I poked my boy!!!

Yes today I had the pleasure of poking Kaden to do his blood sugar.....absolutely no problem....he didn't even cry!!! Anyone for a blood sugar test???!!! haha He has been happy and playful most of the week. Kentones done by testing urine are still only 4 but ketones testing by blood are showing 4.2 which is good. Phenobarbital blood level is 35ish but could be due to not getting his morning dose yesterday. (accident)

Elle, she is good. Sure is taking a long time for her to recover from that darn GI virus....

We have been trying to do our Christmas shopping....... painful is what I would call it.....It is a VERY slow process as we don't have very much time for anything extra let alone shopping!!!! Can you say......GIFT CARDS!!!! Such is life I guess we will get through it like everything else!!

Better run and get Elle her meds and have a big cuddle before bed.....

Good day for all.....

Elle is getting stronger and stronger as the days go on. She is still sleeping alot of hours but is smiling and laughing more like her usual self!!

Kaden had a great day!!!!! He was so interactive and happy. Making great eye contact. Reaching for toys. Smiling and rolling around. OH!! and making awesome 'baby talk'. I love when he is like that. Makes us very happy. His sugars are still a bit low. Not sure why the numbers he was getting (same as he is now) are now not acceptable??? His oxygen requirements.....still working on that. We had him off while awake this afternoon and he did well. I find they are not as aggressive as Paul and I would be at getting him off. Ketones are good. We are going to have to learn to take his blood sugar. Nothing like poking your baby so he bleeds....I'm not worried about doing that I have seen it done a million times....

Paul is with him tonight and I have stayed home with Elle. She has had her bath and her bangs cut and is now going to have some meds!!!

Talking today!!!

Elle is slowly getting back to normal. She had a good day today. Her and her nurse stayed home today from school and played, read books and sang. (she LOVES music)

Kaden was great also today. He was 'talking' and smiling and interactive. I hate the days that he is distant and not smiling. Phenobarbital blood level is good. The other day he had to have a 'load' to boost the level up but now he seems to be fine. They also increased his daily dose (evening one only). Today they changed his Ketogenic Diet. They increased the concentration in the formula and increased the MCT oil. His blood sugars have not been great the last couple of days so we are trying to get those more regular so he doesn't have to be 'rescued' (apple juice). Ketones were low today but tonight when I checked them they were 8 (that is good). He also had a really nice student nurse. She is actually the daughter of a nurse that took care of Elle in PSCU when she was in there for nine months!! I thought that was kinda neat!!!

Anyways, I was there tonight and Paul was at home with Elle. Another night apart.......

The weekend......

Elle had a okay weekend. She is still recovering from the virus. She is somewhat alert but still requires alot of sleep. She will not be going to school tomorrow and maybe not for the week. We will wait and see how she progresses.

Kaden, well he had an okay weekend too. Saturday he hung out with mommy. Saturday night he was with daddy. Sunday with daddy and Sunday night with mommy.....Mommy and Daddy didn't get to spend much time together as usual......

As for his chest infection it is coming along. He is still on oxygen but not as much as he was last week. Coughing is still strong so that is good!! We just cannot wait to get him home and we can all be together again. He has been in there for four months and its hard doing this day in day out. Its hard doing the day to day stuff let alone Christmas shopping.......

That's it that's all.....going to have a snack and then off to bed.....

P.S. the above picture is of Elle in her walker (not sure when it was taken though)

String Bean is home!!!!!!!!

Elle is home. I brought her home today at around 4pm. She is still sleepy and kinda weak. Not to be graphic but she is still having explosive poop.....was not a pretty scene tonight.....lets just say it was straight to the bath for her......anyways we hope she is on the road to recovery.

Kaden is still coughing but the good news is he is down to 1/2 litre of oxygen rather than 1 1/2 litres yesterday!! He was started on Ventolin three times a day and some chest physio to help him get all that stuff out of his lungs. He is now down to 2 times a day with the chest physio so that is another good sign!! Our pediatrician was in Kaden and Elle's room last night when we got there and we had a good talk with her for almost an hour and a half!! She is an excellent doctor and we are so thankful we have her. Anyways we are looking forward to getting him well so we can discuss with her, Neurology and Homecare about taking him home.....CAN'T WAIT!!!!!! Can't wait to get him home so we can work on getting his little body stronger so he can do more things. I am also slowly working on trying to find nurses from the hospital that would be interested in caring for Kaden. I already have one name and am working on another just not sure of how to approach her. I talk to her all the time I am just not great with just coming out and asking.....Paul is better at that kinda stuff. Anyways we will see what happens!!

Paul just got back from seeing Kaden and he slept the whole time he was there......nothing else new with him other than his nurse tonight doesn't seem to know how to wash her hands.....WHAT IS WRONG WITH PEOPLE??????? Hello we would like to get him home not infect him with something else......AHHHHHH!!!!!

Chest Infections......

Well, as usual we accomplish one goal....blood sugars....now......chest infection.....AHHHHHH!! He is now on IV antibiotics due to him getting a chest infection. This is probably due to a puke episode and then an aspiration of the puke!!!! How fun!!! Other than that his sugars have been great. Ketones are not that great. Every time he gets antibiotics his urine ketones go down. They did a blood ketone level last night and it was 4.6 so that is good. He was happy and cute as always today.

Elle, she is slowly getting better. She was on full strength formula but she didn't tolerate that so she is back to half formula half pedialyte. Guess her little tummy just isn't ready yet. We thought she was getting a chest infection but today she sounds great. She was happy with lots of smiles and laughing. Have not heard when she will be able to come home. We are enjoying having them both together even if its at the hospital.

Visitors Yesterday: Nana in the afternoon
Grandpa Remillard in the afternoon

Visitors Today: Nana and Auntie Lori
Grandpa and Grandma R

Tonight we left both of our precious little kids tucked away and sleeping for the night......

Happy kids!!!

Elle is doing good today. She was awake, laughing and smiling. Nice to see as she has been sleeping for over 4 days. She is just getting pedialyte right now but tomorrow they will start her on half feed, half pedialyte and see how her tummy handles that.

Kaden was charming as ever today. Looking around and smiling away. Phenobarb blood level yesterday was 39 so that's good. Blood sugar was 3.8 and that is also good. They have changed his diet again today in order to get his blood sugar at a more regular number. Ketones, well if he would stop pooping then we could get some.....darn diet.....they will do another blood level to check ketones on Wednesday.

Paul, well he is doing much better and thinks he will be able to come to the hospital tomorrow. He is missing the kids so much.

Visitors today: Nana this afternoon Auntie Michele and Papa came with me tonight!!

Elle and Kaden were both super happy tonight. Elle was sleeping when we left and Kaden....well, he was still awake. Hope he fell asleep once we left. They are just sooooo cute I can hardly stand it!!!!

The picture of Elle is the day before she got sick......