Monday, 23 April 2012

Sleep...really what is that???

You know...I feel kind of weird right now.....
Why you ask, let me tell you.

In the early hours of the morning watching her movie

  • Addison is sound asleep and has been since 7:15(which never happens so I can actually do this). Most people are saying why the hell am I not going to bed but you see Addison needs her feeding at 8:00, meds at 8:30, then we have to make her formula and she goes on the pump at 9:00 and then we can think about going to bed....that is in an ideal world that she is still asleep. I am hopeful that tonight is a new night and she will be but who knows if I am just being overly optimistic!
  • I am super over tired as we have had three hours on average a night for over a week.
  • We have very few nights left here in West Jeddore.
  • We are moving into a basement apartment in Porters Lake which is beside Tylers parents and is great but during the day while I am at work I will be 30 minutes away from Addison:(
  • Everyone is stressed about jobs and who knows what position I will get for next year but the strange thing is that at one point in time this would be stressful for me but now it really seems insignificant. Yes I need a job...but it is out of my control. I am a seniority number on a piece of paper and what is meant for me I will have. Luckily, I will be off on mat leave next year and just need my name next to a position as I wont be going. 
  • I am 20.5 weeks pregnant, feeling good..tired but for other reasons and so excited to be having a boy. 

So the last two weeks have been a bit of a blur. We have packed pretty much the whole house and moved it. Addison has gone from being a terrible sleeper to being a non-sleeper. We have spent the last few nights getting up at midnight and staying up. If we are lucky we get an hours sleep in between but have actually gone with nothing. This has been extremely frustrating but we are somehow surviving. I have a cold that I can't seem to shake and have a bad case of the sneezes that my students seem to think is very funny.  Addison has got herself in a vicious cycle. She is cranky, doesn't sleep, then is cranky because she is tired, and it just goes around and around.  I spent the day playing phone tag with the hospital and today we gave her nytrasapam which is a medication for irritability and has a sleepy side effect. We think that may be why she is in bed so early. 
I am expecting a call from the doctor tomorrow I expect we will be starting her on a sleeping medication as we can not survive on three hours of sleep.

She got one of her eye teeth and her last molar!

Hopefully I will be able to update soon that we are sleeping again! 

Thursday, 12 April 2012

Plays of the week of April 3rd -April 12th

Isn't she cute! We have been wearing a lot of skirts lately since the weather has been nicer! 

Well we had one blog post where everything seemed to be going great so now it is time for our monthly troubled area.

Thursday before Good Friday was going to be a great night. Addison was going for a sleepover and we were going to the movies with friends! When I got home from work Thursday I found out her infantile spasms were bad that day so we didn't end up going. We increased her vigabatrin an extra five mls at night and that seems to have helped.

Friday Addison was quiet had a lot of naps and wasn't herself. Saturday we attempted to go to town with her but had to turn around because she was miserable. 
Easter Sunday seemed to be a better day so we went to the Halloran's for dinner! 
Easter morning goodies!

Sitting in her basket

Addison in her basket

Easter dress

18 weeks

Monday was a nice day off. It reminded me of why I love maternity leave so much. I love the routine that comes along with it and having the time with Addison. We got up did our morning routine including some therapy. She was in a good mood so I decided I would go to town and do the errands I didn't get done on Saturday. Debbie and Jared decided to come with us! Addison let us know she was not overly impressed with the car ride and preferred to be held in the mall leaving me pushing her wheel chair, carrying her, and shopping. 
We went to Alicia's house for lunch and so did Jayne and Joseph! It was a mini play date!!

Things seemed to be getting better and Addison had a great day on Tuesday while I was at work. She hadn't been in ketosis in the morning for a week but we had a neurology appointment on Wednesday for a check up so we weren't that worried.

Wednesday we had to be at the I.W.K for 8am to get blood work done through her port and once a month her port has to be accessed so it worked out good. We got the freezing on and at 8:30 we put her on the table to get it done and she had a partial complex seizure. We thought it was over but she kept looking to the right so we weren't sure. They did the port and blood work and decided to leave it in just because she was still seizing. We picked her up and fed her to see if that would bring her around but it did not. The nurse did her vitals and her heart rate was very high as was her blood pressure. She called the neurologist right away who just happened to be across the hall. When she got there she confirmed she was still seizing and to emergency we went. At this point it did not seem to serious she was very stiff as I carried her down. Well we walked into emergency and they said lets go in the trauma room it was like they knew what was coming. I put her on the table and she went into it even more and vomited everywhere like the exorcist(doctors words) and choked so bad they had to use the suction machine to get her breath back. The seizure ended up lasting one hour and ten minutes and required dilantin and 3 doses of midazolam. Her heart rate was 180 and her blood pressure up to 140 over 100. She was so drugged she required jaw thrusts to keep her oxygen stats where they needed to be. The new thing this time was she did not stop moving her arms and legs the whole time she was in the seizure.   It was scary and not quite how we had our day planned. Once the seizure stopped she was quite heavily drugged and slept for 2 hours. However, because Addison is not a fan of sleeping that only lasted so long and then she was awake. When she woke up she was happy, laughing and a different child. They admitted us to the 7th floor but when the doctor came at supper time she could not get over how good she was so she let us go home because she trusts our judgement and we know what to do if it happens again! They increased her calories as she hadn't gained weight and they hope that will help her stay in ketosis. Other then that they had no answers for us as to why she had the bad seizure....they never have answers really. 

So after a very stressful day we came home and looked forward to sleep......Addison didn't quite think that was a good idea. At 2:30 this morning Addison had slept for less then an hour in five minute intervals and we were exhausted. We had her in the bed with us but nothing seemed to help. Tyler went to sleep on the coach because I had today off as we thought we were admitted and also the drugs take 24-36 hours to wear off so I wanted to be home with her in case it happened again. Finally around 3:30 she fell asleep...I had to get up at 4:30 to take her off the pump then she was up at 6:50 for the day!!!

I will never understand how her little body functions on soooooo little sleep. 
Today was not a great day. She had two one hour naps which NEVER happens for Addison but when she wasn't napping she was crying minus maybe an hour. We have realized the irritability is definitely due to the drugs and that would explain whey she was so cranky the last time this happened and she had even more drugs. 

We took out her button and put a new one in!

All ready to go home

At the hospital

You would never know she has a major seizure and major meds

We did manage to pack up the bedrooms and bathroom today of what wont be needed until we move into our new house!!!!!!!!!!!!

My belly keeps getting bigger! I am 19 weeks so almost half way there! 

Tyler drives by the lot everyday to see if anything changes he is very anxious to start building!

Monday, 2 April 2012

March 22nd-April 2nd

Hanging out in her squiggles chair!

Not much has been going in in the life of the Halloran's for a change.

  • Addison has been doing great and seems to be a new girl! She seems to be brighter and much more aware of what is going on. We have been able to take her shopping(and she even sits in her chair cooperative a lot of the time) where she is always a hit in the mall. Tyler had someone come up to him in Kent and ask, "What aisle did you get her in?" 
  • We have been almost seizure free. She had one partial complex seizure but has had infantile spasms so we increased her to 10 mls of vigabatrin twice a day. They are the bad seizures so they said even one of them is too many. 
  • Her molars on the right side are still causing her grief and not making an appearance very fast. We can feel them but they wont break the skin. 
  • Addison loves it outside. When we have fussy days that is where we spend most of our time. If that isn't possible she is quite happy to have the country music turned up very loud! Her favourite this week is Ronnie Dunn Cost of Living. 
  • Her least favourite thing to do is sleep. Right now she is averaging 8 hours in a 24 hour period broken up. We have accepted that we will probably be sleep deprived for a very long time just part of being a Mommy and Daddy to Addison. Her routine is to go to sleep around 8:30 or 9:00. Sleep for 30 to 60 minutes, wake up for 30-90 minutes, then back up in the middle of the night at least once and if we luck out and she stays asleep it is only till about 4 or 5 when we will bring her in our bed and she will sometimes fall guarantee. But if we do get so lucky that she sleeps through the wee hours of the morning at 3:00 am the pump goes off and one of us needs to get up anyway to unhook that and flush her tube!
  • We went for an ultrasound last week and got good news! My placenta has scared over which they were happy to see! More importantly IT`S A BOY!!!!!!!!!!!!! Addison is going to have a baby brother! We get to go see him again on April 16th!
  • Addison gave her clothes to her soon to be new cousin Charlotte this weekend. One thing about it Charlotte will be well dressed! 
  • The basement is all packed and moved! 
  • We went to Nanny and Poppy Mill`s house Sunday for a yummy Easter dinner and Addison was a little ham as you can tell from the photo shot below!

Her new favourite place to nap

Addison in her personal movie theater

All ready to go to Debert for early Easter celebrations!

Too Cute

She was being a little ham

My favourite

Look at the curls

Tummy time with Dad after her bath