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.....