Tuesday, January 20, 2009

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.....






Saturday, January 17, 2009

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.....

Tuesday, January 13, 2009

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.....


Wednesday, January 7, 2009

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!!!

Monday, January 5, 2009

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.......

Sunday, January 4, 2009

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!!

Saturday, January 3, 2009

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....