Doing better!

Elle has now had three doses of antibiotics and is doing great!! She is still coughing but is otherwise happy, playing and had a good day. No fever which is nice. She will be done her antibiotics tomorrow and hope that she can return to school on Monday.

Kaden is his usual happy self. He enjoyed a trip to Costco and behaved like my perfect little guy this morning. He will have Physio/OT come tomorrow for his first appointment. Whether he will be awake or not should be interesting. He sleeps whenever he darn well feels like it!!! Oh well, tomorrow won't be much other than assessing and talking about him I am sure. He is getting better head control and is starting to spend more time in the exersaucer. Paul had him rolling last night and then after that little 'session' all he wanted to do was roll.....too cute!!

I think we are going to have a nurse on Saturday during the day so then Paul can use that time to get some of his work done so he can then hangout with us in the evening without feeling like he should be working. I will use that time to play with Kaden and maybe go through a closet or two....fun times!!!

Sick.....

Just a quick note.....Elle has been taken to Children's Emerg. (Paul and his dad) as she is now sick with some kinda chest thing....AGAIN!!!!!!! I don't know how much a little girl like her can take....too many sicknesses. She has been sick/hospitalized in Sept,Oct,Nov,Dec,Jan and now we are almost into Feb.......Now she won't be going to school tomorrow and she loves being there so much with all her little friends. No word from Paul yet on her status so I will just wait to hear and hope she will be coming home tonight.

Kaden had a nice day. He had his blood work (Phenobarb blood level) but I forgot when I got home to call Neurology to get the results so I will do that in the morning. Kaden has his new nurse starting tomorrow. I will not lie I am not going to be able to give him up. I will have to find something to keep me busy cause I love playing with him and caring for him.....he was suppose to be all mine.....I never wanted to share....:( Eventually it will be a good break for me to get things done around here so that on the days he is all mine we can spend good time together......

Well I am off to clean up a little before I get too tired and don't want to do anything.....

Monday.....nothing new.....

Elle enjoyed some playtime at her 'desk' on the weekend. She played in the sun with her toys while busy smiling away!! She felt a bit warm on Saturday and was vibrating due to needing some oral stimulation but eventually calmed down.

Kaden also had a nice weekend. He spent some time in his exersaucer which we are going to try and put him in there more as its good for him to strengthen his head and try and get him to push with his legs.....when we hold him up he won't push but while he is on the floor he can spin himself totally around....go figure.....

It was my birthday this weekend so we were at my parents for dinner on Saturday. I am not a fan of birthdays (mine anyways) so it was low key.....

We had our home assessment and our garage is too small to put a lift in and so our new plan is for us to have a lift put in the back that goes onto our deck and she will then come in through the kitchen. That being said we are going to have to take the deck out redesign that, landscape and we will also have to replace the patio doors with garden doors....doors that we can lock from the outside........there is going to be a huge amount of shoveling involved....deck, all the way around the house to the garage and down the driveway......this plan does not thrill me at all.....we aren't liking the fact that in the rain,snow, and any other weather craziness we are going to have to take Elle all the way around the house just to get her into the van.......not fun......for now it will have to do.

Well, we are starting the week with just one appointment so it should be a great week....positive thought!!!!!! As I type this I am looking at the above picture.....what an adorable little face!!! (both of them) it makes my heart smile.......

More appointments......

Today Kaden had his Neurology appointment. Follow up to being in the hospital. Went well. Neurologist was just making sure that he is doing okay, blood level is remaining steady and no seizures. He will go for another level next week and then we may be able to go for levels every few weeks instead of every week. We got our call today about Kadens Physiotherapy so that will be starting next week. They come to the house so that is nice then I don't have to take him out and its something I can do on my own.

Elle went to school today. She has not been there very much since her GI Virus (end of November) so all the kids get very excited when she does go. She also had a follow up with her Pediatrician regarding her ear drum....its all cleared up and the other ear was full of wax so we need to keep working on that to clear that out....her requisition were also sent for her ultrasound and another test (can't remember what it is thought) We are also doing a urine test Friday morning just to double check things in regards to her E. Coli bacteria in her blood.

Tomorrow is the home assessment so we will see how that goes!!!

Long day of appointments.....

Like all 1 year olds he was sleeping when his party was about to take off but eventually woke to a party just for him.....he got lots of gifts and we all enjoyed cupcakes that I know he would have enjoyed if it was in his diet and he was able to eat......

Well we made it through a day of appointments. Elle had Feed Clinic, Assisted Technology and Orthopedics. Kaden had just Feed Clinic. All of which were at the Rehab Centre for Children. We left at 9:30am and didn't get back home till 4pm.....the results....Kaden is getting too fat and Elle is too skinny!!!! They suggested that we take some fat from Kaden and give it to Elle....haha

Elle also had some anti-tip wheels put on her wheelchair, a new/bigger chair to go with her table for home and we also have a request put in for an Ez Rider (a different kinda stroller type thing) It will be easier for me to take her somewhere in that instead of her wheelchair. Her wheelchair has her oxygen tank attached to it therefore we are unable to fold it up. It is also VERY heavy and to be lifting that thing in and out of the van is too much work.....Over all things were good at the appointments and they both just have to go back for a weight check to make sure one is gaining and the other not gaining!!!! Kaden has another follow up appointment tomorrow morning with Neurology. Elle has a follow up tomorrow with her Pediatrician regarding the E. Coli in her blood......Then......Thursday we have our Home Assessment to see if our house is able to be adapted to some of Elle's needs.....that should be interesting.....we are wanting a lift in the garage for her so that we can get her into her wheelchair from inside on a cold winter day rather than putting her into a freezing cold chair in the garage....Friday is free!!!!!!!!!!!!!!!!!!!!!!!!! So far anyways.....

Happy Birthday to our amazing little boy!!!!!!!!!!

January 17, 2008 at 12:40am our handsome little guy was born......Today he turns 1 !!!!!!! WOW!!!! He is going to have a little party tomorrow. Today we all went to ToysRus and got a few new toys....for Kaden, Elle and Daddy!!! Yes daddy had to buy a toy too!!!! He is totally into helicopters......a kid at heart!!! Kaden was awake alot of the day today so I hope that he won't be sleeping all day tomorrow....Elle is doing really great and finally has some color in her cheeks and alot of energy. She officially had e. coli bacteria in her blood but the good thing was that the spinal fluid showed nothing (then she would have had meningitis) so we did not have to take her into hospital for antibiotics....ahhhh thank you!!!!!! She is almost done her home antibiotics and hopefully her perforated ear drum is also on the mend.....poor girl has just been sick so many times that we are hoping that this will be the end of it for a LONG time.....mommy and daddy can't stand much more and I don't think she can either. Kaden got his RSV needle this week. He will be getting those every month for the next few months. Next week is VERY busy with appointment. I think every day we have one if not 2 appointments a day......having all these appointments reminds me of how much I hated them with Elle......I just want to stay home with my little guy and play and not have to worry about all this stuff......not fair...thankfully he is a joy to be around.

Well, tonight we are getting ready for Kadens party. He is having cupcakes and we picked them up tonight.....they are soooooo cute!!!!! and yummy!!!!!!! Too bad he can't enjoy them. That sure is one thing that breaks our heart. We never thought he was going to have to go down this road of 'tube feeds'......some day......I hope.....our boy will eat again.....

E. Coli.......WHAT???????

Have not written in awhile.....Elle was diagnosed with E. Coli bacteria in her blood....NOT GOOD...She has been running a fever since Monday of last week. The fever seems to have gone away in the last couple of days but she is still white as a ghost. She was started on antibiotics last Thursday and had some blood work done along with a blood culture. The culture turned out to have E. Coli!!!!! Yesterday evening her pediatrician called me and told us that it was her duty to send us to emergency and have her admitted so that she could have IV antibiotics. She also needed to have a full septic work up.....which means.....another blood culture, IV, chest xray, urine and the dreaded....lumbar puncture (needle in the spine). These tests are all important due to the fact E. Coli could turn into meningitis or a bad chest infection which could be life threatening....because she was looking so good and little was found other than she may have a urinary tract infection they allowed us to come home with the IV and we will go back to emerg. tonight for more IV antibiotics!! We got home last night around midnight, put her to bed and then she became uncomfortable and took her awhile to settle down. She was up bright and early today smiling and happy!! She amazes me how tough she is!! Crying while having procedures done then a minute later smiling and laughing.....that's our girl!!!!!!

Kaden, well he has been sleepy. I took him for his blood level yesterday and today I got results that the level is 51.....no wonder he is sleepy!! We are now changing his dose and see if we can get it down a little......otherwise he is also happy. He is starting to roll more like he use to and get on his tummy so that is nice to see. Its his birthday this weekend.....if this craziness slows down we are hoping to have a little party for him this weekend but I will think about that tomorrow as I have used all my brain cells for the day already......Hope we all have a better sleep tonight.....

Elle sick.....

Elle has had a fever for a couple days on and off. I talked to her doctor and we will probably go to see her tomorrow just to make sure her ears ect. are okay. She is crying like she is uncomfortable so we just want to make sure its nothing bad.

Kaden is well. He was at the mall today doing some returns!! Full of smiles and laughs. He was practicing his sitting this afternoon. Very cute!

Well, this is going to be short tonight as I have now expired. Paul went to bed early so I fed Kaden, medicated Kaden, Kaden had a big choking fit so I got that resolved and then fed Elle, medicated her, took her temperature and now......to sleep for me!!!

Can it be any colder?????

Well, Elle was off to school this morning. We decided that because I was going out anyways that I would drive her and her nurse and then they would take the school bus home. This way she gets to sleep in. She works better if she is well rested. We are probably going to do this all week. Way too cold to be getting up and on the bus at 7:40am.....

Kaden is good. If you saw him you would never know anything is wrong....maybe there isn't?! So far everything has come back showing nothing so that is good. I am hoping that in the next 24-48 hours we will be able to take him home again.....so yesterday when he was in emergency they did blood work, LP (lumbar puncture), urine sample. Of course with the LP he cried and took awhile for him to settle down. OH! and a chest xray.....he has had no fever since we got there so that is a good sign too. Right now he is busy working on getting his front two teeth!! He has the bottom two that took the poor guy 4 months to reveal. Drooling like crazy....he is going to look so different with two front teeth!!!

NOTE: Elle now has a fever......she has been given Tylenol and Advil and so far it seems to be going down....seriously.....will Kaden and Elle ever be able to enjoy some good health.......

More hospital time....

Just a quick note... we took Kaden in to emergency this morning at around 6:30am. He has been admitted and is back in PSCU. Tonight he was playful and cute as usual. He had a fever of 39.5 so when it gets that high they worry about meningitis so they did a few tests. Everything has come back okay just some elevated white blood cells. Could be a virus. He is on antibiotics and we will see as the cultures come back what they tell us!

Going to go to bed now as we have been up since 5am and I have been at the hospital since 9am .....I will write more details tomorrow!!

Holidays are almost over.....:(

Well Paul is getting ready to go back to work on Monday and Elle will be going back to school......leaving Kaden and I at home......Kaden and I will be plenty busy.....feeding, meds, and playtime.....Kaden's home therapy will be starting in the next couple of weeks. He will be having the same therapist that Elle had!!! Therapy meaning Occupational Therapy, Physiotherapy and Speech....we have connections so we were able to avoid the LONG wait list and go right to the top!!!! Ahhhh, its good to have connections. Kaden will be having some appointments this week. Probably a visit to the Pediatrician and more blood levels. It is almost Kaden's birthday!!! We can hardly believe he will be 1. This year has gone so fast.

This week has gone fast. We were out doing stuff at the beginning of the week and then on Thursday a friend of ours was over for dinner and then Friday we had a nurse but Kaden had a temperature in the morning so we decided to stay home and we just ordered pizza and rented a movie. Today Paul was excited about all the snow so he was out snow blowing with the rest of the neighborhood. Then he grabbed a couple of groceries and we played with the kids, had supper and now they are both sleeping!!! Tomorrow we have a few things to do so I am sure before I know it holidays will be done....