up early and now is sleeping with daddy upstairs while Kaden and I hang out......

Christmas concert!!!

Our cute little girl participated in her Christmas concert this afternoon!!!!... She looked soooo adorable. She was up on stage with her nurse Sharon and all the other kids singing....well she wasn't singing but she was bopping her little head to the music.....in the final part of the concert she was sitting in her wheelchair at the bottom of the stage smiling one HUGE smile as the kids sang....too cute!!!

Kaden is good today. I was there early cause I had to leave for the concert at noon. He was happy, smiling and having a little physiotherapy session when I got there. He is just to cute. Anyone who has never met and spent time with him is sure missing out. (Elle too) He got his IV out today. That makes it easier to handle him. I am always afraid I am going to pull it out. We are heading there tonight.

We have our big 'discharge' meeting tomorrow at 4:30......in the words of Paul......"it could be short or it could be long".....depending on how difficult they are going to be.....we want to have our children home and have the equipment that WE are comfortable with not what they think we should be comfortable with. I always find it funny how 'others' think they can just come in and tell us what we should be comfortable with.....its not a game its two precious lives.....they forget about the human side....all we want is to be supplied with the necessary stuff to ensure that we are all safe. Why is it that families with medically fragile children have to fight for everything.....ALL THE TIME!!!!!!! WHY???? Don't ya think we wanted 'normal' children just like everyone else??? Ones that walk, talk, eat by their mouth......that can say "I love you mommy or daddy".......Just doesn't seem right that we want to take them home and all we need is some oxygen and a Laerdal bag and its a big deal.......If you do the calculations it costs at least $1,200 dollars a day to keep one child in hospital.......(ICU is way more)......now multiply that by 356 days........way cheaper to give us those two pieces of equipment and send us on our way.....anyways tomorrow shall be one interesting day for us all.......we are hoping that Kaden comes home this week.

P.S. Anyone know of some good nurses that are looking for some extra hours????

Cute smiles from Elle to everyone!!!!!

Just a couple of pictures of Elle relaxing and playing with her bear!!!!

Same old stuff.....

Kaden was good today. His blood sugar was a bit low so they gave him apple juice which in turn seems to affect his ketones.....1.5.....low.....Not much else new!!! I think Phenobarb level will be done tomorrow. He was smiling and playing, rolling and pushing with his little legs....so cute!! He had his hair washed today....man that hair just might be growing into a mullet....yes you read that right....a mullet.....I would love to cut it but I think he is better off with a professional.....

Elle did not go to school today....I am kinda nervous to send her as I don't want her to get sick before Christmas. She has been sick for the last two Christmas' and I think it would be nice for her to be healthy this time!!!! STAY AWAY SICKNESS.......

Tomorrow morning I am off the the mall.....again....to try and buy a few more things.......the worst part is not knowing what to get and wondering that darn mall.....I am sure something will pop up and make this painful job end!!!!! I thought Santa was suppose to bring the gifts?????