Happy Halloween......

Kaden had a great day today. He is getting stronger and stronger every day. All week he has been getting stronger and stronger. Tonight he was able to sit up on his own for about a minute without us holding him!!!!! It was super cute with his Tigger costume on. He is constantly moving and wanting to sit up. Still smiles like crazy and giggles when you tickle him. His Phenobarbital blood level today was 33. They want it mid 30's to low 40's. His ketones were 4-12 today. The higher the better!!!!

Elle was off to school today. She went as a Kleenex Box!!!! Auntie Lori made it for her last night and it got rave reviews!! Everyone loved it!! We are orientating a new nurse Deanna. She seems nice so we are hoping that it works out.

We all went to the hospital to spend the evening with Kaden. His first Halloween!!!! PSCU (where he is at Children's) had 50ish medical students come through all dressed up giving out candy to the kids in the hospital. Both sets of Grandparents and Auntie Lori came for a visit tonight too!! Fun times at Children's Hospital!!!! We are off the hospital tomorrow. Paul is going away on Sunday and comes back Tuesday night. Not my idea of fun but I will have to make it work somehow.

Celine Dion....

We were so close it was awesome!!!!!!!!!!!!!!!!!

Great Day!!!!!!

Kaden was amazing today!!!! Happy,active and full of smiles. I even had him sitting on his own and did quite well!! Ketone were at a steady 4 so that is good. No seizure activity today (that I saw anyways) Nana and Papa were with Kaden tonight as Paul, Lori, Paul's Auntie Joy and I went to Celine Dion.....which was amazing!!!!!!!!!!!!!!!!! He had a great night with them and was equally as happy. I love this picture by the way. He is so cute. Every time I look at this picture it makes my heart smile. He is so precious.

Tonight....

We were at the hospital tonight with Kaden. He slept the whole time we were there. He opened his eyes just long enough so that we could tell him we were there with him. He has not had anymore seizures since this afternoon so we are hoping that they have been stopped and we can get back on track. We hope tomorrow will be a better day.

Picture from the weekend....

Paul and Elle doing chest physio......

Elle and Mommy having snuggles.....
Our Kaden playing in the bouncy seat.....

Good weekend!!!!......Bad Monday....

This weekend was a good one! Elle is over her pneumonia and Kaden had a great weekend. We had Elle at the hospital Friday night, Saturday and Sunday. Sunday night Nana, Papa and Auntie Lori watched her while Paul and I went to spend the evening with Kaden.

Elle will be back to school this week. Might be hard for her to get up in the mornings as she is now use to sleeping in till whenever she wants.....usually 10ish with lots of naps during the day. Guess she is just going to have to have a nap at school if she gets tired. In her Skills for Living class they have a 'quiet room' that her and the nurse can go if she gets tired. They have a mat and some blankets so she can relax. She will be excited to see her friends. The last time she was away sick when she came back one little boy runs into the class and yells "Elle's back, Elle's back!!!!". Her nurse said it was so cute.

Kaden, he is getting more teeth. His little cheeks are bright red. I took a peek and it looks like there may be one on the top and a possible one (if not more) on the bottom. He has been doing chin ups!!! Yes you read that right. He lays under his mobile and pulls on one of the toys hanging there and rolls to the side and pulls himself up. He is still smiling like crazy and laughing too. He is such a happy kid. (both him and Elle) His ketones are still not great so we are hoping for another change tomorrow with the Dietitian. Probably going to concentrate his formula in order to decrease fluids and see if they go up from that change.....will they ever go up?? He was up this morning playing with his nurse Angel on the mats and sitting is the bouncy chair. Sunday afternoon he was also up in his bouncy chair playing with toys.

Visitors for the weekend: Nana and Papa on Saturday night

Lorraine (next door neighbour) Sunday afternoon

Grandma and Grandpa Sunday afternoon

Auntie Denise Sunday afternoon

Thanks for the visits!! It helps pass time and its always nice when people come to visit as otherwise we don't see anyone!! We don't usually have time to see people as Kaden needs us right now.

Well, today (Monday) is not a good day for our little guy. I arrived at the hospital only to find he had just finished his second seizure and was in the process of getting an emergency medication (midazolam). From there he continued to have 6 more seizures where he would stop breathing. Not all of them required 'bagging' most of them he responded to some gentle poking and being talk out of it. He was then given more midazolam and a phenobarbital loading dose of which has seemed to stop them for the time being. He was also started on another seizure medication called Kepra trying to get his 'cocktail' right. I left the hospital at 3:30 to get home to Elle and he was very sedated and sleeping soundly. The picture above is of him after all his medications were given. Our poor kids and what they have to go through......nobody can ever understand the sadness in our hearts every time we see this happen....

Elle made it through school today but was very tired. She was awake at 5:30am this morning but went back to sleep by 6am and back up at 7am to get ready for school.....she is napping now and having her feed.

We are off to the hospital this evening to spend some time with our little guy. We hope he has a more restful night to give his brain a break.

Chillin'

No worries.....

After a conversation with Kaden (and Elle's) pediatrician Kaden will not be coming home today. The residents at the hospital miss understood what was happening. His doctor was just wanting to "revisit" what goals Kaden must meet before going home. She had never said he was going home. We thought it was out of character for her to just all of a sudden say he was going home. We think our pediatrician is great. She is very attentive to Kaden and Elle's needs and always has their best interests in mind. She sees Kaden every morning and always calls us to make sure we are all on the same page. We trust her completely!! The Neurologist on for the week also said last night that Kaden was not ready to go home till he was a bit more stable on his diet. The goal is to get his ketones to be 12-16 but if we could get them to be 8ish consistently then he could come home and we would take it from there. He is still having his blood sugar tested every 4 hours and we may have to learn how to do that once he comes home depending on him at the time of discharge. That's what every mother wants to do.....poke your baby....make him bleed.....he is actually so use to it he doesn't even cry anymore!! He also got his flu shot yesterday. (didn't cry with that one either!!) I guess that means the 3 of us are due for ours too.

Today he had his port-a-cath changed. The removal of the tape was of course the worst part. He cried like crazy while they pulled that off and then when they took the IV out and put a new one in he didn't make a peep!!!!

Elle is much better today. Chest is clear and way less coughing. She hasn't gone to school this week as we are trying to give her a rest in hopes that these pneumonia's will stop reoccurring. From the first day home from the hospital she has not needed oxygen which makes us very happy.

Just a note that while at the hospital tonight I checked his ketones and they were 16!!!!!!!WOW!! They have never been that!! Tonight he was good. He was happy and smiling as usual. He is in constant motion and is better at sitting with support. He is so cute sitting there looking around. Anyways, can't wait to head to the hospital tomorrow and squeeze cotton balls!!

Worried about tomorrow.....

We are worried about tomorrow because the doctors at the hospital are saying he can come home and we don't think he is ready for that and either are we. We would like him to be abit more stable and have some concerns about emergency medication, the fact he needs to be "bagged" when having a seizure, seizure meds and that the diet is not in full swing......it seems it is just one fight after another....one decision after another.....it never stops....EVER!!!!

Handsome little man......

Same old Same old......

Elle is still at home recovering from her cold. Her chest is not too bad today and she has had some strong coughs. She stayed home tonight with daddy while I went to the hospital. We are officially down a nurse for Elle as one of them was just not working out.....long story.....some may have heard it. Anyways, Sharon the other nurse is going to do full-time for the next six weeks and then we will see what wonderful plan Homecare has up their sleeve!!



Kaden had a great day and evening!! He was VERY happy again today. He had his port-a-cath locked yesterday cause the IV fluids running through it were giving him an extra 70ish ml which could be causing his low level of Ketones. His phenobarb level was 41 today!!!!! WOW!!! That is very high. They consider 40 to be toxic!! Never the less it doesn't seem to make him sleepy at all so that's good.



He had some visitors today!!! Grandma Remillard and Auntie Joy were there in the afternoon for a while bringing gifts of new blankets!!! He was playing peek-a-boo with them and laughing!! So cute!! Tonight Nana came to visit and we had a mini photo shot.....I will post some pictures tomorrow once I figure out what I have done to the camera......boo technology.....

Happy Boy!!!!!!!!!!!!!!!!!!!!!!!

75% of us are home once again!!

Elle came home today from the hospital. Her chest sounds much better but she is still coughing alot trying to get all of the stuff out of her lungs. She is off oxygen while awake and we are hoping that she will be okay over night tonight. She was able to see alot of the nurses that took care of her when she was a baby and they were all very excited to see how big she is. Some of them didn't even recognize her as she has grown so much!! She will not be going to school tomorrow but will see what she is like on Tuesday.

Kaden has had a bunch of great days! Today he was happy, smiling and laughing! Ketones remain a big problem and we hope to get this diet fixed up this week as its gone on long enough like this. His blood sugar is steady at around 3.2ish which is acceptable for a munchkin like him. He is sleeping well. Infact Paul went there tonight and he slept the whole time he was there. He was disappointed cause he was looking forward to playing with him. Good chance for Paul to get more of his work done....reports......emails.......performance reviews.....more emails.....more reports......

I am trying to figure out just how many weeks (if not months) he has been in hospital. Once I figure it out I guess I should put it down in the blog so maybe just maybe I can keep on top of things.

Never the less this whole repeat of events remains a VERY large stress in our lives. We will stick together and be there for Kaden like we were for Elle and we will make it out worn but alive. We live a very different life than anyone else we know and only we truly know what its like to live this life. To watch your children stop breathing. Watch their heart stop. Watch strangers that have become family fight to keep our children alive in hopes that one day we can bring them home and try to live a life somewhat like everyone else. We owe everything to those people at the hospital that have saved their lives. They are Elle and Kadens angels.

Both kids in hospital.....AGAIN!!!!

On Thursday night Elle's cold got worse so we had to bring her into emerg. She was put on IV antibiotics and sent up to a monitored bed on CH4. Friday she was already much better. Sitting up, laughing, smiling and chewing on her IV. Today, she is even better. She is off her oxygen while awake and was okay without it while napping.

Kaden had a great day too!! He was full of smiles and laughing too!!! He had snuggles and kisses all day. He is very spoiled. His Phenobarb level came back at 35.6 so that is very good and the Neurologist was happy with that. His Ketones were 8 and that is also good! They are still taking his blood sugar levels every four hours so that is kind of a pain as it seems to always happen just when he falls asleep......He was awake all day today and finally fell asleep at around 5 and was still sleeping when we left the hospital tonight at around 11pm......knowing him he will be awake all night playing....

Just another day at the office!!!

Well, today was 'boring'.....just the way we like it!!! Elle went off to school. That darn bus picks her up at 7:40am!!!!! WHAT!!!??? Who goes anywhere at that hour of the day?? She enjoyed every minute of school today. She didn't even have a nap! Of course once she arrived home it was lights out.



Kaden had a good day too! The Neurologist is increasing his Phenobarbital (seizure med) again to try and keep his blood level up. It should remain steady but for some reason his body metabolizes it quickly therefore causing him to have seizures. His Ketogenic Diet is still going and his 'ketones' were 8 the last I checked them this afternoon. They want the 'ketones' to be between 12-16....a ways to go yet. He had a port-a-cath put in at the end of August (a type of IV that is placed under the skin by his collar bone) We had that put in cause he has no IV access and that is VERY important in an emergency situation.



He was playing, cooing, and smiling today. He is soooooo cute!!!! He likes to flirt with the nurses. Auntie Lori was there for a visit this afternoon taking a bunch of pictures and videos of him talking away to himself.....Paul went to the hospital to hangout with his little man while I stayed home and hung out with my girl!!!

Busy Monday...

Kaden had his Nana and Papa watching him today while we were out at Auntie Michele's house for Thanksgiving. Neurology, Respiritory and Dr. Grimes were in to see him today....busy little guy!!! They think he now has some kind of chest infection so they have put him on 2 antibiotics. The Ketoginic Diet is still going on but we are having trouble getting his Ketones up due to him being so unstable. His Phenobarbital (seizure med) is going to be given 3 times a day now to try and help him maintain a decent level in his blood. He slept most of the time we were there today. A few smiles and played under his mobile for awhile. Elle came with to see her brother and she too thought that she would have a nap.....sleepy day!!!!

Grandma and Grandpa Remillard were up to visit tonight. Elle stayed home cause she had a nurse to watch her. It was nice for her to stay home tonight and play in her own environment with all her toys.

A better day today!!!!!!!!!!

Kaden has been having a bad week. Tons of seizure that have been hard to control. Tuesday he had a very serious one that caused his heart to stop and require chest compressions. Lucky for him he has some fabulous nurses that got his little body started again. Saturday was a bad day which got him 3 doses of Midazolam, 2 code 25s and a trip to Intensive Care for the night. They watched him closely and he was returned to PSCU (special care unit) this morning. He was smiling today which was huge for us as this week those were few and far between. We had "family time" this weekend!!! Elle is able to come to the hospital with us and hang out on the mats the nurses have laid out for her!!!