Brrrrrrr........its cold here!!!!!!

Here is Elle playing with her toys and watching over her brother.

The above picture is of Kaden playing with his blanket....he love pulling it over his face...so cute...

Elle had her ultrasound yesterday. Her doctor called this week and said the results from her nuclear scan showed no scaring and that if this ultrasound showed nothing then I guess we are not going to be worried about 'reflux'!!!!! Yeah!!!! She did awesome at the ultrasound smiling away. Minor compared to what other people have done to her.

Kaden has been doing well. He went for a Phenobarb blood level yesterday and it came back at 54.4 which is higher than last week.....we even decreased his dose.....we are puzzled by this. We will wait till Monday when his Neurologist comes back and see what she has to say. He is very busy getting teeth so he is drooling like crazy....making LOTS of 'talking' sounds. He is also talking in his sleep.....crazy kid!! He is getting stronger and stronger every day. He has his Physio/OT tomorrow afternoon so I hope he will be awake for that.....

Nuclear injections.....

Elle had her appointment at Nuclear Medicine today. She had to get an injection of a nuclear substance except the first one she moved her arm so in turn she had to have another one to make sure that she got enough. She cried for both and was not happy about it but quickly recovered.....It was a LONG day as we left the house at 10:30am and didn't get back till 4:30pm. There was a few hours in between the injection and the scan so we headed to the mall for lunch and to look around. Elle had her nurse with her and Auntie Lori came along for the ride....Auntie Lori was thrilled when she found out we were going to the mall.....her favorite past time.....NOT!!!!! Anyways she had the scan and we will not have results till maybe next week. After her ultrasound next Wednesday I will give her Pediatrician a call to remind her we are done all the tests and then she will call for the results.

12 month needles.....

Today Kaden got his 12 month needles.....3 to be exact....he was not impressed. Soon after he was smiling. Last week he also had a Phenobarb blood level which came back at 51 so he had his evening dose decreased and we will take him again on Thursday. His blood ketone level was 5.8 which is VERY good. An acceptable level is 4. His Pediatrician decided that we will not take blood ketones at home. Instead we will have the level done when we get a phenobarb level.

This weekend Kaden got his first hair cut!!!!! He looks soooo cute!!!! Still sticks up but who wants to look like everyone else.....

Thursday Elle has her appointment at Nuclear Medicine for a scan. That is going to be an all day event as she gets a 'poke' at 11 and then the scan isn't till 3pm. We may just have to go to the mall for a bit!!!!!

Nana came tonight and we walked Elle on the treadmill....she was tired but did alright.

Worried about Elle.......

Like Elle hasn't gone through enough she is now undergoing tests due to her having E.Coli bacteria in her blood.....She has had a repeat urine test which has now come back showing that there is still bacteria in it but no puss. Last week she was at Nuclear Medicine having a VCUG which now shows she is having reflux between her bladder and kidneys......NOW because of that she is going for another test at Nuclear Med. to further investigate whether or not this is concerning......and she will also be having an Ultrasound of the kidneys/bladder. Should any of these test come back showing scaring she will be put on prophylactic antibiotics once a day. She will also be sent to a Urologist to consult as to where this is going.....could go as far as surgery to correct this possible problem. Nothing is saying for sure that is what is going on but we are doing all necessary testing to confirm where we are with this......poor girl just can't get a break......We also thought today that she may be getting a cold but she was happy and playful tonight so I think we are okay in that department. If she gets another sickness I am going to loose my mind......ENOUGH IS ENOUGH!!!!!! Grandpa Remillard has been taking Elle to school this week and picking her up as the buses were cancelled and it just nicer for her to be able to sleep in. Tomorrow Nana is going to take her. She has Friday off so she is going to have a 4 day weekend......Tried to convince Paul to take Friday off but that didn't go so well.....meeting already in the works I guess.....

Kaden, he woke up a bit cranky but once he got the sleep he needed he was good to go. I took him for his Phenobarb level, CBC, and blood ketone level so I will call sometime tomorrow to get results.....Thursday he will go for his monthly RSV shot. Other than that we are all good here.

Well, tomorrow Kaden has a nurse so I will be back in the basement trying to finish cleaning up that mess......what a painful process that is.......

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.....