Happy Birthday Grandad!

We celebrated Alan's 71st birthday yesterday!  Both girls helped to make his cake (a very messy but fun time).  Ailsa picked red for the frosting but once I put some food dye in and she saw a pretty dark pink colour, she wanted me to leave it that way.  So we celebrated Zoe and Ailsa style with a pretty pink cake with pink candles :)

Lungs

Zoe continues to have a lot of junk in her lungs.  She has been doing great this winter with fighting things off and staying out of hospital.  We continue to do daily chest physio that loosens up some of that gunk so she can cough it out.  People with low muscle tone have a hard time clearing the mucus from their lungs which is why they end up with pneumonias.  And the pneumonias usually take a while to clear up.  Now that Zoe is a little stronger, she has what they call a productive cough- she can clear some of that mucus out of her lungs.  She does not like chest physio but she knows she feels better afterwards and when I said, "Do we give you chest physio because we are mean?"  She said "No".  "Is it because we love you and we want to help your body stay as healthy as it can?"  She said, "Yes."  Zoe fights us less than she used to now that she understands why we are smacking her back for 5 mins straight on each side.

It Takes a Village- More Thoughts

I have been thinking more about this new nurse coming in to our lives.  We have accepted that it takes many people to care for Zoe in a way that allows her to participate fully in her life.  With everything going on in our lives these past two years we have needed a lot of extra help.  I wish we were at a place where we could say, "Thanks for the help, we are ok to do it on our own now."  However, anyone with children know how exhausting caring for another person is.  And anyone with a child like Zoe knows there is no way to take care of her on your own for very long.  You need help. We accept this fact.

What Happens When the People are Constantly in Flux?

I begin to worry about the long term effect having people constantly coming and going has on Zoe and Ailsa.  Yes, change is a constant in life.  Teachers change at school, friends change as years go by, etc.  However, we try to provide a stable and safe place for the girls at home.  Since our life has been full of change, we try to maintain some impression of stability.  We try to make sure the girls know the home is always a safe place, we are always here to take care of them, they can be/feel any way they need/want at home.  But how do you maintain this feeling of acceptance, peace and stability if we have to have people in our home who may not always care for the children the way we do?  With respite workers, we interview and chose who we want to be a part of our lives.  With nurses, we don't have as much choice.  If a nurse is definitely not going to work out (and we have had our fair share of these) then we can ask for a new nurse.  However, if a nurse is ok and will get the job done, we find ourselves integrating a new person in to our lives.  Sometimes this is a smooth transition, sometimes it takes some adjustments over time.

We have had some wonderful people come in to our home.  And some others have not been a great experience (nurses who insist on treating Zoe like a baby and not allowing her the independence she deserves, a nurse who stole from us, a nurse who told me we should not allow Zoe to go outside because children like her should stay hidden away).  We always explain to Zoe why that person was wrong and that they are not returning to our home.  Zoe is pretty easy going and takes it all in stride.  But this time, both girls are reacting in a way that says, "Not again.  Can't we just have more family time?"  We, as parents, are put in a spot of deciding whether to say no thank you to help and possibly lose the funding or putting up with another person who may not be a perfect fit.  Losing the funding is not an option- we need this support.  We are not sure whether Gavin will relapse with meningitis again.  I continue to have medical issues.  Thankfully Alan/Grandad is always willing to help out.  However, we want him to have time just to be a grandad.  To play with and spoil the girls like a grandparent should.  So we try not to put him in the role of caregiver too much.

At this point in time we will try out this new nurse a few more times and see how the fit is.  We wish the great nurses that come in to our life could just stay in this job forever.  But people need to grow and change and do what is best for them.

We Are Lucky

Just to be clear, I recognise how incredibly lucky we are to have so much support.  I see many parents struggle because they do not get enough support from their government, insurance companies, family, etc.  Most people who have a child with special needs has a limited amount of money to spend on the many things these children need.  And so a parent is forced to choose between medications, therapy, medical equipment, or respite.  Usually, respite is the first thing to go.

It is only because things have been calm (meaning no one has been in hospital for the past month) that we even have the luxury of having these thoughts.  When one of us is sick, we take whatever help we can get.  I just want to be sure that we have the big picture in mind when making these every day decisions.  We want the girls to be as independent, confident, sensitive, caring, strong and wonderful as they can be and we want to surround ourselves with people who support us.

Another New Person?

Holding on to People in Our Lives

One thing that has become difficult for all of us is getting used to a new person in the house.  We have been very lucky with our respite workers.  They tend to stay with us for a long time.  Riann has moved on to a full time job but is still very involved in the girls' lives (they are being flower girls in her wedding next month!)  We tease our friend Lyn that she got cancer just to get away from us but it didn't work!  Zoe informs me that she wants to have her birthday party at Lyn's this year.  Lyn has a party room in her apartment building that we had a small party in before.  I said, "We will have to talk to Lyn about that" to which Zoe said, "No."  Then I asked, "Is Lyn invited to the party?" "Yes."  "So you want Lyn there but you just want to show up one day and say surprise we are having a party at your place today?"  "Yes."  I guess that is what I get for asking Zoe what she wants!  Our main concern with having the party at Lyn's is that we know she will do too much.  And sure enough when I told Lyn this story she said, "Sure you can have the party here, just let me know which day.  I've got chemo on February 12th but other than that I am free."  Ah Lyn, we love you but stop doing so much for our children!  They say jump and most of the people in our life say "How high?"

Our current respite worker, Alison is amazing.  She started out saying she could commit to one year and now, three years later Zoe insists on calling her parents Grandma Jean and Grandpa Ken.  They have taken Zoe to hippo therapy and had her over at their house many times.  So Alison is not leaving us any time soon either.  Alison and Riann (and Daine- Riann's partner) were with us the day Ailsa was born.  They have seen me in labour, they took care of Zoe, they brought yummy post-partem soup.  They are family now.

Zoe tends to hold on to people.  Once you start, you just can't stop.

A Different Trend with Nurses

We have been lucky with some of the nurses that have come into our lives.  The relationship tends to be more professional but eventually that professionalism breaks down.  How can you remain separate when Ailsa is hanging off your back and Zoe gives you that smile?  Viki and Michelle have become a big part of our lives.  Viki was so amazing- she came at 630am to get Zoe off to school so I could get more rest while Gavin was recovering.  I don't think we would have made it through that time period without her.  Viki is currently on a leave of absence and I think she may not be coming back.  We hope she stays a part of our lives.  The girls love her.

Michelle is our other nurse.  She has become like family.  She has been here during birthday celebrations and it does not feel intrusive at all- she just blends in.  She is an amazing nurse and very caring.  But we know that young, amazing, great nurses do not stay in home care for long.  They are paid less and get less support in home care.  And so the good ones tend to move on.  For now Michelle is here, but we know that is not permanent.  So we are training a new nurse.

Training a New Nurse

The new nurse is very nice but it is difficult to open our home and our hearts to yet another person.  When Ailsa arrived home from preschool yesterday and saw a new person in our home she started crying and said, "I don't want a new friend."  And I knew exactly how she felt.  It is hard to go through the process again and again.  It is hard to hear Zoe upset because the new person doesn't get her yet.  It is hard to watch as the new person struggles with communicating and reading Zoe.  We usually can tell pretty quickly if a nurse will be a good fit for us.  This new nurse seems like a good fit.  And she is eager to learn.  But as we climbed into bed last night Gavin said, "She's good, she's young, she is eager to learn which is great except how long do you think she will stay?"

Merry Christmas and Happy New Year!!!

We had a wonderful Christmas this year.  December was a very busy month with hospital visits and lots of fun events.  Here is a run down and some cute pictures :)

End of November/ Beginning of December- Ailsa was hospitalised due to an increase in her kidney symptoms.  They decided that the kidney biopsy was definitely necessary.  She was able to come home before the biopsy since she started a medication that helped her blood pressure decrease.  Ailsa was discharged on a Thursday and that Saturday we went to...

Great Wolf Lodge- the Starlight foundation that Zoe is registered with had a party at the Great Wolf Lodge in Niagara, Ontario.  It included a sleepover as well.  The kids loved playing in the water park.  This was a great way for us to try out the Lodge for free.  I wasn't sure how the girls would cope with all the stimulation.  The 1P36 conference will be held at the Great Wolf Lodge in Ohio this year.  Now that we know the girls will be able to get a lot out of it, we are even more determined to make it to conference this year.  We have not gone since 2010 and we really miss connecting with the 1P36 group in person.

Kidney Biopsy- Ailsa had her kidney biopsy on Monday, December 9th.  She did amazing.  She had to lay flat on her back for seven hours after the procedure.  We were reassured that she would be sleepy for most of the time because of the anaesthesia she would get for the procedure and the morphine and anti-nausea medication she would be given.  HAHAHAHA.  Ailsa slept all of 15 mins after the procedure and then was wide awake the entire time!  We are so lucky that Ailsa is such a sweet tempered child and listened to us when we told her to stay on her back.  It also helped that we let her watch TV and play on the IPad as much as she wanted.  Ailsa stayed out of daycare a few days  and life began to settle down when...

Fun with Norwalk- Ailsa threw up twice on the Thursday.  Grandad was sick Friday and Saturday.  Zoe started to throw up on Sunday night and just kept on puking.  We brought her to the hospital and they ended up admitting her for four days.  The nurses joked that she was just coming in for her tune up before Christmas.  Zoe was bummed to miss the last week of school but we were able to do several fun outings after she got out of hospital that kept her distracted.

Leafs Game- Our social worker was able to get us seats in an executive box for a Leafs (hockey) game.  The kids had a great time watching the game while enjoying lots of free food!  Ailsa was not happy when Santa stopped by but Zoe thought he was funny.  The game was the day after Zoe was discharged from the hospital so although she was tired, she really enjoyed going and it was a great way to start off our holiday celebrations.

 This was pretty much the look on Zoe's face the entire game.  The donor and staff in the box loved how much Zoe danced around and laughed her head off the whole time.

 Not a bad view!

We took the Go train downtown instead of driving.  This added to the excitement of the outing.

Nutcracker- We also got free tickets to see the Nutcracker that Saturday.  Both girls enjoyed watching the first half but got a little bored with the second half.  Ailsa amused the people around us with such witty comments as "That is not my grandpa" (referring to the grandfather in the ballet.  Ailsa watched him dance a few times and she understood the story enough to remember he was the grandfather but was expecting him to be Alan!) and "Look at those Kangaroos" when the mice came on stage.  Thankfully it was a family friendly theatre and people laughed.

Ice Storm and Black Out- That night we (like a lot of people in Toronto) lost power.  And while running Zoe's NG feeds by candlelight did make for a romantic evening we knew we would have to leave if the power was not restored quickly.  We were happy to stay in the house without power, but our gas heater has an electric starter so we had to vacate.  Luckily, Grandad is only 5 mins from us and he had power.  The girls loved having a sleep over at his place.   We got our power back three days later on Christmas Eve.  It was a lovely way to start Christmas.  Not everyone was as lucky as we were.

Our Christmas Tree/ Plant.  We were not able to get our tree this year like we usually do, but Gavin came up with the great idea of decorating our tree- like plant.  The girls had fun decorating and we had somewhere to put all those gifts.

 Christmas Morning

 Ailsa showing off her new stroller and baby carrier.

 Ailsa and Zoe pretending to sleep (I don't think Zoe pulled it off as well).  Grand Auntie Patsy gave Zoe her sleeping bag with her name on it for a birthday one year.  Ailsa was so excited to get one of her own for Christmas.  She has slept with it every night since Christmas.

 The simple pleasures in life.  We got more balls for the ball pit we keep at Grandad's house for Zoe.  She loves the box of balls so much that we have kept them at our house and will have to add them to the pit later once the girls get bored of it.  Although, knowing Zoe that could be a while!

The other day I said, "You want to be just like Zoe" and Ailsa responded, "Not like Zoe, I want to BE Zoe."

Ok, ok no more pictures for now!

New Year's- I don't think Gavin and I made it to midnight, but we did celebrate New Years Day by taking the girls to the Science Centre.  Grandad came along too.  The girls were completely exhausted by the time we got home and had a nice home cooked meal (aka take out pizza).

Ailsa Update- We went to Ailsa's nephrology appointment yesterday to get the biopsy results.  We were hoping to get a definite diagnosis but they are still a bit stumped by Ailsa.  They did rule out the nasty autoimmune diseases and the kidney diseases so that was a great relief.  The biopsy showed that the tissue in the kidneys filters is not normal.  Apparently there is some extra material there and they are not sure what that means.  They have made slides and are sending them out to other hospitals all over to get other doctors' opinions.  The great news is all the things that this isn't.  The bad news is we still don't know why Ailsa is not able to absorb protein into her bloodstream.  This low blood protein level can cause problems in the long run so they are going to consult other specialists.  Who wants a diagnosis anyway?

Happy Halloween Part 2

Haha, I will master this computer yet. All I have to do is commit 2-3 hours per post. That is reasonable, right? (PS Yes, Jason I will be taking you up on your offer to fix this!)

Zoe's Costume
Gavin had just had his hockey gear professionally cleaned. Sadly, Gavin has to hang up his hockey skates for the next while. His neurosurgeon says he will never be able to play again but I am hopeful that with time he will be able to play hockey safely. In the mean time, instead of leaving the gear stinking up the basement (which is what it has been doing since March 2012) Gavin had the gear professionally cleaned. I have never seen such shiny, new, good smelling gear in my life! Wow, that $80 was well worth it!

When Gavin brought his gear home the girls wanted to try it on. Zoe thought daddy's shoulder pads were hilarious. She was lying down on the floor and we tucked her head in and pretended she was a car driving around- and so the idea for the costume was born. Zoe loved the idea of wearing daddy's hockey gear and being able to bring her mustang walker to school. I don't think she really knows what Transformers are but she was excited.

Trying out the costume at home.

Zoe took being a transformer very seriously...

Ailsa carving her pumpkin with daddy. Ailsa helped Zoe pick out her gigantic pumpkin at the farm and then chose a small pumpkin for herself.

This is Zoe showing off her newest trick. She enjoys swiping her water cup off the table as she is walking around in her walker. She now has the coordination to grab it, drink from it and hold on to it. Pretty amazing!

Happy Halloween!!!

Silly computer will only let me load these three pictures.  I wanted to add one more of Ailsa decorating pumpkins and Zoe in her costume.  Oh well, perhaps later.

Happy Halloween Everyone!

Now I am on Zoe 's IPad and it won't let me scroll down to put captions with pictures so I will write them here.

We went to a pumpkin farm to pick out our pumpkins this year.  The girls loved the wagon ride over to the patch and riding around in the wheelbarrow while looking for pumpkins.  Zoe loves the de-gooping part of pumpkin decorating.  After that, both girls lost interest.  Luckily daddy loves to carve pumpkins so he did so after the girls were in bed.

The other two pictures are from the Halloween parade at Zoe's school.  I love how much fun she is having with her class.  And of course Ailsa wanted to come along and walk in the parade.  Recognize Ailsa's costume?  Two years ago our friend Riann got us matching butterfly costumes for the girls since we were stuck in the hospital.  Last year Zoe wanted to wear the butterfly costume to school since she trick or treated at the hospital the year before but did not get to go to the parade at school.  This year Ailsa spontaneously said she wanted to be a butterfly and we were like, "Great, we've got that one covered!"

Zoe was a transformer this year.  We thought it was appropriate given the saying, " More than meets the eye."  That's our Zoe!  More about the costume idea when I post the next pictures.

October

Things here have been mostly good which is very nice.  Zoe started 1st grade!!!  She (like most first graders) is struggling with doing more work and less play.  She still has plenty of time in her walker, stander and hopsa sling.  She has a new teacher this year so it is a bit of an adjustment for all of us but so far is going well.  Zoe still loves school so that is a good sign.

Make-a-Wish Trip

Zoe's social worker suggested that now might be a good time to put some thought into Zoe getting a wish granted.  Based on Zoe's criteria and what we know the children will enjoy, we are booked for a seven day cruise to the Caribbean for March break!!!  The ship we are going on has a carousel (both the girls love carousels), boardwalk, park with trees, splash pad and multiple pools.  When planning the cruise Zoe said that her two requirements is that she not miss school and Ailsa has to come along. Apparently we are optional!  Zoe qualifies to bring a medical attendant along since her needs are so high.  We talked to the team about taking grandad and they thought it was a great idea.  Zoe does not need a nurse, just another adult to give us an extra set of hands.  We thought it would be awesome to take this trip as a family and say thank you to grandad at the same time for all of his support.  I honestly do not know how we would have gotten through the last couple of years without him. We know he will be a great help to us on the trip since he is always willing to change diapers, give a bath, read books on the couch with Ailsa for 45 mins straight, or whatever else needs done.

Needless to say we are all very excited.  Zoe was worried that if she gets sick we will miss the trip but I reassured her that it can always be rebooked.  That seemed to satisfy her.  It is nice to have something so exciting to look forward to.

Summer

Seems like we just blinked and summer flew by!  We were able to take a couple of trips and fit in some camping so we had a pretty good summer.  In early August, we went to Colorado to visit my three brothers who live there.  Another brother from New Mexico drove up to see us and two sisters from St. Louis drove out too.  It was great catching up with everyone.  Some of the family has not seen Zoe in years and some had never met Ailsa.  We hope to Skype with family more.  We did Skype with my brother and his children since the trip and the girls loved it.

Darien Lake

There is an amusement park called Darian Lake in New York.  We went there for 3 nights.  They have a hotel, cabins and campsites.  We camped out and the girls loved it.  You can go in and out of the park as much as you want so we would hang around camp a bit and then go ride a few rides (aka ride the carousel and ferris wheel at least twice every visit!). Ailsa can be a bit tentative to try new things but she really loved trying new rides.  The park was great with accessibility.  They measured Zoe's height when we got there and gave us a booklet with rides she could go on with a companion checked off.  Zoe (who is not tentative to try new things) wanted to try out a "big girl" ride.  Given Gavin's neck issues I went with her.  Zoe really loved the ride initially but found it went on too long.  The kiddy rides do not last as long.  Afterwards, Zoe decided she is not ready for big rides.  They had lots of variety with the kiddy rides so the girls had plenty to do.

More Camping

We managed to squeeze a weekend camping trip in.  I was worried the girls would expect to go to an amusement park again but they did not.  They had a great time and were even more excited by our friend Lyn joining us on the Saturday.  Lyn is going through chemo right now but was having a good day so her friend drove her down to see us.  The girls loved spending the day outside playing with Lyn.

Ailsa

Unfortunately Ailsa continues to have problems with her kidneys. We got a phone call today to say we need to go to clinic on Monday despite the fact that we weren't supposed to see nephrology until the end of November. We are guessing that the urine results that just came back are not great. At least they did not say we had to go to emerg. Ailsa was unexpectedly admitted this summer straight from clinic so we know her results must not be as bad as that. We hate seeing Ailsa go through tests. She is at an age and temperament that makes it much harder for her to cope with it. However, considering what she has been through, she is doing amazing. She plays about getting catheters, urine bags and needles with her dolls constantly. We know it is good for her to work it all out. She is so good about getting bloodwork done. She sits so still in one of our laps and tells the staff "Thank you" when it is all done. We are so proud of what an amazing little girl she is.

I would love to post some cute pictures but we are having major issues with our computer right now and blogging has been a huge challenge. It has taken me 90 minutes to get this done. I have tried several times to attach some pictures but the computer just can't do it. So just know that we are doing well here, we hope you all are doing well and the girls continue to be as amazing and adorable as they always are.

Medical Update

Turns out Zoe had a hernia near her appendix which was causing her the pain and her bowel to back up. They could see that the bowel was not completely blocked, so we got things moving along and were able to come home. Zoe was discharged Saturday and back at camp by Monday. She had a great week at camp but on Friday she was running a high fever and complaining of pain again. We went back and forth to the emergency room over the weekend but in the end Zoe was able to come home and is now feeling much better. We are going to Colorado on Tuesday to visit my family. We are holding our breath that we all stay healthy! This computer is being silly so I am just going to post this as is. I was going to post some pictures of Zoe's new walker but I will have to wait to do that when the website is not acting up on me.