Saturday....

Have not done a whole lot today. Cleaning, playing with the kiddies, mom and dad came over and dad and Paul took some stuff to the dump. Paul is out at Safeway.....we are quite boring today!!!! Elle is doing well. Kaden is doing well also! Elle got her new button (feed tube) put in yesterday and Kaden had new heparin put into his port-a-cath. They both cried for their procedures but were back smiling five minutes later.....they have such strength.....they are amazing......We are going to my parents for brunch tomorrow and then who knows what the rest of the day will bring. As for tonight Paul wants some chocolate chip cookies so I guess I know what I will be doing tonight.....fun Saturday night!!!!!!

Appointments, appointments, and more appointments......

Will these appointments ever stop???????

Monday......only day of nothing....

Tuesday.....VCUG (voiding cysto-urethrogram) at the hospital up at Nuclear Medicine.....they filled her little belly with fluid and some nuclear substance and scanned her for maybe ten minutes watching to make sure her kidneys and bladder were not refluxing then we had to wait till she voided....they put about 450 ml into her belly.....needless to say her tummy was looking VERY full. All went well she voided and we were off!! We don't have any results yet.

Wednesday.....my mom/sister and I cleaned (rather made a dint) in the basements. What a daunting job. I went through 6 years of Elle's clothing.....keeping my memories of her and a give away pile....if I had my choice I would just build another house to store all that stuff. Sadly when I try to think of what she was like when she was a baby I feel like I have forgotten......

Wednesday Night & Thursday......all four of us had a sleepover at the hospital!!!! WOOHOO!!!! Both kiddies had sleep studies done. We got to the hospital around 8:30ish then they were hooked up to electrodes (MANY) on their heads, legs, chest, belts around their chest to measure breathing or lack of, toe probes for oxygen saturation, oxygen prongs (Kaden only) another type of prongs below the nose to measure CO2......Poor Kaden hardly had any empty facial skin left exposed. Elle woke up at 3:30am for about an hour then fell back asleep, Kaden was stirring at the same time but didn't wake up. They took a cap gas (finger poke) at 5:30am then they removed all the stuff and were were back home this morning by 7:30am. Kaden still sleeping and Elle fell back asleep while driving.....Elle was awake by 9am and off to school by 10:30 and surprisingly she had a fairly decent day!!

Friday......We have to take Kaden for a weight in at Children's Rehab as his ketones are non existant and he may have gained so much weight that his ratio is now off......then, from there we are off to the hospital to get his Port-a Cath heparinized (has to be done once a month) and Elle is getting a new button (feed tube) put in, and then, we have to go up to the homecare office to pick up Kaden's spare feed tube.......THEN.....we can go home and clean up the house!!!!!!

The weekend.......I love the weekend......NO APPOINTMENTS!!!!!!!!

So far next week Kaden only has one appointments....we will see how long that lasts.....

Back to school !!!

Elle was at school today full of energy. She was in her stander for over 30 minutes, reading with friends, making a ground hog, reading about a ground hog and it goes on and on....they were busy today. She only slept at school today for an hour!! She was also on the treadmill tonight walking and did quite well. Took some steps herself. She was also standing supported tonight very well. She was very steady and not moving back and fourth like she usually does. So proud of her!!

Kaden had a nice day. We stayed home all day. It was nice to have the whole house to ourselves...... We usually have someone in here during daytime hours and when I have the house to myself it just seems so peaceful......I love it!!!! Kaden spent some time in the exersaucer and practicing sitting. He is better and better with his head control. He was having some trouble with keeping his last feed down so hope he does okay with his last feed tonight.

Well, off to finish the days work.....never ends till at least 10:45pm.......wonder if there will ever be a day where we can sleep in.....

Doing better!

Elle has now had three doses of antibiotics and is doing great!! She is still coughing but is otherwise happy, playing and had a good day. No fever which is nice. She will be done her antibiotics tomorrow and hope that she can return to school on Monday.

Kaden is his usual happy self. He enjoyed a trip to Costco and behaved like my perfect little guy this morning. He will have Physio/OT come tomorrow for his first appointment. Whether he will be awake or not should be interesting. He sleeps whenever he darn well feels like it!!! Oh well, tomorrow won't be much other than assessing and talking about him I am sure. He is getting better head control and is starting to spend more time in the exersaucer. Paul had him rolling last night and then after that little 'session' all he wanted to do was roll.....too cute!!

I think we are going to have a nurse on Saturday during the day so then Paul can use that time to get some of his work done so he can then hangout with us in the evening without feeling like he should be working. I will use that time to play with Kaden and maybe go through a closet or two....fun times!!!

Sick.....

Just a quick note.....Elle has been taken to Children's Emerg. (Paul and his dad) as she is now sick with some kinda chest thing....AGAIN!!!!!!! I don't know how much a little girl like her can take....too many sicknesses. She has been sick/hospitalized in Sept,Oct,Nov,Dec,Jan and now we are almost into Feb.......Now she won't be going to school tomorrow and she loves being there so much with all her little friends. No word from Paul yet on her status so I will just wait to hear and hope she will be coming home tonight.

Kaden had a nice day. He had his blood work (Phenobarb blood level) but I forgot when I got home to call Neurology to get the results so I will do that in the morning. Kaden has his new nurse starting tomorrow. I will not lie I am not going to be able to give him up. I will have to find something to keep me busy cause I love playing with him and caring for him.....he was suppose to be all mine.....I never wanted to share....:( Eventually it will be a good break for me to get things done around here so that on the days he is all mine we can spend good time together......

Well I am off to clean up a little before I get too tired and don't want to do anything.....

Monday.....nothing new.....

Elle enjoyed some playtime at her 'desk' on the weekend. She played in the sun with her toys while busy smiling away!! She felt a bit warm on Saturday and was vibrating due to needing some oral stimulation but eventually calmed down.

Kaden also had a nice weekend. He spent some time in his exersaucer which we are going to try and put him in there more as its good for him to strengthen his head and try and get him to push with his legs.....when we hold him up he won't push but while he is on the floor he can spin himself totally around....go figure.....

It was my birthday this weekend so we were at my parents for dinner on Saturday. I am not a fan of birthdays (mine anyways) so it was low key.....

We had our home assessment and our garage is too small to put a lift in and so our new plan is for us to have a lift put in the back that goes onto our deck and she will then come in through the kitchen. That being said we are going to have to take the deck out redesign that, landscape and we will also have to replace the patio doors with garden doors....doors that we can lock from the outside........there is going to be a huge amount of shoveling involved....deck, all the way around the house to the garage and down the driveway......this plan does not thrill me at all.....we aren't liking the fact that in the rain,snow, and any other weather craziness we are going to have to take Elle all the way around the house just to get her into the van.......not fun......for now it will have to do.

Well, we are starting the week with just one appointment so it should be a great week....positive thought!!!!!! As I type this I am looking at the above picture.....what an adorable little face!!! (both of them) it makes my heart smile.......

More appointments......

Today Kaden had his Neurology appointment. Follow up to being in the hospital. Went well. Neurologist was just making sure that he is doing okay, blood level is remaining steady and no seizures. He will go for another level next week and then we may be able to go for levels every few weeks instead of every week. We got our call today about Kadens Physiotherapy so that will be starting next week. They come to the house so that is nice then I don't have to take him out and its something I can do on my own.

Elle went to school today. She has not been there very much since her GI Virus (end of November) so all the kids get very excited when she does go. She also had a follow up with her Pediatrician regarding her ear drum....its all cleared up and the other ear was full of wax so we need to keep working on that to clear that out....her requisition were also sent for her ultrasound and another test (can't remember what it is thought) We are also doing a urine test Friday morning just to double check things in regards to her E. Coli bacteria in her blood.

Tomorrow is the home assessment so we will see how that goes!!!