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!
Sophie is still sick today so we haven't done much. Lucas was super tired after a day of swimming and basketball with his dad so even he went to bed early.
While Sophie has been sick it has struck me how much this house works well for us. Her room has her great hospital bed and a bathroom attached which is so handy for us and her nurses. We have large doorways that allow her to get around in her wheelchair and we have a living room with a large floor space to put her mat on.
But this house wasn't always perfect for us. Before we moved in and changed it all it was anything but. Many people have asked for before and after's of our house so I figured it was about time I put some of them up.
Sophie's room before
It was an old addition to the house that was used as a den and it had a powder room and desk area. It still had its original furniture ;)
The tear out
We did all the tear out of the house ourselves. It took us a month to do the entire main floor. It was fun but really hard work, pretty tough on the back. Luckily we have some wonderful male friends and family members who gave up a few days to help out. We couldn't have done it without the braun for a few of the things (like the cast iron tub that weighed at least 500 pounds).
Sophie's room
During construction
The happy girl checking out her new room. We added a closet and doors to the outside. We now have a deck that we can roll her out onto into the backyard.
The after
The room is a soft green with dark pink accents and I LOVE it! Her bed is a Sleep Safe II electric bed and it is awesome. There is a sitting area for us and/or the nurses and it functions really well. It took alot of planning to get to this point but it was so worth it. We strengthened the ceiling joists in preparation for a hoist, which we hope to get in the next year. Our nurses are already asking why we don't have one yet since Sophie is getting big and long. We put in extra power and outlets for all of Sophie's medical equipment. The electrician put the power outlets high and the light switches a bit low, because he wanted to make sure that when Sophie was older she could use them herself. It was so awesome I nearly cried when he told me he did that. The piece de resistance in her room is her beautiful chandelier, I still adore it.
The accessible bathroom was one of the most important features of our remodel. We knew it had to last Sophie as she grew. We did a roll in shower with hose attachment (a must), accessible toilet in case she can ever use one and we put in an accessible wall mounted sink. I purchased a mirror that is on a swivel so that we can angle it down so that Sophie can see herself in it. Some people choose to add a wall mounted drop down change table for after bathing and for diaper changes but Sophie's bed is so close we didn't opt to do that. The door is a pocket door which does stop us from putting a lift straight into the bathroom but we have a rolling shower chair so again, it wasn't an issue. We are very happy there is no door to get in the way within her room.
I hope this helps anyone out there that is thinking of making a house accessible, I know a few friends are on there way to taking the plunge. :)
We headed back to emerge on Tuesday after a consult with her pulmonologist and her paediatrician because Sophie was still not healthy. So for her third x-ray in 15 days they found that she still has pneumonia and now she also has an ear infection and is on a third round of antibiotics. Third times the charm, right?
She still greets me with a smile when she wakes from her sleep in the morning and it just melts my heart every single time. She is such an amazing little girl and I often wonder what she is thinking while she goes through weeks of sickness like this.
Tonight I had a really nice visit with a friend, she brought some fun stuff for Sophie from her little girl to cheer Sophie up and Sophie was totally excited. She gave some great smiles and was curious to see what was in the shiny pink bag. :)
Let's just say it was awesome! Sophie had fun discovering the items one by one. There was this really cool light up ball called a Fusion Ball that plays music and shakes and Sophie was mesmerized by it and wanted to see it in her mirror when we played with it before bed. Sophie will often look at favourite things in her mirror (like our faces, the wiggles on tv, etc.) instead of looking straight at them, I think it is part of her CVI or maybe it is just a fun sensory experience for her.
Lucas wanted in on the action too! I know that we will get hours of fun from all the new goodies. Thank you Cheri and Julie, it was such a sweet thing to do for my girl!
Lucas was a cross country running machine this year. I have mentioned in other posts about how well he did in the pre-season meets and then also winning 6th at the Regionals.
On October 18th Lucas was part of his schools group of about 8 boys in his age group that made it to the cross country finals for the TVDSB, a region that spreads quite far in the province including many counties. He didn't disappoint.
My boy in his day glo shirt from the finals, with his medal. (I edited the school name so it looks a bit funny.)
Lucas came in an amazing 35th at the finals which was awesome in itself, but that showing also was the key component of winning the Team Championship for the novice boys. Lucas and his three besties were 1st team! The team championship goes to the group of four from one school with the top 4 showings combined. I was not surprised when Lucas and his 3 best friends were able to accomplish that, they are all incredible runners, but more than that, they are incredible kids.
His school had an assembly last week to honour all the amazing cross country athletes and Lucas and his 3 friends were presented with medals, a plaque for the school and a banner that will hang in the gymnasium. The senior boys were also first team in their division! An amazing cross country year for their school.
The Good
Sophie is feeling better. But it has been a long 11 days.
We have done this before, dealing with Sophie sick, but it doesn't really get easier. I hate seeing her in pain, I hate seeing her struggle and I wish I could make it all ok.
She is done her medicines now and her doctor said that she is now just dealing with the collateral damage of the infection. Her reactive airway disease is still making her struggle and her body is needing time to heal even though the infection should be gone now. But each day we are seeing huge improvement.
Yesterday was the first day I was seeing smiles between the coughing episodes. She even took time out to make cookies with my mom yesterday when she came for a visit.
She is on the upswing and I hope that she is back to her happy, healthy self before we know it.
The Bad
Tuesday night I had something happen that hadn't happened before. I knew she was about to have a seizure before it happened. I don't know how but I did. She was very uncomfortable and wouldn't stop kicking her legs and just wouldn't settle and fall asleep. I was asking her if her tummy hurt or her head or her legs and so on. She didn't really respond with anything that I could take as a yes. Then I asked her if she thought she was going to have a seizure. She looked so anxious and scared. I picked her up and layed her across my lap and rocked her, within five minutes she was asleep. Five minutes after that she started having a seizure.
I think that Sophie was experiencing an aura of the seizure to come, which often happens with some people. Her anxious behaviour was just so out of place. Maybe she just needed permission to relax and let it loose. Who knows.
I so wish my girl could tell me.
The Ugly
You wouldn't know it from this picture but I put her diapers on everyday. I have been putting diapers on kids for 8 years now - why couldn't I figure this one out!!! It was ridiculous!! It took me 10 minutes to get it looking this good.
I had requested some diapers from our home health care store to try for Sophie because her regular diapers are getting small. Sophie has had a bad reaction to one brand of diaper so I am trying to get ahead of the game and find something that will work. This was one brand that lots of moms rave about on a forum that I belong to. Let's just say I am not sad (or surprised) that she peed out the side of this one in about 3 minutes flat and I won't have to try these on her again for a long time. :p
To add to this week's ridiculousness I have a bad cold and Jason sprained his ankle quite badly. . Oh yeah, and I found the dog rolling in dog poop in the backyard today.
Who would think that loosing your first tooth would throw everyone into a panic. It is just a regular old rite of passage for every child. Right?
Sophie doesn't do regular.
Sophie lost her tooth, we think, on Monday at her Child Life therapy program.
Sophie with her first tooth missing.
Sophie was showing some worrisome symptoms suddenly like choking, gagging and some difficulty breathing while in her therapy program and it wasn't until I noticed her tooth missing when I picked her up that I thought she might have aspirated her tooth. It was something we had talked to the dentist about before she lost her tooth and they said it was a valid concern, we were to keep an eye on her tooth as it got more wiggly. Unfortunately Sophie lost her tooth when I wasn't with her and we will never know where that sucker ended up that morning. We did a full x-ray to see if she had aspirated it but it was no where to be found. I assume that she coughed it out when it first fell out.
What the x-ray did show was that Sophie had pneumonia. We started her on antibiotics right away but she has become worse and worse over the last 5 days. Yesterday I decided enough was enough and she needed to be seen again. New x-rays have shown that her pneumonia has become much worse, which explains her terrible state, so we started her on a new antibiotic and prednisone to help with her breathing and coughing episodes.
Sophie fell asleep sitting up while being read to, she was so exhausted.
Passed out with daddy the next day.
She has had such a hard time, it is really hard to watch her go through it.
So many regular parts of childhood play out so differently with my girl. Who would think that losing your first tooth would be something to seriously worry about, or catching a simple cold, getting your face accidently dunked at the pool, or being able to trick or treat when you can't talk and you can't get up on any porches, getting your haircut when you can't hold still and can't hold your head up well or going for a pony ride. All little things that can impact a 5 year old's life in different ways.
It's not easy sometimes but we plow on through and hopefully Sophie knows that we do it all for her because she deserves a great life and the fun experiences just like every other child deserves.
Lucas decided over a month ago that he wanted to be a member of the band Kiss for Halloween. He started trying to recruit band mates and luckily one of his good friends decided it would be fun if the two of them dressed up as Kiss.
Lucas rocked it.
We worked really hard at piecing together his costume over the last week and I think it came out pretty great.
Sophie was a little bit harder, until I came across this Little Mermaid Ariel costume and I realized it was perfect. She is like a mermaid, doesn't walk so well on land but is right at home in the water, just like my girl :)
Sophie was a trooper and tried to keep the wig on for photos, she even survived through having lipstick put on. I think she looked adorable.
We had an awesome night trick or treating with two of Lucas' friends and came home tired with a huge haul of candy.
