Monday, January 27, 2014

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 :)


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.

Friday, January 24, 2014

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?"

Tuesday, January 7, 2014

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?