Regarding the previous video

for some reason its not playing to whole video.....im working on it....my computer skills are limited...haha....it seems to be missing over half of it.....ugh.....bare with me....

Our handsome little guy...... at OneTrueMedia.com

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6 weeks today.....

Well where has time gone? I still think we are is total shock that Kaden is gone....shock or is it that we don't wanna accept that we are no longer able to hold, cuddle, kiss, dress, bath, feed and the list goes on and on and on......I have not touched a single thing in his room. Everything is as I left it the day I took him to emerg for the last time. I thought the other day that Id be able to unpack the last bag I packed for him to head to the hospital....well....first I pulled out his med/feed schedule and then there it was....his last pair of sleepers he ever wore...well that ended that I quickly folded them up and placed them back in the bag and slid the bag under the highchair. There it sits and there I sit wondering when and if and how I'm going to be able to unpack that bag.....I cant wash his clothes that are in the hamper or even throw out the syringe that lays on his crib.....all things that in time. I'm sure ill be able to do it but I'm nowhere near ready to deal with that......some people may think 'whats the big deal?' but all I have to say to that is if you haven't been there you really have no idea......losing a child is something u cant even begin to understand unless you've been there.....and its bad enough that we have had to watch other people with their healthy children doing their thing and feeling like I'm in some weird club that I'm the only member to but now we have to be apart of this new group of 'losing a child'.....how unfair is life really? I guess really unfair as Paul and I are living proof of that.....



Elle is doing much better ....she has battled her fair share of illness in the last 6 months or more. She just got out of hospital a week ago and is doing great so far....unfortunately I had to take her into emerg on the anniversary of Kadens death so dealing with that and being in the same room in emerg as Kaden was that last time and having nurses and doctors saying their condolences cause they had just heard was very hard. Thankfully one of the docs that had been taking care of Kaden in some of his last days was on so she was so kind as to speed us through without all the questions that are normally answered......i am soooo grateful to her for that....so so grateful.....so anyways Elle is doing great...smiling, off oxygen and so insanely cute that I just wanna kiss her all day....and sometime I do because I need to enjoy every moment I have with her cause life is just so uncertain.

Still in the hospital!!!!!!!

Ok i have been ignoring this blog for about two months...sorry!!!!!!!!!! I did have full intentions of keeping up with this thing and had even wrote down a bunch of stuff and then upon getting home truly didn't feel like rehashing all the events....soooo....here i go....



Elle...she is doing well these days...she is in the monitored room at Children's Hospital. Her events over the last two months are as follows...



She got a very bad pneumonia which landed her in hospital. She under went sum treatments to help her breathing..was put on steroids and after about a week was ok to come home. The steroids however caused her to not sleep for over 4 days. Upon bringing her home she was still not sleeping and after being home for two days she started having seizures. The night of her seizures she was very uncomfortable and we honestly thought that she was going to die. She stopped breathing many times and Paul and I both had to resuscitate her before the ambulance arrived...she continued to seizure while they were there and she actually had to be resuscitated all the way to the hospital....very scary for everyone....she was placed in ICU. She was watched for a few days then transferred to the monitored room on the ward. They then hooked her up to an EEG and that is where we discovered she was having massive amounts of sub-clinical seizures that we were not able to see. She was whisked up to ICU and they then started the process of placing her into a medical induced coma....that was a long process to get her where they wanted her to be as far as being in a coma. She eventually got there and then we discovered that she was kinda put under too far so that made coming outta the coma take longer!! While in the coma she needed to be put on the ventilator because she would not be able to breath on her own..once she woke up (which took at least 2 weeks) she was able to come off the ventilator and then took a good couple weeks to get her to be more alert....she is now doing better and everyday she gets stronger and stronger....she is still having seizure activity in her brain but it seems to be localized for now and not spreading and making any clinical seizures that we can see...she is not at her normal baseline yet (50% maybe) but we are hoping that she will continue to get better everyday...she is smiling and using her hands more which is huge..her head control is coming along but she has not been able to sit up on her own for about 2 months now.



Kaden....



Oh my gosh where do i begin...he has been sick sick sick too......he started out with a cold that turned to pneumonia that then landed him in emergency...he was so sick that he landed in ICU on a bi pap machine to help him breath...he was there for about a week then got sent to the monitored room on the ward....he was then transferred up to a different ward as he was doing very well...that Sunday i was coming to the hospital to tell them we wanted to break him free from prison..(haha I call this place prison..i wonder why... :)) BUT...as luck would have it our lil guy who has been seizure free for about 15 months....started having them too!!!!!!!!!!!!! Well he was then taken to ICU where he too was hooked to an EEG only to discover that he was having massive amounts of sub-clinical seizured too!!! By this time I think we had totally lost our minds...Kaden was then placed into a medically induced coma... the plan was to not put him under as much as Elle was and he had a different plan...he may have been even more under in the end...he was on the ventilator for 27 days and I thought that tube was never going to come out!!!!!!!!!! He had various issue while in his coma. He retained massive amounts of fluid on his body and had to be put on lasix to try and get if off his body. He stopped peeing and at one point we were thinking he may have to be put on dialysis!! Anyways over night that night he lost huge amounts of fluid off his body and he lost 6cm off his lil (well big) belly....he was also having sum problems with his blood pressure. He had many IV lines in (same with Elle) and unfortunately his port a cath got very infected and they had to take it out. He became septic (infection in his blood) as a result of that he is now loosing his hair!!!!!!! AAAAHHHHHH NOT THE HAIR!!!!!!!! ya so now Im in mourning with the loss of his fabulous head of hair....



As of today they are both in the same room in the monitored room on the ward...now isn't that cozy!!?? well it is kinda but only because we kinda consider it our second home away from home ... how sad is that??



Elle continues to require alot of suctioning as her cough is very weak still but I'm hoping that will improve in the near future...as for school...and respite those are all things that we are going to have to revisit as what we have at this time is not acceptable in our eyes...



Kaden had a few small seizures the other day but seems at this point to be doing well...smiling and cooing and looking handsome.....



The biggest news right now is that Paul has a trip planned for the 24th to head to San Diego and we have decided that I should go too!!!!!!!!!!!!!!!!!!!YIPEEEEEE!!!!!! So Elle and Kaden will be surrounded in people who love them while we are gone...so we feel that its a safe time for us to go away.....



This may be one big lump of info but if it doesn't make sense to anyone please ask we would be more than happy to answer any questions....



Id also just like to thank a few people as making phone calls can be abit hard when we are at the hospital alot. Thanks to Lorraine and Glen for all the many suppers u have sent over, Thelma for what you sent over, Priscilla and Jack for the book and the visit to the hospital, Angie and family for the sweet notes and gifts for the kiddies, and Shawn and Angie for having us over for dinner.
Joy and Larry for bringing supper to the hospital....Darren for the many hours spent at the hospital with us and everyone else that has taken time outta their busy lives to visit us at the hospital.


A very special thank you to our family members for all the many many hours of support to Paul and I and more importantly our kids....The grandparents and our siblings have been there for us in sooo many ways we cant even begin to repay you for all your efforts....you know who you are and we don't know what we would do without you all....The past two months have been truly one of the worst times in our lives with many new adventures and new people brought into our lives that we never expected to meet. Its been hard to face some of the new things and think about some things we never wanted to face. We love you all very much and thank you again!!!

Ill have to post some pictures when i get home tonight....

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....