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!!!!