Summer Outings!

With Gemma's health continuing to do well we ventured out to enjoy the Summer!

Some of our favourite moments include playing at the accessible water table at Science World, seeing Gemma get so excited swinging with her cousin, and watching her sit on a pony! 

First Family Trip - Cultus Lake

With Gemma being more stable we wanted to go away somewhere for our first family trip. 

We decided on the following criteria:
-Somewhere within 2 hours drive
-Close to a lake with pathways suitable for a stroller
-House accomodations with electricity and wheelchair accessible
-Bringing a nurse with us for night shifts

So we decided on Cultus Lake!

Fortunately we found the perfect house and after the owners had learned about Gemma they were so kind  as to offer us use of their vacation home! It was large enough that my sister and her family were able to come with us.

We brought a bed for Gemma and the nurse stayed with her on the main floor.  We were a block from the lake and there were plenty of walking trails.  There was also a nice hot tub for the adults to enjoy!  Gemma enjoyed looking at the scenery and getting to touch a lake for the first time. 

Gemma did really well for the three nights we were there as well 2hr drive there and home. 

We had such a great time and we are so glad we went!

Summer 2012

The warm sunny weather had arrived!

Gemma's health continued to improve, which was a huge relief because one of the respirologists was concerned in March about on-going complications, however another respirologist was hopeful that Gemma would improve with the warmer months as 'these kids' generally do much better after the Winter months, so fortunately that doctor was right!

Gem's garden was in full bloom and looked amazing after all the work we did.  Charlie had installed a retaining wall and we planted tons of flowers!  We love our garden oasis!  Such a peaceful place for all of us to enjoy.  

Everyday Gemma is showing improvement, both physically and cognitively.  I've said this a lot but for a child we were once told 'wouldn't have purposeful movement' she continues to amaze everyone with all she can do.  Gemma is always learning new things and gaining strength, another thing that wasn't expected of her.  She is playing with musical instruments, extends her reach to play with a ball toy, puts pieces in their place (ie: Mr. potato head), and has started to learn how to colour.  She has always had so much determination so it is amazing to see her come so far.  

With the warmer weather we have had a few family respite visits to Canuck Place and in August we are looking forward to taking our first family trip! 

Spring 2012

As predicted and hoped, Gemma started to clear up during the Spring months.  We were overjoyed to finally have our little girl getting back to 'normal'.  We couldn't believe what a difficult Winter she had gone through, primarily because of not being prepared for what a simple cold could do. 

Gemma's chest cleared up and it was good to see her oxygen saturation improve. It is such a relief to have your child get well when they are sick for months and you realize how fragile they can be and how easily you can take things for granted.

She has been busy being her silly little self, she is becoming more independent, learning new toys, looking at books herself and starting to figure out puzzles.  Gemma is continuing to gain strength in her lower limbs, since the casts came off for her heel releases she has showed drastic improvement in anti-gravity movement.  The weight of the casts must have allowed Gemma to gain muscle strength... either that or they implanted magnets in her heels!  Her legs are making up for lost time by constantly being up in the air!

With the warmer weather we are taking Gemma out for walks and it is nice to see her garden growing, a place we will enjoy in the Summer.

What a Winter!

After exactly a year of being home without sickness, except for her emergency plugging episodes last Summer (mostly mechanical and dry weather), Gemma came down with a series of illnesses causing chest congestion and partial lung collapses. 

To our lack of knowledge we always ended up being one step behind... just as we would get advice on helping her with one thing we could have been doing another... from starting night physio to nebulizers.  Up until this 'cold' we didn't even know what a nebulizer was.  The first hospital admission lasted three weeks, then shortly after Gemma was discharged she was admitted again for another three weeks, and then again for a few days, spanning from December until April.  What a Winter!

To us it was a complete shock, we had heard of other similar children with respiratory complications needing hospital admission over the dreaded 'Winter' months but Gemma never needed this... until December.  It would only last a few days.. maybe a week at most right?  nope!  Weeks! they would say,  maybe months!  Are you kidding we thought??  no way!  Yup..  weeks...  on and off those weeks turned into months. 

One respirologist said to us that her lungs would 'continue to get worse'....  now?... years from now?  we don't know.

One doc said 'Maybe in the Spring/Summer her lungs will 'clear up' and she will do well again'..   we started to wonder when that would happen, we just wanted our little girl back to 'normal', then one day Gemma just 'cleared up'... secretions slowed down.. sats came up.  Yay, finally!!  Thank you God.

I never would have imagined, even though I preached it to everyone that 'a simple cold can turn into something very serious for 'these' children'... make sure to wash well..  Have you 'Mirco-sanned' yet?

Sometimes people say things like 'you need to get her out more'... people don't really understand the balance that you need to always find between quality of life and protection of life.  Of course we want our daughter to 'enjoy life', it is all a balance, finding things she would like to do and what will be safe for her.  Now that she is getting older we can find more things that she can experience.

I really hope that Gemma will continue to do well and we can be a lot more prepared for next Winter.

Gemma's hospital bed
Gemma getting sick on her Birthday

Gemma figuring out how to take off her AFO's

Happy 2nd Birthday Gemma!

Gemma's birthday was over a month in the planning!  Such an exciting milestone deserved a big celebration!

Over 40 people came from near and far to celebrate Gemma's 2nd Birthday on February 18th, 2012.  It was wonderful being able to share in her special day with our close family and friends. 

Gemma's party was so much fun organizing, it was so special for me to do this for Gemma, I loved planning all of the little details!

Unfortunately on the day of Gemma's birthday she came down with a sickness.  It was so disheartening to have to keep Gemma isolated from everyone and not be able to have our visitors spend time with her.  Gemma made an appearance for her cake and a round of 'Happy Birthday to You'.  The next day when she was feeling better we were able to take some pictures.

Looking back over the last two years it is amazing how far Gemma has come.  This little girl was brought into this world suddenly, two months premature, she endured resuscitation, femur fractures and a brain bleed at birth.  This child wasn't considered 'compatable with life'.  This child had no spontaneous movement, including severely tightened legs after her fractures healed, and developed numerous life threatening conditions in her first few months of life.  This child was said not to have 'purposeful movement'.  This child spent 10 months of uncertainty in the Neonatal Intensive Care Unit where many didn't believe in her or felt she would live a life of severe hardship based on opinion and charts.  Behind that yellow door of the hospital room where Gemma spent many months, we were with her watching her grow and thrive.  We could see the fight she had in her and the brightness in her eyes.  Many people who had a negative opinion of her rarely, if never, saw her.  Gemma overcame many obstacles and five surgeries, including a muscle biopsy, g-tube, tracheostomy, vp shunt and heel release.  This same child now has full anti-gravity movement in all four limbs, she can put her toes in her mouth, has two handed play, problem solving skills, communication abilities such as sign language and understanding words, fine motor skills, matches shapes, pulls objects apart and puts them back together, remembers songs and books, makes choices, and has the most amazing little personality!   We always stand by our daughter's side with all our love and support, we are so grateful to be a part of her journey.   We love you Gemma!

January 2012

Gemma was discharged from the hospital in mid January. 

It was an eye opener to us to see how a cold could end up causing Gemma so many problems.  Basically what happened was that the secretions and gunk pooling down in her lower lungs were sitting down there and not able to come up.  This also caused her not to be properly ventilated as the air wasn't able to fully expand her chest, and hence causing a collapse in her lower left lung. 

Within a few hours of being admitted to Children's Gemma was already on oxygen, they had to increase her ventilation settings, as well as her doses of nebulizers, and provide her with aggressive chest physio.  Within a week Gemma cleared up but unfortunately began vomitting which caused her to aspirate milk into her lungs.

The aspiration was really surprising considering that we hadn't seen one before.  It took everything out of Gemma, she was lathargic for a few days and wasn't herself at all.  Her heart rate and resp rate increased drastically and stayed high for a week.  I kept being told not to 'watch her numbers' but I couldn't help it, I knew it was a sign something was wrong.  Fortunately within a few days Gemma started looking more herself and then it took another week before she was back to 'baseline' in order to go home. 

I had been lecturing everyone for a year about hand washing and being careful about getting sick but didn't really know what exactly I was protecting Gemma from until this Winter.  It was really difficult going from having a child that looked so well to being really sick.