Thursday, December 15, 2016

December Already!!!!

I can not believe we have not posted since April!  It is very cliche, but I have to say- time really does fly by.  So here is a summary of May and summer:

We have spent lots of time at the zoo!  The girls love it, even when it is cold or rainy or very hot.  Any day of the year, the girls vote to go to the zoo as the day's activity.  Here is a picture from last May when Grandad came with us.

Happy Birthday Ailsa!!!!!

Ailsa loves camping so much she asked to go camping for her birthday in May.  We rented a heated Yurt and had a great time.  It was very chilly out and even snowed!  But the girls had a great time.  This is a picture of them outside when it was sunny.  They LOVE the hammock.

The weekend after Ailsa's birthday was beautiful weather wise- sunny and warm!  We had a great party in the backyard with family and friends.

Ailsa posing with her piƱata.

Summer Fun!!!!!

Zoe went to a camp at her school for two weeks in July and then we had the rest of the summer to play at home and travel.

Felicia (Zoe's nurse) brought over a shaving cream activity one day.  Both girls loved it.  We had lots of days to play this summer at home.  It was awesome!

In late July, we went camping with the girls' cousins in New York.  The last few years we have been able to camp with my little brother from Pennsylvania.  We pick campgrounds that are about halfway between our families and have a great time.  We love that our girls get to know some of their many cousins.

We went to Darien Lake Amusement Park in New York again this year for four days.  We camped in their campground, had the free buffet breakfast and walked to the amusement park every day.  We all had a great time.  Because we are staying in the campground, we can enter and exit the park as much as we like in the day.  This works great because we can play for a few hours and then take a break for a bit at the campsite.    

Our big trip this year was going all the way to Oregon on the west coast of the United States to visit my brother Tom and his family!  We drove to Chicago, Illinois and then took a train from there.  The train ride was 46 hours long going there and 48 hours on the way back.  The girls loved it!

This was the girls fist time going to the Pacific Ocean.  It was very cold...

Ailsa dipped her toes in the ocean and then ran back to snuggle with her cousin Kate under the blankets...

Zoe insisted on walking in the water!  When she got in thigh deep, we made her come out and get warmed up.

This is us on the train on the way home.  Zoe was sleeping again.  The girls loved our sleep car and eating out all our meals in the food car.  Zoe was having some lung issues during the trip so she ended up sleeping a lot but was able to still have a good time.  And we are so grateful that Zoe has an amazing team of doctors who know how important it is for Zoe to be able to travel and have a life.  They gave us puffers to take "just in case" to hopefully avoid having to go to the hospital while on our trip.  The puffers really helped and kept Zoe well enough to stay out of hospital.  This was our first summer with no hospital stays in 7 years!!!!  It is amazing how much time you have when you are not spending so much of it in the hospital!  And yet, time goes by just as quickly, you just spend the time in more fun ways.

Zoe Health Update:

Zoe has had an amazing year!  She has not had an overnight stay in the hospital since November of last year!  Zoe's latest tests show that she has more scar tissue in her lungs so her lung function is worse.  However, she has been able to fight off her infections with oral antibiotics at home.  We continue Zoe's chest physio routine that helps Zoe clear the mucus from her lungs which helps her fight off the infections.  All of Zoe's doctors have been surprised at how well she is doing.  We are just enjoying these moments at home and try not to think about the "what ifs" of the future.  Zoe is getting bigger and stronger so hopefully that is enough for her to be able to keep fighting infections without so much medical help.

Last year, Zoe's liver levels were very high and the doctors were quite concerned.  Zoe's blood tests now show all her numbers to be at the normal level.  The liver is an amazing organ and can heal itself.  Since Zoe's body has not been bombarded with high dose antibiotics and morphine all the time, her liver has had time to recover.  So that was very happy news.

AND even more exciting- Zoe is a whopping 16kg (35lbs)!!!  Since she has been healthier, we have been able to get a little meat on her bones.  It is great to see Zoe's muscles gain strength with her weight gain.  She is becoming so much stronger.  Keep it up Zoe!