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!












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