Tuesday, 5 June 2012

May 9th- June 5th

May 9th-June 5th Update!

Over the last month we have had lots going on.

It started with seizures. On May 9th I got a call at school that Addison was having seizures and it ended with me leaving in a hurry and an ambulance drive to the IWK before they could get the seizures stopped. It was not a pleasant experience but it has happened once a month so it was all very familiar. Standing in the trauma room in the ER watching your little girl seize with people everywhere doing all kinds of stuff to her is nothing less then traumatic but we just stand back and know that it is best we don't get in the way. Once they finally get her seizure stopped we don't leave her side. This time they had to give her a drug called phenobarb to get it under control, she had that in the NICU. The sad part of the whole experience was that the ambulance that came to the house had two paramedics and neither of them could give medication so we had to drive as far as Preston and another ambulance was waiting for us and a paramedic that could give meds jumped in with us. The meds didn't stop the seizure but not very comforting that it took that long to even try. We were admitted but got to go home the next day because she wasn't having any more seizures. They have no idea why she has a bad one a month and said it isn't typical but just seem to leave it at that. I guess they don't have to deal with the stress of it so why problem solve. We did put her keepra up to 5 mls twice a day instead of 4. 

Her Infantile Spasm seizures got worse and we had to increase her medication to 15 mls twice a day. 

She started having different seizures. This time she gets very stiff, cries a bit throughout them and does the odd twitch. I have yet to get an answer about what kind they are or what we are going to do about them. She had three last week and one this week so we will see what they say when our doctor gets back. The ketogenic diet doesn`t seem to be doing much for us so we might just get rid of that. It isn`t work the hassle if it`s not working. 

Addison is up to 5 oz at a time for her feeding's which is a huge milestone for us! I hope to move her to 6 oz next week and if it works we are done with the pump and overnight feeding!! Right now she is getting 4 oz at night. I am trying not to get too excited to sleep without being woke up by that thing beeping. 

We are settled into our new apartment and the house is moving very fast! Insulation was supposed to be finished today...which means this weekend Tyler might actually be home with with us!!!
We are getting spoiled living next to Helen and Leo though! 

I only have 16 more work days left until summer vacation! Jobs are looking scarce but it is all about a seniority number so I am trying not to think to much about it!

It is baby shower season. Addison and I have been to three so far and have two more on our list! So fun seeing all the cute baby stuff. 

Addison got her new stander which she is supposed to be in a minimum of 1 hour a day but not all at one time. She can be in it longer if she wants too! She seems to like it if in a good mood. It does make her tone in her arms but at least it is good for her legs!

She got her new lazy boy chair! I love it!

Pregnancy is going good right now! I am gaining lots of weight and baby is very big. They are keeping an eye on that to make sure he doesn`t get too big. I had to have an extra diabetes test done but I passed it thank god. 

Addison still doesn`t sleep. She does good to get 5 or 6 hours broken up with a few naps during the day. We tried chloralhydrate for a week straight but that did nothing so we stopped giving it to her. No one seems to be helping us with this problem. The last I was told was maybe this was just going to be this way. 

Addison laughs when you tickle her if she is in a good mood. 

Addison loves to be outside. Almost always when she is fussing if you take her outside she will stop. I am not sure why but whatever works...just hard when it is cold, rainy and night time(can`t handle June bugs). 

Auntie Debbie is going to have her baby very soon and we are excited to meet baby Charlotte!

Me and my girl

Addi and her big bro!

The drive to the Nutby cottage while it was still quiet.

Cool dude

Look at the toes

What a happy girl!!

Ava loves to give Addi cuddles

Playing with the fish on the Ipad

Nap on the deck at Auntie Debbie`s

First swim of the year

We were out at yard sales and she got heavy so I bought this for 3 dollars I was impressed with how well it supported her.

SO cute

Night time movie!

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