Monday, November 4, 2013

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.

Friday, October 25, 2013


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.


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.


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.

Saturday, August 3, 2013

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.

Friday, July 19, 2013

Round and around and around and around we go...

To summarize our life in the last few months would be difficult.  But here is a quick summary:

April and May- Gavin was back in hospital with a second case of bacterial meningitis.

May- current Ailsa has been running low grade fevers and has gone through multiple tests to find the cause.  At one point she had high blood pressure and protein in her urine so she spent a few days in hospital.  Nephrology thinks she may have nephrotic syndrome (which should resolve on its own) or chronic nephrotic syndrome which is more serious.  We are giving her some time and if her symptoms do not get better, she will need to undergo a kidney biopsy as well as a bone marrow aspiration in two weeks.

Currently- Zoe is in the hospital and we are still figuring out what is wrong.  She was perfectly fine on Monday- went to camp and then swimming as a family.  When we put her to bed, Zoe did not settle and was crying loudly which is not like her.  Usually she falls asleep well and is restless later in the night.  I went in to check on her, asked her what is wrong.  She told me she had to throw up and was scared to throw up in bed because she will choke (which she has done in the past).  I picked her up and sat with her and reassured her that she probably just felt full from eating too much supper.  Or perhaps she swallowed too much pool water (both girls were gobbling down the salt water like they couldn't get enough of it!)  We sat for less than one minute when Zoe began violently throwing up.  Everything that was in her stomach came up.  I kept her upright and made sure her airway was clear.  I reassured her that she was safe and I was glad she told me she was going to vomit.  After throwing up 4 or 5 times, Zoe became pale and unresponsive.  We decided to take her to the hospital before she started seizing.  She started seizing a few minutes after we left.  Gavin gave her Ativan while I drove.  That seizure only lasted 6 minutes.  She then fell asleep. 

When we got to the hospital, I dropped Gavin and Zoe at the emerg entrance and went to park the car with Ailsa.  By the time I parked and came in, Zoe was in the resuscitation room seizing again.  That seizure lasted 70 minutes despite being given multiple medications to stop it.  When she finally stopped seizing, she continued have small seizures on and off for another 45 minutes. 

Communicating with Zoe

I am always amazed at how much Zoe is able to communicate.  People look at her and assume that because she is "delayed" and non-verbal that she is not really saying what we say she is saying.  But we know her so well we can read subtle signs.  I am so glad she was able to tell me she was getting sick.  She did not aspirate while puking and since we kept her on her side and suctioned her from time to time during the long seizure, she did not suffer any lung damage.


Ailsa was amazing with Zoe.  I did not want to leave Zoe and Ailsa did not want to leave me.  Since Ailsa has seen Zoe seize before, we let her stay with us.  It would have been more traumatic for her to be separated from us.  The child life specialist kept Ailsa busy in the corner colouring and blowing bubbles.  She made sure she had a good view of us but not a clear view of Zoe.  When sitting in the stroller, Ailsa would occasionally call out- "Are you ok Doe Doe?"  Or "wake up Doe Doe."  She then would say, "No, Doe Doe not awake."  Once Zoe was more stable, Ailsa said she wanted to talk to Zoe.  When we brought her to Zoe's side she kept rubbing her hand and saying, "It's ok Doe Doe.  Doe Doe not all done."  At the time I did not stop to think if it was the best thing for Ailsa to stay with us.  But we have to make these quick decisions as parents and we can only do our best at the time.  If something did happen to Zoe, at least I could reassure Ailsa that she had a chance to talk to her.  I know that won't bring any of us much peace but what else is there to do when this is our life?

Back to Zoe

They found that Zoe had some bacteria in her urine but not a lot.  They started her on antibiotics and sent her for an ultrasound since she was complaining of pain near her appendix.  The ultrasound showed a "structure" in that area but they were not sure what it was.  They decided to watch and see how Zoe did.  The pain got worse- Zoe now needs morphine to be comfortable.  They sent her for another ultrasound yesterday and saw that she has a lot of stool backed up in that area.  So is she having pain from constipation or is whatever is growing in her belly blocking off her bowel?  They are sending her for a CT scan today. 

Good news is that Zoe is stable.  Her lungs are nice and clear.  She does not seem to have suffered damage from the long seizure although it is difficult to assess her right now since she is in so much pain and sleepy.  It is a huge relief that she is not critically ill and her breathing is fine.  Now we will just wait to see what needs to be done.

Ailsa visited Zoe at the hospital yesterday and was very relieved to see Zoe was ok.  Gavin said she kept saying, "Doe Doe, I'm coming to see you." in the car over and over on the way there.  When she got to the hospital she ran to Zoe's room.  After seeing that Zoe was ok, she then wanted to go to the playroom.  Later, I spent some one-on-one time with Ailsa since I had not seen her much in the last couple of days.  Gavin gets very shaky and fatigued easily so he has been needing to rest more.  Thankfully Ailsa is in full time daycare now so she is taken care of during the day.  She started full time in April when Gavin was in hospital and I realized I just couldn't do it all anymore.

If My Life Were A Song

Frequently I have heard songs on the radio and I think, "I should make a mixed tape to listen to when someone is in the hospital and I am driving back and forth and back and forth."  I have not actually found the time to do this yet, but I have made note of certain songs.

Stay- Rihanna

I listed to this song a lot when Gavin was in the ICU and still didn't know who I was.  Both times I found comfort in listening to these lyrics:

"All along it was a fever

A cold sweat hot-headed believer
I threw my hands in the air, said, "Show me something,"
He said, "If you dare come a little closer.""

I often felt like throwing my hands in the air and yelling at Gavin to wake up and remember.  Show me something- show me you are still there.

"Round and around and around and around we go

Oh now, tell me now, tell me now, tell me now you know.

Not really sure how to feel about it.
Something in the way you move
Makes me feel like I can't live without you.
It takes me all the way.
I want you to stay"

Not really sure how to feel about it is an emotion that I feel quite often now.  When ever Gavin or Zoe are not fully there and I am wondering where have they gone?  Will they come back?  Will they suffer more brain damage? I think of these lyrics.  I feel so sad I don't even know how to express it.  I feel so anxious I feel like I can not breathe.

My brother lost his daughter 16 years ago.  I still remember the way his wife and I would drive to the hospital to see his daughter.  She would be chatting with me in the car.  I would watch her other child while she visited with her baby.  And every day when we exited the hospital doors, she would take a big breath in, let it out in a soft sigh and her shoulders would hunch down like she was carrying the weight of the world on her shoulders.  She usually did not talk on the drive home.  This is the best way to describe what I feel.

"It's not much of a life you're living

It's not just something you take – it's given"

I think about this lyric a lot.  What kind of life is it that we are living.  I often feel like our life is on hold, just waiting to actually start.  We seem to go from one crisis to the next.  And although we try to enjoy the moments we do have it is very different from our previous life.  Gavin and I have always tried to be aware of the moment and live in the moment.  This became harder once we had children (everyone knows what it is like to see your children grow so quickly and wonder where the time went).  But more than that, I feel like our life is constantly in crisis.  So now I try to just live this life.  Because maybe at times it doesn't seem like much of a life that we're living.  But it is the only life we have.  So we might as well appreciate it and try to get what we can in the moments we have.

"Ooh, ooh, ooh, the reason I hold on

Ooh, ooh, ooh, 'cause I need this hole gone
Funny you're the broken one but I'm the only one who needed saving
'Cause when you never see the light it's hard to know which one of us is caving."

The hole gone reminds me about what I said before- having this feeling in my chest like I can't breathe.  Like my heart is breaking again and again.

And sometimes it does seem like we never see the light.  But we try to bring the light into our lives as much as possible.  Perhaps it is a very strange memory of the two times Ailsa has been with us when Zoe was crashing.  The first time Ailsa was only 5 weeks old, I put her down on a padded chair, tucked blankets around her so she would not roll off, and concentrated on Zoe.  I didn't even remember she was there until a staff member said, "Oh my goodness- there is a baby on that chair!"  Someone offered to take Ailsa out of the room and I did not see her again for a couple of hours until Zoe was stable and she was screaming for her milk.  I am sure the memory of how well Ailsa did and how loving she was during this recent event will stick with me the same way.  So perhaps this memory would be odd to other people but to us, this is our life.  And it is amazing to watch how wonderful our girls are together.  Gavin's doctor in the ICU once said to me that he would not remember the days when he was out of it and fighting us but that did not mean that he did not benefit from hearing familiar voices to help his brain recover.  I never wanted Ailsa to have to be a part of any of this.  But perhaps she needs to be there for Zoe as much as we do.  And who knows what Zoe feels at the time but we always want her to know we are there, fighting for her until she tells us she can't do it any more.

There are many other songs but this is already getting a bit lengthy and probably a bit emotional for my British rellies :)  Sometimes I need a good angry song to yell along to on that drive.  And sometimes slow songs like this help too.  All depends on my mood.

Perhaps one day I will manage to make that CD.

Friday, May 24, 2013

A Quarterly Update?

So it has come to this- months pass, I don't write, I don't call, I barely email and when I do it is usually just to announce another health crisis for Gavin.  Wow, we are lucky our friends are so understanding! 

Another Round of Meningitis- It Was Fun the First Time...

Gavin ended up with bacterial meningitis again in April.  He had pain and was unwell for weeks before that.  In some ways he was relieved to know this pain was not his new baseline but another infection instead.  That was after he woke up on day 3 in the ICU after being out of it again.  This time I came prepared- I think the staff thought I was the crazy knitting lady.  I actually sat there and knitted while Gavin was in the resuscitation room in the emergency department.  What else is there to do?  Scream, cry, bite my nails?  Been there, done that and I have found it doesn't change a thing.  So might as well get comfy and get something useful done.

Again the ICU staff were amazing.  They were so compassionate and respectful of Gavin despite the fact that he was not able to be very cooperative because of his confusion.  They offered me drinks and encouraged me to take breaks.  They asked about the kids (they remembered us from November). 

So now Gavin is home with his "beep beep" as Ailsa calls it.  He has a PICC line in his arm for IV antibiotics.  They ran all sorts of tests but never found a reason for the first case let alone the second case of meningitis.  They (and we) are worried there will be a third case.  So they extended the antibiotics but there isn't anything else we can do.  Just wait and see.  And wait some more...

The ICU doctor (who happened to be on the regular floor in November and therefore took care of Gavin before) said, "No offense but your husband's health situation is a bit odd."  I laughed and said, "You should meet my daughter!"

Speaking of Zoe

Zoe has been doing amazing!  She has had a fantastic winter.  Couple of pneumonias but no time spent overnight in hospital.  In fact, it has been just over a year since her last hospitalization!!!!  That is huge for us!

So what do we do with all our spare time now?  (haha)


Zoe started Hippotherapy- therapeutic horseback riding in January of this year.  We wanted to get her started for a while but she was not healthy enough until this year.  So far we have been impressed with the results.  We see an increase in Zoe's strength and stamina with standing and sitting.  She also is walking further in her outdoor walker these days.  It is like the therapy is waking those muscles up again so she knows which areas to target when trying to stay upright.  My insurance and birthday money Zoe got this year has covered most of the sessions so far.  I am looking into some funding so we can continue it for the fall.  Zoe does not participate in active physio sessions anymore.  The person at school is there more for helping get equipment in place.  Zoe is in a very physical program- constantly in her walker, stander or the Hopsa sling so she is getting that exercise regularly.  But we need to target those core muscles and get her sitting.  A whole world a mischief awaits her if she could sit up and scoot herself places!

 As you can see from Zoe's face- it is hard work.  Look how little support she needs to sit!  She can sit like this for 2 1/2 minutes now!!!

When the horse is moving, Zoe needs a bit more support.  She gets very excited and only lasts about 90 seconds before she has to lay down.

Making Memories

Our life has been very focused on Zoe's health and now Gavin's health in the past few years.  So we are trying very hard to have some normal fun times with the girls.  It is important to us that the girls get to be kids and have fun.  Both girls are very empathetic and aware of things going on around them.  I never lie to the girls when Gavin is sick.  Obviously I tell them what is going on in a way they can understand and is not too scary.  But despite my best efforts, this last hospitalization was really rough on the girls.  Ailsa started to use a baby bottle (which is hilarious since she refused to use them as a baby!) and Zoe wants to see Gavin constantly to make sure he is still in the house.  It is amazing how much both of them are able to communicate about their feelings.  We encourage them to tell us how they are feeling and hope we can help them process that and move on.  Neither girl likes daddy's "beep beep" although Ailsa does talk about needing one herself.  These days when I flush Zoe's port, I have to pretend to flush Ailsa's afterwards.  And of course she needs a bandaid on her chest, just like Zoe!  

Overall I know the kids are doing great.  They are both starting to settle down and will both be happier once Gavin's pump is gone (so will we!).  So in between these insanely busy and stressful health crisis moments, we make time for the fun and normal things.  Zoe had her spring concert yesterday and we all went as a family (plus grandad and Lyn came too at Zoe's request).  Zoe was an adorable baby dinosaur hatching from her egg which was mounted on her walker.  She had a seizure helmet on her head with an egg covering.  We might have to steal that idea for Halloween one year!

Here are some other great moments from the past few months:

Who doesn't love rolling around in warm diapers, fresh from the dryer...

...and wearing silly hats is sooo funny!
I love how the girls can have fun in such creative ways.  The car seats were in the house (I could insert a boring story about how the car broke down because when it rains...but I will spare you the details).  First Ailsa wanted to sit in her seat and then Zoe let us know she didn't want to miss out on all the fun!

Zoe was sick this day and sleeping on my shoulder.  And of course, Ailsa decided she needed to hop up on my lap too.  Now if only I could convince the girls to snuggle in a bed and I could fall asleep too.  Seriously, they think beds are for jumping- thanks a lot grandad!

Happy Birthday, Zoe!!!

Ok, so Zoe's birthday is in February- but hey, better late than never.  Zoe turned six this year and we had a great birthday celebration at home!  Zoe loved when we sang to her.

 Ailsa was so proud to bring Zoe the first piece of cake.

She was a little less sure when she realized she would have to give the cake up!

Zoe is such a great big sister- she let Ailsa help open all of her presents.

We had an amazing birthday party with friends and family that weekend.  Our respite worker, Alison (in purple sweater sitting next to Ailsa on the floor) brought a friend of hers as Zoe's gift.  He played music, brought instruments for the kids to play along, and even brought a parachute that was great fun for everyone.  The boy and mom sitting next to Alison on the floor are Matthew and Natalie.  Matthew lives near by and we have become close with the family because besides sharing the fact that both kids are really cute- Zoe and Matthew also happen to share 1p36. 

Zoe sharing her cake with Lyn.  It was so nice to have such a fun and happy birthday this year.  Lots of great memories.

Thursday, January 10, 2013

Lessons Learned from 2012

Happy New Year!!!!

I can't say I am sorry to say goodbye to 2012.  But as the year came to a close and on New Year's Eve, Gavin and I found ourselves at a funeral service for a little girl with 1p36, I really got to thinking about how lucky we have been this past year.  You might be thinking, "Lucky????  Umm, didn't you have a ridiculously difficult year?"  And the answer to that is yes we did.  But I also know how incredibly lucky we are at the same time.

This past year has really taught me (again and again) what matters in my life.  We almost lost Zoe in February and since that time I have felt lucky to have one more day with my beautiful daughter.  When the year came to an end and we had a wonderful and quiet Christmas Day at home with no one in the hospital or sick (something we have not had in several years) I knew that in the end 2012 was a good year.  Because at the end of the year, we are all still here.  The four of us, in this house, together.  And that is what really matters.

I learned what commitment really means and what I am truly capable of.  I gave everything this past year to keep my family together.  To keep everyone else going.  And when I came to the end of my rope, exhausted and with nothing left to give.  I found I could still give more.  Because of my deep love for my family.  And my commitment I made to my husband and my children. 

Being a caregiver to your spouse is not easy.  I am not just talking about the physical fatigue of caring for another adult.  What I mean is, it changes the dynamic of your relationship.  This was difficult for both Gavin and I to accept and deal with.  We are still readjusting to me feeling that he is able to be counted on again.  His latest trip to the ICU did not help with the balance!  Gavin's aunt has been a caregiver to her adult daughter with Downs Syndrome and her husband with Parkinson's for years and years now.  I don't know how she continues to find the strength year after year.  But I do understand now that it is love and commitment that makes what to an outsider looks impossible, possible.

And so as 2012 came to a close instead of feeling bitter, disappointed, upset that the year did not go well.  I truly felt lucky.  And loved.  And I hope for better things this year but I know whatever happens, we will handle it.  And I will continue to be grateful for every day I have with everyone in my life.  I hope that I continue to have the strength I need (both physical and mental) to keep on going.  And the strength to make the difficult decisions when the time comes.

I hope you all have a great year too.