Elle is sick again......

Well you have all probably been looking for updates....I have been abit lazy in that department.....sorry!!!!

In continuation of my last post Elle was confirmed to have H1N1. The swab came back positive!! WOW....we are shocked but happy about it in a way....now that she has had it she can not get it again. She didn't get too sick and we managed her at home so that makes mommy VERY happy. Even if we were locked in at home for 3-4 weeks...

NOW...she is sick again. She got a fever last Wednesday and on Thursday we had her in to the doctor and back to Children's Emerg that night for a cath to test her urine for a UTI. Turns out she has another UTI and is back on antibiotics....but...today at lunch time i took her temp and she had another fever....so...more Tylenol and she has slept for alot of the day. Put a call into her Pediatrician and we are taking her in tomorrow to get checked out.....She also had repeat blood work last week to recheck her platelets and white cells and everything checkout good.

Kaden is well.....happy and he makes the most adorable sounds....he even sounded like he said 'ma' three times the other day.....

Anyways that all for now I will try to update regarding tomorrows doc appointment....

Elle is sick......

Yeah I know I have not posted for a REALLY LONG TIME.....not alot of excitement so I figure that's good!!!

Well, now we have some excitement!! Elle started to get sick on Sunday with a fever and was VERY tired. Then that night around midnight when I was giving her some Advil she started crying like she was in extreme pain and that is very unlike her....so she calmed down but shortly after that started up again and Paul came down and decided he needed to take her into emergency.....so......they packed up and didn't get back home till 7am the next morning...needless to say there were some very tired people on Monday....Elle came home with an IV in and has had to go back every morning for IV antibiotics....7am in the morning....not fun....Paul and his mom have been taking her and I have been staying with Kaden....no point in having both of us exposed to that dirty infected emergency room.....so anyways they are slightly worried that her symptoms (cough,runny nose, lethargy) are linked to H1N1 so we are now watching her very closely to make sure she is not getting worse and so far she seems to be holding her own....the antibiotics she is on are for her urinary trach infection. They go back tomorrow and then hopefully that is the end of the trips to emerg.

Other than that we are all healthy....cross our fingers...Kaden is doing good and we are still decreasing one of his seizure meds....going for a level in a couple of weeks. A couple of weeks ago we all got our flu shots and H1N1....one can only hope that keeps that nasty sickness away......

The pictures above are just of Elle looking all sick and cute at the same time...and Kaden...he rolled over and then fell asleep....SO CUTE!!!!

First day of Grade 2......eeekkkkk!!!!!

Well the bus came this morning just after 9am and took my little girl away......she of course never travels without an entourage. Today she had both of her EA's and the school nurse. The bus was late though as the driver got lost. She woke up this morning fairly easily and was smiling in no time. The school nurse called when they arrived at school and said Elle laughed and smiled the whole trip. Now all we can do is pray that she doesn't get sick a million times while being at school with all those other children....

Here is a little video of Kaden "dancing" with daddy.....he is doing well and I would imagine that he will be enjoying the undivided attention of his mommy while his sister is gone to school.....He loves to be talked to and 'loved'.

Since the big H1N1 thing is about to take off we are getting more and more worried about Elle (or Kaden for that matter) getting it. So, in order to keep our living environment as "clean" as possible we are going to let everyone know what exactly our rules of the house are!! I know for some of you you already know what they are and for some you may not. We are not trying to be difficult we just want to keep the kids and ourselves as healthy and happy as possible. Being that we have no respite if Elle is on a school holiday, school days off and sick days that leaves me as sole caregiver of BOTH. Last year Elle was VERY sick MANY times with colds, blood infections, GI flu......these literally put her out for weeks if not months and we feel if we can prevent as many as possible it makes it easier on our family!! So here they are!!

RULES OF THE HOUSE:

1) Absolutely NOBODY comes into our house with any kind of cold, flu or any other kinda sickness.

2) If you think you may be coming down with something DON'T COME OVER!!!!

3) Upon entering our home please be so kind as to wash your hands or feel free to use our hand sanitizer

4) NO CELL PHONES!! If you think you are going to have to use it while here please wipe it down with the sanitizing wipes we have.....

These rules don't mean people can't come over we are just trying to not repeat last years events!! We love visiting with people.

Visitors...

We are outta here.....Kaden's first trip out of the city......Look how Elle is looking out the window. She did that the whole way there.....too cute....

Well, we are back into our daily routine. Last week we had my cousin Angie and her two children from Alberta visiting!! Along with them my aunt (Angie's mom) was also here. We were busy with stuff all week. We all went to the Children's Museum at the Forks (Auntie Lori came too) we were at Polo Park Mall, St. Vital Mall, a couple dinners are moms, a morning of appointments for the kiddies (Respirology) a dinner here at our house........Oh! Angie fell down the stairs and hurt her toe......it also rained ALOT so our plans to go to the Zoo were out.....all in all it was a nice week of visiting, laughing and having fun with the kids.

Kaden has had another decrease in Phenobarb and we took him for a level today so hope to get the results tomorrow. He has been otherwise good. Smiling and so darn cute you just have to see it to appreciate it!!! What a sweet little guy....He had his Respirology appointment and did well. His oxygen level tested good while awake and we still need to be giving him o2 while sleeping. Lungs sounded good.

Elle, she is good also!! We have just found out the the Respiratory Dr. has said 'No oxygen monitor to be sent to school'.....that is a problem for us and now have to think about our next step......School or no school......take it to a higher level???? Health Minister??? Hmmmm???? If she sleeps with the monitor at home what is the big deal taking it to school??? Frustrating......

We took a little outing on Sunday......yes, outside the city!! We took a wishing well that my grandpa made out to Beausejour to my moms cousins campsite.....drove there.....visit for an hour.....drove home.....nothing huge but huge cause it was Kaden's first trip outside the city limits.......

Paul is on holidays this week and we have a nurse and HCA tomorrow so we are off to do some shopping on our own!!!! Maybe lunch???? Then hope that the weather stays nice and we can take the kiddies to see Auntie Lori at the English Gardens on Thursday.

Take care everyone!!! Enjoy your week!!!

The past week.....

We have not been up to much. Still waiting to have our flooring completed which should be this Thursday!!!! Kaden is still working on his last med change before having another level done. Elle is doing well. Our respite is still very none existent. This week Kaden had his nurse on Monday and Elle was to have her Health care Aide on Wednesday but she was sick and then Saturday was her regular evening shift but when the HCA came she was 'starting' to feel better so Paul and I decided that she shouldn't stay. Kaden's Saturday night shift......UNFILLED!!! We had made a call to the respite office this week and they were going to look into Kaden's shift.......still no call back....Honestly people have no clue. They (being doctors, specialist, respite office ect.....) always say how important it is that parents get out on their own yet it never seems to be a priority for them to try and fill it.



This weekend my sister moved so mom, dad and Paul were busy helping her and Jackie with the move. They are slowly getting settled. Tonight we were at mom and dads for dinner and now at 11:25 & I am almost done with Kaden's feed and then off to bed!!



Elle has an orthopedics appointment this week to get some ankle supports to help her stand better!! We have been waiting for these for awhile so we hope they will work for her. Kaden has his Port-a-cath flush ( his IV that is surgically placed under the skin just below his colar bone) This IV has to be flushed with heparin once a month if its not being used to keep the line open.



Well that's all for now!!!

There is just one of the many, many, many smiles that our beautiful little girl gives us everyday.....she is so amazing.....

High Levels

We had Kaden at the hospital this week for a blood level for his Phenobarb. Of course they call back saying that his level is now 51!!!!! This is very confusing for us as I have just finished decreasing him two times......So, we are now in the process of decreasing him another couple times and then take him back for another level in two weeks.....He is a bit more sleepy and 'dopey' at times. I would love to see what he could be like without that nasty drug. They say its one of the worst ones in regards to alertness and really decreases a persons ability to function. Therapeutic levels are more like 15-30 and over 40 can be toxic to your body. At 51 no wonder he is sleepy! Other than that he has had many smiles and some wonderful giggles.

Elle is sweet and adorable as usual.

We were at the neighbors for dinner tonight. Nice to get out and have a change of scenery.

Paul leaves for Atlanta tomorrow for work and will return on Wednesday afternoon....

Dusty, Dusty, Dusty.....

Besides our regular very busy days we have been under construction.....our hardwoods have slowly been installed over the last week.....its the stairs that have been taking so long. They are almost done and now we wait for carpet.....back ordered....this is not fun.....we are in the process now of cleaning up all the dust from this little adventure and getting some things back in their place.....

A side from all that the kids have been relatively good. Still next to no help and Kaden's evening shift is STILL not filled. This system is VERY frustrating leaving us to wonder who exactly is on our side???? WHO????? Who is it that advocates for us in getting our evening out away from this challenging life.....sometimes you just want to give up but then you see a couple of beautiful smiles from some very happy little faces and you go on.....

A week or so Kaden's feed tube fell out. His nurse replaced it and then three days later it fell out.....then I put a different one in to tie us over till we got another one of his.....got another and it fell out.......and so on and so on.......long story short they cost about $350 each so we used around $1,500 in feed tubes not including the temporary ones in between.....I have posted a picture of his feed tube above. the little skinny part is what is inserted into the hole in his tummy and the larger part is where we connect the tube to feed him....that part is maybe no larger than a dime or nickel in size. Should they fall out they tell us that you have about a 2 hour window to replace it with a new one or the hole could start growing in.....Now we are just waiting to get a new one of the type he normally has.

Elle is totally enjoying her school free summer. Lots of smiles and laughter from her. She has learned to clap (not a huge thing for most people but HUGE for us) I often find her clapping to herself.....in her bed in the dark, in the van, anywhere and its soooo cute.

Well tomorrow we are off to get another blood level for Kaden's Phenobarb and will also be busy cleaning things up here.....Paul is back to work and probably glad about that as he worked like a slave everyday of his holidays last week.

Helpless.....

Yes, you read it right.....we are officially helpless. Meaning we said 'goodbye' to our nursing as of last Tuesday for Elle. We have been given no choice in the matter and apparently have 'others' making the decisions on our behalf. The transition was to be gentle and easy us into our 'new way of life' but once again our wonderful health care system has dropped the ball and we went from help daily to absolutely no help.......we were told to pick dates that we would like our health care aide to come but unfortunately our request don't suit her availability. This remains a work in progress meaning nothing is happening.....I had chose days that matched up with Kaden's so that I could have one day a week that I could get out and get some things done. Another thing that doesn't seem to be working out is our every second Saturday night out. It is important for us to be able to go out just us and see a movie or whatever people do when they go out. As of right now we have nothing booked for Kaden's every second Saturday night for the rest of the summer. Elle's health care aide comes but we can't go out!! The lack of compassion in people is surprising to me yet over the last 7 years has taught me not to be so surprised.....Oh well I suppose everything will work out in the end its just going to take the summer to figure it out.

Kaden continues to have high levels of Phenobarb so we are once again decreasing (2x) and then a blood level will be done again next week. He was super sleepy today and really didn't wake up till 5ish. He kinda comes alive at 5!!!!

I took both of them for a walk today on my own in their new stroller. I will have to take a picture of them in it and post it so everyone can see. They look so cute in it!!!!

Paul is on holidays next week so that is going to be a big help. He is also taking a week in August which is huge cause he has never taken 2 weeks in the summer EVER!!!

Other than that we are not very exciting. Hoping to spend more time outside and enjoy the nice weather.

We are still here!!

Kaden's cold has finally gone away. He is off oxygen while awake and back to his happy little self. We have not been for a blood level for awhile and frankly I am avoiding that hospital as much as possible. Not interested in getting the flu. I even went so far as to cancel and reschedule Elle and Kaden's Respiratory appointments that we had this week.

Elle actually made it to school 5 days this week!!!!!!!!!! The above picture is of Elle after her hair cut....3 inches!!!

I am not even sure where this week has gone. Picking up formula at Deer Lodge, picking up meds, cleaning, feeding, administering meds...blah blah blah.....and here we are Friday!! Oh! We had visitors this week!! Sarah and her new baby (3 weeks old). She is a friend and she cuts/colors literally my whole family. Charlie was absolutely adorable and so tiny! Today we had a friend that I use to work with and her two cute little girls and Kristen and her two cuties also!! For those of you who don't know Kristen I came across her blog about her beautiful little girl Georgia. I never got a chance to meet Georgia but look forward to hearing more stories about her and getting to know Kristen more!!! If anyone would like to read their story you can go to my profile and click on Georgia's blog....amazingly written and AMAZING parents. I am envious about how honest she can be about her feelings.

A side from all that our stroller is in!!! FREEDOM!!!!! It will hold both kids and I will be able to go for walks and maybe even the mall on my own if I needed.

Tomorrow is our night out! Our only night out for the summer!! How pathetic is that. The nursing we have is only able to offer this Saturday and during the week. So, I guess we will be sitting around the fire in the backyard all summer.....who knows maybe things will work out and we will get more nights out.....haha.....

SLEEPY!!!!!!!!!!!!!!!!!!

Well, after over a week of Elle and Kaden being sick Elle is recovered and Kaden is still struggling to feel better. He has kept us busy during the night. He has graciously allowed us to sleep for 3-4 hours a night (not in a row). He is waking himself up coughing and choking. Then he can't go back to sleep and finally works himself into a fever......THEN, he gets Tylenol and a diaper change and then.................well then we could quite possibly wait for hours till he decides to go to sleep. His sat monitor rings off in the night 20+ times due to oxygen going down or elevated heart rate.....Today he had his nurse here and he was so tired that he literally slept all day. That makes me nervous we are going to be up all night again. We are increasing his one puffer and see if that stops the coughing in the night. If he is not better by Thursday I have to take him in to have his chest reassessed. He may need some Prednisone to get him over this. Other than that his blood work from last week was good.

That's it for now I am going to go get Kadens feed started in hopes that we can all sleep tonight. Paul is sleeping downstairs tonight so 50% of us are going to have a nice sleep at least!!!!

Kiddies recovering....

Since last writing Kaden has gotten sick. He is coughing and when you listen to his chest there are some wheezes and crackles. Nothing major though. We had him to the Pediatrician on Monday and she gave us some Ventolin and Flovent (puffers) and he has been getting them and so far so good. He is still smiling and playing so that is always a good sign!!! He is needing a small amount of oxygen while awake and sleeping. Last night he decided it would be fun to cough himself awake at 3am and then continue to stay up till 8:30am.....of course then he gets himself worked up that he can't fall asleep and then he becomes fevered....so I gave him some Tylenol to calm him and not even that was going to make him sleep!!!!!! Anyway, that was the third night of him having brutal sleeps so I hope that tonight we can all sleep till at least 6am....guess we will see what he has planned for us!!!

Elle, she finished her antibiotics and was back at school today. She looked so cute coming off the bus today. She greeted us with a big smile and a little giggle. She is just so cute. She will not be at school tomorrow as her class is going to the Forks for the Children's Festival and I think its suppose to rain and being outside for that many hours may be too much for her as she is still coughing and not a 100%...

Off to the Pediatrician!!!

Elle woke up today with a drippy nose, fever and very tired. She is needing alittle oxygen while napping this evening. May just be due to the stuffed nose. Paul and I took her to the doctor this afternoon and her chest has some very faint crackles in the left lung. The left lung is her bad lung of which always gets affected first. So, we are starting her on antibiotics in hopes that we are not going to have to make a trip to emerg. Yes, once again a nice weekend and we are indoors with a sick child......

Kaden is being sooooo cute today. Blowing his little bubbles and looking around.....He's probably happy that his sister is sleeping and then he gets more attention.....

Well, we shall see how the weekend plays out. Paul is off to Toronto Monday and will be back sometime Tuesday.

Lots of saliva.....

Elle woke up at 11 this morning and all day has seemed to be struggling with her saliva....kinda coughing/choking and more tired than normal. We are watching her carefully to make sure she is not getting another cold....why does this kinda stuff always happen on a weekend?? Especially on a nice one....hoping that this is just a weird day and she will be better tomorrow. Guess we are staying home tomorrow.

Kaden has been good. He only started smacking his lips late this evening. Not sure what that means. We have decreased his Phenobarb AGAIN. So bizarre how he came home on 35mg x3 and he is now down to 22.5 x2 & 25 x1.....and he is still high!!! We also now have a confirmed schedule for his nursing till the end of August! That makes it so much nicer to plan things.

No big plans for the weekend especially if Elle is sick. I may go get my flowers depending on her.

Sunny day.....

Not alot new. Kaden had some more blood work today. His Phenobarb level is 46 and his blood ketones are 7.8 (4 being good). He was kinda sleepy today and smacking his little lips. Around 4pm he seemed to kinda come around and now he is sleeping again.

Elle, she was at school today. She had two gym classes. One was Grade 1 and the other was her 'Special' gym along with a whole bunch of other things. They took the bus home for the first time in months. OH!! She was also outside on the play structure they have at school for kids in wheelchairs!!! Of course she was loving that!!! Elle will be missing school Thursday and Friday cause her nurse is not available.

They are both sleeping and Paul is out for dinner for work so I guess I will clean up alittle before playtime with my kiddies!!!!

Worn out....

Going on 7 days without help....I am starting to feel tired. This house is just non-stop stuff all day long. If its not a med its a feed or a diaper change and on and on......I have the first feed starting at 6am and I literally don't stop moving till after 11pm every night....We are suppose to have a nurse for Kaden and HCA for Elle every second Saturday night but turns out Elle is the only one that will be having someone this Saturday. Its the girls second time being here so we will be going nowhere. It takes me a LONG time to feel comfortable about leaving her with someone new. Especially about feeling confident that this new person would be able to resuscitate her should she have a seizure.....Much to Pauls dismay we will be cleaning up the basement as our hardwoods will be coming in the next few weeks (for the main floor) and if I have to spend a bunch of time down there I'd like to be able to find my way to the couch!!!!!

The worst part about being 'trapped' (Paul hates when I say that)at home is that even if I wanted to get out I can't on my own. Elle has to be in her wheelchair/stroller when we go somewhere and Kaden is a baby so how is a person suppose to get out??????? OH!! That's right I don't....I am hoping that this is not a taste of what its going to be like in the summer. From what we are told our 'help' is cut off for the summer. I think the exact words were..."normal children don't have help in the summer so why should we?!" I hate how they try to lump us into the same category of 'normal' so they can save a few bucks....as they all go home to their 'normal' lives and quite frankly have NO CLUE. Our world does not allow us to meet people in a regular way. We don't go on play dates ( not that we can't I just don't think I truly fit into 'normal' and am worthy to attend) I think when you have children (correct me if I am wrong) you meet friends through your children and if a child is wanting a play date with a friend from school it surely isn't going to be with the little girl that can't walk or talk......sad but true....A really good book to read to totally see what its like to be in our shoes is "A DIFFERENT KIND OF PERFECT". I read it over and over. I love this book cause it makes you feel like your not alone.

We had a couple of people here today measuring for a wheelchair lift for the backyard. We have to take out our existing deck, build a new deck level with the patio doors, put in new doors (ones that lock from the outside). I truly hate anything to do with medical looking stuff....HATE IT!! I also hate the wheelchair and refuse to use it. We have a stroller type thing and that's what I use. The only time you'll see me pushing that thing is at school....

New Tricks!!!!

Kaden is practicing a new skill!!!! He seems in the last couple days to be stronger in his core area and yesterday and today has done very well sitting!!! Yahoooooo!!!!! He looks so cute and so grown up sitting....Don't get me wrong he is by no means sitting for long stretches but 30 seconds to us is wonderful and a sign he is getting stronger. He has had some good days being quite interactive and smiling and 'talking'.

Elle is good too...she made it to school 4 days last week. I had thought that this week was going to be the same but her nurse has been ill so she may get there only one or two days this week.....:( Anyways she came out with me yesterday shopping and today we had to go get some stuff for Paul so she came along. She totally loves riding in the van. She looks out the window smiling all the way. So cute how she has her hands in her lap looking out the window. She loves going out...

Anyways, we didn't do much for the long weekend just hung out. This weekend we may have someone to watch both kids so we can go out!!!!! (nurse for Kaden and HCA for Elle) Still waiting for confirmation on that....

Well, we have not dropped off the face of the earth. Elle's cold didn't amount to much but did miss some school again....she is much better now and hope that she can get back to school and not catch anything else. She managed to go for three days this week so that is good. She did not go Thursday or today due to some issues we have been having in regards to a doctors order to not have her monitored at school while sleeping. We only found this out on Wednesday but apparently everyone else knew about it but us......needless to say we are NOT IMPRESSED. We are upset being the last to know of such a decision without us being consulted. We are the parents and people seem to be forgetting that. We are caring for her and all we want is for her to be safe. Anyways after a short conversation with a couple people she will be returning to school with her monitor for the time being while we sort this mess out. I tell ya its just one fight after another and it sure is frustrating. Sure is sad how we have to fight for every little thing.

Kaden, he is doing well. We have taken him a couple time to get blood levels and we have changed his Phenobarb dose a couple of times. It has come down alittle so that's good. We will wait till Monday to see if the Neurologist wants another decrease. Other than that he is happy, rolling, hanging in his jolly jumper and we are working to get him sitting on his own.....

We have our first 'night out' Saturday night!!!!!!!!!!!!!!! We have not gone out in over nine months.....What do people do on a 'night out'.....

Could Elle be getting sick AGAIN!!??????

Seriously.....I am hoping that Elle is not getting sick again.....She is coughing a bit and she sounds like she is getting congested....I think we are making a trip to the Doctor tomorrow. She is not on oxygen at the moment but we will see how the night goes.

Kaden is snuggled in his bed sleeping and having his feed.

Mom, Dad and I finished up the painting that we had left to do in the house. AHHHH....done. Or until I find something else to paint...I love painting!!!!! Anyways looks good and now we are ready for the hardwoods/carpet.....YIPEE!!!!!

My Daddy is out of town......:(

Paul left for Atlanta, Georgia yesterday afternoon. He will be gone till next Wednesday. So, Nana is staying with us!!

Kaden had a Neurology appointment yesterday and everything is going well. We will take him for a blood level on Monday and then go from there if anymore changes need to be made. He is rolling like crazy. He can roll from his back to his tummy and then back to his back. He seems to be getting stronger. He has also been spending alot of time in the Jolly Jumper and can be quite cute in there. He had one of his new nurses start yesterday. She is actually from the hospital and has taken care of both him and Elle. There is also one other that has agreed to do some respite for us from the hospital so we are absolutely thrilled to have them. The thing I like the most is that I barely have to orientate them and I can go get groceries, mall, hair cut ect. pretty much the next time they come......otherwise if its someone new I have a hard time trusting them and I lurk around for months until I feel comfortable leaving them alone.....Kaden had a little problem with his monitor (we hook him up to a sat monitor that measures the o2 in his blood and his heart rate when he is sleeping. That is how we tell if he is having a seizure.) Anyways I hooked him up to is this afternoon for his nap and it wouldn't work!!! So long story short I had to send my sister all the way to Morden to pick up a new one otherwise we were only going to get the new one tomorrow!!!!!!!!!!!!!! Ummmm, that would have meant that I would have (and Nana) had to stay awake all night watching him sleep making sure he was not having a seizure!!! So now we have a nice brand new monitor and its much smaller!!!! YEAH!!!!

Elle went to school today for the first time in about 5 weeks!! She was awake by 8:30 and off to school by 10:30 and never slept at all during school!!! We are planning to send her tomorrow too if all works out. Next week she will go but not everyday as we are nervous she will get sick again......She will also be going for a repeat blood work on Monday to check her white blood cells, red blood cells, hemoglobin and platelets......they seem to be coming up so that is a positive.
She is also having a Healthcare Aide come on Saturday (5-11pm) for her first shift with Elle. Needless to say I will NOT be going out anywhere especially when its a Healthcare Aide.....I could go on and on about how I hate how people think they can make the decision about what is best for Elle (and Kaden for that matter) but I don't think anyone really wants to hear it....

Still waiting....

For some reason Elle's blood test results are taking forever.....I called yesterday and this morning and they are still not at the doctors office.....although they may be on the Pediatricians desk waiting for her to see them.....I hate waiting for that kinda stuff.....maybe I will be lucky and she will call tonight.....Otherwise Elle is doing okay. She is still kinda tired but is starting to be able to sit up and play more. Always full of smiles though!!!

Kaden is quite happy!! He is vocalizing alot in the last couple of days and he sound so incredibly cute.....and he knows it.....as he 'talks' and them gives a big smile.....he is rolling over onto his stomach alot....he is self taught....a week ago he was trying, trying trying and then.....over!!!!! Kaden is also off oxygen while awake since the cold he had so that is much more convenient...

Paul and I are in the midst of choosing flooring....we have the hardwood picked out but now the dilemma is carpet....why are there so many kinds, colors, textures.....anyways I have called in someone who knows what they are doing so I hope she will be able to drop by tomorrow so I can get this done and ordered......before Paul changes his mind......

Easter......

Well this has been the strangest Easter ever....Friday was suppose to be dinner at my mom and dads but mom thought she may have a cold so she stayed home and dad brought dinner over here with Lori and her friend Jackie.....then this morning Elle woke up a little on the warm side so Elle, Kaden and I stayed home while Paul went to his families for dinner.....

Elle had a blood test this week to check on her white cells, red cells, hemoglobin, and platelets and turns out that not a lot has changed. Her white cells were 3.8 coming home but this week they were something like 2.5. The rest are still on the low side but she tends to be normally on the low side....anyways the fact that her white cells are very low makes her very sensitive to infection and not able to fight off sickness......so, once again we are missing out on things in order to keep her as healthy as possible....we just never seem to get a break! Besides all that her lungs are much better and her breathing is back to normal. Elle will go back for repeat blood work on Wednesday. Should her blood work be worse she may have to have her bone marrow tested....for what I don't know and right now I don't want to know......she has had that procedure done once before when she was a baby. They do it under conscious sedation so that is a relief if it needs to be done.

Kaden, he was grumpy today!! I hope that tomorrow is a better day for him....

Still very weak.....

Elle is doing okay. She continues to be very pale. Her hands seem to shake a bit I think this must be due to her being quite weak still. She is still having alot of naps and does not like to be sitting up for long periods of time. Other than that she is full of smiles and laughter.....

Kaden had a brutal night last night coughing fits one after another.....he really only settled at around 6am and then slept till 11:30ish....as the day went along he was happier. He does not do well if he has not had a good night sleep. I think he is also teething. I spotted a couple of molars on the bottom coming in.....other than that for him he is also happy and smiling and blowing bubbles like crazy!

We have not done alot this weekend as we have to be a bit cautious with Elle as her last blood work still showed low white cells so we are not wanting to expose her to too many people and germs.....that last thing she needs it to get sick again...

Our girl is home!!!

Elle got home this afternoon. She was in desperate need of a bath since she had not had a bath in almost two weeks.....YUK!!!!!! Her IV site was stinky from being taped up and her hair was oily....she really was a mess. After a nice bath this afternoon she snuggled in for a nap...She is still sounding like she needs a HUGE cough to clear her chest but still has beautiful smiles. She is snuggling with her daddy right now getting her chest physio and will probably fall asleep. Hope that she can get her rest and recover more now that she is at home.

Paul has four more days of holidays so I hope we can just relax and enjoy the rest of the time.....

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.....