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)

Hippotherapy

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.

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.   

More medical stuff for Gavin

Hey everyone,

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

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

Playing with my Sister

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

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

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

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

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

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

Now, This is the Life

Busy, Busy, Busy

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

Zoe Medical Update

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

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

Summer Plans

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

Now, This is the Life

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

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

 Zoe relaxing on grandma and daddy.

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

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

"Friends in Low Places"

Here's to Garth Brooks

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

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

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

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

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

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

Relaxing Spa Day at Lyn's

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

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

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

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