Be Who You Are: Plays of the week (January 3rd

Plays of the week(January 3-Jan 12)

I am back to work full time! Tomorrow is my last day of my second and week and it can't come soon enough. Don't get me wrong I LOVE teaching but it makes life very busy. One thing about teachers that people sometimes don't realize is that we have to spend so much time planning. Everything the students do is prepared by us after school hours. I am teaching grade three for the first time and therefore I have to do all the prepping as I have nothing from previous years. I look forward to the day when I am permanent and can stay in one grade year after year. I feel it will allow me to spend more time and effort into making even better lesson plans!!!!!!!!!!

Everyday I go to work Helen comes down to babysit Addison. She does very well with her and keeps up with all of Addison's therapy. I must say we are very spoiled that we don't have to bring her out anywhere. When I get home from work I have my obvious cuddle session(which if for some reason I don't right away little Ms. Addi will cry until I sit down with her!!)

Sleeping in the Halloran is a luxury. Addison doesn't really feel the need to get much sleep and doesn't worry about how much sleep her working parents get! Last week we were averaging the five hour mark of broken sleep a night and the last two nights have gotten better with 6 to 7 hours. We are functioning pretty good considering the lack of sleep we get! We are back on the melatonin giving her two mls before she goes to bed. We haven't saw too much of a difference yet.

Addison had a few bad seizures of the last couple days. Last Friday I got a call at work to say it was at the three minute point. My heart jumped out of my chest and I left school right away but luckily it stopped before I got home. When I got there Addison was limp and very lazy looking. The seizure took a lot out of her. Luckily my grandmother was there with Helen visiting so she wasn't alone. We have now increased her seizure med Keepra to 4mls to hope they get under control!

Addison had a cold over Christmas which we thought was starting to get better. Last week she didn't seem quite like herself but we just blamed it on seizures or tone. On Saturday we went to Joseph's Birthday Party and I fed Addison right away. When I was done feeding her I noticed her breathing started getting very quick. It was like she was struggling to breath. Debbie my sister who is an RN took checked her out and found her respiratory rate was 65 and normal is 20 to 40. We called the 811 health link number and they told us to call an ambulance. Well Alicia and Debbie who are both nurses said not to do that she was fine and breathing just to take her to the IWK emergency. We did this and ended up getting right in. They didn't waste anytime. They did a chest XRAY, cath for urine sample and blood work. They gave her steroids in her tube to help with breathing and also put a mask on her with medication in it to help her breath. That really seemed to make her more comfortable. The worst part of the emergency trip was that they needed to get an IV in and tried 8 times and had it in twice in those tries and both times it busted one time the fluid was being pumped in still and we didn't know it had broke so Addison's hand was enormous. In the end they gave her antibiotics in her tube and she was tolerating her food so didn't need fluid anyway. We were admitted and spend two nights on our luxury resort as we call it. The second day there was very bizarre Addison had seven naps. We knew our poor girl wasn't feeling well. But we had lots of company and passed the day away! We were released on Monday they told us all results came back fine and it was probably a viral pneumonia. There was some talk of it being from aspirating when she gets sick.

We increased Addison's formula to four ounces at a time and she is doing well! I can remember when we were hooked to the pump all day and all night because she couldn't tolerate it any other way. When we moved from there we went to bolus feeding her every two hours all day long! Now we feed her four ounces three times a day and two ounces before bed and then hook her to the pump at 9pm for approximately seven hours!

Helen had a birthday this week so we went to the local restaurant for dinner with the family. Leo had Addison on his lap. Helen had given her prune juice in her tube earlier that day to help with her bowels we have to do that every couple of days. Needless to say she saved it for her poppy. We noticed her face and Leo could smell her so we knew she was having a poop! Helen got up to make sure it didn't get on her shirt at the top of her diaper....WELL it was way better then that! It was all over Leos leg, his chair and the floor! We all had a great laugh and Tyler and I had a huge mess to clean up!!!

We have been trying to work on our CME therapy but it seems like we always have something stopping us. First the infantile spasms, then Christmas, and then she was sick! We are hoping that now that she seems to be doing better we can make sure she gets it twice a day and we may see some progress so we can go back in May!!

We are noticing that Addison seems to be responding to noises more and more! She loves when you sing to her and make any kind of loud noise like vacuuming, banging toys or household items in different ways, talking in a different voice and sirens. I notice that she turns her head to the sounds more and I feel she is noticing when a new voice is in the room.

Addison got her first molar on the left side on Tuesday we could feel it!

We started Addison on Citicoline it is a supplement to help cognitive function!!! She also takes Omega fish oil!!

I had the best evening last night when Addison sat in her wheel chair and I spun her by the feet around the kitchen dancing and singing to her while she laughed and smiled! Melted my heart!