I have been on a bit of a hiatus here and now it is so close to Christmas I feel like time has moved on without me! Jason and I went away last week for a vacation and I am still in catch up mode. Sophie is doing great. She is happy and healthy and full of smiles. She is loving being back in the land of the living, having fun at daycare with her friends and teachers and getting out and about. Lucas has been tired out this week and I think that he is ready for a holiday.
Every year since Lucas was born I have had pictures of him with Santa and when Sophie joined our family that tradition continued. Tonight we headed out to the mall to meet up with Santa for this years photo. We endured a melt down in the car by Lucas because we were dragging him out when he wanted to be at home, but got there and he settled pretty quickly as we arrived to see Santa. Santa was wonderful.
Sophie is loving Santa this year. We just have to mention his name and she smiles from ear to ear. She totally gets it and it makes my heart race, she knows who Santa is and she is starstruck by him.
This picture from tonight is one of my all time favourites. Sophie is in Santa heaven and Lucas is giving his best smile because he knows it makes me happy, my sweet boy!
I am so excited for Christmas, hopefully we will not have any detours to the hospital this year. Fingers crossed.
Today Sophie and I stayed cozy in our pj's while Lucas was at his basketball session. She was very happy and attentive and ready to play. She has gotten better each day and now it is just a cough that remains and lots of drool, she has had purple hands each day for the last three days so something is going on with her circulation but hopefully it is working itself out. She is now on half pedialyte half food as of yesterday and I hope that tomorrow she may be back on full feeds. Slow and steady.
I wanted to play with some holiday stuff now that she is on the mend so I grabbed some new stuff I had found and we got down to playing.
These are window clings that I put on Sophie's mirror, she loves mirrors and this really caught her attention with the 3d aspect of the clings.
We added some bells next and she was loving it even more.
We played with some snowflake beads next and Sophie was all worn out by the end of it. We are finally having Christmas fun!
Sophie must have a pretty big case of it by now with 4 1/2 weeks at home except for hospital trips and one trip to the mall which was a bad idea after the fact. We have taken her off all food for the last two days since the explosive bm's were not going away. She is on pedialyte and I am hoping that at least by tomorrow we will see a difference. She had two very odd seizures yesterday so we are keeping a close watch on her because of the increase in her seizure activity.
With this cabin fever she is a bit vocal when she isn't being entertained properly so I have been trying to think up ways to keep her entertained that are fun for her. Not therapy, not educational, just fun. Of course it reaps those benefits as well no doubt, but that is not my goal. Sometimes you just have to have fun for fun's sake. I think it can be automatic for all play in the life of a child with severe disability to hinge on therapy, but it needn't be so. Over the last few days we did some switch games and she is still really enjoying them. We found some Christmas ones and she thought it was great when the music would start to play and the character would appear after SHE made it happen.
We also found some funny ones that she would crack an egg and a chicken would appear. Here is some video of my girl rockin' her game.
We finally got all of the Christmas decorations up with the help of my mom. Lucas was interested at first and then beat it when he had had enough. He thought the french horn was pretty awesome though and we heard a few minutes of assorted noises. Then at some point he informed us it had switched into farts and segued quickly after that into diarrhea noises (his words, not mine ;p ). Such lovely accompanying music for us. But that is part of being a boy and we have obviously been talking about it a lot here.
Back to Christmas...
Sophie was liking the lights and the tree very much, she had alot of fun seeing us put the basics together and then helped us put a few bulbs on too. She gave me a few smiles but she really just wanted to watch Lucas trim the tree. She adores him so much and just can't get enough of her big brother.
Today I thought we would try some Christmas crafts. I had purchased some waxed paper because I wanted to try some window art with Sophie. I had found the idea here from Play at Home Mom, one of my absolute fave craft bloggers. They painted right on the glass but with Sophie I wanted to keep it a bit safer since she swipes her arms so fast, so I figured the waxed paper would work. The idea of it was fine, but Sophie got very excited with it and no matter how much I taped it down she managed to get it crinkled up and torn apart lol. I think I will be able to save some of the pieces, I will put them in a glass frame and put in the window when they are dry.
ATTACK!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!
Since we didn't get to do as much with the waxed paper as I had planned we pulled out a canvas and she finger painted on that and then we added glitter. She loved shaking on the glitter and it is now hanging in our front hall for Christmas for everyone to see.
the final masterpiece up on the wall..
This painting shows more than any other how much Sophie favours her left hand. Maybe we have a leftie in the making. By the time we were done Sophie was covered in paint, in her hair and all over her chair. You know fun was had when you make a mess.
I am so sad to be writing another post that talks about Sophie being sick. We should be past this now, she should be better. It has now been four weeks since she got sick. It is breaking my mama heart to see her continue on this way, to keep getting worse.
Since last night Sophie has had 3 seizures, maybe even one more, her nurse wasn't quite sure if one was or not. I have been there before with Sophie, standing over her, looking at her in her crib saying to myself is it? No, it can't have been going on this long if it was one, only to see her morph into a full on tonic clonic. Three seizures in under 24 hours is a record for Sophie, never in the two plus years that she has been dealing with these awful things has she had that many together. We have always been thankful for that, but knew that that luck could change at any time. And it has.
My girl had a really rough time last night through the night, starting with a seizure at 9pm, then another at 1:30am and many bouts of diarrhea. That continued this morning but she had an alright morning and was happy to see Lucas and daddy return from their trip away. She isn't yet tolerating full feeds and we are running her pump with pedialyte at half speed.
Through the day her chest was sounding yuckier with each hour, she had more diarrhea and another seizure tonight, a tonic clonic. She is exhausted. Her poor little body is worn out and there is nothing I can do but cuddle her and love her. It isn't enough. I want my healthy girl back but all we can do is wait it out and it so hard to do. She has been much sicker than this before, critical many times, but when it is over such a long period of time it is like pulling the bandaid off slowly. I just want to rip that sucker off and get it over with!
Well it was never funny, but now we are in the realm of ridiculous.
Sophie has a gastro bug. We haven't even gone anywhere in a month for her to catch one. She started with a large emesis on thursday night along with diarrhea (I know, tmi) and then both continued all yesterday. She didn't have a wet diaper for 15 hours yesterday, and by the time she did it was very small and very dark. So my sister and I took her to the Children's after hours clinic last night. They said that we should keep her on just pedialyte for the next 12 hours (she normally is tube fed her formula throughout the night) and then today we can trial half formula half pedialyte. She was happy this morning and had a good night without the formula in her tummy. We will see what today brings, she is home with her nurse since I am at work this weekend.
I found out today that Sophie shared this with my sister and now she has it too. Lucas was looking as pale as a ghost last night but he was fine this morning so I think he was spared.
Sophie had a bit of fun playtime in the morning yesterday, we got out her switch adapted mouse again and found some more great online games that are accessible. Hopefully we will be back at it soon. I was hoping to get all of our Christmas ornaments out this weekend, I think we really need something to look forward to and Christmas fits the bill perfectly. I want to do some fun Christmas crafts and I have a few ideas already. Fingers crossed that we can get back to normal here really soon.
Sophie is hanging in there. She will be at the 4 week mark of being sick on Sunday. She is back on prednisolone and it seems to be helping. She has a double ear infection now and all we can do is assume everything has been viral this whole time regardless of what her 4 xrays have shown since no antibiotics have helped.
We had an unexpected trip to emerge via ambulance on Monday because Sophie had a bad seizure where she choked on all of her secretions and stopped breathing for a short time. We ended up at hospital for almost ten hours because she was needing oxygen support. It was very scary to see and I am so thankful she is alright. It was one of those moments where everything is going in slow motion but going super fast at the same time. I can't get the vision out of my head yet and it reminded me in a slap you in the face kind of way why we don't leave her alone for even a minute.
Sophie had her best days yesterday and today and I can see the light at the end of the tunnel, at least a glimmer of it. It is about time that my girl caught a break. December 1st, I have been begging to see this date on the calendar, a new month must bring new health, right?
Since she has been feeling a bit better I have been able to play with her for longer periods of time. She was up in her pony walker for a while today and it was awesome to see her upright. When I asked her first thing this morning if she wanted to go in her pony she let out this very emphatic happy noise, she sure let me know the answer was yes! She is getting so vocal and I love it!
We had a very positive ACS consult (phew! can you believe it???!!!) on Monday at the house where they actually see the child. Crazy idea eh? Who would of thought that would be helpful ;)
We came away with an actual plan for Sophie and her communication needs and I am excited. I will post more when we get all the pieces in place - soon.
But in the meantime I had wanted to start working with some switches but all we have are her Jellybean switches that I purchased with nothing to attach them to. I asked the therapists about an adapted mouse and where to purchase one. Then, I was rooting around in her closet tonight to have a look at her jellybean switches and lo and behold I pull out an adapted mouse. I didn't even know we had one! It is a loaner from her therapy centre that must have arrived with some other equipment and got put away before I was able to look at it.
So I got it all set up and Sophie was able to play on the computer tonight. She had a great time making some songs go and playing a couple games. It is so rewarding for her to have the independance and we will be using it each day now that I know we have it!
