Saturday, November 21, 2009
She only had one small pee today. Which means force feeding her. Which I hate. And Zoe has always hated but can now sign "angry" to make sure I know she hates it.
And just another bath.
Where Zoe tips her face back into the water in an attempt to drown herself. She sucks the water into her lungs. I sit her up while she chokes. But after a few seconds she takes a breath.
And I wonder.
How many more baths like this?
How many more times do I have to bend over and give her body total support just to get her clean?
How many more times is she going to choke herself?
And I already know the answer to that- too many to count.....as many as it takes....and it doesn't really matter how many since I will always be here with her.
As I scrub her scalp medicated shampoo into her head Zoe accidentally knocks her turtle toy so the neck makes the cracking sound she loves. I see a tiny smile start and a small chuckle, "Heh heh heh."
And I think two thoughts simultaneously:
"This kid is going to kill me."
"My god she is gorgeous."
I ask Zoe, "Are you breaking necks?" (This is a game we play with her cracking turtle). Zoe throws her head back in a full grin and looks at me expectantly.
And I think, "How did I get so lucky?"
Wednesday, November 11, 2009
Zoe sleeping in her big girl hospital bed. This was the first time she has ever slept for any length of time in a large bed. It was useful though, because for the first couple of nights she was so restless mom or dad would have to climb up there and sleep with her. Not very restful for us (Zoe is not a peaceful sleeper) but what she needed!
Zoe and her wonderful respite worker Riann, who came in on her own time to give mom and dad a quick break one day.
An update- it's now the 13th and we pulled Zoe's NG tube last night. Sounds like she had a good day at preschool today and is eating better. So hopefully she is on the rebound.
Saturday, October 31, 2009
We tried out a surfer bather hydraulic bath lift but we have found it is not a good fit for us. It was great at lifting and lowering Zoe into and out of the bath but since the lift weighs as much as Zoe and we do not have a second bathtub, setting it up is as much work as lifting Zoe. From trying it out we did figure out that we do want to look into a bath chair as an option at this point. Zoe is still not able to support herself at all in the bath and has started a behaviour where she flings herself back in order to drink the water. Kids at this age typically try to drink the water but since Zoe is on her back she ends up choking and aspirating on the water. Which is not a good thing! So we are waiting to try out some different bath chair options.
New Therapy Plan
Zoe just started at a rehab centre. She will now go there for therapy rather than the therapist coming to our house as they have done until now. We are excited to start this next phase of Zoe's therapy because we know it will be more intense and push her more. We are a little worried that this will be very hard on her. But we know that it is good for her in the long run.
The Never Ending Parental Guilt
During Zoe's assessment for the rehab centre it has become quite obvious that her therapists have not been pushing her as much as they should have. And we knew this for the past little while but since Zoe had such a rough winter we didn't want to push her too much. Since Zoe has been sick, we focused on other goals like communication, social, and walker skills. We know that we are amazing parents and that Zoe has grown so much but still we do feel guilt that we did not push her more with physical therapy. Does any parent not feel this guilt all the time? No matter how much you give your kids, it never seems like enough. As a parent, you want them to have it all. So we try to sit back and see how far Zoe has come. And the reality is Zoe would still be very delayed physically no matter what. She was far too sick most of this past year to have much energy for focusing on gross motor skills. It is actually amazing that Zoe is doing as well as she is considering all of the challenges she faces every day.
Zoe is finally big enough to sit at the table like a big girl to play or eat. She is quite proud of herself. She even signs "Zoe proud" when she is especially proud of herself these days. It is amazing how she is starting to pick up on social expectations/ pressure. She had to go to the back of the line at school for pushing and she was very upset about it. She kept signing "Zoe" with a sad face when the teacher was telling me about it. I guess she learned though since she hasn't pushed in line since then. We are encouraging her to feel proud of herself when she does the right thing by telling each other about it, "Daddy, Zoe wants you to know that she turned the light off in her room all by herself" or "Zoe wants you to know that she helped pick which vegetables I should chop up first for the stir fry" etc which results in Zoe smiling and signing "proud."
Oh no- what would our Scottish relies think! Great Grandma Ross already warned us, "She's a bonny wee babity but don't tell her she is so bonny or she will get to be too proud."
And Zoe thinks it is quite fun to lay in the donut as well! Daddy thinks her new hat is fun too. We also go one with jiggly bells on it and Zoe thought it was hilarious when she moved her head and heard the bells jingle.
"Going to cottage" is a very popular holiday plan for many people from Ontario. We planned to camp this September but never made it there so instead we decided to do the traditional cottage experience since camping in October can be a bit chilly. We were quite pleased with how relaxing a trip it ended up being. We went to Gananoque in the 1000 islands area.
Zoe sits with daddy while enjoying her first cruise.
Zoe laughing with mommy on the cruise ride back to the cottage.
Friday, October 16, 2009
Genevieve: "Mommy hasn't been feeling very well but she is seeing doctors so they can help mommy feel better. Hopefully mommy will feel better soon. But you don't need to worry about mommy."
Zoe signs "kisses"
"Oh, are you going to give mommy kisses to help her feel better?"
"That's a good idea. Kisses would help mommy feel better. What else do you think will make mommy feel better?"
Zoe signs "milk"
"Milk? You think milk and kisses will make mommy feel better?"
Zoe smiles and signs "play"
"Oh and playing will make mommy feel better too. Kisses, milk, and playing. Anything else?"
Zoe signs "sleep"
Laughing I say, "Yeah you are right, sleep would help too. So is that what mommy should do, get lots of kisses, milk, playing, and sleep?"
Zoe smiles and signs "mommy" "happy"
"Yes, you are right Zoe. I think those things would make mommy happy."
So there you have it- Zoe's prescription for happiness:
kisses, milk, playing, and sleep
Sounds good to me!
Sunday, September 20, 2009
Zoe posing for the camera in her new glasses.
Zoe's New Big Girl Role
Now that Zoe is a big girl and goes to preschool, she is starting to have jobs around the house. Currently, it is Zoe's job to feed the fish, oversea daddy cleaning the fish tank, turn off the light in her room, and sometimes Zoe will help us with preparing dinner.
Zoe's New Fish
Zoe adopted Brittany, the fish from school. After rearranging the classrooms this summer, Brittany no longer had a safe place to live. We were very excited to take her home. Zoe knows that Brittany is her fish and therefore, she has to take very good care of her. Gavin was just a little bit excited about having a second fish tank!
Zoe showing Brittany her rolling toy.
New Look for the Pony and New Walking Style
We used to use a basket on Zoe's pony with a toy in it as a way to motivate Zoe to walk. Lately, she became so interested in the toy that she would just stand there and play with it. So we have taken off the handle bars and basket so the pony is open in the front. Now, Zoe is able to get right up to tables, chairs, etc to reach things better. And she can see where she is going so she is not distracted from walking. We have noticed big changes in Zoe's walking style. She used to walk just for walking sake and just run around when in an open area. Which is typical of kids when they are first walking. Now, like an older child, Zoe will take off and run over to a toy or something she wants to play with but does not do a whole lot of walking for walking sake. She now expects to walk to get where she can play. We have set up different areas of the house for her to explore and play in. School has done a really great job with this as well.
The other way her walking style has changed is that her coordination has really come along. Zoe now gets a full gait going with opposite arm swinging at the same time her leg is moving forward. It is very exciting to see this development. Zoe can now back up and move away from things when she is stuck. Every now and then she gets really stuck and will squawk for help, but mostly she is very independent (and has to be watched or she will really take off!).
Zoe playing with her pom pom outside of her "bat girl" cave.
Zoe stopping to play with one of her favourite toys while walking around the living room.
And despite us putting up all sorts of fun sensory play stations and toys throughout the house, Zoe's favourite place to go is still the bathroom! Crazy girl! She now has the coordination to turn herself and go into the bathroom very easily and loves to just hang out in there signing "more." More what? More toilets? Who knows! You can see her signing more in this picture.
School has been great about working on lots of new signs with Zoe. We are continuing to work on signs at home too. Zoe is working on her animals right now and names for objects in her classroom. I have been working on feeling words and Zoe is doing an amazing job communicating. Something I did not teach her but she has started doing herself is to add "mommy" or "daddy" to her feeling sign to let us know which one of us is making her angry or sad. And she will label our mood too by signing "daddy tired." She is also doing a great job of vocalizing to get our attention and then signing. We joke now because she has become so vocal that we feel like she just yells at us all day long! She is not always patient but it is so great to see how much she is able to communicate despite her being "non-verbal."
New School Schedule
Now that Zoe is in Preschool, we decided to increase her days at school to three days a week. Zoe now goes to school Monday, Thursday, and Friday. Three days in a row were too much for her, she would just be exhausted by Friday and not get much out of it. This way she has some time to rest in between but is never away from school more than two days. Zoe continues to LOVE school. This past Monday I woke Zoe up to get her ready for school. She kept repeatedly signing she was tired. The conversation went something like this:
Zoe signs: mommy
Mommy says: Yes, Zoe?
Yes, Zoe. I know you are tired but it is time to get up.
Yes, Zoe. I know you are tired but it is time to get up.
and it repeats itself until Zoe hears Gavin in the kitchen. She then applies to daddy for help.
Yes, Zoe. Daddy is in the kitchen.
Yes, I know you are tired.
Yes, Zoe. Daddy is right there.
Ok Zoe, I will tell Daddy you are tired.
Daddy- Zoe wants you to know that she is tired.
Daddy says: Ok Zoe, I know you are tired but it is time to get up.
and on it continues until I answer with
Zoe I know you are tired but it is time to get up for school.
suddenly Zoe's hand stops in midair from signing "tired" and grasps the other hand in a "school" sign while a big smile spreads on her face.
Yes, Zoe you are going to school. That is why I woke you up.
School (signed while laughing and smiling)
Gee Zoe, I thought you were tired.
Shakes her head no and then signs "Zoe school"
Well I am glad that you suddenly got so much energy for school.
Yes, Zoe you are going to school
(Sigh) Yes Zoe, you are going to school
and you can imagine this continues for some time!
New Physio Schedule
At this point, we are able to back off from doing so many physio exercises and able to let Zoe run around the house and play to get her exercise. For a long time, we had to teach Zoe to put her feet on the ground. Now, she loves to walk and stand. So we are working on building her endurance and this is best done by letting her walk as much as possible. We take her over to Variety Village (a great wheelchair accessible facility with big smooth hallways and a heated pool) and just let her wander the halls. It is also great to see how many people know her. Many have commented on her not having her glasses the last few weeks. It is nice to have this sense of building a community that is getting to know Zoe. Some people I don't even know but they will say, "Hi Zoe" so I guess they know her!
Zoe also loves being in her stander and will stay there for up to an hour as long as she has something to play with. She LOVES playing in the sandbox or water table at school.
We do still have to do some arm strengthening/ compressions to get Zoe to put her hands out. She continues to put her arms down at her sides rather than use her arms to push up or brace herself when falling from a seated position. Just like with her legs, we have to program Zoe's brain to do what other kids do instinctively. We also continue to stretch her hips and hamstrings which continue to be very tight.
As always, Zoe continues to be very motivated to grow and build muscle tone. She does a great job rolling her toy back and forth to build shoulder strength, pushing buttons to build fine motor, etc. She is even building the muscle tone on her right side without us needing to prompt her to use that arm and hand. This is different than showing a preference for one hand or the other since it is a weakness in one side rather than a preference in the other. We used to have to prompt her a lot to use that right side, but she is now doing it herself. It is so nice to be at a place where therapy is becoming more play based and less funky exercises that make her scream!
New Health Routine for Genevieve
I am continuing to have some health issues this year. In 2005 I had an endometrinoma removed from my left ovary. At the time of surgery, the doctor also removed several more endometrial growths from my pelvic cavity. Since surgery, I have done well maintaining my health by eating well, getting lots of sleep, and acupuncture. As you can imagine, finding time for these things has been challenging since Zoe was born.
My doctor gave me a stern warning lately and I have missed quite a bit of work so it has been a real wake up call. My symptoms are much worse lately and interfering with my life. So I have recommitted myself to taking better care of myself, building my own muscle tone (how else am I going to be able to lift Zoe in the next few years as she gains weight?!), and getting back to acupuncture. My symptoms are such to suggest I may need more surgery but I have decided to hold off on that option for the moment. Surgery is not a cure for endometriosis and can actually cause more growths on the scar tissue left behind. Unless I am in danger (like last time- the cyst got so big that if it erupted on its own I could have lost an ovary and gotten very septic) I am opting out of surgery for now. Acupuncture has proven to be very effective in treating symptoms. I just haven't been good about going on a regular basis. I also started a hormone last April to help with pain and I am happy to report that the pain is getting much much much better. In April, the pain had gotten so bad I could not lift Zoe but would drag her from room to room on a towel (she actually enjoyed this!).
I think it is a combination of not being in chronic pain and Zoe doing so well that I am feeling much better mood wise. I feel like a new mom in some ways. There are days when I know I should sleep in (like yesterday- Gavin was home and got up with Zoe but I heard then giggling so I HAD to get up and see what they were up to) but I just want to gaze at Zoe all day long. She is so beautiful and I just love watching her eyes light up as she cruises the house and discovers something she can play with. I love hearing her "yell" at us. I even love when she is mad at me because I say it is time for bed and she signs "mommy" and "angry" with a very angry looking face so I know that she is mad at me! She has such a great sense of humour and I miss her so much during the week when I am at work that is is hard to take any time for myself to sleep on weekends.
So for now I am committed to taking better care of myself (something women in general are not encouraged to do in our society or my family). And I am really enjoying watching my beautiful and wonderful daughter play with my gorgeous and wonderful husband. They both make me feel like I am the luckiest mom/wife in the world.
After posing for the first picture on this page, Zoe giggled and signed "all done" like she was saying, "Please, please no more photos right now..."
Then she got serious- "all done" aka "look, I mean it, no more photos right now!"
Thursday, September 17, 2009
This post is a copy of a letter I sent the CBC last Thursday. The CBC is Canada's national publically funded broadcaster and the show I refer to is a satirical news program (long past it's prime). It's not really a happy letter- not really a sad letter either. More resigned, I guess, and a reflection of the world we live in, and the perception society has of those that we all know deserve far better. It contains some terms I would never even think of using- not meant to offend but to illustrate my point. Here's the letter, anyway.
Hey "This Hour has 22 minutes" people,
I am not a fan of your show, though once I was. It has probably jumped the shark tank some time ago, despite the introduction of some peppy new comedic talents. Still, you are not as terrible as "The Air Farce"; you are certainly no Rick Mercer Report, however. Sorry, but there it is. I do thank you for bringing a nice little piece of irreverence and satire to the Canadian/world scene, no matter how frequently miss your mark.
This letter is not intended as a critique of your comedy, however. Today I sat down to dine on some nice leftovers and switched on your show at 3:53 PM. As I enjoyed my re heated meatballs a segment came on- the show was a rerun and I have no idea what the segment was on or when it was from. Something about IQ scores at the CBC. Whatever. However, in the course of the 92 seconds I watched you used the term "borderline retarded" at which point I clicked away. We don't have cable, so five channels later I found myself back again to hear "it's like getting a gold medal high jump at the Special Olympics" at which point I turned off the TV, sighed (I had finished my microwaved meatballs by this point) and came through to write this letter. And here is why.
The term "borderline retarded" is, except in very specific medical senses (and even then it is insensitive and non specific) an unacceptable phrase. As are Special Olympic jokes, when the aim is to denigrate the accomplishments of somebody. People with developmental disabilities (like my daughter Zoe) have to put up with these insults, and this discrimination, and this denigration of their worth as human beings every single day. Casual references and jokes, like yours, really do stigmatize and hurt. My daughter, only two and half, does not yet feel this hurt , but I do, and her older friends with developmental or intellectual disabilities do, and my cousin who has Downs syndrome does, and thousands and thousands of other Canadians and people around the world every single day do. Imagine for a moment you are an adult with a developmental disability, and you come home from your job or your day program or whatever and you’re sitting on the couch with your mom or your roommates and you flip on "This Hour has 22 Minutes". You think, "oh good, they are funny" and then BAM! Mark is calling you and your friends retarded. And then BAM! you look up to see your Special Olympics medal you are so proud of just as Gavin is taking a big fat dump on it on national TV and calling it worthless. Nice guys. Really classy. And people laugh. And laugh. And laugh.
And you shut off the TV and then what do you think?
And by the way, have you ever seen some of those Special Olympics athletes? They can kick my ass at High Jump or Shot Put, or just about anything athletic. Yours too, I'd be willing to bet.
So will I boycott your show? No, I don't really watch it anyway. Will I organize a letter writing campaign? No, though I will encourage my friends and family who I included on this e-mail to write to say "Yo, guys. Way to go. Thanks for picking on the weakest and most discriminated against group in our society, and contributing to their continued degradation by doing it so during prime TV watching hours, and showing it continually on re-runs, so people can see it again and again and again". I am far too busy for letter writing campaigns- organizing my daughters medical appointments, looking for ways to maximize her quality of life, doing her physiotherapy, taking her and her walker and her stander and her special needs stroller everywhere, fighting discrimination and fostering inclusion so maybe, maybe one day she won't have to put up with this shit . . . you get the idea.
If there is an air of weariness to this letter, it is because I have to fight this fight, for my daughter, every single day- I hear it on the subway, on TV, at work (and I work at Sick Kids, the largest Children's hospital in the nation). And do I ever expect to see "retard" go the same way as "nigger" or "pakky" or "kike" or “faggot” as it should? (I use those terms to demonstrate that retard is a word of the same ilk- filled with denigration, judgement, prejudice, discrimination and hate) No, not really, because shows like yours use it so casually so often it becomes a part of our language, so disconnected from any meaning but still spreading hate and pain to those that, really, deserve far better. What do I expect the outcome to be from this letter? Realistically, maybe a polite letter from a junior assistant on CBC comedy staff saying "we appreciate your comments, and keep watching the CBC". What would I like? Maybe for the writers of your show and the stars to see it, and think about it, and what consequences their words had, and maybe they shouldn't have been, well, the insensitive assholes that they were.
Shame on you guys, really. Put yourself in the shoes of my daughter - well, maybe not literally her shoe's, she has tiny feet- but metaphorically. Her shoes and the shoes of the women you see at the mall or the guy on the subway or the cute Downs Syndrome kids you see in the Special Olympics poster or somebody's cousin or sister or granddaughter. And you'll realize it's not funny. It just hurts.
Thanks for your time. Zoe sends her love. No, this is a lie- she has no idea who you are. And yet you took the time to insult her? In truth the only TV show Zoe watches is "Hockey Night in Canada" and that's because sometimes Daddy watches it with her for a couple of minutes before she goes to bed. Like my mom and dad did with me. Go Leafs.
Best to you and yours
It's been a week now, and so far- no response.
Tuesday, August 25, 2009
at the conference our friend Abbie (well, maybe more Abbie's mom Kim) wanted to try out Zoe's walker. So here she is, giving it her best (it was the end of a long day and it was her first time in it- you can see how much it wore her out!) Kim asked us to post the video so she could show it to her physiotherpaist with the hope of getting Abbie a similar walker- maybe next year at conference Zoe and Abbie can chase each other around!
(FYI, the song is "These Boots are made for Walking' by Nancy Sinatra :)
Tuesday, August 18, 2009
We have a busy week with lots of appointments for Zoe, so we won't get around to posting pics and info about our trip for a few days. One of our first things we want to post is the video of Abbie in Zoe's walker so Kim can show it to her PT. We are working on it Kim and will have that up and running soon!
Until then, check out Alayna's blog for great pictures of most of the kids. Angie did a great job getting individual pictures of a lot of the kids (I have to say, that Zoe kid is a real cutie). Unfortunately, our camera was out of batteries, so we did not get very many pictures at the conference. For info about the speakers, go to Whitney's blog. Nate did an awesome job of summarizing all the speakers so the people who could not be at conference still get all the info. Thank you both for being so on top of documenting another great conference!
Zoe's Tea Party Total
Zoe raised $508 Canadian/ $459 US!!!!!!!
We were excited to raise so much so quickly. We realize we did not give people very much time this year to contribute due to dealing with Zoe's lung issues right before the trip. But thank you, thank you, thank you to those that did. And for those that didn't- don't worry there is always next year!
Zoe saw opthomolgy yesterday. All is the same as three months ago. Her eye dryness is not getting any worse but not getting better. So the plan is still to put in tear duct plugs in November when she is already asleep for her MRI. Her regular eye doctor is not available at that time but will have another doctor do the surgery for him. Gavin met the other doctor yesterday and said he was nice enough so we feel comfortable with this plan. This is not a complex surgery so it should go smoothly in November.
Zoe also saw her pediatrician yesterday for some ongoing issues (I am not going to go into detail until we get some test results- it is no use speculating about what could be with Zoe, we are far too busy with what actually is to focus on what ifs). Great news is that Zoe has gained a little more in height again so that means she has gained a whole inch in the last 6 months! She also gained a few ounces while we were away so she is up to 19 pounds, 3 ounces! What a fatty! Other great news is that Zoe stayed well the entire trip!!!! This made the trip so much easier and we had such a great time. We could tell her pediatrician was so happy to see Zoe well yesterday and to hear she stayed well for the past three weeks. Even more great news- Zoe's lungs sounded great and clear!
Zoe sees dentistry for the first time this morning and then has to get some blood tests and a chest xray to check on a few things that have been going on. Unfortunately, I can't be there with her since I am having some health issues of my own and had to see my own doctor this morning. All is fine with me. I just get to look forward to yet another pelvic ultrasound. Yippee!
I wish I could be there with Zoe and Gavin this morning since I know that it will be upsetting for Zoe to have her teeth looked at and cleaned. And she hates going into the plastic tube that they use to stabilize her for the chest xray. I just hope that they are able to get her blood since she continues to be a very challenging stick. We promised her we will take her swimming if she gets home in enough time before she has OT this afternoon. For now, I am supposed to be resting. So that is what I am going to do. Well that and pull out Zoe's next size in clothes. She has gone up a whole size in the last few weeks! We want to make sure she has a cute outfit to wear for her first day of "big girl" school on Thursday. Can you believe she starts Preschool on Thursday...where did my baby go?
Wednesday, July 29, 2009
We'll be sure to take lots of pictures and post when we return. Have a good couple of weeks everyone!
Monday, July 27, 2009
(I love that the Canadian dollar is doing so well since we are about to spend 2 1/2 weeks there- better exchange rate here we come!)
Thanks to everyone who has contributed so far!!!!!!!
If you still want to donate- don't worry, there is still plenty of time! Conference starts this Friday.
Don't have money this year? No worries- we will probably be running the fund raiser again next year.
Don't have money this year or next? Still no worries- if you are reading this blog, then you are already supporting a child with 1p36!
Thursday, July 23, 2009
I dropped Zoe off at daycare this morning (Zoe goes to "school" Thursdays and Fridays and absolutely LOVES it as this story will demonstrate). I put her in her walker (she has been practicing walking into the school room on her own like a big girl) and she took off into the room. I put her diapers, food, etc away. Zoe had walked over to three other kids who were looking at the fish tank. I said, "Mommy is going to work now, can I have a kiss?" The kids had started to walk to the toy shelf. Zoe shook her head "no," signed "all done" and quickly walked toward the kids. I walked after her, got down on her level and said, "Well, mommy wants a kiss. I am going to kiss you now because I am leaving for work." Zoe grunted, signed "all done" and again walked away.
Little bugger! I have to beg my own daughter for a kiss! I know all parents say they grow up so fast but seriously- what attitude!
I love it though.
I love Zoe's sense of independence she has gained with this walker.
I love her confidence that she can wave me off with an "all done" and know that I will return later where she will whine at me like "Mommmmm, you left me alllllll day!"
Maybe then I will remind her- "Hey, you were the one who was too cool to kiss me in the morning!"
Monday, July 20, 2009
I got a picture of Zoe's most recent mess today- it's the one Genevieve described in her previous post. One bowl of yogurt- why wouldn't I want it on the floor? Good thing we have hardwood floors and not carpet! : ) Look at her eying that other bowl (egg salad) thinking "hmm, how can I reach that one?" Glad she didn't grab the blue water glass- it was full!
We are amazed (and still getting used to, obviously) just how quick (and accurate) Zoe can be. It is an amazing development, and she (and us) have worked really hard to get here. We are so proud of our little menace!
Gotta go- someone needs a nap. Oh, and so does Zoe. Love to all.
After two and a half years of attempting to teach Zoe how to suck, Zoe suddenly started sucking her fingers last week! This is a very exciting milestone for 1P36 kids. First, it shows that her mouth muscles are getting stronger. And second, it means that she will start sucking her fingers instead of biting them. Zoe has been pretty good about the biting but does occasionally bite so hard that her fingers bleed and she has a sore. She does seem to be aware of how hard she can bite before hurting herself. She was very happy to discover this new sucking skill- she gave her finger a few big sucks and then smiled and signed, "More, mommy." I kept laughing and saying, "You are doing that, not mommy!" Funny enough, she seems to prefer sucking the same finger I used to suck as a kid.
Other New Skills
Zoe continues to amaze us with her development. She is now able to better control where she is going in her walker. She can aim through doorways and 90% of the time is dead on. If she hits a wall, she is now able to get herself unstuck. Zoe can also move herself on thin carpets. She surprised us by taking off in our room this past weekend.
Gavin just called me at work to report that while he was setting up lunch, Zoe thought it was a good idea to zoom over to the table and pull the bowl of yogurt down onto herself, her walker, and the floor. Apparently she thought this was hilarious! I can't believe Gavin didn't take pictures- we are so proud of the messes she can make now. It seems like not too long ago when Zoe couldn't even bat at things with her hands. Now she is such a menace and gets into everything!
Zoe also began splashing in the bath in the last few weeks. She purposely splashes with her hands and kicks her feet to "swim." She loves floating in the life vest we bought for her. We even let her take it in the bath so she can get used to it.
Upper GI Results
We did not get the formal results of Zoe's upper GI yet, but the doctor who did the test mentioned that Zoe definitely has reflux (no surprise to us), but the test did not show any aspiration. We were very glad to hear this news. It still does not give us an answer as to why she gets these lung infections and why she is still running a fever (I think we are on week six now). But we recognize that there are not always answers. Zoe's pediatrician is going to see how severe the reflux is and then decide if she will start on a medication. The reflux does not seem to bother Zoe, but I guess we have to be sure it is not damaging her esophagus or lungs.
Only Ten More Days Until Our Big Trip!
We are busy packing and getting the house ready for our big trip. I added up how many miles/km we will be driving total and it looks like we will travel at least 2000mi/3200km.
Our itinerary: We head to Indianapolis next Thursday. Then to St Louis to visit family the following Monday. We will be there for a week before heading to Kentucky to explore Mammoth Caves National Park. Then to Pittsburgh for a work conference where I am presenting. In all, we will be gone 18 days. We really look forward to the time we get to spend together as a family. It will be busy but as long as Zoe stays healthy, I think it will be a really fun trip.
Friday, July 17, 2009
1) go to https://www.paypal.com/cgi-bin/webscr?cmd=_s-xclick&hosted_button_id=6114971
2) fill out the donation amount, billing info (credit card or Pay Pal account) etc. Apparently there should be a box somewhere that allows for comments, in which you can type in "Zoe's Phantom Tea Party".
3) Send us an e-mail with your address (and, if you don't mind, the donation amount so we can keep track) so we will know where to send your tea for you to enjoy and something special from Zoe.
4) sit back and wait for the tea to arrive. When it does, add hot water, add your favorite tea additive like honey or lemon or milk or sugar or Scotch or whatever, relax and enjoy!
Thanks to all who have participated so far. You are all our favorite people, and thank you for supporting something so important to us.
Tuesday, July 14, 2009
Zoe is happy to recieve donations via our address. We are also working on a Paypal possibility, so we will let you know if that works out. At this point in time our groups paperwork for charitable organization status is still pending, so we don't think we are able to give tax receits yet (though we might be able to by years end, so we will try to do so by then if we can) Should you wish to donate to her tea please contact Zoe's mom or dad via our e-mail at firstname.lastname@example.org.
Thank you for any amount you are able to donate. No amount is ever too small. So here goes the cheesy poems meant to bring tears to the eyes and make you open your wallets :)
WELCOME TO HOLLAND
I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......
When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting. After months of eager anticipation, the day finally arrives. You pack your bags and off you go.
Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland.""Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."
But there's been a change in the flight plan. They've landed in Holland and there you must stay. The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place. So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.
It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.
But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.
But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.
And if that didn't get you- here is another one:
What does it mean to be the parent of a child with a heart defect?By Anna Marie Jaworski (1996)
It means going into your baby's room a dozen times a night just to check and see if he is breathing. It means standing over the crib and watching for the chest to rise and fall and when you don't see it move you begin to panic and put your head down close to the baby's face to try to hear him breathe. It means that when you don't see the chest move and you don't hear the breathing (because your own heart's beating is drowning out any other sound in the room) you put your finger under the baby's nose to feel the warm air on your finger - until you wake the baby and he stirs - and you're thankful so thankful that he's still with you.
Wednesday, July 1, 2009
When I was pregnant with Zoe, I had no idea I would gain so many titles with her birth. I have come to be known as Zoe's: Occupational Therapist, Physical Therapist, Speech Therapist, Respiratory Therapist, Doctor, Nurse, Equipment Specialist, Advocate, Personal Secretary, and of course- mom. Now I can add Hairdresser Extraordinaire to the list!
For some reason Zoe refused to look forward for the pictures. I guess she was too busy playing with her toy. I don't think I would have done such a good job (and her hair would not be as even) without my lovely hairdressing assistant- Gavin :)
Still Sick but Going Camping
Zoe continues to run a low grade fever and sleeps a little more than usual but other than that is doing great. So we have decided to go ahead with our planned camping trip this week. We leave tomorrow after daycare and will return on Sunday. We all look forward to getting a little rest and relaxation.
Happy Canada Day!!!!!
This is our first Canada Day in four years that we will not spend with our American friend Amanda, which makes us a bit sad. But we still plan to take it easy today. We have to pack and do laundry (not very exciting) but plan to fit a wagon ride around the block in there somewhere. Pretty exciting, huh?
Opps, I should say "Pretty exciting, eh?" (For those Americans reading this- "eh" is pronounced "aye" and Canadians say it after every sentence they speak). What's that aboot, eh?
Thursday, June 25, 2009
Zoe is still not quite herself. She continues to run a low-grade fever and sleeps a lot. Her eyes have a hollow-ness to them that I couldn't really describe to the doctor. It's just a look she gets when she is sick. We took her to the doctor on Tuesday because we thought maybe she had a urinary tract infection. But her urine was fine. Which is great. But we still don't have an answer as to what is wrong. The doctor said her lungs sound good- so that was great news. So we are going to give her another couple of weeks and if she is still having fevers, we will take some blood cultures and do a chest x-ray.
For now, we just wait.
And watch every little sign that something isn't quite right.
We are not the type to worry. But when our gut tells us something is wrong and we aren't sure what, it worries me. This is not typical for Zoe. Typically it is very obvious that she either has a GI bug or a lung infection.
Zoe's Feeding Study
Good news on the feeding study though (and here I try to focus on the positive because I know how lucky we are that Zoe is doing as well as she is). Zoe did not aspirate on any of the food or liquid during the test. They did mention that she "double swallows" liquids and liquidity food. This means she brings the food under her epiglottis before pushing it forward and swallowing it correctly the second time. She also tends to store food in her mouth when she eats (this we already knew since she will sign "more" even when her cheeks are bulging with food!) Neither of these findings is concerning since it is not causing her to choke or aspirate on her food. We were very glad to hear this. Actually "very glad" does not really capture our relief. We were pretty sure she was not aspirating on feeds but worried what it would mean if she was. And so we are pretty freaking thrilled that we don't have to deal with that right now.
The Next Step
So the next step will be an upper GI test where Zoe will have to drink barium while they take xrays to tract where the liquid goes as she swallows and digests it. This may or may not show us the reflux she is having. Sometimes she refluxes well after a meal, not always during or right after. So it may not show up. We have made the decision to hold off on starting reflux meds since her lungs sound good right now. If she continues to get lung infections, we will again consider putting her on meds if we think she is aspirating on her reflux.
Thanks for the Support
Anyway, thanks to all of those who read this blog and keep us in your thoughts. I appreciate that I may type things that not all people want to read at times. But it is important for me to have somewhere where I can express what I am feeling. Gavin and I don't have many friends and our families live far away. And I have a feeling my colleagues want to scream sometimes when I am talking about Zoe, yet again. And so it is nice to be able to type whatever I want and people can read it or leave it as they want.
For now, I am going to pour myself a bowel of cereal (my comfort food). Gavin is working tonight. Zoe was so exhausted from her day at school that she fell asleep at 5:30 without eating any dinner.
Only she knows what her body needs.
And so I will creep into her room and watch her sleep.
Count her breaths.
And try not to focus on the blue hollows circling her beautiful eyes.
Monday, June 15, 2009
The feeding study is tomorrow and we are feeling a bit anxious about it. Since birth we have gotten pressured to put Zoe on a permanent feeding tube (G-tube). Some of the kids need this. But we have never felt that Zoe did/does. So it feels like this constant argument. We have agreed to the feeding study since she has had so many lung issues and we need to be sure she is not aspirating on her feeds. If anything, we think she is aspirating on reflux and this test won't tell us that anyway. And a g-tube won't stop her from aspirating on reflux. We know at least two 1P36 kids who have g-tubes and still have major lung issues.
Zoe is currently laughing like a maniac (she is supposed to be sleeping). So I am going to go eat my dessert and listen to my daughter laugh. She was determined to tell me something during dinner and it took us 15 minutes to figure out the exciting news was "Grandad gave me some milk today." She also wanted to swing on the swing outside after dinner with grandad. How could we say no when it took us so long to figure out her request? And so she got her swing in before bed.
Saturday, June 13, 2009
We have not had the official meeting at Zoe's daycare yet to decide if she will move up to the preschool class with her peers but from the conversations I have had with her teachers, I get the impression they think she is ready. They have mentioned that although Zoe is still at a 3-6 month level physically, they have seen such huge gains in her cognitive and social skills since she has started using the walker and stander. This does not surprise me. Initially we thought perhaps preschool in the fall was too ambitious. But since then we have been conducting our own little "tests" to figure out how much really is going on in that head of hers.
Every time we pick up two pair of shoes (one of Zoe's and one of mommy's) we will ask Zoe, "Where is Zoe's shoes?" Zoe will always pick the right pair. So this morning I tried, "Where is mommy's shoes?" And Zoe correctly identified mommy's shoes. I thought perhaps she was just picking which shoes she wanted to wear since we often hold two choices in front of her to pick but it is now obvious that she understands the question and knows the answer.
We tried asking Zoe about different body parts this morning so she could point them out on her doll. Zoe immediately pointed to baby's eye, nose, ear, head, mouth. When I asked about baby's hand, Zoe looked at her hand but did not point at it. A minute later, she did point at the hand. So I think that one question took her a minute to process. Even though she knew the answer and showed it by looking right away, it took her a minute to point.
Pointing Out Pictures in a Book
For a few weeks now we have noticed Zoe will point to pictures in the book that are typically funny (like Yertle the Turtle with mud on his head and don't get her started on how funny the picture of the little boy crying is!) and laugh. It is like she is showing us, "Hey look mom and dad, isn't that hilarious?"
In short- Zoe as always has amazed us even beyond what we would hope for!
Friday, June 12, 2009
Zoe back on tube feedings
It's been a busy week here. After three wonderful weeks of Zoe being well, she came down with another chest infection. She was choking a lot on her mucus and had a fever for six days straight. So after having to do the first step of CPR on her several times in one night, we decided it was time to take her back to the doctor's. The pediatrician prescribed an antibiotic to dry up the mucus. It began working right away but unfortunately zapped Zoe's appetite (which has happened before). We now have an emergency protocol to insert the NG tube at home after 12 hours of Zoe not peeing. And so, Sunday morning, while Gavin was in the middle of his third 12 hour shift in three days at the emergency room, I inserted an NG tube.
Zoe did great with the tube insertion. We have come up with a way of bundling her body and Riann (the respite worker) held her head. It was a rough week with Gavin working lots of hours (we are grateful for the hours/money but this week has been hard since it has been 18 days since the two of us has had a day off at the same time).
Thankfully, Gavin's dad Alan is here right now to help out. Zoe, as always has done amazing and maintained a great energy level throughout this latest illness. She even went to daycare for half of Thursday and all day today. In the past, we kept her out of school when she was on tube feedings. But given how great she was feeling, we didn't think it was fair to keep her home. Tonight we let Zoe take the tube out and hopefully she will eat and drink well this weekend.
Feeding Study Scheduled Tuesday
Zoe has a feeding study scheduled for this Tuesday. Due to her multiple lung infections and extra mucus in her lungs, the doctors want to make sure she is not aspirating on her food.
Saturday, May 30, 2009
Luke also did a great job supporting Zoe. It is amazing how quickly kids pick up on what Zoe needs in order to play with them.
A day at the beach in Toronto.
Genevieve, Ellen, and Grandma Sheena.
Ellen was so helpful with her cousin Zoe. At this time, Zoe was unable to get the sand to her mouth but she kept trying to eat it. So Ellen was nice enough to grab Zoe's hand (full of sand)and shove it into her mouth for her!
Tom's family getting ready for their long drive home to Oregon.
From the top- George, Ellen, and Kate.
Zoe and Brian. They kind of have the same expression in this picture.
Colorado, August 2007
Genevieve's brother Andy's family
Zoe and Jocelyn
Maggie, Aunt Sheri, and Andrew.
Missing from the photo: Faith.
Genevieve's brother Mike's family.
Aunt Bonnie, Francis, and Connie.
Missing from the photo: Michael, John, Sam, and Alex.
England, August 2007
Zoe is 6 months old.
These are Gavin's cousins from his dad's side.
Elaine and wee Zoe.