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.