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!!!!!

Elle is sick.....

Well, we thought we were all good......and sure enough I just get to the hospital and Paul is calling telling me Elle needs to be picked up as she is sick. She is pale, tired and pooping like crazy!!!! In order to make sure she is not dehydrated we are giving her pedialyte along with 1/2 her feed. She has been sleeping all day. Just opens her eyes to poop and get changed....My hands are sooooo dry from washing them every five minutes.....I don't want to get this again!! Paul went to Elle's parent/teacher today. She is doing very well and they are very happy with the progress she is making. They have lots of goal they are working on with her and she is enjoying attempting them. They also are really enjoying Sharon her nurse. We also think she is amazing and are lucky to have someone like her caring for Elle.

Kaden had a decent day. Auntie Lori spent the day with him. She hasn't seen him in over a week and was really looking forward to see him. He had 2 needles today. One was for the flu and the other was for RSV (a really bad cold that babies can get) He had his oxygen therapy (on his butt) and music therapy......now there's an interesting combo!!!! He totally enjoys the music therapist. I only saw him for 5 minutes today so I am looking forward to tomorrow when I can see him. Paul is there tonight.

Cold outside....burrrrrrrr.......

Busy day today. I had to take the scale that we use to measure Kaden's formula to get it checked and it turned out it was off just a little bit. They fixed that and then off to the hospital to meet with the dietitian to go over how to measure his formula with the scale. Then we had a play, butt change, oxygen therapy on butt, another butt change, more playing, and then off to sleep, more playing and then a feed......I had to leave today at 3:30 to get back for Elle and he was still awake....I hate leaving him while he is awake...:( His Phenobarbital blood level today was 40. They did a ketone blood level which was 5 and that is very good. Shows that his body is in a ketotic state and that is where we want him. His urine ketones still only show between 4 & 8 but that isn't bad. His blood sugar however is low therefore we have to change his feeds to 5 times a day. He was on 4 times and that worked much better in that the afternoon was a bit more flexible for going out but I guess my kids don't want us to have a life.....I should be use to that by now!!! Guess I will just have to do some tube feeding while shopping!!!! OH!! He also enjoyed the music therapist this afternoon. She came and sang to him for awhile...it was so cute cause he was smiling at her looking at her out of the corner of his eyes.....flirting with her......He was awake tonight and had a few visitors.....Angel one of the nurses from PSCU. She took care of Elle in PSCU (and Kaden) when she was there for 9 months.....we think she is the greatest!!! She really is an angel. Jackie on of the nurses aids brought him a bag of goodies....she is a real sweet heart. She has given Elle blankets and stuff before. Its nice to have those kind of people in our lives.

Elle had a good sleep last night so she was wake and ready for school today. She did nap at school but nothing major. Was in her walker in gym class. Elle had a visit with her Auntie Lori tonight. Auntie Lori just got over a cold and was missing her Elle.

Tuesdays excitement......

Kaden was more alert today. Yesterday he was very sleepy. He has a wicked butt rash so he had a little 'oxygen therapy'.....which means we take his diaper off and he lays on the bed with a plastic cup that has the oxygen tube stuck through it blowing on his cute little butt!!!! He was so cute laying there. He was rolling onto his side trying to get onto his tummy.....too cute......Paul was with Kaden tonight and he slept the whole time except for about 10 minutes. Just enough time to change his diaper and give a few smiles. He has a 'float nurse' tonight till 11:30.....needless to say she had absolutely no idea what to do. Not too familiar with g-tubes (feed tubes) so Paul had to tell her she needed to clamp it between meds so that the med that was just given doesn't come shooting back out.....AND.....he has a neighbour that is on isolation (you have to gown,glove & mask) before going in......she didn't know anything about being in isolation.....ahhhhhh!!!!!! Kaden better not get sick......anyways we made a call to the charge nurse and he is going to clarify with her what it means.....brutal!!!!! They will be taking a Phenobarbital blood level tomorrow morning along with a blood ketone level and a glucose blood level. His blood sugar has been a bit low so they want to check that. After they check that they will be taking the IV out as its just a source of infection and if its not being used I would rather it be taken out.

Elle is good today. She had a great sleep last night and I had to wake her to get ready for school. She had a nap at school and enjoyed 'special music'!! She loves music. I stayed home with her tonight as I have been at the hospital alot cause we have had extra nursing for her. She had a nice bath and alot of kisses and snuggles.

The above picture is of Elle in the walking system that Paul and my dad made for her to help her learn to walk......

Monday!!

Last night before leaving the hospital Kaden had all his 9pm medication and shortly after that he threw EVERYTHING up.......I got him changed, and cleaned up and soon after that he fell asleep and Paul and I left. Elle was still awake when we got home so mommy got some snuggles before she fell asleep. She was up this morning at 6:10am!! Someones having a nap a school today!! I am busy cleaning up Kaden's room as its gotten out of control and I think its giving off a vibe of we don't want him home so I thought it would be a good idea to get it cleaned up and ready for him when he is ready to come home again!!!!!

Hanging out with our guy...

These were taken Saturday afternoon.....a good day!!!!!!

Saturday afternoon.....

Elle's nurse was here taking care of Elle and Paul and I were off to the hospital to spend the day with Kaden. After a Starbucks run and and a discovery that we had forgot to pay the van insurance we finally made it there!!! He had just fallen asleep when we arrived but woke up shortly after. He was up from 3am till 1pm today....he slept so much this week that I think he is abit confused and hope that he doesn't get off track cause he was doing so well. Anyways, we played all afternoon. He had smiles for his mommy again today but those eyes of his are still looking like he is on way too much Phenobarbital. They have held his doses and are doing another blood level at 9pm tonight and if all is well they will resume his regular dose....oh will this madness ever end??

Elle was up today at 5am and didn't go back to sleep till 7am only to wake up again at 9am!!! She felt abit warm when I fed her so we gave her some Tylenol in hopes that she was not getting sick. So far today she has been fine and has played all day and has finally fallen asleep for a little nap.

Well my mom and I went to the hospital tonight and thought we would be home around 10ish as usual....NOT!! For some reason someone threw out Kadens formula and he was left with none for the rest of the evening and morning.....not good. His Ketogenic Diet has a special formula that is not bought in the stores. So, amazingly enough we had picked up our order at Deer Lodge so we had it at home. I had to get Paul to check the special scale and then pack up the formula and dad had to drive over, pick it up, then drive to the hospital to drop it off to us. Then, a couple of the nurses, and a resident had to somehow figure out how much powder and water to mix to try and get the right ratio.......at that hour there are no dietitians, kitchen staff.....nobody.....anyways they managed to come up with something and he got feed an hour later. His Pheonbarbital blood level was 40 so he was able to get his evening dose and they will check it in the morning.

Up from the basement.....

Well your all probably wondering where the heck we have been! Kaden has been battling a Gastrointestinal Virus. He has been throwing up since last Friday. He also has a very (shall we say) explosive butt.....which is quite irritated. His throwing up has stopped now and he is just trying to get stronger. He had some smiles for his mommy today but was quite weak and pale looking. His ketones are only 4 due to all the fluid loss/IV fluids given due to dehydration. His Phenobarbital blood level today was.......6o!!!! WOW!!! Way over toxic levels. They held his 3pm dose and we hope to get this down. May be one of the reasons he is so sleepy today.


I have also been infected by his little bug.....better now and back with the real world!! I was bonding with the basement for the last five days. Paul was bonding upstairs trying to take care of Elle and tend to Kaden at the hospital. Nana, Papa and Grandpa also contracted that lovely little bug!! They are still recovering. Thanks to all the helpers we had this week. Your willingness to help is much appreciated !! :)


Elle enjoyed a great week at school. Most days this week she also enjoyed 2 1/2 hour naps at school!! She got her 'report card' today. We are so proud of her. She is learning to communicate through a 'big mac'. That is a large button that you can record stuff on and then she can communicate in the activities they are doing in class. Her classmates enjoy helping her. She is also spending lots of time in her stander which she absolutely loves. We also sent her walker to school which she scoots around in in gym class. She is a beautiful little girl with a happy personality....thankfully!!!

We have a nurse for Elle tomorrow afternoon so Paul and I will go spend time together at the hospital and snuggle our other little cutie!! Hope to report good things tomorrow about all.

Video of Kaden....short but sweet!!!!

This is a video of him today. I ran out of batteries so it is short. The other is just a picture of him today. Looking handsome as ever!!!

Talking.....

Elle stayed home today from school cause she had a bit of a sore throat. She can't tell us that but when she makes noises her voice sounded different. She is otherwise happy and playful today. Good day to stay home with all this rain.

Kaden also had a good day! He was a bit sleepy yesterday and wasn't as attentive but he is back to himself today. He was 'talking' today alot and it was super cute. He was so loud that it was hard to carry on a conversation with the nurses!! Anyways he talked himself asleep and I left around 3:30. Elle's nurse is done at 4:30. His Phenobarbital level was 32 so they are bumping it up a little so we can see if he can maintain a more constant level. Paul had a conversation with his pediatrician but I haven't had a chance to find out the details yet. Paul was busy in a meeting when I called him. Kaden was also doing good with sitting today. With just a little support at his tummy he sat up and played with his bells and looked around.

Kaden's old room

Its hard to see how big is was but there was alot of room for his stuff plus a big leather recliner, other chairs, and two big mats for Elle.....

Disappointing day....:(

Today is disappointing not because Kaden is having seizures but because he was moved to CH4 monitored room.....I won't get into why I think this move is a bit political. We are very unhappy with this move for many reasons. Kaden was VERY well taken care of in PSCU. The nurses there treated him like he was their own. We never had to worry that he may be laying there alone staring at the ceiling. In fact sometimes they just wanted him to themselves and didn't want to share him with us!!!! Comforting to know they love him like we do. They truly are very special people in PSCU that go out of their way to care for him. (and Elle) As for me, I have spent MANY hours, days, months and years with them and they are some of the most special people I have ever had the pleasure of knowing!! As for this move.....well, now that he is in the monitored room there is no place for all of us to be like a family on the weekends anymore...the room barely fits Paul and I. It can also be a breeding ground for infections/sickness. I know we can't control Kaden and when he is ready to come home I just wish one thing could have worked in our favour and we could have stayed in PSCU where we were comfortable and he was extremely well taken care of......shouldn't we be allowed to have something work in our favour?? Anyways, his ketones are holding steady at 6-8 so that is good. Still need them to get up to 12-16 but its coming along slowly. Yesterday he was a bit sleepy. Not sure if that is due to his high Phenobarbital level (40.2). He was back to normal today happy, smiling and babbling away!

Elle was a school today but had to have a nap from 9am-almost 11!! She was up at 4:49am on and off till 7am. Not surprised she was tired. Other than that she is well and happy at school. They are just trying to stay away from the 'sick kids' as we don't need her to get sick again. Two times in the hospital in a month and a half is enough when you have another one in there already. The nurse are VERY good at steering her away from the 'infected ones'. There were a couple of sick kids in grade 1 today so they just stayed in their own zone or would go to the other class with the skills for living kids. They clean everything off that she touches (she puts everything in her mouth) so that we can minimize the times she gets sick. This may sound crazy to people who don't live a life like ours but its not fair to Elle to have her around sickness, she gets sick then has to be hospitalized when we could have prevented it. Not rocket science to us.

Other than that Paul is coming home tonight so that is a relief. He hates traveling so he will be glad to be home, sleeping in his own bed.

Ketones!!

Kaden has had ketones of 8-12 this weekend. That is good. Hope that the seizures stay away and he can come home soon....this hospital thing is getting old....VERY OLD.....He was once again happy and in good spirits this weekend. He collected a bag of candy that we are quickly eating. Was at the hospital tonight and he was cute as ever. Playing and laughing.....by 9pm though he was tired and fell asleep.

Elle was with us all weekend at the hospital but by the end of this afternoon she was about done with this hospital thing too! She had a melt down this afternoon and when we got home she was 'melting down' in her car seat. She just wanted to be home. I don't blame her.

Paul is away in Atlanta for work so that makes it a bit tricky here at home. My mom is staying over while Paul is gone. That's a help. I think I have tomorrow and Tuesday night organized for Elle in the evening....Michele and ?? who ever she gets to help her and Mom and Dad on Tuesday night. Then Paul will be home later on Tuesday and we will be back to normal....well, normal for here.

See what this week brings....something happy I hope.....:)