That's My Milk!

So many times people ask me how Zoe and Ailsa like having a baby sister.  I laugh to myself thinking, they should be asking- "How does Willow like having sisters?"  Willow crawls around here like she owns the place!  It doesn't occur to her that her sisters were here first.  She is at the stage where everything is "mine" and sharing is something her sisters need to do for her, not vice versa.  

Willow has such animalistic behaviours that it cracks us all up.  Whenever I am cuddling Zoe, Willow races over and will nip at my leg to get my attention while frantically signing "milk, milk, milk" as if she is saying, "Hey- thats my milk- back off sister!"  If Zoe is close enough for her to reach- she will slap Zoe's head or poke her in the eye.  Now, just to be clear, a good old poke in the eye could also be a sign of affection from our dear Willow.  In fact, her annoyed actions tend to look at lot like her sad actions, or happy actions, or bored actions, or...you get the point.  Zoe finds this behaviour HILARIOUS!  She just sits there and takes whatever Willow is dishing out.  Zoe says she remembers Ailsa acting this way but in my mind, Ailsa and Zoe have been such buddies that I don't really remember this phase.  

 Ailsa sometimes positions herself between her sisters to help remind both girls to be gentle with each other.  You can see Ailsa holding Zoe's arm down without effort.  Ailsa knows that Zoe can not always control her limbs as much as we would like her to.  We love that Ailsa has learned how to keep her body safe/ comfortable around Zoe rather than avoiding her.  

I love this picture.

Zoe Critically Ill

Zoe was critically ill a couple of weeks ago.  It has been a long time she she was as sick as that.  It seems like Gavin and I forget how medically fragile Zoe is and how easily her system goes out of whack.  To sum it up here is what happened:

-Zoe threw up a couple of times on a Wednesday. We gave Zoe clear fluids through her g-tube and some nausea medication and Zoe was fine.  We touched base with her complex care nurse practitioner and made a plan to bring Zoe to her doctor in the morning.

-Zoe had an ok night but was very lethargic in the morning.  On the way to the doctors office, Zoe started vomiting and seizing- not a great combo.  Gavin had to hop in the back of the van to administer emergency seizure medication and try to prevent Zoe from aspirating vomit in to her lungs.  I drove to the hospital instead of the doctors office.

-When we got to the hospital they called an emergency response on Zoe.  So- lots of people, lots of talking, lots of excitement, lots of medical interventions, etc.

-Zoe had to be "loaded" meaning she needed some serious medications to stop her seizures.  She also had very low blood pressure which required her to get a lot of IV fluid.  At the time the doctor acknowledged that Zoe getting IV fluid might upset her system but at the time he did not have any other choice.

-That fluid ended up going to Zoe's lungs and heart.

-Zoe is ok now.

-Zoe is home now.

-Zoe is back to school.

This admission was seriously a whirlwind and we are still exhausted physically and mentally from it all.  No one knows why Zoe got so sick from "just" a bladder infection.  She has had many bladder infections and not gotten sick like this but she has also gotten this sick from a bladder infection in the past, just not for a long time.  There is nothing we can do differently to prevent this from happening. 

All of the doctors were amazing and made good decisions so at least we do not feel anger at bad care or anything like that.  We can feel anger at the world, life, etc but the hospital staff were great.

We probably do feel some anger...maybe?  I'm not sure.  Mostly, we just feel tired.  And scared.  And grateful.  And proud that Zoe is such a fighter.  

Zoe reached out for my hand in the emergency room when she was between seizures.  She gazed in to my eyes with a scared expression on her face.  It seemed like she was saying, "Fix it."  I squeezed her hand, kissed her head and told her she was going to be ok.  We were right there with her.  We weren't going anywhere.  I plopped Willow on the bed next to Zoe and she gave her an affectionate poke in the eye for good measure.  Zoe did not respond but I know she felt us there, fighting for her when her body was too tired to fight.  

We were in this exact same position almost 7 years ago.  Ailsa was the baby then.  She, like Willow, sat in the stroller and watched as doctors saved her sister's life.  What a weird, and I would like to think wonderful, family Willow has joined.  So far she seems to fit right in.  

Gavin's birthday in March.

One last picture to show Willow smiling because she looks so serious in the other photos.  She actually smiles all the time, just not when we want her to!

How To Get Started, How to Continue Once I Start

Every time I go to write an entry one of two things happen: 1- I start looking at pictures to add and I get distracted by looking through all the photos of my gorgeous girls or 2- I start to think about how it has been a hard couple of months but how I do not want to focus on that so how do I highlight the positive while giving an honest picture of what life has been like?  And so, months pass and I have not written anything.  So here goes:

First- lets get some of those cute pictures out of the way...

 We took the girls to a costume store for Halloween.  Ailsa knew from the start that she wanted to be a witch.  Zoe also had an idea what she wanted but it took a while for us to figure out what she was trying to say.  In the end, we knew it had something to do with Ailsa being a witch but "no" she did not want to be a witch.  We finally figured out that Zoe wanted to be a black cat!

 To add to the theme- we made Willow their pumpkin :)

 Here is a beautiful picture from Christmas morning.  We had a fantastic Christmas.  Zoe started an antibiotic on December 23rd for an infection so she was feeling much better by Christmas Day.  Everyone was feeling well and it was so nice to spend the day as a family.  

And a cute one of the girls playing together.

We have quite a few pictures like this- Zoe sleeping.  Sometimes she is sleeping on one of us, sometimes she is with her sisters, sometimes she is just passed out in middle of the floor.  Zoe had multiple infections in September through February.  Now, she is having chronic pain issues again.  Zoe has gone though periods where she struggled with this but had been doing well for the past year until the last few months.  Zoe is frequently tired but never wants to miss out on the action so she asks to still be part of things.  She wants to go places and be in the living room with the family even when she is so tired she can not stay awake.  So this is a picture of Zoe falling asleep during story time.  We joke that Zoe is one of those kids that always falls asleep first at the slumber party and ends up with goofy photos or the word "dork" written on their forehead.  So far we have not written anything on her, just lots of photos :)

Watching someone you love struggle with chronic pain is heartbreaking.  Zoe is such a strong person and has a high pain tolerance so when she cries, we know she is really hurting.  It is hard when she needs someone to just hold her but I am trying to get other things done like nursing the baby, making dinner, etc.  Thankfully we have some great people in our life that are willing to sit and snuggle with Zoe for a while.  And Zoe gets a lot of comfort from her two sisters.  

We have many more cute photos from all the amazing things we have done lately- a trip to the Aquarium, the Science Centre, ROM (Royal Ontario Museum), CN Tower and a hockey game.  We have been so lucky to get tickets for all sorts of cool outings from the Starlight Foundation- an organisation that "brings children with serious medical conditions smiles and helps their families cope."  In between Zoe's infections and pain, we have been able to do some amazing things as a family and it is great to see the girls having so much fun.  We even went on a trip for March break.  The girls LOVED swimming in the pool every day.  We realised that Zoe's life jacket is not working for her anymore.  She is not able to get the freedom she wants since she is unable to keep her face out of the water so we have ordered a new special needs life vest/ float.  Zoe loves swimming and we hope to bring her the freedom she gets in the water.

Happy Birthday Zoe!!!!

Can you believe it, Zoe is 8 years old!!!  The day was a memorable one for a few reasons...

 We had a big dumping of snow the night before.  Ailsa had fun "helping" daddy clear the car off so we could go visit Zoe.  Zoe was...

 in the hospital.  Unfortunately Zoe had a rough past couple of months with multiple hospital visits and 9 different courses of antibiotics!  We were managing her most recent illness at home until she started vomiting and having an increase in seizures.  So off to the hospital we went, on a Holiday Monday.  Of course it had to be a Holiday!  Luckily emergency was pretty quiet and since Zoe was very sick, we saw a doctor within minutes and we were transferred up to the inpatient floor within a couple of hours.  Turns out Zoe had bacteria in her blood.  Which is a first for us and pretty scary since it can be really serious.  Six days in to this hospital stay, Zoe had her birthday and so we celebrated in her room.  This was one of the few smiles I saw that day because Zoe was still having a lot of pain, very tired and still was not allowed to eat at this point.  She loved having everyone sing Happy Birthday to her.

 A few close people were able to stop by for the party.  Not pictured here- Alison and Lyn who also came.  Alison actually spent the night before with Zoe so Gavin and I could go home together for a night and have time Saturday morning to get all the birthday stuff ready.  When we came in Saturday morning, Alison looking tired said, "I don't know how you guys do this."  Thankfully, someone had gotten her a coffee and we immediately gave her a well deserved break!

Ailsa was so proud of Zoe, she told everyone, "It's Zoe's birthday!"  She misses Zoe but she did get to spend some time with her over the weekend and Monday after she went to her own appointment at the hospital.  Zoe will need IV antibiotics for another week, so we are trying to figure out if she needs to stay in hospital or if she could transfer to a respite centre that has nurses and is closer to home.  Gavin and I have a trip planned for next week- we are going away for 5 nights to celebrate our 10th wedding anniversary!  The funny thing is that our anniversary is in November but Zoe has been in hospital the past six years in November and it is usually a bad month for her.  So we thought we would book March since she is usually good in March... ah well.  The best laid plans!  We are trying to see if between respite and Grandad we could still go.  If we don't go next week it won't happen any time soon.  The place we are going to had a great discount price for early March so the next discount period would be November....and I don't think we would take that chance.  We'll see.

Zoe is feeling so much better today.  We see more of the giggly, silly girl we know so well.  For a few months now, Zoe had not been her self.  It is a huge relief to see that smile again.  We missed Zoe!  Zoe is back to bossing us around and acting crazy- we love it!

Happy New Year!

First some cute pictures...

 We went to the Science Centre on December 31st to celebrate the New Year.  Both girls love the water table.

I love the water flying around in this picture.  For some reason, both my children (and Gavin's legs- he is holding Zoe in the upsee) got totally soaked!

... and then an update.

Zoe's Discharge, IV antibiotics and Port Problems

Turned out Zoe had RSV (a respiratory virus) as well as a bladder infection.  And of course, the bladder infection was a funky bacteria that is not as common in urine.  AND Zoe is allergic to the only oral antibiotic that could treat it.  Despite past reactions to this medication, we went ahead with pre-medicating Zoe with anti-histamines and tried a dose of the medication in hospital.  Zoe had a reaction- very itchy, irritable and her chest sounded tighter to the doctor.  Now we know she is definitely allergic to that one.  Which knocks out another class of antibiotics and makes Zoe all the more tricky to treat.  In regards to this bladder infection, it means it had to be treated with IV medication.

We went home on Wednesday with plans to continue the IV medication at home through Zoe's port.  All went well on Thursday and Friday.  On Saturday, the nurse was not able to get blood out of the port which meant she could not run the antibiotic.  We tried moving the needle a bit and I even reinserted a brand new needle.  None of these usual tricks worked so we packed Zoe up to head to the hospital.  Besides needing her antibiotic, having an issue like this with the port meant Zoe needed to be seen.

7 1/2 hours later, we finally left the emergency room.  We still could not get the port to work and an X-ray shows that the port might actually be broken or out of place.  They were able to get an IV in Zoe's hand so we were able to get her medication in to her.  We were given the option of waiting around in hospital until the specialist can do something about the port which probably would not be until Monday at the earliest or going home.  We opted to go home.

So What Does It Mean?

The problem with the port not working means one of two things is going on:

1- the port is truly broken and needs to be replaced.  This means Zoe would have to have surgery to remove the old port and insert a new port.  It also means that in the mean time, we do not have good access for Zoe if she gets sick.  Which means we would not be able to give her the drugs that she would need in order to stay alive.  So obviously, getting the port working is a priority.

2- there is a blood clot (or clots) either in the port or in the line somewhere.  This is not a good thing. The blood clot could break off at any time and go to her heart, brain or lungs.  None of that is good.  Last time we had issues with the port, they gave Zoe a clot busting medication and that worked.  So we would have to return to the hospital for this medication.  The medication has some possible side effects (some of them serious) but the risk of the medication would be less than the risk of a blood clot travelling around Zoe's blood stream.

We will hear from the team (hopefully Monday) about what they think is happening and the plan.

We Are All Tired, Tired, Tired

Several people in the emergency room asked us how we are doing.  They have seen us a lot lately and are always very supportive.  Gavin worked in the emergency room before he got the second meningitis.  So he knows a lot of people there.  Some of these people have been there to literally save our daughter's life.  So they have a glimmer of knowing what we go through.

Our response is "We are tired."

We are tired of being in hospital.
We are tired of seeing our child go through this.
We are tired of seeing our child in pain.
We are tired of making decisions.
We are tired of not sleeping.
We are tired of all of this.

But other than that, we are good.

We are good because:

Zoe is doing ok.
Zoe is safe.
Zoe is home.

For the moment.

Genevieve's Health

I have been struggling with my own health issues.  I have been taking hormones to treat my endometriosis and despite doing everything I can (I have been dieting and exercising for the last eight months. I lost 29 pounds, 29 inches- oestrogen is stored in fat cells so this should help lower my hormone levels) I was bleeding again this month (sorry, brothers- not what you want to hear about).

I used to treat my disease naturally- with exercise, good diet, acupuncture and rest.

4 years ago that all changed.

4 years ago Zoe almost died for the first time.

4 years ago we realised what the team had been saying all along about Zoe's medical fragility just might be true.

3 years ago life turned upside down and then upside down again-

Gavin had his reoccurring tumour in his spinal cord followed by two bouts of bacterial meningitis.

2 years ago I realised i could not do all of this and keep going.

And so, I started on medications to treat my endometriosis and to help bolster my mood and improve my sleep.

Because living like this makes it nearly impossible to take care of myself and do what I need to do in order to get better.

I started back at work.  Lasted two months.  Then Zoe got sick and almost died...again.

And so, here I am again in middle of a hormonal, physical, emotional crisis.

Just making it through the day.

One day at a time.

Two Steps Forward, One Back

Zoe was doing really well Wednesday evening but by Thursday morning, her chest X-ray showed more fluid in her chest.  She is third spacing.  Which is not really a very nice thing.  To put it simply.  If you want to freak out and worry even more about Zoe, you can google it!  Needless to say- having the fluids in your body go into your lungs and other organs rather than through the normal system is not a good thing for your body.

However, they do seem to have this under control.  A "good" thing is that Zoe has done this before and they keep good records.  So they know what works for her.  Right now they are giving her meds to flush the fluids out of her body.  It is a balancing act though- if she pees out too many of her fluids her body gets dehydrated and her heart rate and blood pressure go low.  So being in the critical care unit is a good thing right now.  They can keep a close eye on her.

I am probably giving more medical info than most people care for.  But I did want to give an update and my brain is very tired.  So there it is.

Thank you everyone for keeping us in your thoughts and your kind words.  Despite all of this, Zoe has continued to have periods where she is happy, laughing and smiling.  When I read the comments and emails to Zoe, she was full of smiles.

I worked yesterday but it was very challenging since I just wanted to be with Zoe.  I was also completely mentally and physically drained.  So I am not going to work today.  I am going to spend time with Zoe and then go home to take Ailsa to ballet.  Gavin has been home the past two nights so he will take over here.

Ailsa is supposed to have her first sleepover this Saturday!  She loves my friend, Angela's daughter.  Zoe was supposed to go to a respite house this Saturday so we set it up for Ailsa to also have a special sleep over.  As long as Zoe continues to progress well, Ailsa and I will still do the sleepover.  I think it will be a good distraction for her.

Plan this morning is to continue weaning Zoe off the c-pap machine and hopefully switch back to just oxygen.  She was on oxygen only by Wednesday night but it was too soon and her lungs got worse.  So they are taking it slower this time.  Hopefully her body is ready to breathe on its own.

Zoe is sleeping so I am going to do the same.

As always, thank you everyone- for listening, for reading, for bringing me meals, for dropping off groceries, for sitting with Zoe.  You are all amazing!

Zoe is Home- She is Doing Great!

Zoe came home on Tuesday.  She ended up staying a few extra days because she had a fever and they wanted to make sure it was not an infection from the g-tube.  The day after Zoe came home she was ready to go!  This is us walking at the park.  This park has a great fountain Zoe loves but we made her just touch the water with her hands, not get soaked under it like she loves.  We didn't think getting the bandages soaked in a public fountain would be the best thing for a new surgical site!  Zoe has been doing great- she is tolerating all the tube feedings and still eating lots of food with her mouth.  The tube feedings do not seem to curb her appetite at all which is great- that is what we hoped for.  Zoe will still eat as much as she always has (which is quite a lot for a child her size!) and the tube feedings will just be extra calories to boost her growth.  When Zoe is sick, we can use the g-tube for hydration the same way we used the nasal feeding tube in the past.  And if Zoe is really sick and does not have the strength to eat, we will have the tube ready to go and she does not have to go through the  procedure of us shoving a tube down her nose.

Sister Bonding

As always, Ailsa has done amazing with all these changes going on.  She visited Zoe in hospital and they loved playing together.  The picture below is from the rooftop patio at the hospital.  Zoe loved sitting outside in the shade.  The fresh air was great for her lungs which became a bit junky after the anaesthesia and laying around in bed.  Normally we would give Zoe chest physio which involves hitting her back firmly.  We did not want to do this and cause Zoe pain at the incision site so her sitting up and getting fresh air was very important to clear her lungs.  At first, sitting up was painful for Zoe but luckily she had a little sister to help distract her!

I Want to Be Zoe!

Ailsa always says, "I don't want to be like Zoe, I want to BE Zoe!"  Here is a picture of the girls both playing in walkers.  Zoe is in her new walker and Ailsa is in Zoe's old walker.  As you can see, the new walker is quite a bit bigger than the old one which is why the new one does not fit in our car if we are carrying anything else.  We love how fast Zoe can go in the new walker.  It also supports her in a more upright position which is great for her spinal development.  Ailsa often says, "Zoe's new walker is too fast."  It is not often you hear that complaint about disability equipment!

Surgery Went Well

 Zoe sleeping after surgery.  They were able to do both the g-tube insertion and the eye surgery at the same time.  Zoe had a lot of pain after surgery but did really well.  She also had a lot of gagging which is why they have the drainage tube in her nose.  That way she does not throw up.  They were not able to get the bigger size tube either in her nose or her stomach because Zoe is so petite.  So far the drainage tube is working well so that does not seem to be an issue.  With the g-tube, they will have to replace the current tube with a larger size before we can move on to the mickey button.  Which means another procedure in the surgery room but we will cross that bridge when we get to it.

 Despite being in pain, Zoe insisted on sitting with Lyn (no surprise there!).  I love the little smile she is giving Lyn.  Got to love that morphine!

The nurse could not believe Zoe insisted on sitting up after only 6 hours.  She sat for 20 mins and then had to lay down when her stomach was really sore.  We told the team, Zoe is a mover- she does not want to stay down!

Zoe is now able to have almost an ounce of clear fluids through her stomach tube every four hours so things are moving along.  Zoe was not impressed when she signed "milk" and we said she can not eat through her mouth for a few days!

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.

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....

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.

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"

Zoe doing better

Hey all. Zoe is doing much better today. She was weaned off BiPAP last night and went on to CPAP (http://en.wikipedia.org/wiki/Positive_airway_pressure ) and is now just on blow by oxygen (moisturized oxygen blown close to her face). She got a PICC line (http://en.wikipedia.org/wiki/Peripherally_inserted_central_catheter )
yesterday at 1:00- they started talking about it at noon so things went amazingly quickly, which was both stressful and comforting. So now she can get her bloodwork through that and we don't have to worry about IV's going bad. She is sleeping comfortably and has not got any sedation for some time now. She still has a nasal trumpet (http://en.wikipedia.org/wiki/Nasopharyngeal_airway )in to help keep her nose open and to facilitate suctioning out any gunk she can't clear from her airway. She looks much better and much more peaceful. We'll try and get a photo up soon. So far there has been no evidence of increased seizures (knock on wood). Genevieve, Ailsa and I are staying at the Delta Chelsea down the street so we all had a much better sleep last night (I got more sleep last night then I had had in the previous three nights combined, which was nice). Our friends Melissa, Riann and Dane have been very helpful, as has Zoe's excellent respite worker Alison. My dad Alan was also a big help on the first day Zoe was admitted as a baby watcher. My colleagues in the ED have been very supportive in me flexing my work hours, providing medical information and just being generally supportive. Thanks to all.

Anyway, just a quick update. I couldn't figure out how to get the links highlighted for you, so if you are interested you can just cut and paste for the time being- maybe Genevieve can fix it for me later : )

Ahhhh, Winter is Coming...

Pain Meds

We had to take Zoe back to the doctor on Saturday because she was becoming very agitated and aggressive in the evenings while repetitively signing "hurts" and pointing at her mouth. It is actually amazing to us that she can point to exactly where her pain is- she digs her finger way in the back of her mouth to point at her throat where the blisters are. Just out of interest we did a pain scale from the hospital for children with special needs that are non-verbal. Zoe scored 37 and anything above 7 is considered the child is in pain. Yikes! So off to the doctor we went. He prescribed morphine and so far Zoe has done pretty well with just two doses of that a day and a couple doses of ibuprofen. The morphine does not seem to make her sleepy so that is good.

First Cold of the Season

Unfortunately, Zoe woke up yesterday with a very stuffy nose and miserable. She has gotten a cold on top of her viral infection in her throat. Needless to say, she was pretty miserable yesterday. She does really well though, even when in a lot of pain. She still spent some time in her walker and loved going outside for a wagon ride and swinging with grandad.

I woke up at 3:30am today and instinctively knew something was amiss. I listened closely to the monitor and I could hear Zoe gasping and choking. I held my breathe and listened (this is what we do before rushing in, we give her a chance to clear herself first). Zoe did clear herself and when I checked on her she was sound asleep again. My heart was racing and I could not get back to sleep until after 5.

So I took a deep breathe and reminded myself that I have to sleep, even when I am worried about her breathing. She is bigger and stronger now and most times she can clear herself.

Sigh....winter is coming so I better remember how to roll over and fall back to sleep afterwards.

Our Trip to Philadelphia

For Christmas, Zoe and I bought Gavin tickets to the Maple Leafs vs Flyers game in Philadelphia. Why Philadelphia? Two reasons- the first is that it is nearly impossible (and very expensive) to get hockey tickets in Toronto. The second reason is that my "little" brother and his wife live there along with several of our friends. Gavin and I met in Philly and lived there several years before moving to Canada. So off to Philly we went. We drove since we are not supposed to fly if Zoe is congested and when isn't Zoe congested in the winter? Zoe did great on the long car ride down (it took us 11 1/2 hours with stops) on Friday. Saturday, we met with Ruth and Ulla- two friends that I used to work with.

Zoe hanging out in the bathroom at the store where Ulla works. She thought this seat was hilarious.

Zoe playing with "grandma" Ulla at Ulla's new apartment. Ulla is a wonderful volunteer I had the pleasure of working with in Philly. She is one of those people who you can never guess her age because she seems to have boundless energy and she is always so giving. She has been an avid follower of Zoe's blog and it was great seeing her again. It is amazing how much support we feel from someone we don't get to see as often as we would like.

Saturday night we had another get together to celebrate Zoe's birthday. Kristen made a delicious cake- can you see Zoe is even bringing some of the cake to her mouth herself! Zoe was then thoroughly spoiled with more gifts after dinner. Her favourite is the Flyers jacket from Uncle Joe and Aunt Kristen!

Zoe at the hockey game on Sunday! She spent half the time bundled and patted firmly to help her stay calm with all the noise. But some of the time she was full of energy and ready to play.

This is the only picture I have of Joe and Kristen from the whole weekend. How can that be? I guess we were too busy visiting and not always getting the camera out. I can only imagine Kristen is saying something about yellow helmet or free skate in this picture :)

Patrick and Zoe discuss the game after. They look like they are having a serious discussion.

Unfortunately Zoe did not feel well for the rest of the trip. She has had a cold for the past several weeks and she started running high fevers on Sunday. So we cancelled our plans for meeting up with friends and doing shopping on Monday and just hung out at the house. We left early on Tuesday to split the drive into two days. We stayed at a motel Tuesday night and Zoe was miserable. Up every two hours with a high fever that required Motrin and Tylenol and cold baths to keep them at bay. We hurried back on Wednesday after Zoe had what we think was another short febrile seizure. Once we were home, she seemed better so we held off talking to the doctor until Thursday. The doctor wanted us to go there Friday for a chest xray. The xray, as always, was inconclusive. There is definitely some "findings" but it is hard to tell if it was just pneumonia or some chronic lung changes. Since this is the fourth or fifth (we've lost count) pneumonia this winter, Zoe's doctor is sending us to see the "chest team" at the hospital. We don't expect to get any answers but we are willing to go and see what they have to say. Perhaps we can come up with a plan for when Zoe runs these fevers. We are unsure if we should bring her to the doctor right away since we are usually told, lets hold off on antibiotics for a few days and see how she does. Which we are fine with- we don't want to give her meds if she doesn't need them. The tricky thing is that her pneumonia is not a typical pneumonia where it is bacterial and you treat it with drugs. It is often a viral cold that causes Zoe to produce more mucus which shows up as pneumonia in her lungs. So even when we give her antibiotics, they don't do anything since the underlying illness is viral.

The exciting part about the chest xray is that Zoe was able to do this one lying down instead of in that bicycle seat/plastic tube contraption she is usually in. We did this xray in the community office in the basement under the paediatrician's office. That way we didn't have to go to the hospital. We weren't sure if Zoe would stay still enough but she did a great job. She thought the xrays were hilarious- she was laughing the whole time. Which is much better than her crying and screaming which is what she usually did in the plastic tube. Who can blame her? It doesn't look comfortable.

Spoke/ Blogged Too Soon

NG tube goes back in and Zoe is back in our bed.

After a whopping three days of feeling well, Zoe came down with a gastro infection. She couldn't keep anything down and was vomiting bile so back to the doctor's we went on Tuesday. The doctor gave us an anti-nausea medication that they give kids in the emergency room. It worked and Zoe only vomited once after starting the med. That night she drank the electrolyte solution pretty well (she was probably so thirsty after throwing up all day). Unfortunately, by yesterday afternoon she had not drunk or eaten much so she was getting seriously dehydrated again. She just didn't have the energy. Since Zoe never had a chance to gain back the weight or get well rehydrated after the last illness, she does not have any reserves. So we put the NG back in last night to give her the electrolyte solution. She is tolerating the feeds so far. We are trying to do everything we can to avoid going in to hospital where they would hydrate her via IV. Zoe is a really hard stick at the best of times but impossible when dehydrated. We have gone several times in the past for IV hydration only to find they can not get access to a vein. Or, after multiple sticks, they get the IV in but it lasts less than 24 hours. So, hopefully she will continue to tolerate NG feeds and will slowly increase her oral feeds again. Lyn (Zoe's respite worker) is coming over for a few hours today so I can get some sleep. Gavin is working a 12 hour shift at the hospital, so no rest for him! We hope (and maybe we will laugh at the naivety of this later) that Zoe perks up a bit today so we can bring her for a few hours of preschool tomorrow. I think it would be good for her to get out of the house a bit.

We are starting to feel a bit isolated and lonely here. Gavin pointed out that it has been weeks since we could do anything "normal" or fun with Zoe. We haven't even had time or energy (and she hasn't been up to it) to take a walk around the block or go on the swing in the back yard. We see other parents out our window bundling kids in their snowsuits and playing in their yards (we just got a little snow). It is difficult to explain the emotional impact of that on us at a time like this. It would probably be dramatic (although somewhat accurate) to say it breaks our hearts.

I had a small breakdown on Monday and Gavin had one on Tuesday.

But then we took a deep breath,

dried our tears,

told ourselves to suck it up,

rolled up our sleeves,

and said,

"All right, let's go again."

MRI and Ophthalmology Results

Zoe on the Upswing

First, I wanted to post that Zoe seems to finally be on an upswing from this latest illness. After three weeks of fever and cough (she is still coughing some but definitely getting better) and a few days of NG tube feedings, Zoe does seem to be feeling a lot better. She did a half day at school yesterday as was so excited to be there. Gavin tells me that Zoe was like a celebrity when he brought her in. All the kids crowded around and wanted to talk and play with Zoe. She of course just ate it up and was smiling and laughing up a storm. I dropped her off this morning for a full day so hopefully she makes it through the day. If not, they will page me and I can pick her up early. The daycare is a five minute walk from my work, so it is very easy to get to her fast.

This past illness Zoe showed a lot more signs of being uncomfortable and in pain than she has in the past. It was really hard seeing her so unhappy for so long. She is usually so easy going. I think the high fever is what made her so miserable. I don't blame her- I would be way more grumpy than she was!

Gavin says that Zoe only weighed 18 pounds (she was almost up to 20 pounds before this latest illness) at her appointment the other day. We are hoping most of that will come back quickly. She has her three year check up soon and we are hoping to see her at that 20 pound mark! We don't stress about Zoe's weight like we used to. We know that she is growing and healthy and will be as big as she is. We know she gets enough to eat (when she isn't sick and we have to resort to tube feedings to keep her hydrated). So the weight thing has become a joke between us. Last appointment Zoe was 19.9 pounds and we were like "Come on Zoe- only .1 to go!"

Sleeping Issues

Unfortunately, Zoe is having some major sleeping issues these past few months. Initially we thought it was because we had a guest staying in the house (Gavin's dad was here for several weeks). But Zoe has continued waking up, screaming in the night. Of course she woke up a lot when she was sick due to her fever going high and her feeling miserable. We are still hoping that since she is feeling better, she will start sleeping better. I wonder if she is having night terrors or sleep disturbances. This is quite common in children with neurological differences and most of the other 1p parents say their children have sleep issues. It can become a real issue when the child is older and able to climb out of bed. For now, even when Zoe wakes screaming at least we know she is safe in her bed and hasn't fallen out.

MRI and Ophthalmology Results

My excuse for posting is to give an update on our most recent appointments.

MRI- met with Neurosurgery on Wednesday. Zoe's syrinx from her T8 to L2 is still there, it has not changed. She does now have another collection of fluid in her cervical vertebrae. We were hoping to be told the syrinx has shrunk or stayed the same. So, not so happy to hear there is more fluid. But we were reassured that as long as Zoe is not showing any symptoms, surgery should not be necessary. He checked Zoe's reflexes (which she usually does not have a typical response to but never has) and her muscle tone in her arms and legs. His concern is the the new collection of fluid could affect her arm/hand control. Due to Zoe's weak muscle tone it would be hard to tell which is muscle and which is due to a syrinx. Despite this, the doctor was very impressed with Zoe's strength. And he kept commenting on how amazed he was at Zoe in her walker. He did not even recognize her initially. We, of course, are quite proud of how mobile Zoe has gotten so we purposely brought the walker in for him to see. We also know it is important for him to see if her leg function is being impaired at all.

Ophthalmology- saw the doctor 1 1/2 weeks post tear duct plug insertion. He says that Zoe's eyes look less dry already and is happy with how it looks. He is not sure of his long term plan for Zoe if these plugs fall out (which they frequently do). But I guess we just have to go with what is working for now. He even reduced the eye gel from four times a day to just once! Zoe does well with getting the gel in her eyes, but once less thing to remember three other times in a day is a nice break for all of us.

Rough Night/ Rough Winter

Zoe Sick Again

Zoe has another cold. Like aways, it seems to take her weeks to get over it. We were very lucky that her MRI happened when she was actually well. We were at the doctor's yesterday and the good news is that her lungs sound good. So hopefully she will fight this one off without too much medical intervention. The high fevers (spiking over 39 C/ 102.2 F) makes me a little nervous since that is with Motrin and Tylenol around the clock. We were told to return Friday morning if the fevers did not go away. Since they are getting worse (she was just 39.6 C/ 103.3 F with Motrin on board), we will be heading back to the doctor's in the morning.

Not Blogging Much

We haven't blogged much lately since we have been having a rough winter. Although this winter does seem a little better than last (knock on wood!). Zoe has been making some amazing communication/cognitive gains- she knows some of her colours, is making choices, understands consequences, is following two step commands, etc. At the same time, Zoe's physical development is progressing very very very slowly. She is still not able to sit on her own and can not scoot or crawl at all. She does amazing in the walker and we try to have her in it as much as possible. It is like she is a different child- she strides around the house in complete control and in charge of where she wants to go. She does get frustrated that the toy she worked so hard to get to falls on the ground and she is not able to pick it up.

Conference Plans for Salt Lake City

The conference will be held in late July in Salt Lake City this year. Plans are under way and we are looking into costs. We really want to go again this year. We get so much out of being around other 1p36 parents. It's hard to think ahead right now since we are struggling to get through the day. But it does give us something positive to look forward to.

There are lots of positive things to focus on.

Lots of negative things too.

Which I guess is why I haven't posted much lately. It is too easy to focus on Zoe being sick all the time right now. Or to ignore that and focus on the more positive gains she is making. I feel like it does not really give a picture of what life is like right now. But I guess that is how it is for everyone.

And so I post to keep people up to date.

Fun with the swine flu

So Zoe was hospitalized for the H1N1 virus this last week. She was in for 8 days and is now at home on NG feeds. She had been slightly sick a couple of weeks earlier but as Genevieve was a bit sick then and Gavin had a really bad headache/fever for a couple of days we thought she had managed to avoid it too badly. We were hopeful this was our brush with the swine flu. Then Genevieve got sick again for five days or so (and Genevieve doesn't usually get sick). Zoe was still well however. As she is in the "high risk" catagory she got the H1N1 vaccine on Friday the 30th of October, about 2 days after it became available up here. She had a bit of a temp over the weekend but was in good spirits and eating well - we just thought it was a reaction to the vaccine (and actually, it could have been just that). On Monday we sent her off to school and she had a good day. Monday evening though she started fussing and spiking fevers up to 39.5 degrees centrigrade (103 farinheit). We went to the Emergency department at Sick Kids (where Gavin works) and her temp was taken at 37.5 centrigrade (37 is "normal- Zoe usually runs half a degree below that)- we think this temp was incorrect as they did it in her armpit instead of her butt (which Zoe actually likes- strange girl) and she was squiggling a lot. Never- the-less we jumped the cue due to Zoe's complicated medical situation. and got into a room in the ED. Good thing we did because a half hour later she had a febrile seizure and temp was up to 40.5 (105 farniheit). The seizure lasted a couple of minutes. They gave her rectal Ativan which she promptly pooped out. Her airway stayed open but they couldn't get IV access after six tries so that was a bit tricky. They eventually got a line in on the seventh try later on. We were not happy about the seizure- Zoe (unlike a lot of the 1p36 kids) has never had seizures before and we weren't anxious to start. But hopefully this was just a febrile seizure and not part of an underlying epileptic condition. She only had the one, so that is good news.

She did well in hospital, just made slow progress. Typically the fever with H1N1 lasts about four days- she is now on day 10. She isn't eating or drinking much, hence the NG (which she has already pulled out once). But she is eating more each day. Not drinking a thing, but that is how Zoe is when she is sick. We are comfortable managing the NG at home; we ended up doing it frequently last winter to keep Zoe out of hospital. Hopefully we will be able to remove it in the next few days. She was on a small amount of oxygen while in the hospital for a few days but only by mask, nasal prongs (useless- they always end up in her mouth or her eyes) or blow by.

It was tough being in hospital again. Zoe's grandfather Alan is here right now- he came in from Calgary to help us around the house but ended up doing our laundry and bringing in fresh laundry, food and clean cloth diapers in for us. It was a big help, as both of us stayed at the hosptial with Zoe to do her care, run her feeds, take her temps etc. When Zoe is in we like to do most of her care anyway. Genevieve took Tuesday and Wednesday off but went back to work Thursday and Friday. As she works on the 5th floor of Sick Kids and we were on the 7th it made her commute a lot shorter (unless she got stuck on the stairs behind some big fatty around the sixth floor). Gavin ended up working two twleve hour shifts in the Emergency room on Saturday and Sunday, mainly because two of our other staff were out with H1N1 themselves and the sole remaining person had worked 5 days straight. So we are all pretty much exausted- Zoe from being sick, Gavin and Genevieve from looking after Zoe, sleeping at the hospital and working too much (on Sunday evening I remarked to a colleague that I hadn't been outside the hospital for 48 hours- shortly after Genevieve found me and made me take a walk with her!) and my dad from running around and doing all our scut work. But we are home. Zoe was one excited little girl when she saw she was going to get to sleep in her own bed yesterday after coming home!

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.

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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.

Zoe's New Haircut

New Haircut
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?

Bit of a Blah Day...

Zoe has been running a fever again since Saturday. Just a low grade one. So we are just waiting to see how she does. She did great eating and drinking Saturday but not so great the last two days. And so we are waiting to see how that goes too.

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.