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......

Sunday!

Well, Elle is still sleeping. She has officially been sleeping for 4 days straight! She is not going to want to sleep for a month after this....They are still not feeding her so that we can give her stomach a rest. She did however open her eyes today for about 5 minutes and give a couple of smiles!! She has a bit more color in her face today.

Kaden was smacking his little lips today and a bit in his own little world. He is still smiling alot and playing. Tonight he was soooooo cute. I would say to him "Kaden" or "you lips are peeling" and he would just laugh. He has a bit of a chest infection so he is on antibiotics but by looking at him you would never know. His blood sugar was 2.8 today and they have adjusted his diet (carbohydrate portion) in hopes that we can get his blood sugar more steady. On the weekend it was very low and he had to have some apple juice to get his sugar up.

Both of them were sleeping when we left. I hate leaving them when they are still awake.

Visitors we had this weekend:

Saturday: Both Grandpa and Papa

Sunday: Nana came for a couple hours. In the evening Nana,

Papa and a good friend Jolene (thanks Jolene it was so

nice you could take time out of your insane schedule to

see us!!)

Just found out that our nurse for tomorrow is not coming.....didn't need her tomorrow anyways. Hope that she is not sick with what we all had/have. Not sure what the rest of the week is going to look like......

Another day at Emergency.....

Just a quick note......Paul is sick with that GI virus and Elle is sick too.....My mom, dad and I spent the day at emergency with Elle as she is very sick. She has been sleeping for over three days, VERY lethargic, and a bit dehydrated. They are giving her IV fluids and she was admitted to CH4 tonight. She is in the same room as Kaden (monitored room). I will try to write more tomorrow but right now I am heading to bed.....VERY tired!!!!!