Great day!!

Elle is doing so great!! She is off oxygen while awake and just needs a sniff while sleeping. She is almost back to full feeds and she is full of energy. She was sitting up playing in her bed and for chest physio. She is also obsessed about her hands in her mouth so you know she is feeling better!!! Her blood work was a little better too. Hemoglobin was down a little but her white cells and platelets were up a little. She is on an antacid to help with the blood in her stool and I think that is getting better too......can't wait for her to come home!

Kaden is doing well. Still coughing but much more active and he must be teething cause he is drooling like crazy. He was also down to 1/4 litre of oxygen while awake so that is also good.

Paul is at the hospital tonight so I have not heard what her night has been like. Grandma R spent the supper hour with her and Nana was with her this morning.

Is Elle ever coming home????????????????????

This hospital stay seems to be taking FOREVER.....I have not got the full update yet as Paul only got there after 2pm this afternoon. He is on holidays but had to go into work for awhile today. Elle had a good weekend. She is way more awake and smiling, laughing and quite happy. She has been looking better and better since late Thursday. Her blood work is still not great. Her white blood cell count is still VERY low. Its around 1.9 and normal is 5-15 so again this is making her immune system very vulnerable to infection so we are still gowning and masking to protect her from any sickness out there.....Red blood cells are also very low. Somewhere around 1.79 normal being 4-5.2. Her hemoglobin was up yesterday at around mid 70's normal being 115-155. Paul just got home and has said that her blood work was up alittle today so they are hoping that all her numbers are due to some kinda virus and they will return on their own.....guess we will see.

Kaden had a rough night coughing and choking so today he is very tired and not so happy!!!

Smiles.....

Today Nana spent the day with Elle. (Grandma R also stopped by for a visit) She was smiling today!!!!! Laughing too!!!! Her chest is still tight but she is coughing alot so that is good. We hope that she is turning around and get better and better so she can come home.....

Kaden still has a fever off and on. He is coughing abit too. I had him in for some blood work this afternoon. Phenobarb level, CBC, and Cap Gas......his Phenobarb level came back at 59.1!!!!!! HOLY COW!!!!! three days ago it was 43!!!!! Cap Gas was normal and the liver function is getting back to normal......we are decreasing the Phenobarb dose tonight and go back for blood work in 10 days.......Whatever happened to playgroups and swimming lessons......guess those are not in our 'daily fun'......we get blood levels and sickness.....sure is getting old fast. All we ask for is a little piece of normal. When I was talking to the Neurology Nurse today she told me that children with special needs are always given to 'amazing parents' cause not many people in the world could handle this......I wish we weren't 'amazing' if that's the case......just want them to have a healthy life without people poking them, suctioning them and making them cry......and to enjoy all the things other children do......

Well, one of us will be off to the hospital tonight. Paul is now on holidays but of course we will not be enjoying any 'family time' cause we can't bring Kaden to the hospital cause of all the sickness that lurks around there. We will see how the weekend goes and maybe we will have Elle home for some of Spring Break......

Getting tired.....

Elle is starting to show signs of getting tired. They are calling in the 'Rapid Response Team' to assess her. They will be giving her the L-Epi mask and then they will be back in an hour to reassess her. If things don't start to turn around she will be headed to the Intensive Care Unit.....The masks just don't seem to be doing the trick and she is super weak. I can't go there this afternoon as Paul went to work and someone has to watch Kaden (who is looking like he is getting sick now...) Nana and Auntie Lori just got to the hospital so they will keep an eye on Elle for now. That's all the news so far. We will just wait to see how she responds to the mask......

No worse.....

Elle is holding her own. Her chest is still very coarse. She was coughing more today and was awake most of the time I was there. Very weak though. This one should keep her out of school for a good three to four weeks........Her white cells are up and same with platelets. She is still on 3 litres of O2 but sats are in the high 90's.

Kaden, my little guy. He is not him self. Feverish on and off all week. I was excited tonight was my first night that I could stay home in a week (Paul was well enough to go see Elle) and he had absolutely no smiles for me at all.....maybe tomorrow. Suppose to take him for a Phenobarb level tomorrow but our street sucks so I will have to see.

Any who better end this and get Kadens feed done.

We just got a call from the hospital saying that Elle has RSV....it is a type of virus that is resistant to antibiotics which make sense that the ones she is on are not working for her. So I guess we will wait this one out and hope she recovers quickly. They are giving her masks that seem to make her more comfortable. Kaden has been getting the RSV shots so we are hoping that he won't get this one.

Quick note.....

Elle continues to struggle while breathing....She is on 4litres of O2.......her face for some reason is quite puffy. She was moved to her own room due to her white blood cell count being low....with it being low she is unable to fight infection right now so everyone that enters the room must gown and mask to protect her. She was uncomfortable this afternoon crying, tossing, turning but this evening she seems to have settled abit and was sleeping when we left. Her platelets are still low also. They have consulted Hematology regarding her blood issues so I hope that tomorrow we see someone come around.....things just take forever around there. If I missed something I will post it tomorrow but for now I am off to bed.....

Update....

Elle is still not looking great. Her breathing is still laboured and she is quite uncomfortable. She for the most part continues to have a fever though when I left she was without one....They are changing her IV antibiotic to a broader spectrum one due to the fact her white blood cells seem to be decreasing. That being said if they continue to decrease that puts her a great risk of getting some other kind of infections that her body is unable to combat....if they keep going down she will have to be put into isolation in order to keep her from contracting anything....the poor girl just can't get a break.....she has been crying and uncomfortable for days and just sad to watch.....she did have a few smiles for me today though. They are also giving her bolus' of fluid as her urine output has been decreasing also....anyways better run back. Paul has been staying home with Kaden. I am just about burnt out with all of this but I guess I have to go on.....

VERY sick........

My dad and I took Elle to emergency on Friday due to her struggling to breath. She was kinda boarder line in regards to admitting but eventually they thought she would be better off staying. Turns out they were right. She has been struggling to breath ever since. She is very uncomfortable and there is not alot of air movement going on in her left lung. (almost sounds collapsed) She has had many Ventolin masks but that is not doing much for her. They are giving her another type of mask that seem to be abit better. Her platelets are low (54 then went up to 69) so they are unable to do chest physio as there is a worry about bleeding so they have been using a vibrator. She is getting IV antibiotics and got some extra fluid as she is becoming more and more weak. The weaker she gets the harder it is for her to get the junk out of those lungs.....Hope that today she is a bit stronger so we can break free of that place.....

Paul is sick also and I also have a cold too....Kaden....well we are worried that he is next on the list as his heart rate has been 170 awake and he seems not quite right......I can only hope that he doesn't get it too bad....Not sure where this came from but wish it would go away. I guess Elle is starting her Spring Break early....

Spoke too soon........

Well it turns out I spoke too soon....Elle has had a fever since Tuesday morning and is still battling that. The last temp was 38.4 even with Advil and Tylenol. She has a respiratory infection and a urinary tract infection. She is on one antibiotic and will shortly be put on another for the urinary tract infection.....She has been sleeping for 2 days. We had her at her Respiratory appointment (good timing) and her chest was okay yesterday but now she has some crackles. We also had her at the Pediatric Day Unit today for a cath urine. That resulting in her diagnosis of a urinary tract infection.....she is white as a ghost. Every time this happens I can't help but ask what has she done to deserve this......she is such a happy girl that shouldn't have to go through all this stuff. The results from her sleep study also came back as good so they are not going to change her management as far as oxygen...

Kaden, he had his monthly RSV shot. They may be doing one more shot depending on the amount of children that are contracting RSV....He also had his respiratory appointment and his sleep study said that he has a bunch of obstructive apnea's and will continue on oxygen while sleeping and if he is awake and below 92 (o2 saturation's in his blood) then we are to have him on O2.....

It is now 10pm and Paul and Lori have taken Elle to emerg. cause unfortunately the prescription never got called in and she was crying and seems in pain. So they are off to see if we can get the prescription through emerg......they are also going to check on her throat swab results.....very unfortunate that we have to go through all this when all we needed was the prescription.

Well, I am off to feed Kaden and relax. I have a sore throat now and am very tired cause Kaden was up most of the night Monday and Tuesday. Last night he was nice to me and slept all night till 5am and went back to sleep by 6am and slept then till 930am.....still not enough to make up the loss but a good start......

We are boring!!!! I love it!!!!!

Not much exciting here. Kaden has been decreasing his Phenobarbital a bit so we were in for a level late last week and his level is down to 48 so we are waiting to here this week if we are going to decrease again. He had a great day today. Very happy, smiling, squirming, playful ect.....

Elle is doing great! Having a great time at school. Papa (my dad) has the week off so he is driving Elle to school in the mornings. Giving my mom a break this week. Pauls parents are away right now so Grandpa Remillard can't drive....Elle will be starting Spring Break soon and Paul has that week off so its going to be nice to hang out with him and the kiddies together!

Both kids have appointments to see the Respiratory Doctor this week and Kaden has his monthly RSV shot.....other than that we are free!!! I love days with no appointments.....LOVE THEM!!!!

Not much new.....

Elle continues to go to school and has been healthy and happy. No results from her ultrasound as of yet. She had a Neurology appointment on Friday morning and everything went well. For now we are just enjoying the fact she has been seizure free for over a year.....Unfortunately we are always on the look out for one but are able to enjoy every minute, hour, day, week, month we have without one.....She seems to be more cognitively aware these days and is really getting physically stronger and more interactive....we totally love that!!!! Saturday morning (5am) Paul went into her room cause she was awake and what did he find?????? Elle was sitting up in her bed in the dark.......she can sit up on her own when she is on a pillow and sometimes from flat on the floor but we have never seen her sitting in her bed all on her own like that!!!!!!!AMAZING!!!



Kaden, he had a bit of a rough morning on Saturday. He gets himself so worked up that he has trouble falling asleep and then gets himself into a fever....his little heart rate was in the 180's but eventually he calmed down and had a sleep and by early Sunday morning he was back 'talking' away full of wonderful smiles and laughing like crazy!!! He is teething right now so he has been squirting bubbles out of his mouth and then of course his shirts are soaked. We love that too!! He is also making great little noises....lots of.... ah, mmmm, ga, and da......it makes us smile every time he does it......he had his first ride in the 'big boy' car seat today. He was getting so heavy in that baby seat. He also had his first ride in the stroller sitting up!!!! Just adorable!!!

Happy Birthday Beautiful Girl!!!!

Today is Elle's Birthday!!!!!!!!!!!!!!!! She turned 7.....and we can't hardly believe its been 7 years. Well, in a way it has felt like 14 and in other ways it feels like just yesterday. She did not go to school today as her nurse took the day off and there is not a replacement right now to take her to school.

Kaden had a Neurology appointment first thing this morning (8am)....I totally hate early morning appointments but that is when they could fit us in. Paul stayed home with Elle which was nice as its nearly impossible for me to take both of them on my own. Guess I could if I absolutely had to but if I can get someone to help its always easier. We met with the Neurologist and went over all his meds ect and have decided that we would do another decrease and check his levels again in 10ish days to see if they are going down. His last level was 54.4 and he has been quite sleepy and a little grumpy. Grumpy can be a sign of the level being too high along with sleeping alot.

Nana, Papa, Auntie Lori and Lori's friend Jackie came over for dinner. Nana and Auntie made a birthday cake for Elle.

They are both sleeping now so I am going to finish the last of my jobs for the day and get to bed.....today was a long day being up at 5:55am.....

Its a party!!!!!!!

Elle had her 7th birthday party on Saturday afternoon.....small family thing....she was all smiles and enjoyed everyones company!!! She recieved many great gifts and thanks everyone for spending the afternoon with her.

Kaden was very sleepy all weekend and we are going to reassess him on Monday when we can talk to the Neurology Nurses/Doctor. Otherwise doing well and still smiling!!

Paul was at the party it just seems that he is the lucky one taking the pictures and not being in any of them.....