Sunday, December 2, 2012

More medical stuff for Gavin

Hey everyone,

interesting that the first two sentences from the last post say it's been a hard few months but that I was getting better. Well, I was. Really was. Back at work and looking at starting in a new area at work with more hours. Then came Sunday night a couple of weeks ago. I thought I had a migraine headache, not that an uncommon occurrence for me. The next thing I remember was my meds not working and me vomiting- a lot. Not a common ocurence. Then it was Wednesday morning and I woke up in the ICU with four point restraints on. Over the next couple of days I learned what had gone on. Geneveieve had gotten my dad to take to to the hospital around 2 AM- by the morning I had begun to act violent and out of character. I needed to be restrained by security at times and eventually tied down to prevent me pulling out my IV's and other tubes. I then lasped into unconsciousness till Wednesday, basically. Although the tests haven't been straightforward, it appears that I developed non infectious menengitis, possibly as a very late effect of my surgery in March for the spinal tumour. They thought brain hemmorage for awhile too, but that isn't the prevaling thought now. I am doing much better now. They have discovered an abcess of sorts near the surgery site which may be a pocket of infection that casused this. I'm waiting to get it aspirated by a needle under radiology to see if it is infectious still. I am on eleven doses of three different intraveneous anibiotics (amplicillin, vancomycin and ceftryaxon)for another five or six days now. I have a PICC (Perifirally Inserted Central Line Cathater) line in to get these meds.

So once again, Genevieve has benn unspeakably strong and wonderful. She has been looking after the girls who have benn scared and missing their dad while at the same time looking after me. During my incapactitation she had to answer questions on organ donation and advanced directives for me- fortunately if never got that far but the possiblility of me becoming that ill was a very real fact. I'm still working out what happened- I sort of feel I lost several days during whcich I almost died- I went from knowing I was sick with a headache to completely losing control of my behaviour and the awareness of what was going on. I'm feeling much better now and hope to get home soon- we'll see what we do from there after I get this test done tomorrow hopefully. I simply cannot imagine doing anything in my life without my incredably strong and amazing wife. The way she handles adversity of all types is amazing. With the excecption of watching my wonderful daughter Ailsa grow this has been a dreadful year for us. Zoe has had a lot of medical issues and pain issues that we have struggled to get a handle on. I had first the spinal tumour and now this development out of nowhere. All this looking after other people have contributed to Genevieve's own medical situation to the point she has now had to take a stress leave from work to deal with the mental and physical pressures of simple living our day to day life. Nothing I can say would sum up how strong she is and and how much I need her in this life. She is the strongest mother and wife I can imagone. Our life has been so unbelievavbly hard this past year (or two)and I know I never would have got through it without her. All I can say is thanks my love. Let's hope 2013 will get a little easier for us- other wise it will kill us all for sure : )

Friday, September 14, 2012

Playing with my Sister

It has been a difficult couple of months with Gavin recovering from his major surgery and me taking care of three people.  But Gavin is feeling much better and able to do more now.  He even returned to work in August.  He is working part time and hopes to increase his hours soon.  I have been very tired and burnt out this past month.  I figured I would wear down at some point so none of us were too surprised when it happened.  Thankfully during this busy period, Zoe has been in excellent health!  Everyone who knows Zoe says how great she looks right now.  She even put on a little weight which brings her up to a whopping 12 kg/ almost 26 1/2 pounds! 

Both of the girls have been doing great with so much change and stress in our lives.  They are both growing to be confident and loving little girls and it is such a pleasure to just sit and watch them play.  Ailsa has been missing Zoe since school started last week.  When Zoe got off the bus today, Ailsa went right over to her on the ground, gave her a big hug, waved her hand in her face and then pushed a toy at her.  It is very sweet to see how well they play together and how they interact.  They have even started signing to each other and sometimes I don't get the joke.  The other day at dinner, Ailsa signed "work" and Zoe just laughed and laughed and Ailsa laughed in return.  I asked, "What's the joke?  I don't get?" to which they just laughed harder. 

We are all hoping for a great school year with Zoe being well enough to attend most days.  Many 1p36 parents feel a bit of dread when winter approaches since it often means chest infections and more illness.  But we are being very hopeful that Zoe will have a better winter this year.  And if she does get sick, it is reassuring that vein access will not be an issue with her port in place.

 Zoe and Ailsa love to share this toy.  Zoe is in charge of pushing the button to start the music and ball blower.  Ailsa is in charge of catching the balls and putting them back in the toy.  I love how they came up with this by themselves.  They instinctively knew how to play to each other's strengths.

 This was a favourite summer activity on a hot day.  Both girls would end up soaked by the end of it.

So, here's to a great school year and a fantastic winter!

Monday, July 9, 2012

Now, This is the Life

Busy, Busy, Busy

Things have been very busy since I last posted.  Gavin is recovering steady but very slowly.  Zoe just finished her first full year of school!  And Ailsa continues to grow and change so quickly it literally makes me cry sometimes.

Zoe Medical Update

Medically, Zoe has had some ups and downs this past while.  Currently she has had either four back to back bladder infections (one literally right after the other) or one long infection that is not going away with oral antibiotics.  This last one happened on Canada Day (July 1st) which meant driving back from Grandma's the morning after we arrived and spending the day in the hospital.  We had gone to grandma's with the intention of spending four lovely days relaxing, not driving 3 1/2 hours on Saturday only to make the long trip again on Sunday!  The culture confirmed that Zoe did have another active infection.  Zoe is able to now tell us when she has pain which is great because it helps us get her treated faster.  Last year (same holiday weekend actually) Zoe ended up in the ICU just because of an infection we did not know was there.  So treating the infection quickly is key to Zoe not getting so sick.  I now email Zoe's complex care doctor more than anyone else and routinely call him by his first name!  He has been great at helping coordinate all of this.  We finally have Zoe's lung infections and seizures under control so we hope to figure this bladder thing out.  We go to yet another new speciality this week (nephrology) and hope they can shed some light on this problem.

The other medical issue which has been difficult to solve is going so much better- ZOE IS SLEEPING!  We started a drug to help Zoe but I was afraid before now to jinx it by celebrating.  Zoe sleeps awesome now!!!!  She stills wakes sometimes in the night but she is calm and quickly gets herself back to sleep.  No more listening to her scream for 4-8 hours a night!  If your child is having difficulty sleeping and you think there is an anxiety component to it, just email me and I would be happy to share with you what we have done for Zoe.  After 20 months of trying different things we are one word can actually express how relieved we are.  Mostly we are relieved to see Zoe so much happier because she is not so exhausted.  And these past four infections Zoe was able to recover more quickly because her immune system is functioning better now that she is sleeping.  If you do not have a child who literally spends more time screaming, hurting themselves and/or running around the house than sleeping, you can not understand what a huge deal for us this latest breakthrough is.  But I guess most parents can remember sleepless nights and every parent wants more sleep.

Summer Plans

In the mean time, we have made Zoe having as much of a life as possible as our biggest priority.  Well, really having us all have a life is the ultimate goal.  Zoe is doing two weeks of camp which is actually run at her school so she very excited since she was very sad when school ended.  We also hope to have Zoe start horseback riding therapy this summer.  With money being a bit tight (every parent who has a special needs child is nodding their head right now and thinking, when isn't money tight?) we had to change some of our summer plans.  We hoped to get to conference this year but just can't do it.  This made us really sad because reconnecting to other 1p36 families would be great right about now.  There is something really special about looking into the eyes of another parent who deeply understands what you are going through at times.  But the hospital has a cottage set up that you can go to for free a week at a time.  We did this last fall and it was great.  So we will get to do a little family trip this year.  The cottage was very relaxing last year, no cell phones, no computers, and no one was sick!  So hopefully it will be the same this year.  Oh but wait, won't Zoe's doctor miss my almost daily emails while we are away :)

Now, This is the Life

Easter Seals (which is a wonderful foundation) had a fundraising Regatta yesterday and asked that families volunteer to go on boats during the event. A chance to ride on a boat for free and get fed- sign me up! Originally it was just the four of us that were supposed to go but I hurt my back last week (yes, we don't have enough going on right now!) so we had grandma tag along to help with lifting. The girls had a great time and it was so fun to do something so normal for a day. None of us had ever been on a big sail boat- it usually takes six men to man this one although they did it fine with the four of them. The guys on the boat were super friendly and great with the kids. Zoe just laid back and relaxed the whole time. She even tried to help pull the ropes in when the guys were pulling in the sail. Ailsa looked like a little laid back sailor. She loved flirting with the guys and relaxing on the boat. It was really wonderful to have this relaxing day with my family. I try to hold these images in my mind when Zoe's fever starts or we have to see her go through yet another invasive procedure. I remind myself- these are the days that we are fighting for. This is why we are pushing Zoe and doing everything we can to get back to some sense of our normal.

 This is the beautiful boat "Orion."  Ailsa (always talking now) is signing "hat" which  means "Hey mom, where is my hat?  I am going to get sunburned out here!"

 Zoe relaxing on grandma and daddy.

 Sailor girl Ailsa watching over the horizon...or perhaps she was trying to count those pink umbrellas!

That precious Zoe smile!  Translation, "Now, this is definitely the life for me!"

Thursday, May 31, 2012

"Friends in Low Places"

Here's to Garth Brooks

Our friend Dorothy lent us a Garth Brooks CD.  Zoe is a HUGE country fan....Gavin and I are...not really big fans.  We accidentally discovered Zoe's love of country when we were driving in Utah after a 1p36 conference.  We rented a car and drove to see the Arches National Park.  It seemed that every station played country and when country was playing, Zoe was happy.  When a commercial came on, she would start crying again so we would find another country song.  Here in Toronto, we don't get so many country stations.  Just one to be exact.  And a new one which says it is country but often plays other music much to Zoe's dismay. 

Since Dorothy lent us this Garth Brooks CD, Zoe has wanted it to be played non-stop when in the car.  And so Garth gets stuck in my head.  And I wanted to do a post about some of our friends and how awesome they are and "Friends in Low Places" is currently playing over and over in my head driving me a bit mad!  And now anyone who has ever heard that song is now having it play in their heads too!

The hilarious thing about the Garth CD is that Zoe finds the rodeo song the most relaxing.  It is the song she often falls asleep too (something Zoe hardly ever did in the car- she would usually just get overtired and cry but that was before Garth!)  So forget those relaxing classical CDs I had been playing for her.  Forget the slow music- bring on the rodeo song:

Well it's bulls and blood
It's dust and mud
It's the roar of a Sunday crowd
It's the white in his knuckles
The gold in the buckle
He'll win the next go 'round
It's boots and chaps
It's cowboy hats
It's spurs and latigo
It's the ropes and the reins
And the joy and the pain
And they call the thing rodeo

And now that song will be stuck in my head for the rest of the day.  Well, I guess if I can't fall asleep I will sing myself this relaxing fast paced song.

We have been very fortunate to have so many supportive friends.  I am not sure if they are in low places....actually I am not really sure what that means exactly but I am pretty sure I don't really want to know!  It is amazing how touching a simple gesture can be.  Dorothy helped me bring the girls to visit Gavin in the hospital after surgery and she noticed Zoe calmed down when country was on the radio.  I explained that we do not have any country CDs and she immediately grabbed the Garth CD from her car as soon as we got back to the house.  That was so thoughtful of her....well I think it is thoughtful but Garth is kind of driving Gavin mad at the moment...too bad daddy- it isn't about what you want!

Relaxing Spa Day at Lyn's

Our friend Lyn invited us over so the kids could go swimming.  I asked our respite worker, Alison, to come along to help so Gavin and I could take it easy.  Alison showed up with breakfast and coffee.  When we got to Lyn's, Lyn and Alison took over with the kids and they were awesome.  Lyn cooked us a delicious lunch (during which time Ailsa was napping so I actually got to eat it!)  When both kids got up from their naps, Lyn and Alison took them swimming while Gavin and I slept.  After nap time, a nice hot shower with no one sitting on the floor babbling "ma ma ma ma ma ma ma ma" while I play peek-a-boo with the shower curtain to keep her entertained (this may have been my favourite part of the day).  Lyn cooked another delicious meal and then gave both Gavin and I spa treatments on our hands.  I think Lyn should open up a respite place for parents.  The entire day was so relaxing and felt like a real break from everything.  The girls had a great time.  Only downside is that I think we completely exhausted Alison and Lyn!  They seemed to struggle to get the girls to the pool (some excuse about multiple poopy diapers but you would think with two Early Childhood Education degrees between them they would be able to handle this!)  And Alison said that Ailsa exhausted her.  My angel?  I laughed and said, now imagine driving them home, getting them both ready for bed, give Zoe all her meds, nurse Ailsa and see what laundry needs to be done!  It was so nice to get away from all of that for a day and to be taken care of.

I love Zoe's look of pure joy while swimming with Lyn.  She had this smile the entire day when playing with Lyn.  And yes, Lyn, I promise to send you the photos!

Zoe passed out right on the rug after swimming.  She was tired!

Thank you to all of our friends.  You all rock!

Saturday, May 19, 2012

Glimpses of Light in This Long Dark Tunnel

Treading Water

Ever since Zoe was born, I've felt like we were treading water. After the first initial weeks of fearing that Zoe would not live, we received her diagnosis of 1p36. This was better than what we thought but not a hopeful diagnosis. The medical articles we were given were very negative and stated many things our baby would never do.

Still, we felt hopeful.

As time went on, we met other families who have children with 1p36.  This was great in many ways, a little overwhelming in others.  We glimpsed what the future could possibly hold.

And still, we felt hopeful.

As time passed, we realized that Zoe's disabilities were in the "severe" range.  We saw that some children with 1p36 walk, talk, feed themselves, etc.  We were hopeful that would be Zoe.  But it seems that Zoe is not one of those "lucky" children.  We love Zoe for exactly who she is.  And we are lucky that every day we see Zoe push herself and move forward.  Progress does not happen quickly and takes a lot of effort from all of us.  But still, we see Zoe gain new skills all the time.

So still, we feel hopeful.

Taking care of Zoe is physically draining.  But most of the time it is the emotional strain that gets harder and harder to cope with.  We struggle to get through the day, just to survive.

Here we are, treading water, watching other families on the shore making sandcastles with their kids.  Running around, splashing in the water.

It gets a bit lonely in the water.  Most of the other families treading are like us- too busy and exhausted to keep in touch much.  Just getting through the day takes all of our efforts.

But look closely.  There on the shore- a child sitting by himself, cramming sand into his mouth.  Practically choking on it.  Just like Zoe with sand.  Hey- if we get back on the shore for a visit we can chat with that family.  They'll understand if our only communication is postings on a blog.

Last year Zoe spent 196 days at the hospital.  How do we maintain any type of life for her, for us when over half of her year is spent staying at the hospital or waiting around all day in a clinic?

And yet still, we do actually feel hopeful...
Most of the time.


This is Zoe's blog so I won't comment too much on Gavin.  But his being sick has put a lot of strain/stress on all of us.  Physically, Gavin is just starting to take care of himself again.  For two months I have been physically caring for three dependent people, two of them with serious health needs.

Gavin's recovery will continue to take more time, perhaps months.  I am not sure how much more I will be able to do physically for my family.  I am sleep deprived.  Exhausted.  My muscles are sore.  And on a good day I get to eat three meals. 

And yet, I have to stay hopeful.
Because this is our life.  What else is there to do?

People in our lives have been incredible in showing support- dropping off meals, helping with the girls, staying with Gavin when I need to go to an appointment with Zoe, giving us gift certificates and money.  We are so incredibly grateful for this support.

And I guess that is why I have to stay hopeful.  Because there are good things and good people in our life.  And we enjoy the little moments- like time spent outside, seeing Zoe smile again, and celebrating a very important birthday!

Zoe loves the wagon, Ailsa still isn't so sure.  Gavin walked around the entire block himself while I pulled the girls!

Zoe's sign teacher says that Ailsa has "ASL eyebrows."  This is one of her favourite expressions at the moment.  Zoe is signing "Ailsa."

The girls got all dressed up for Ailsa's first birthday last Tuesday!!!  We had a wonderful party with just grandparents and us.  It was a beautiful day so we ate out on the back deck.  Ailsa was hilarious with the cake.  No smashing the cake like we expected, instead she carefully picked at it and ate the entire piece.  Zoe tasted her piece and signed "All done."  When I asked her what to do with her piece, she signed "Ailsa."  I don't want it- give it to my sister, she obviously loves cake!

Tuesday, May 1, 2012

Getting a Port

Thursday is the Big Day!

Zoe is scheduled to have a port inserted and minor eye surgery on Thursday. It is not great timing with Gavin still recovering, but we are all very eager to get this over and done with. We have known for some time now that Zoe needed a port but had to wait until she was well enough to put one in. A port is a small medical device that will be inserted under Zoe's skin in her chest area. It will make access to her vein significantly easier in the future. Given that Zoe has had some serious illnesses in the last year and they were not always able to access her veins, we are excited to get the port in. It will make things much easier on Zoe. They can give her fluids and take most blood tests from the port. So future hospitalizations should only involve the one poke to access the port.  This last hospitalization involved Zoe being poked by multiple people for almost 18 hours.  She even went to a procedure room so they could ultrasound and scan her veins while poking her but still were unable to get a line in her.  It was heartbreaking to see Zoe go through that.  And also extremely scary since Zoe was not doing well and needing a lot of oxygen at that point.  We were worried what would happen if Zoe got worse but thankfully she started to improve.

We are also very excited to get the eye surgery done since Zoe is having a very hard time with her dry eyes lately. We can see how uncomfortable she is and we worry about long term damage. Zoe had temporary tear duct plugs in the past that worked but they have fallen out. So now the surgeon is going to permanently close off at least two, possibly all four of Zoe's tear ducts. Zoe does not produce any tears and the moisture that her eyes create is currently being drained off by the ducts. So closing off the ducts will allow Zoe's eye to maintain a better level of moisture. We will still need to continue to administer tear gel four times a day after the surgery but hopefully Zoe will be more comfortable and better able to tolerate light. When your eyes are dry, you become more sensitive to the light.  And Zoe is already very sensitive to light so it makes it more difficult for her to enjoy being outdoors.

Gavin is hoping to be at the hospital with us before Zoe goes to sleep.  He will then head home and stay home while I stay with Zoe.  I have a schedule of helpers to be at the hospital with me so that I have someone to help with both the girls.  Since Ailsa is still nursing, she needs to stay close to me.  I think we will all be exhausted but glad that this is done with.  Zoe will be in hospital two or three nights, depending on how things go.

Is Excited the Word Here?

It is weird to say we are excited when really, we are very sad that Zoe needs a port.  We were hoping that Zoe would have a good year and not need this next step.  Zoe had a PICC line last summer and we were very hopeful that was a one time need.  Instead, we have found that Zoe has had several critical illnesses in the past 10 months.  But, here we are, we might as well embrace this next step and celebrate how it will make things easier and safer for Zoe.  So yeah, I am going to say we are excited but there are definitely some other emotions going on here...

Saturday, April 14, 2012

A New Birthday Tradition?

Three days before his birthday, Gavin was admitted for unplanned surgery to remove a tumor from his spinal cord. The girls and I baked daddy a cake and went in on his birthday (the day before his surgery) to celebrate. Hmmm, first Zoe's birthday spent in hospital in February, now Gavin in March. I really hope Ailsa doesn't feel left out and have something planned for her birthday in May! Ailsa is showing off her signing skills by signing "daddy."

Zoe enjoyed spending time with daddy while eating a nutritious snack before dinner. Gavin's hospitalization was really hard on Zoe. She missed him and worried about him. She frequently woke in the night crying and signing "daddy." I was able to bring her in to visit Gavin a few times and I think that helped her to see that he was ok.

While Gavin was in the hospital, Uncle Andy was in town for one day on a business trip. Zoe really loves her uncle Andy. After his visit last year and this year, Zoe continued to sign "A N" asking about Andy. We saw a doctor last week who looked a little like Uncle Andy and Zoe got excited and kept signing "A N" over and over. Having Andy visit was a good distraction for Zoe. And Andy (being my big brother) was a good distraction for me- he made sure I had three meals that day!

Zoe has always been a daddy's girl, even as a baby. She is getting lots of snuggle time with daddy right now. Some of the time, the snuggles end up with both of them asleep!

Enjoying a beautiful day on the back deck. The weather has been beautiful here and we are taking advantage of it. Yes, that is a feeding tube in Zoe's nose. As if we didn't have enough going on, Zoe was sick all of last week. But she is doing much better this week and got to go to school every day.

Here's to sunny days and speedy recoveries!

Friday, March 9, 2012

Keeping In Touch

I think everyone struggles to stay in touch with people as we grow older. It is especially difficult when you live far away from someone. Gavin and I have struggled with how to stay in touch with people who are important to us while still making time for our own family. We have such little time with Zoe that is not spent feeding, medicating, going to appointments, bathing, dressing etc. Now that Ailsa is here, it is even more difficult to find any extra time. When Zoe is well, we want to spend every spare minute playing and doing fun things with her. When Zoe is not well, all of our time and energy is taken up with caring for her. Gavin's grandmother passed away last year and we regretted that we were not able to write her as often as we wished we had. So we have made a resolution to make time to stay in touch with people. We have been better at updating this blog and keeping people informed about what is going on in our lives. But we know this blog does not replace a handwritten letter, email, or a phone call.

Remembering Joan

We just found out that a woman we used to work with in Philadelphia died this past week. Both of us remember Joan as a very sweet and dedicated teacher. She would get excited and share in your joy. She always had something encouraging to say. And even when Joan was frustrated with a person or a situation, she still would comment on the positive. Sadly, we lost touch with Joan in the last few years. When we first moved to Toronto, I kept in touch with email. We also visited with Joan when we went to Philly for my brother's wedding when Zoe was a baby. We even talked about visiting with her this past December but recognized that it was the holidays and we weren't in town for very long. As it turned out, we would not have been able to visit with her anyway due to Zoe breaking her arm. But still, I do regret that we did not keep in contact.

Joan gave us a tree ornament that says "Our 1st Christmas" after Gavin and I announced to our colleagues that we had snuck off to the Caribbean and eloped. We still hang this ornament on our tree every year and talk about how sweet it was that Joan had gotten us that. Such little gifts that meant so much.

That is how I remember Joan- always sending out a Happy Birthday email or getting a little something to let you know she was thinking of you. Joan had taken care of our fish while we were away on that Caribbean trip and we brought back a little hand-blown glass fish for her as a thank you. I hope she kept that fish and it made her happy to think of us.

Joan gave Zoe a pair of very cute pajamas that now fit Ailsa. We put them on Ailsa last night and thought of Joan. We are thinking about her family (Joan was always bragging about her children) and feel thankful that we got to know Joan. We can only imagine the pain her family is in now. We know Joan will be very missed.

Zoe at 13 months. Joan got to see this picture because I sent it to her in a thank you email.

Ailsa this morning at almost 10 months.

Saturday, March 3, 2012

Two Against One

The Shoe Thief

Ailsa has a habit of chewing on the bottom of people's shoes. She especially loves to chew on Zoe's shoes- yum! Obviously, we are discouraging this habit but it doesn't help when Zoe is encouraging her by giving her shoes!

The other day both girls were playing on the mats. I took off Zoe's shoes and Ailsa quickly grabbed one and started going to town on it. Much to her dismay, I took the shoe away and placed both shoes well out of either girls' reach. As I did this, I said something like, "Zoe has been walking around school all day, her shoes are dirty. Shoes are not for eating." I left the room to get something and when I returned, I could hear Zoe giggling- always a sign she is up to no good!

As I peeked into the living room, I saw two things going on simultaneously:

1. Ailsa was loudly vocalizing at Zoe while reaching one hand toward the desired shoe. After years of having a non-verbal child, we have learned to interpret body language and vocalizations. But I think this would have been pretty obvious to anyone watching. If Ailsa could speak, she would be saying, "Sister, grab me that shoe!"

2. Zoe was deliberately rolling back in forth to reposition herself next to the shoes. All the while she was giggling her head off. I interpreted this to mean, "Don't worry sister- I'm on it!"

Zoe finally positioned her self close enough to the shoes. She grabbed the shoe and handed it to the very excited Ailsa who immediately began chewing on it. All of this was quite hilarious to Zoe who then did a double roll away from Ailsa and the shoes and began innocently playing with a toy. When I entered the room and said, "How did you get that shoe?" Zoe looked at me with a very serious face and said nothing.

Hmmm, perhaps we shouldn't be encouraging the girls to communicate so well!

This picture is kind of dark but you can see how Zoe rolled away from "the scene of the crime."

Thursday, March 1, 2012

What is Normal?

With Zoe needing to be in the hospital from time to time, Gavin and I try to minimize the stress of being in hospital on Zoe and Ailsa. Both Gavin and I do this in our work so it comes a little more naturally for us. We wish that being critically ill was not part of who Zoe is, but as time has gone on we have accepted that this is indeed a part of her life and therefore, part of our family's life. Photo albums have pictures of Zoe with tubes, Zoe hooked up to a breathing machine, Zoe in equipment, etc. This has become our normal in a way that we did not expect. For all of Zoe's life we knew we had a child with special needs. We saw the impact on her development. We saw our house fill with equipment. We cheered as Zoe reached any new step in development, no matter how small. Accepting that Zoe is critically ill at times was harder for us to accept as our "normal." We love Zoe and can not imagine life without her. And hopefully we will never know what that is like. So for now, we celebrate our life as it is. We celebrate our normal.

Zoe having fun with the music therapist. We seek out people like this to help Zoe have fun and make good memories in the hospital.

Having a silly sister clinging to your arm definitely helps to lift Zoe's spirits. Can you imagine these two on a rollar coaster? What are they looking at? Daddy was trying to make them smile for the picture.

Daddy succeeded in making one of the girls smile!

Thank you to all of our friends and family who are there to celebrate the steps along the way. Zoe really is an amazing little girl and it is a joy to watch her grow.

Friday, February 24, 2012

Heading home

Things are looking up. We are heading home in a couple of hours. Zoe was off oxygen all yesterday. She was on a little overnight for a sleep study- unfortunately she didn't cooperate and stayed awake until 3:00 in the morning(the study ran till 6AM). She has been a tired little girl today : )

We decided to leave the NG tube in for a little while longer, just to make it a little easier on her (and us) to stay hydrated and get her meds in. We will still have to revisit the issue of home oxygen at night for Zoe's sleep apnea (great, another new dignosis!) and look at putting a Port in for IV and bloodwork access in the future. We also need to plan Zoe's eye surgery (they are planning on closing Zoe's tear ducts to treat her dry eyes caused by her lack of tear production) but for today we are going home. It will be nice to just relax in our own space as a family. We've been here for 13 days- Genevieve and Ailsa have been going home most nights while I stay here with Zoe. I did get to spend one night at a nearby hotel- very fancy! Between work (both Genevieve and I work at the hospital Zoe is treated) I have been here for the majority of 16 days. Begins to feel like you live here. It will defianetly be nice to be home. I have missed having my girls together. Thanks to everyone to helped out while we were here with giving us breaks, lending an extra set of hands, buying us tea etc.

Zoe is always on isolation when she is in and not able to use her walker, which is very hard on her. We try to bring in her walker round about the time she is getting released so she can triumphantly walk out of here on her own terms. I am looking forward to seeing that today.

Wednesday, February 22, 2012

A step forward, a step back

Not a Good Day

Zoe had a rough night last night and required several breathing treatments as well as more oxygen. Gavin said she took a long time to fall asleep because she was wired from the steriods in the breathing treatments. This morning Zoe was not feeling well and continued to need more oxygen.

Yesterday was a great day- Zoe was feeling pretty well, had lots of energy and enjoyed all of the special birthday attention. Perhaps she just wore herself out and needs a bit more rest. The doctors keep saying this may "take a while" to clear up.

So, we will just keep waiting....

Tuesday, February 21, 2012

Happy Birthday Zoe!!!!!

Alison (Zoe's respite worker) found yet another singing animal that Zoe loves to play over and over and over again!

Ailsa showing off the picture Zoe made her.

Play is serious business for both girls! It is great to see them playing side by side again.

Medically the Same

Medically things are pretty much the same. Zoe still requires a lot of oxygen. A lot of the puffiness in Zoe's skin has gone down but she still has too much fluid in her chest. She continues to have fevers and she is complaining of chest pain consistently now. Her communication cards come in handy for assessing her pain level.

However, mood wise Zoe is doing leaps better. She is smiling, laughing, playing, eating and signing. She tires easily but this is no surprise. The staff are amazed at what a great mood she is in considering how she is doing medically. Several people have commented what a fighter Zoe is and what a pleasant personality she has.

I am headed to the hospital shortly to celebrate a very important day with my girl- Zoe's 5th Birthday!!!!!!! I have dresses picked out for the girls to wear, the hospital is getting her a cake and some gifts, and I asked a very dear friend to be in charge of decorations because I just don't have the energy.

So I think it is going to be another great day with my beautiful girl.

Saturday, February 18, 2012

Holding Our Breath

Another Good Night

Just got off the phone with Gavin- Zoe had a pretty good night. She had an episode of some breathing difficultly around 5am and they gave her a steroid breathing treatment and that seemed to help. She is currently getting breathing treatments every four hours and she continues to need a lot of oxygen. But Gavin said they both got some sleep last night.

Ailsa and I came home last night to get some rest. Ailsa was having a tough time sleeping away from home and spending the entire day at the hospital. I am hoping that Zoe remains stable and Ailsa and I will spend the day at home. I get the fun job of doing the laundry and paying some bills! It is difficult to do any of that when all I want to do is sit by Zoe's side holding her and singing to her. We also started to read Harry Potter but I am skipping any of the scary parts.

The Plan

For now we are keeping a close eye on Zoe's oxygen needs and any sign of a new infection. She spiked a fever last night but it seems to be ok this morning. We will have to spend yet another holiday at Sick Kids. (For you Americans reading this- Monday is a holiday called Family Day in Canada....I am not sure but I think it is just an excuse to have a day off in February. We have a few holidays like that here and I like it!) And poor Zoe will have to spend another birthday in hospital. They ordered a birthday cake for Zoe for Tuesday and asked what type of gift she would like. As long as Zoe continues to be stable, Gavin will work again on Sunday and Monday. It is very difficult to for him to work right now but it is what needs to be done for our family. He missed a shift on Wednesday but was able to work most of Thursday and all of Friday. Anyone in the Toronto area who wants to stop by and lend a hand with the girls is more than welcome!!!! Sheena is leaving for a 6 week Australia trip tomorrow so we will be short that extra pair of hands.

Zoe's chest is sounding "different"- a lot more crackles and noise. Which could be good, it means the mucus is moving around now. When I listened to her chest earlier in the week it was eerily silent in the lower lobes because she was not moving any air there. So hopefully crackles is moving in the right direction. They ordered chest physio with suction twice a day. They don't want to move the mucus too quickly so we are not supposed to do our own physio. We just get Zoe up into a chair a couple times a day and she sits up in bed so she is not lying down all the time. Any time we put the bed flat to change her diaper, Zoe's oxygen levels quickly go down despite the all the oxygen she is on.

We don't know yet if there is any damage to her heart. The team is not focused on that right now. It is more important to address Zoe's breathing issues and the fluid in her chest.

So that is where we are at.

Thursday, February 16, 2012


not a great day today. After last night it didn't get a whole lot better. Zoe lost her IV last night and we spent a good part of the day today trying to get a new one while coordinate her care. She went to get a different type placed using ultrasound but after 2 tries we were unsuccessful. They put a small one in a vein in her forehead just in case she needs it but it might not be much use as they have to be really careful what they put in it as it is so close to her eyes and face and if it blows it could be bad. We were able to be with her for the whole thing though, which was good- Genevieve comforting and distracting Zoe and Gavin holding her arm in a variety of positions while the nurse tried to get it in. Zoe's veins are all just too small, blown or blocked by the amount of fluid in her tissues. Plus she went about 14 hours with no fluid so she was dehydrated again. Right now I am just sitting here, typing this and occasionally getting up to repostion Zoe's oxygen mask (she needs both a mask and nasal cannula's to keep her oxygen level up) and trying to prevent her pulling out her somewhat minimally taped IV.

She was poked around 14 times told today- no sites for IV's of bloodwork left. If she gets sick again toinight we will have to move onto other even more invasive options. Genevieve and I have been kicking around the idea of getting a PORT put in Zoe- an implanted IV reservoir that gets access by a needle when required. Some risks but now we are definately going to move ahead with it when she is healthy enough to get it. We can't keep doing this to her- it's just not safe.

Just gave Zoe a breathing treatment- 9 PM. Desat-ing somewhat.

Zoe has a viral infection on top of her bacterial urinary tract infection- human metapneumo virus (hmpv). Two for the price of one, I guess.

Today was a frustrating day- it seemed like her health care team was very disorganized and what one team thought didn't match up with what the other team was thinking. It came together later on and we ame up with a rough plan for if she has a good night and continues to improve or if she has a bad night like the last two and she startslooo to get worse. As it stands they are hopeful that she will stay stable and get better with the various treatments, time and her own healing. Time will tell, I guess.

Genevieve went over to hotel with Ailsa and my mom and I'm staying here tonight- I really did not want to be away tonight and Genevieve really needs her sleep (and Ailsa too!)

Anyway, not all bad- there could be some improvement if she doesn't get worse overnight. We'll see what tomorrow brings.

thanks for all the support and good wishes. we'll hope tomorrow is an easier day.

love and stuff

Another Rough Night

Zoe was feeling better last night and we were feeling hopeful she was past the worst of this one. Sheena (Gavin's mom) got a hotel room near by the hospital so Gavin and I could get some sleep and be close by while she stayed with Zoe. This was wonderful for the first two hours where we slept soundly. The nurse called around 2am to let me know some things were happening with Zoe. I left Gavin and Ailsa sleeping and walked over to the hospital.

Zoe's oxygen levels have been dipping dramatically for the past couple of hours. They have upped her oxygen and given her breathing treatments. The critical care team has come back around (they just discharged her last night). They are concerned that her chest xray shows even more fluid in her lungs and now her heart is more enlarged. They are going to get an echo to see how her heart is doing this morning. They do not believe the fluid in her lungs is a pneumonia. Instead, it is extra fluid seeping into her chest cavity and other organs.

So that is where we are at. This hospitalization we have been lucky to have both of Gavin's parents here with us. Both of them moved to Ontario recently. Alan is a five minute drive from our house and Sheena is about two hours away. It has been so helpful to have an extra set of hands to help with both of the girls.

The Plan

They are going to check out how Zoe's heart is doing. They are giving her diuretics to get rid of the extra fluid and hopefully that will relieve some of the pressure on her lungs at the same time. Zoe lost both of her IVs so we will be consulting with people about using ultrasound to guide the next IV and hopefully that will work.

Thank you everyone for your comments and for keeping us in your thoughts!

Wednesday, February 15, 2012

Rough Couple of Days

Zoe has been slowly getting worse rather than better. Her chest xray yesterday shows fluid in her lungs. She is on oxygen and they had to slowly increase it throughout the night. Her blood results are showing that she is having some issues with electrolyte balance despite the fact that she has been on IV fluids the last three days. She stopped peeing yesterday and had to be catheterized but she did start up again this morning on her own. She has lots of diarrhea from the strong antibiotics she is getting.

So all in all, not a good couple of days.

Gavin, Ailsa and I all slept here at the hospital last night because Zoe was not doing very well and they were thinking of transferring her to the critical care unit. Right now the critical care team is in charge of her and making all the decisions but they are hoping she does not have to move to the unit. We hope so too. The CCU is a difficult place to be- Ailsa is not allowed to visit, there is no bed for one of us to stay with Zoe, and it would mean that Zoe is sick enough to be there. So we are hoping to avoid that.

I will try to keep this updated when I get a chance.

Monday, February 13, 2012

Zoe in Hospital

Another Emergency Room Visit

So far 2012 is not turning out to be as hospital-free as we hoped it would be. Ailsa had a cold all last week. We tried to keep her away from Zoe but that is difficult and as anyone with children know, it is kind of inevitable that once one child is sick, the other is sure to follow. Zoe started with fever and cough on Thursday. By Saturday she was not drinking very much and I was concerned with her colour- her nailbeds were turning blue and it was hard to tell if it was from dehydration or low oxygen. Zoe's reflux was really bad and she was choking every time she coughed. But we wanted to give Zoe some more time so we did not take her in then. It is a difficult balance with Zoe. We don't want to rush to the hospital every time she is sick but we also want to do everything we can to help her feel better faster.

Sunday morning Zoe seemed a little better but by Sunday night it was obvious that Zoe needed to go to the hospital. As we were getting ready to leave the house, Zoe had a huge vomit and wet poop which made us say, "Yes, we definitely need to go in now because she is already dehydrated."

Seizure in the Car

It was difficult to tell if Zoe was in and out of a seizure or just out of it while we were getting ready to go. Gavin loaded Zoe into the car and right away she started having a full on seizure. Gavin rode in the backseat with her and gave her the emergency medication to stop the seizure. The seizure lasted 15 minutes but did stop before we got to the hospital. At the hospital, Zoe continued to have small seizures so they decided to give her a "loading dose" of a strong seizure medication. We were nervous last night when they gave her this because the last time they loaded Zoe with this medication she ended up with aspiration pneumonia on a breathing machine in the ICU. But everyone was aware of what happened before and they watched Zoe closely. They also limited what medications and liquids went into her mouth and gave her a medication to stop her reflux/vomit.

So Far, So Good

It has been 12 hours since Zoe got the loading dose and she has not seized. Her lungs also look good on xray. I called the nurse this morning and she said that Zoe had a rough night but is sleeping soundly now. Gavin is sleeping, Zoe is sleeping, Ailsa is sleeping...I should be sleeping. But I find it very difficult to sleep when Zoe is away from me.

A Conversation Between Sisters

On Saturday I witnessed a sweet conversation between my beautiful girls. We were all in our bed and Zoe was upset and signing, "Ailsa." I said, "Ailsa is right here Zoe, do you want to tell her something?"

Zoe: "hurt"

Me: "Ailsa, Zoe wants you to know that she is hurting right now."

Ailsa: points at her teeth

Me: "Zoe I think Ailsa is asking if your teeth hurt. She is getting two new teeth so she probably thinks your teeth hurt too."

Zoe: shakes her head "no" and again signs "hurts"

Me: "No Ailsa, it is not her teeth that hurt. I think Zoe is hurting all over from her fever."

Zoe: reaches out to grab Ailsa's hand

Ailsa: reaches out and gently pats Zoe's hand with one hand and her forehead with her other hand

Me: "Does that make you feel better Zoe? Do you want your sister to hold your hand?"

Zoe: continues to hold Ailsa's hand while signing "Ailsa"

Friday, January 13, 2012

Here's to 2012!

Here's to Hoping it's a Good Year!

2011 Ended With Another Hospital Stay

We visited my brother and his family in Philadelphia for Christmas. After the 12 hour car ride, we were relaxing at Joe and Kristen's house and hoping to have a nice visit. Within the first hour of being there, Zoe broke her arm! Of course it turned out to be complicated and needed surgery. Surgery led to Zoe developing an allergic rash which looked like a burn and was extremely itchy. 8 of the 11 days we were in Philadelphia were spent at the Children's Hospital- not exactly what we had in mind for our holiday.

Christmas Day in the hospital.

Some Fun Time Too

Unfortunately, Zoe did not get to spend much time getting to know her cousin Sydney and Sydney did not get to see much of Zoe. The days that Zoe was out of the hospital, she was in a lot of pain and very unhappy. Ailsa did get to spend some time with Sydney and learned some important new skills from her like growling! Sydney quickly picked up Ailsa's "milk" sign and by the end of the visit she signed "milk" while I was nursing Ailsa.

The last two days of our trip we were able to get to the park. The weather was beautiful and the girls had fun.

Ailsa and Amanda

Zoe loved the merry-go-round but Ailsa wasn't so sure.

Home Again, Home Again

It has been a rough couple of weeks. Zoe was itchy from the rash and complained that her arm was hurting her. We were surprised she was still having so much pain until she had the cast and pins removed last Monday. They discovered that one of the pins had been rubbing Zoe's arm and had created a deep opening. Everything else looked fine but Zoe still has two small holes from two of the pins and one larger hole. She is much more comfortable now that the pins are out.

Hospital Again, Hospital Again

Zoe was in the emergency room last week with what looks like a gastro bug. We then had to keep her hydrated with NG feeds. Hmmm, so far 2012 is not shaping up as we would like it to be...

School Again, School Again

Zoe finally returned to school yesterday and had a good day. Today she was all smiles when she came home from school. It has been a month since she has been in school so I expect it will take a little adjusting to get back into the routine. Unfortunately Zoe has appointments at the hospital on Thursday so she will miss that day and school is closed on Friday. Perhaps it is good to start with a shorter week anyway while Zoe adjusts.

Zoe Interprets for Ailsa

I am trying to keep this post brief but there has been so much going on. One last thing:

Ailsa still insists on signing "milk" to mean mommy. I don't mind, I actually think it is kind of cute. A friend was over the other day and Ailsa signed "milk." The friend said, "Do you want milk Ailsa?" Zoe signed "mommy" meaning "She wants mommy." Later, Ailsa was eating and kept signing milk. Zoe then signed "eat" meaning "She wants more to eat." It is amazing how Zoe picks up on what Ailsa means and is able to help others understand what Ailsa wants.

Sigh....I don't know why I should be surprised when I have the two most amazing girls in the world!