Sunday, June 23, 2019

Best Trip Ever!

In May we went on a fantastic holiday as a family.  We drove down to Bayonne, New Jersey (across from New York city) and boarded a cruise ship for a 9 night/ 10 day cruise!!!!!  (It actually ended up being a 10 night, 11 day cruise because of a medical emergency on board). We had an amazing time and the Royal Caribbean staff were great.  When we were booking the staff was very helpful.  I explained that we needed a balcony due to Zoe's current medical needs and there might be days she can not really leave the room so she needs to be able to at least enjoy the sunshine and fresh air.  The woman gave us an amazing deal so we were able to stay in a Family suite with two bathrooms!  Most exciting is that the one bathroom had a full size tub which made bathing Zoe a lot safer.  Can you imagine holding Zoe upright in a small shower stall while soaping her?  Been there, done that and it is just getting too difficult now that she is so big.  The bath was great for the other girls as well.  When Willow was overexcited we threw her in the bath to calm her down before bed.  And the very first night I enjoyed a long soak with a nice glass of wine and a good book.

The staff on the ship were always very helpful and friendly.  Royal Caribbean has an Autism Friendly program (this includes any child with disabilities).  This meant Zoe could attend the play programs by herself and we were given a phone in case the staff had any concerns.  Zoe, being 12, should have been with the teen program but given her needs, we requested that she be in the same play group as Ailsa and the younger children.  They had no problem accommodating this request.  The staff in the play rooms were not the best staff ever.  Overall Gavin and I were not impressed with the programming (the toddlers mostly watched TV!).  And we were not happy that staff did not make more efforts to include Zoe in activities but we did recognize that there were sometimes over 20 kids with two adults!  So I don't think they were specifically neglecting Zoe, I think they just did not have enough staff or training.  It was nice to be able to get small breaks from the children so we could have some time to ourselves.  And Zoe was excited to go to the playroom even if she just sat in her chair and played with her own toys most of the time.

 We all really enjoyed the balcony.  All that fresh air and sunshine was amazing.

 A nice Canadian offered to take our picture while we were on a tour bus trip to see the island of St Maarten before going on our submersible boat trip.

Despite waking up with a high fever, hives all over her body and an obvious bladder infection, Zoe said she still wanted to go on the submersible boat tour we had been planning for months.  Since Zoe can not scuba dive, she was really excited to experience underwater in this special boat.  The divers fed the fish right by the windows so we could see the fish more closely.  Even when the divers weren't there, there was so much to see and the water was so clear and lovely.  We wish Zoe had been feeling better but as always, she pushed herself to enjoy the day.  And we came prepared so Zoe started antibiotics right away and was feeling better in a day or two...until her little sister gave her a gastro bug she picked up in the nursery.  We were glad the trip was a longer one so that despite all of us getting ill, we still had plenty of good days.  
 Of course an exciting trip is an excuse for mommy to buy matching dresses!  The girls loved dressing up for dinner.

The iFly was by far the best part of the cruise for both girls.  When I booked the cruise I spoke to the sales woman about the iFly and whether Zoe could do it too.  So many places use safety as an excuse to exclude people with disabilities.  She assured me that as long as Zoe did not have frail or brittle bones that might break easily then it should be no problem.  Still, I warned Zoe that when we got on the ship, the people running the iFly might say differently.  The woman who worked with us was amazing.  She was so respectful towards Zoe.  She asked relevant questions about Zoe's mobility and potential problems with bones or muscles.  She never asked "what is wrong with her" or even asked for a diagnosis since it was irrelevant.  She asked another staff to be on hand to help with Zoe just in case and she gave Zoe her full minute ride just like everyone else.  Zoe LOVED the iFly.  I am sure the feeling of flying felt amazing to Zoe.  She loves her freedom and anything involving movement.  The woman saw how much the girls loved it and encouraged us to come back another day toward the end of the cruise so we could have another turn.  Initially Ailsa was unsure about flying but she decided to go a second time and she really loved it.  I think knowing what to expect helped her enjoy the second time even more.

Another great part of the cruise was the day we spent at the beach.  It happened to be Ailsa's birthday and it was a perfect day.  The weather was awesome, the beach was beautiful, everyone was healthy and we had such an amazing time.  We walked the extra distance to get to the beach that was less popular so it was not so crowded.  We ate lunch right there at the beach.  Ailsa really enjoyed her special day.  I'm not sure we will ever be able to top that birthday!

So what's our next adventure?  In July we are camping for a week near Niagara Falls New York with two of my brothers, my sister and my cousin and their families.  It is going to be busy and loud so Zoe is very excited about that.  She loves how much noise my family makes!

After that, Zoe is having surgery on July 15th.  She will be in hospital at least a week and will take most of the summer to fully recover.  That is one of the reasons we really wanted to take a trip like the cruise.  Zoe's health is becoming a bit more complicated and unstable these days.  She has bowel issues which cause her a lot of pain and despite spending almost two hours every day giving Zoe enemas, she continues to have serious constipation to the point she has debilitating pain and she has not been gaining weight.  We think/ hope the surgery will solve the constipation which will get rid of her pain and hopefully make her able to better digest her food.  We also hope that solving her bowel issues will help decrease these persistent bladder infections Zoe is getting.  She has had four since March and one of them made her have a prolonged seizure which then caused other problems and necessitated a hospital stay.  Every time Zoe gets sick there is a cascade response in her body and sometimes the result is literally life threatening.  Her doctors were very supportive,  encouraged our trip and gave us emergency medications to travel with.  We researched the ship and knew it had an excellent health care facility and could handle an emergency but we were happy not to experience it for ourselves.  Although, I did get to see the doctor on board with Ailsa who ended up with a throat and ear infection.  As always, I was grateful for our travel insurance!

It was really nice seeing the girls have fun and just be kids.  Sometimes when Zoe is crying with pain, Ailsa sits beside her, reads to her and rubs her head (a habit she has continued since last year in the ICU).  Willow will frequently gather toys to give to Zoe in hopes that it will distract her.  Sometimes Willow crouches besides Zoe and pats her back while saying, "Zoe-oe-oe-oe."  It is such a sweet scene but it breaks my heart.  I loved seeing the girls playing at the beach or on the ship.  They are amazing sisters and I am glad they have these memories and photos to enjoy.

Monday, June 3, 2019

Where Have I Been?

There have been some really heavy things happening in our life and some really great things too.  It's difficult to sit down and write what is on my mind.  I don't want to make my posts too heavy, but I also don't want to pretend all is well.  I have heard from many parents that they appreciate my honesty.  My struggles have brought them hope because they see the struggle and then they see the joy that is still possible.

Ailsa, Ailsa, Ailsa

Ailsa is starting on a cholesterol 8 years old.  We knew this was coming, we have seen her numbers go up, up, up.  We knew this day would be here.

And still...

Still...spending 8 hours at the hospital today to confirm that she needs to start this medication now, right now, today has broken my heart.

Again and again my heart has been broken and I take it in stride, I really do try to.  But some blows really hurt and I just feel so helpless.

Ailsa has asked that I not share a lot about her health issues on Zoe's blog and so I have not.  I respect her privacy.  But it does tie my hands when I have so much I want to express.  And so, in deference to Ailsa I will keep it short and simple:

Ailsa's kidney disease is progressive.
She is doing way better then they thought she would.
She is doing way better then other children with her syndrome.
And still.
Still- her kidneys are failing slowly and eventually she will need a transplant.
As her kidneys fail slowly, they are not able to filter out certain things so it causes all sorts of other problems.
We knew this was going to happen when she was diagnosed but still... really fucking sucks and there is nothing I can do about it.

Ailsa does everything right- she eats well, she takes all her medications, she avoids the foods she is supposed to and still...

Still her cholesterol is twice that of a 400 pound person who smokes and drinks all the time.

And still her kidneys slowly fail.

Every appointment shows her numbers getting worse and more medication is added and Ailsa cries at the unfairness of it all.

And so today, my heart is broken but I decided to start blogging again.

We went on an amazing trip as a family recently and I want to post all about that, but first I had to get this off my chest.

Zoe is also struggling and will have a major surgery on July 15th but perhaps more on that another day.  For now, I needed to just start sharing again.

Zoe was upset last night because Ailsa had her appointment today.  She said she wanted to go with Ailsa, we explained why this could not happen.  So Zoe asked that we bring her special turtle (the one she bought with her own money during our amazing holiday last month) to the hospital today for Ailsa to hold on to.  She also reminded me to bring books and toys for Ailsa and to give her a hug (like I would forget!). Zoe is always looking out for her little sister, just like big sisters should.

And still...
Zoe is a 12 year old and reminded Ailsa that the turtle was not hers to keep- she has to give it back at the end of the day- that just made me laugh and laugh.

I love those girls.

With all my broken heart.