Not much new.....

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



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

Happy Birthday Beautiful Girl!!!!

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

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

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

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

Its a party!!!!!!!

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

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

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

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.......